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We could all stand to be a bit kinder to others in our daily lives. Just because you don’t see someone suffering in an obvious way doesn’t mean that they aren’t in pain. And though it’s natural to make quick judgments about others, we should also strive to get to know people’s stories, who they are, and what problems they might be dealing with. Life, and people in general, can be far more complicated than they first appear.

For instance, you might hear someone call a person ‘lazy’ or ‘distracted’ because they have difficulty accomplishing even ‘easy’ tasks. However, if you dig a bit deeper, you might realize that this particular person may have a medical condition that’s not obvious to everyone around them. A condition that makes it incredibly difficult to do even ‘simple’ things.

Internet users opened up about their non-obvious medical conditions that their friends, family, and coworkers often stigmatize, in a very open and honest r/AskReddit thread. Read on to see just how difficult their day-to-day life can be, whether we’re talking about ADHD, arthritis, or a number of diseases. If you have a medical condition that you feel is widely misunderstood or misinterpreted, Pandas, feel free to shed some light on it in the comments, so everyone can come away from this having learned something more.

#1

30 People With Non-Obvious Illnesses Share The Reasons People Get Mad At Them I've had people become very offended when I get very upset at seemingly normal things, like rapid movements in my direction or being yelled at. I'm not being an emotional cry baby, I literally have PTSD you f**k

SeveralFools , Brian Lundquist Report

KombatBunni
Community Member
3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

Ohh I feel your pain. I have it as well and I can’t stand loud noises or crowds because of it, and you never know when something will trigger it.

Robin DJW
Community Member
3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

Oh me too. Are loud noises, sudden noises, big crowds symptomatic of PTSD? I did not know. Now all I need to do is figure out how I got it. I think I know.

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Helen Waight
Community Member
3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

PTSD as well here and I had to leave a work forum because someone basically said I was being a whiny crybaby for genuinely being triggered.

Sarah Spencer
Community Member
3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

I have PTSD and am autistic. Which is a winning combination if there ever was one! I'm lucky enough now to have an employer that understands and accommodates where needed, but I can still be occasionally blind-sided by certain specific triggering situations. I have fairly decent coping strategies in place but nothing is perfect. If anything - people sometimes get a bit too used to me being able to cope and are then annoyed and upset on the odd occasion something catches me out. One of the things I have learned (via a lot of therapy) is that stressors can build up over time, so I can manage a lot better if I am putting aside some proper time to rest, reset and relax. But if I get really busy at work and fill all of my down-time with activities - it's a good chance the next stressful trigger is going to floor me because I'll have zero reserves to deal with it

Rens
Community Member
3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

I feel your pain, I have the same x Stressors can still catch me unawares and I had a public meltdown two weeks ago which was very embarrassing to me

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Rowan/Vin
Community Member
3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

Yup, not PTSD but super bad anxiety. No crowds, needles, tight spaces. People yelling sets me into a panic attack. It sucks.

Hobby Hopper
Community Member
3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

It's not okay for people to yell at you though. We've got to de-normalize that behavior. If you've got a problem with me, let's discuss it like rational adults, not like toddlers throwing a tantrum. If you're just yelling because there's ambient noise you have to talk over though, I get that.

Dan B.
Community Member
3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

PTSD cannot be predicted when it pops up. I react very poorly when in groups of people, and even worse if yelled at. In my youth i would just start crying, feeling like i was a coward or worthless but thats not true. I pick very carefully the people i want in my life now, bullies and the like are not welcome at my steps. Don't allow yourself to be mistreated, you do deserve to be treated like you NEED and want to be treated.

Penny Kemper
Community Member
3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

But do they know that? Because you don't go around telling people that do you?

Emerson McEwan
Community Member
3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

oof literally. my wife and son know that loud and hectic places like main event are triggering to me, but coworkers and other family members take it as a personal affront when I don't want to do things like that

Sammie 19
Community Member
1 year ago Created by potrace 1.15, written by Peter Selinger 2001-2017

I have massive CPTSD and awful anxiety when it comes to men. I've been r a p e d many times since the age of 8 and I've found it incredibly hard to trust men. I'd finally gotten to a stage about 5 years ago that I could manage to be in a taxi with a male driver and I'd made a male friend who I had gradually started to trust but then he drugged and r a p e d me. Since then I've decided never to trust any men. No male taxi drivers, male doctors or any type of male professionals and definitely none allowed in my home. For the past 5 years I've had a wonderful female taxi driver (I'm disabled and in a wheelchair) and I worked it so all my appointments were scheduled the days and times she is working. Now I've been informed that I'm no longer allowed to say I can only ride with a l female driver. Which means no hospitals visits. It's a total nightmare

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    #2

    30 People With Non-Obvious Illnesses Share The Reasons People Get Mad At Them I have Crohn's disease. The fatigue and the joint pain can be debilitating. I have been accused by family members of being lazy because somedays I can't get motivated and do even the smallest of chores. Most people don't realize that with Crohns and Colitis the symptoms aren't just intestinal. The inflammation can effect your entire body. It breaks my heart because I really just want to be normal and capable.

    candmjjjc , drian Swancar Report

    Minath
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I also have Crohn's and it's like living in an eternal hell, I'm only 40 yet I had to give up working 10 years ago. I've had over 20 surgeries including having a permanent stoma, I've been left with chronic pain that is so bad I can't get out of bed most days. I have been called a lazy b***h and been accused of faking it so I can get benefits instead of working. I would not wish this on my worst enemy.

    Tamra
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I'm very sorry you have to endure such an illness. It sounds really terrible. I hope you're able to at least have moments of peace and relief.

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    Kevin Tolmich
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I'm with you my friend. I have been diagnosed with Crohn's for over 20 years. It started mild but got progressively worse. After a few feet of intestines were removed a year ago, I feel a little bit better. But the joint pain is chronic and doesn't stop. People don't get that part of this crappy (sorry for the pun) disease.

    UpupaEpops
    Community Member
    3 years ago (edited) Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have IBD. In cold wet weather, my already very weak wrists get swollen and hurt so bad, that it's painful to the point where I can't lift a full glass of water. I also can't do twisting motions during those times. The number of men who think I am hitting on them when I'm asking for help with opening things is just staggering. It's already humiliating enough to have to ask for help with the simplest things, it would be really nice if people could be understanding about it.

    idrow1
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have severe fibromyalgia, a wrecked back and arthritis everywhere. People who know me know this, but always act dumbfounded when I say I'm unable to do something and I'm in pain. They know I spend 90% of my life in bed and still they don't get it.

    Chrissyfox
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Me also. Started when I was 28 and as a nursery school helper, I couldn't even hold a pair of scissors. I also have IBS, which doesn't sound so bad, but the pain can be debilitating. Add adult-onset Asthma to the mix and I was a basket case during COVID. I also have two titanium hips. Sometimes I just want to sleep and sleep. My family are great, but because I look okay, they sometimes forget and definitely fail to empathise.

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    Kay Meurig-Bowden
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I hear you. I have Crohn's too. If people really understood about how it really affects us, they'd soon think again. The fatigue, joint pain, depression, skin conditions, how it attacks the whole digestive system from mouth to bottom; let alone the other health conditions that can accompany Crohn's (and other forms of IBD) are totally misunderstood and/or neglected by the general population.

    Dan B.
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    My wife suffers from many ailments that take everything she has just to wake up. Getting through to my mother and so, so many other people (let's be honest it is everyone)that she is NOT lazy she is very, very ill is all but impossible. If people don't SEE it with their own eyes they think it just doesn't exist or it can be cured by "drinking more water" or "going to the right doctor". Well guess what, we've seen them all. Telling people how to fix their illnesses you know nothing about is like adding insult to injury, because those people can get in your head. Don't let them, we have to keep batting them away and find comfort in those who understand, because they are out there.

    Madhur L
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Have Crohns along with Ankylosing Spondylitis. Do I need to say any more :(

    Rens
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have fibromyalgia and ME, I also have IBS which is not nearly as bad as Crohn's but I have a load of food intolerances and constant digestive issues; when you have invisible disabilities people don't know what you're suffering.

    Tui Tasman
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Hi Me too I have Crohn's I totally feel you It's horrible. I worked up until a few months ago but only part time for years my supervisors/manager told me I didn't deserve my pay or responsibility because I was not "dedicated" enough. I had to quit after catching covid which seemed to make everything worse. My family are very classic working class no nonsense people to whom "hard work" is very nearly a religious ideal, and depression is an excuse, so I've had the classic "you're just lazy" and "pull yourself together" . Very few people understand how debilitating it can be in everyday life trying to do ordinary things and how depressing it can be to fail at doing those things. No one would endure this just to be "lazy" Like the person who wrote this I just want to be normal and able to have a normal life and most of all be treated like I'm equal to any other person and not despised or pitied. Love and best wishes to everyone here reading this.

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    #3

    30 People With Non-Obvious Illnesses Share The Reasons People Get Mad At Them I have ADHD I tell people; Imagine brains are like browsers. A normal person can have several tabs open at once, switching between them as needed. An ADHD brain has just 2 tabs. Whatever you're doing right at this moment, and a tab just for daydreams that you can't close that plays audio in the background. Give a normal person a task: "Do your laundry at some point today" and they'll pop it in a new tab and get to it when they're closing tabs later. Give an ADHD brain the same task, and their one functional tab becomes "remember to do laundry" until a new task pops up, at which point it gets overwritten. It really sucks as a kid because it's functionally identical to forgetting, and if you've ever had parents, you know "I forgot" is not an acceptable answer.

    lurklurklurkPOST , Robina Weermeijer Report

    TheAquarius1978
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Oh believe me lol i know the felling, i don't have ADHD, i have Asperger syndrome, and worst i'm from the 80s ( when Asperger didn't existed ) which meant i was just had bad behavior, was lazy, and rude lol, and my Mother was a firm appologist in beating my a*s everytime i " missbehaved " ...

    Jamie Mize
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I am right there with you and had the exact same experiences you did, only I have both, so double the "pleasure", double the "fun".

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    Lydia Languish
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have 2 tabs and about 100 pop-up ads

    Robert Trebor
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I get brain worms - tunes that just will not leave.

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    Ray Ceeya (RayCeeYa)
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    100% It was worse in the past before it was a commonly recognised disease. I had a teacher who would not just punish me, but punish my friends too. He was a horrible person. He drove my friends away from me so he could enhance my suffering. Anytime I think about him, I'm 10 years old again and I start to cry.

    VodkaInMySweetTea
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Yes! This! This is why I have lists. Lists upon lists. I have lists to organize my lists. Because if I have multiple tabs open, my brain is frantically flipping though them in a panic, knowing that if I blink, they'll all be gone. Literally blink, or walk into a different room, or god forbid someone asks me a question. The other tabs are gone forever. But if I can get them out of my head and safely written down so I don't lose them, I can go back to just the background music and idle chatter tab while I accomplish one thing at a time.

    Alice
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    my boyfriend has ADHD and he is 36. at first I did not realise it, that he doesn't talk about it, but I think you just have to love and accept the person as he is. We get to find his keys and wallet all the time, it is not a big deal. He has a high flying job and a PHD. I think ADHD is just a different way of thinking. It can be hard, if you don't know about it, but it comes natural once you learn what it is.

    Sarah Stalder
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Yes, ADHD isn't a matter of intelligence. It just makes utilizing that intelligence and education more difficult. Since I can't use the meds, I've had to embrace my ADHD as just part of who I am.

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    Johane Roberts
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have never heard ADHD being described so accurately! Going to use this description in future.

    Fluffy mommy panda
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I know this feeling. It hard for me to go to sleep at night because I have so many things passing through my mind at times. Even when I am driving. I'm use to it. And I notice everything while driving. Which is good but kinda bad at the same time. It is hard but I have grown use to it. And the hardest thing is sleeping......

    angied4liberty
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I get it (at 1 AM after working 10 hrs but needing to be up again in 5.) Can't fall asleep to TV or music either. My brain refuses to hit the off button.

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    Jaekry
    Community Member
    3 years ago (edited) Created by potrace 1.15, written by Peter Selinger 2001-2017

    I think I have ADD (we stopped the official test when I got the maximum score...I had at least 30% of q left.) Doesn't matter if it's official, I still need to cope. Anyway,... 2 tabs?? More like 38... Even when I wake up at 0215 in the middle of the night. My head feels like a pinball machine where every ploink is an intrusive thought :(

    Stephanie A Mutti
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    This is a problem for my kiddo as well. I just want her to be able to complete one task and hold the other task to start upon finishing the first. It's a struggle for her.

    IDGAFabtyourfeelings
    Community Member
    3 years ago (edited) Created by potrace 1.15, written by Peter Selinger 2001-2017

    I didn't know I had ADHD until I was in my 20s but growing up I always thought it was deja vu. Where it feels like I either did it before or everything I thought I knew was always slightly off from the "truth". The date of the assignment, Feb 26th...nope it's 22nd. I put my homework and lunch in my backpack. Nope, I left it next to wear my backpack was because I got called and forgot to put it in. I take the dogs out and suddenly it's a maze, but turns out I was just lost and walked around the same block and forgot I did. I use to forget my wallet, my keys, my phone...so I would be unable to call or get home because i would forget the direction I was walking. I was constantly feeling like there were ghosts and paranormal activities that were affecting my world, but turns out it was just ADHD and being superstitious. It doesn't help that there is this brain fog that doesn't quite go away until you're older especially when you feel like you're stupid most your life so it affects your self-esteem along with everything else you develop this tunnel vision.

    Jode Mode
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I’ve thought I was a total clusterfuk my entire life until I was diagnosed properly… at middle age. Not just anx & dep, but the whole realm of challenges; And it has 100% fukked up my self esteem throughout life. It’s still hard to not hate myself. Gawd - if I was diagnosed as a kid, my whole life would be completely dif.

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    What seems incredibly simple for one individual might be extremely hard for another. There’s a bit of an understanding and empathy gap here. People can find it hard to put themselves in someone else’s shoes concerning tasks and activities that come naturally to them. However, we can start to understand what patients might be feeling by considering what we, ourselves, find difficult, and applying it to other areas in life.

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    Something else to take into account is the amount of chronic pain and discomfort some folks might be dealing with every single day. We have to think back to the times that we’ve had to function while in pain if we don’t ‘get’ how others might have trouble doing seemingly ‘easy’ tasks. Have you ever had to work or go to school with a toothache, broken arm, or severely upset stomach? Now imagine having to get things done with that (only possibly even worse).

    Then there are the psychological factors to consider. People with ADD, ADHD, Asperger’s, autism, extreme sensory sensitivity, and other disorders provided the internet with a window into their lives in the r/AskReddit thread. The best way forward is to be as kind as you can to everyone you meet, no matter if they’re fit as a fiddle or have to deal with lots of obvious and not-so-obvious medical problems.

    According to psychotherapist Silva Neves, people have two different, constantly-competing instincts within themselves. One for kindness. The other—for survival. Our brains are hardwired to reward us when we’re acting in a social and altruistic way, he told Bored Panda a while back. A the same time, we’re also prone to selfishness because it’s directly linked to our desire to survive.

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    #4

    30 People With Non-Obvious Illnesses Share The Reasons People Get Mad At Them Migraines. To the point of pitch black room, no noise, no aromas or odors, ice cold and ice packs on my head. Can’t see because of all the flashing lights and dark spots in my vision. I hate going somewhere and someone is wearing some cloying sweet perfume because I will get nauseous and flashes start and I could be down for days. Longest migraine was 7 days; had to have i.v. therapy and shots in the butt for the pain.

    wildonthefrontier , Matteo Vistocco Report

    Susie Elle
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I've had periods of migraines when I was younger, ocular ones. Couldn't see anything except for weird lightningbolt flashes, immense headaches and vomiting until I felt better. I can't imagine how hard it must be to experience them on such a regular basis and for such a long period of time. I have a stupid question: doesn't there exist any medication for migraines?

    Helen Waight
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Frequent migraine sufferer here. There is medication both preventative and acute but like all things brain related it doesn’t always work and the mechanism behind migraines still isn’t fully understood. I was on beta blockers for years to try and stop them, didn’t work. Hormonal contraception made them worse. Triptans can sometimes stop one. Botox injections in the head next.

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    Kayjunmoon
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Had my first migraine at 4, I am in my sixties now. There are different types and all of them are debilitating. Longest one has been about 10 days. Many people do not realise this is not a headache, it is a whole body thing. Medication has improved over the years but the side effects are horrid.

    PegLegShrek
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    The worst this is people throw around the word like it's nothing. They think that migraines and headaches are the same!

    Jason
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    My father's girlfriend told me I just need to pull my hair and drive to an acupuncture place if I was having one. Meanwhile I am constantly projectile vomiting when I am awake and sleep for days to avoid the pain.

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    Gina Babe
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I hate when people say it's just a headache. No. I literally feel like my body is possessed by the devil. Head, vomit, light. It's awful!

    KnightOwl
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Yes! I have chronic cluster migraines that can be triggered by loads of things the worst being lots of noise or flashing lights. I never go to bars, restaurants or nightclubs despite my friends all going to them regularly. I don't even own a TV because they are a huge trigger and my flat is always dark because bright lights are a no no. I struggle when visiting family because they always have their TVs on, plus my (7) siblings all have kids so they often have music, tablets, phones (etc.) on at the same time as well as lots of people talking and phones ringing it gets really overwhelming and no matter how much I beg them to turn things down or turn the TV off because no-one is watching it they never do. (They shout over the noise rather than turning it down) Family events are the worst because I'm forced to go and always suffer for weeks afterwards. I love my family and enjoy spending time with my 14 neices and nephews but the migraines it triggers are brutal and can last for weeks.

    Chucky Cheezburger
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I am the same as you. Flashes of light, particularly orange, can trigger mine along with just a changenin the damn weather. Sometimes I can tell Im going to get one before it actually starts.The visual aura sucks but at least it's a warning.The mental "offness" of the kind I get is so much worse.Sometimes I have trouble being able to tell if reality is real...its like I have memories of things that couldn't have happened.

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    idrow1
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    These are brutal. My longest is 11 days and I thought I was going to go insane.

    Your Neighborhood Alien
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    My mom has this. But it's everyday, and she's allergic to aspirin. :(

    JessG
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I’m thinking that Aspirin wouldn’t even touch a migraine. If it’s actual migraines she has, then surely she’s on some kind of prescription? Because they are excruciating

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    Kathy Buchanan
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    The problem with Migraines is that it has become the same as a headache to many. I know people that say they have a migraine, meanwhile they are sitting and playing a video game or browsing on phone. They have NO idea wheat a migraine is!

    Agent 8433599
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have migraines to, though not as bad but close.

    Isabelle Robson
    Community Member
    3 years ago (edited) Created by potrace 1.15, written by Peter Selinger 2001-2017

    I used to get occular migraines, then I was diagnosed with high blood pressure too & given tablets for it....I've not had an occular migrane since....touch wood.

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    #5

    30 People With Non-Obvious Illnesses Share The Reasons People Get Mad At Them Celiac disease. People joke about gluten free being a fad diet for basic bi**hes, and then get really irritated with me when I request that when dining out together we go somewhere safe for me to eat. I’m so sorry but PLEASE don’t veto this restaurant just because it doesn’t quite hit your craving. It is literally the only safe place where I can eat something on the menu.

    MollFlanders , Julia Tsukurova Report

    Laura Ketteridge
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    When eating out, I will always say to the waiter that I'm gluten-free, and even a tiny bit of gluten will cause problems. From time to time, a chef will come out just to check whether is is a diet-of-choice, or medical need. They have all been brilliant.

    lexan66
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    As a chef, I always check for level of sensitivity to be sure I'm not going to make someone sick. I guess I'm hypersensitive because I am celiac.

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    Rens
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I think gluten free foods should be discounted for people with celiac disease, because they have NO choice. People who are gluten free as a dietary choice should pay normal prices

    Marnie
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Nice in theory, but you've have to put this in practice for every disorder and disease and it's just not workable.

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    Doris S.
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have celiac disease too and I feel you. Same here

    3 Owls In A Coat
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    My best friend has celiac disease. We found out after her 17th emergency room trip in 9th grade 🙃 her mum had celiac too so they uaually ate gluten-free at home, so she’d never noticed that much until she was older and started eating out of the house more, they thought it was IBS at first. Now she lives in Japan which is perfect for her - traditional Japanese cuisine isn’t very gluten-heavy and she gets by just fine :) because of her, I really don’t appreciate the stigma that has come from the trendy gluten-free diet - like this girl literally needs to go to the emergency room for the rest of the night in intense pain if someone accidentally gives her a shot that contains a splash of whiskey, she’s not faking it.

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    Penny Kemper
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Cross contamination (like in allergies) can cause problems too.

    E B
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Yeah, it's like people don't understand that they can say they don't like to eat a thing, or don't want to eat it, so they resort to lying and claiming that thing will make them ill, and then people who will have an actual bad physiological reaction to eating that thing are accused of crying wolf and not taken seriously. I have been blessed with a cast iron stomach, so I can actually find something on almost any menu that I'm ok with. Which means that I let my friends/family who have allergies say where they want to go and what they can eat because I have it easy.

    Lsai Aeon
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    To add more to this. Celiac is an auto-immune disease, having one auto-immune disease opens you up to more auto-immune diseases developing. On top of that, there are added medical issues/complications similar to the ones associated with Crohn's disease, especially if you are older when diagnosed with Celiac

    Jods
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Away days/training days at work. Coeliac food - baked potatoes. Nowt else.

    Miss Frankfurter
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Very painful and continuous episodes because you end up eating something that has gluten even crumbs on it, like toast made in a toaster everyone else uses, for example, it does damage to the digestive system.

    Susan Betz
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    THIS. One of my children and I have food allergies and my wheat allergy went full-blown celiac in my 50s. It's brutal, especially if some gluten "sneaks" in. I cook most of my meals at home and I'm extremely careful when I go out. Hunger hasn't killed me yet.

    Vae
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I had recently (within the last 4 months) found out I have celiacs (we didn't know what was causing massive issues regardin food). The VAST amount of restaurants I cannot have absolutely anything in, is beyond what I could have even imagined. Favorite desserts? Many are not an option. For once, I have been paying attention to what is on the menus, in case their fries share a frier with anything breaded. or if they have GF options. Or to nutritional labels on food at the grocery store. I admit... to reading people's deep descriptions of the foods I miss. So yeah... I know this feeling. A great many people I know request I eat beforehand, just because they are annoyed with finding a GF option. so... I feel that. Deeply.

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    #6

    30 People With Non-Obvious Illnesses Share The Reasons People Get Mad At Them Arthritis in my hands knees and spine and Bipolar 1. Other stuff too. People (my wife's dad most recently), think it's seriously okay to make fun of the noises I make when I have to stand up. I refuse to take opiates. Standing hurts. A lot. He will literally talk s**t to my wife when I'm out of the room about how I'm just a Pu***. That it's just laziness. I'm also a large guy. 5'11 280lbs fairly muscular (pretty solid dad bod) they get mad or tease me because I won't do things like carry shingles up onto my roof, and that I paid a neighbor to do it. Arthritis is degenerative and painful. Just because I look this way doesn't mean I can lift and carry. The bipolar? I have psychotic features. Hallucinations (audio/visual). The minute people hear the word "psychotic" attached to anything they run away screaming. I've lost close friends, relationships, jobs (I have a hard time finding and keeping one. Another thing that gains ridicule), and have family that won't let their kids around me because of a diagnostic term. I've never hurt anyone. My visual hallucinations are usually dogs and rats that I pet idly if I'm not focusing and distressed. My audio hallucinations are literally audible music, or mostly kind voices encouraging me to do better. I'm not suddenly going to be a serial killer. This has been a thing since I was a child. The ONLY person I've hurt outside of a fair fight (I was a bar hopper for a little while in my youth) is MYSELF.

    PossessionNo6878 , Towfiqu barbhuiya Report

    Madeleine
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    “The minute people hear the word ‘psychotic’ attached to anything they run away screaming.” It sounds like it’s time to experiment with not attaching that word. Unless someone becomes very close to you and is trustworthy, they don’t need to know details about your condition.

    Deborah B
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Have you tried defining it to people as "I have psychotic bipolar but it's hallucinatory music and animals type psychotic, not seeing demons inside people psychotic." Because people don't know what you are experiencing, and a lot of their info comes from films and pop culture. I've been around someone having a psychotic episode where she did see demons hiding inside people, and coming out of mirrors. It was legitimately frightening, both because she was terrified, and because we were concerned someone would get hurt.

    The Mom
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Osteoarthritis, ostiopenia, copd, anxiety, manic depression. Family thinks I'm faking it even though I've been diagnosed and in treatment. My poor brother has since been diagnosed with same things but he's not faking it.

    Dan B.
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    In a few years when the pa in-law gets his comeuppance with joint issues and other pain and mental anguishing ailments, you have an opportunity to kill him with kindness and understanding. I hope it will eat him alive the way he treated you. Arthritis is REAL. Keep doin you.

    Izzy Curer
    Community Member
    3 years ago (edited) Created by potrace 1.15, written by Peter Selinger 2001-2017

    I'm bipolar. Can confirm. For me, it's not like it's an all the time thing. Every once in a while, I might have an episode, or more like a pair of episodes that lasts for about a month. Sometimes I only have one episode a year, or sometimes a little more often. It seems silly to me to be medicated all the time for something that happens so rarely. It's also just, idk, who I am. This is how my brain works, so deal with it. Like, 'Sorry I'm not you.' (Not sorry.) I've been like this since I was a kid. For me, all that happens is I tend to shut myself up in my room. I usually just get very creative, and don't talk to anyone, and I giggle a lot. I don't yell or scream or hurt anybody. Are people thinking of Borderline when they think we act like that? Most people don't even know what's going on with me unless I tell them, and I make sure to let my husband know whenever I feel one coming on so that he knows what's up. I'm actually more productive during a depressive episode. As for mania, it's like I can't make my brain focus on anything except whatever creative thing it has decided to focus on. For instance, I don't usually feel comfortable to drive, because I'm afraid I'll get distracted. I don't know if I actually would, but I don't do it anyway. Other minor tasks become very difficult or impossible. Trying to make myself eat enough calories during mania is a nightmare. Even though I've known about my condition for a while, I didn't start to mention it to people until recently. Tbh, I didn't even really know there was a stigma, since it seemed like such a non-issue in my life. Boy, was that an eye opener once I started talking about it. I've even had doctors become dismissive of everything I say as soon as they learn I'm bipolar. People think it must mean you're a crazy witch all the time. That you're irrational and mean. People who know me know that I'm not. Oh, and the hallucinations are very much a thing. Mostly audible for me. Usually music, or windchimes, or weird animal sounds. Or sometimes the room starts shifting out of the corners of my eyes. Or balls of light that look like they're floating in midair.

    Miss Frankfurter
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Please please please don’t ever stop taking your meds. Just because you have a period where you feel ok does not mean you don’t need them. If you keep taking your meds even though you feel fine the point is it can help, not entirely prevent, but help the highs and lows don’t happen as much. They’re what help you stay in the ok space. Your illness will always be there. I have Bipolar II and sometimes I wonder who the real me is. But I look at it this way. If I’m not taking meds then my brain is not able to work normally. There is an issue with my brain that is preventing me from being me. Unfortunately I can’t take lithium, but for the time I was on it, life was a revelation I had never experienced before. If this medication gets me here, and helps me as much as possible stay here, I’m never stopping taking it. A big smile and a deep sigh. I’m finally me.

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    Colin Timp
    Community Member
    3 years ago (edited) Created by potrace 1.15, written by Peter Selinger 2001-2017

    Dropping weight helps a ton. I have osteoarthritis, mainly in my knees and shoulders. I dropped 100 lbs, from 275 to 175. The improvement has been better than narcotics could offer. Also, some medications can cause bone deterioration and weight gain. There's new meds that can help with that.

    Agent 8433599
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I hear music randomly too, though I don't think I am bipolar

    Demongrrrrl
    Community Member
    Premium
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Can you just say "bipolar" and leave out the "psychotic"? I think most people aren't 100% sure what Bipolar entails.

    Miss Frankfurter
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    There are two kinds of bipolar. Bipolar I, which is the most severe. Yes, it can be severe enough that they have symptoms that are psychotic. There is so much more to it. I have Bipolar II. It is less severe but has similar symptoms. We tend more towards depression more than what’s called hypomania. Bipolar I is the other way around. We have way past monkey brain. They go so fast they don’t really connect at all sometimes. We need much less sleep. Have abnormal energy. Make really bad decisions because we think everything is fine and everything is a good idea. Oh the money mistakes you have to get yourself out of. I also go from calm to a rage in a second. Totally unreasonable. Never hurt anyone. No hallucinations of any kind. Depression is crushing and can be for so very long. I can switch overnight in my sleep. It’s like living on a roller coaster. My life is like a box of chocolates. I never know who I’m going to be. Thank god I have understanding supportive friends.🙏

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    StarlightPanda!
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Bipolar 2 here. People are cruel. Family also barely understands. I have type 2 diabetes too (not obese. Runs in family. Never been obese,) and if I could choose to get rid of one, it would without any hesitation, be the bipolar.

    TJ
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    The stereotype is very annoying, I live with one who has this type of disease. It’s not fun to see it happen, we don’t tell about it. It doesn’t need to be mentioned I think, as peoples views become skewered.

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    People tend to worry that by helping someone out, by being kind to them, it can somehow backfire on them. However, there are benefits to kindness, too. Altruism can make us feel good physically, it gives us a sense of purpose, and it can raise our own self-esteem.

    “It [kindness] is also good for others, obviously. So kindness is actually something that we, humans, are naturally driven to be. “The sense of kindness is in competition with our survival mode, so, as human beings, we tend to live in contradiction, between kindness (opening our arms) and protection (closing our arms).”

    Meanwhile, the Action for Happiness team previously explained to Bored Panda that altruism is closely linked to our own happiness. When we’re kind to others, when we act in a selfless way, the reward center in our brains gets activated.

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    “Small daily actions one at a time can help us to make altruism a lifetime habit. You could start out small by deciding you are going to smile at everyone you meet or pay three people a compliment today,” the AfH team shared how someone can start becoming kinder to others in their daily lives. You might decide that you want to volunteer for a good cause, help an elderly neighbor, or give money to charity.

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    #7

    30 People With Non-Obvious Illnesses Share The Reasons People Get Mad At Them I literally have a memory problem, and when I say that everyone acts like I'm joking. Until we are mid sentence and I have no idea what we are talking about. Sometimes people get mad. I can't control it. It's annoying to me too, not just you!

    Boring_Blueberry_420 , arritos Mexican Soda Report

    Amanda
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I feel this. I have fibromyalgia, and the fibro fog is real. I forget names I’ve known for awhile, specifically kids I teach, and they get a little upset when I ask them to repeat it. I’ve explained though that it will happen, and it’s something I can’t control unfortunately.

    Corinne
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have fibromyalgia as well. I agree. Fibro fog is real. And now I have widow's fog as well. So everyday words, that I've used millions of times in my life, I'll suddenly forget.

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    Mrs. Jan Glass
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have post-COVID aphasia, which means my short term memory is a mess, and I have a lot of trouble remembering names/faces, or terminology. I have been called out multiple times for mixing up names because "Oh, what, all ____ look alike to you?" No, a*****e, my brain is broken, and yes, when a broken brain looks for patterns, sometimes that's what happens. I also couldn't remember Zoey Deschanel's name for twenty minutes and kept saying "She looks like Katy Perry, but she's not."

    Donna Clanclan
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Hubby has non-dementia memory problem. He wants to hide it. It comes off as he's an AH. Even I struggle with it as we're talking and he's being an AH and I'm like why is he behaving like this FFS, only to have him admit hours later that it was him covering for forgetting...which he'd rather die than admit to in the moment.

    Beck
    Community Member
    3 years ago (edited) Created by potrace 1.15, written by Peter Selinger 2001-2017

    I am 43 and my memory is getting worse. Twice in the last few months I tried to picture my room and I kept coming up with old bedrooms. Took about 20 seconds before I coukd picture my bedroom. It is my short term memory that is bad. I can tell you things from 20 years ago better than I can describe what I did last week. I blame all the drugs in my 20's. I will show my husband something funny I found online and he will look at me crazy and say I showed him the same thing last month.

    Becky Samuel
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Get your hormone levels checked. Perimenopause is a female canine animal.

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    Amanda Lalonde
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I understand this too. Although my memories issue started after I got wernickes encephalopathy but people still get frustrated with me when I forget something. My ex would ask me to do something before he went to work, but I'd forget by the time he got home because of other things going on. Unless it's in my routine in some way I tend to forget.

    msminnie
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Same here. I had a TBI and the memory problems are just getting worse. I forget names of people I've known for years- usually temporarily- and forget what I'm talking about in the middle of sentences.

    CrisMind
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Same here, I forget words all the time. Trying to do a technical interview and not remembering what something is called is frustrating as he,ll. I can still do the work but I can't explain it to someone People just assume you aren't intelligent

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    RyanRyanRyan
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I hate this. I'll forget what I'm saying mid-sentence.

    Erik Ivan
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Yeah, I tried this one when I got a fatigue syndrom 5 years ago. Nowadays I am well enough that I usually don't forgett everything. But the memory is still sketchy,.

    Ronda News Channel
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Can it be treated? I hope you can get back to normal

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    #8

    30 People With Non-Obvious Illnesses Share The Reasons People Get Mad At Them I have autism and a few diagnosed mental illnesses that I go therapy for. I have a very hard time blocking noise out due to my autism and I hated as a kid when I would complain about another student bothering me in class and the teacher would respond with, “just ignore them” I LITERALLY CAN'T???? Now as a high schooler, I can just put my headphones on and my teachers don’t mind, since I get my work done in a timely manner (most of the time lol). This is the only thing I can think of right now, but I might add to it.

    ihaveteafortea , Alexander Grey Report

    max and the expresso
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I also have sensory issues and earphones in the classroom/work environment are a life saver

    3 Owls In A Coat
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I just have ADHD but - best gift I’ve ever received was my own office with a door. I can decorate it (sort of) how I want and close the door and put on some “focus music” (which I find crazy helpful) and actually do my job without everyone else’s phone calls and conversations distracting me. (Marketing and graphic design btw!)

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    AmAndA_Panda
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Just as hard as an adult. Going out in public places is so overwhelming for me. I can't filter out the smells and sounds around me. It just all constantly hits me. People think I'm just a hermit. No. I seriously can't handle crowded places.

    Manny_Flawz
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    This !! Once I sat my friend down and listed all the things I was hearing. He couldn't believe it once he started paying attention to all the sounds around. He was surprised at all the things I was hearing at the same time. I also have this thing where I notice everything because my eyes also don't filter. And I am in my 60s, so I have learned to live with it.

    Stephanie Barr
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    My daughter on the spectrum loves her headphones and will happily do chores as long as she can wear them and listen to her music.

    Happy Phoenix
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Thank you for posting this. My daughter has had similar complaints, luckily her teachers let her listen to music.

    piruoztek
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    It's stupid what those teachers said, even NTs can't just ignore anything. Those are just lazy teachers who don't take any responsibility.

    Heather Menard
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    My ADHD does this to me also can't filter out those sounds

    SealOfDisapproval
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I wear closed over-ear headphones in the office.

    Evelien Stijger Martens
    Community Member
    1 year ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I work allone in a job far beneath my level, and i don't know how to do anything else, ecause everything else is t mutch for me to handle. And i wear headphones with music, otherwise my head goes its own way and it tires me out.

    Jode Mode
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    See? There’s that toxic lil word “just” again - It minimizes whatever you’re going thru & I can’t stand it! If I COULD just, I WOULD just…..

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    #9

    my depression often cripples me from being able to enjoy or simple tasks. but im just lazy. thats what people say and im starting to kinda believe it. sometimes i cant even will myself to get up

    burntbtoast Report

    Lorraine Woollands
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I know, please take some comfort in the fact you are not alone , we understand

    Helen Waight
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Yes. We don’t think you’re lazy. We’ve had the times where you literally can’t get up, when getting into the shower can take all day. You’re not alone. You’re not making it up.

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    Cristina Dal Zilio
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Right? Or the sentence "just try to be happy" 😞😞

    Jenn C
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I just want to slap people who say that.

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    rennie roo
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I relate to this, you're not alone

    3 Owls In A Coat
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Same. People need to start understanding that this is a symptom, not a personal flaw. If you can’t enjoy things you used to enjoy, like simple hobbies - or if you can’t even will yourself into getting up and doing a mundane but necessary task, like laundry - that’s a symptom of a disease called Depression! It’s not weird or dumb or a personal moral failing, it does t say anything about who you are as a person, it’s just a symptom of depression and it really, really, really sucks.

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    Furmama0501
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have had my own mother tell me to just get over it when I have tried talking to her about my depression and anxiety.

    Emily
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Maybe she doesn't want it to be true for you and doesn't know how to talk to you about it in a healthier (for both of you) way? Good luck (with your mom as well as the depression and anxiety)!

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    Penny Kemper
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Hey I've been depressed where I just wanted to be alone and die, but I was also a mom and three and primary bread winner... so I did all my responsibilities (working my job & making food, & cleaning) but totally spent the rest of my time alone with my stupid thoughts. I know everyone can't do that, but it is possible.... just to let depressed people know. I just can't not make my kids food or not work, because it was necessary so I did it even though I didn't want to. But I also knew why I was so depressed and pulled myself out by telling myself I have to let it go and move on. Just saying you mind is a powerful thing and you can help yourself my choosing what is important to you.

    Agent 8433599
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I sometimes feel the same, but I haven't ever been properly diagnosed with anything

    Sami B
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    You're not lazy. A lack of executive function is NOT a moral failure.

    Lyoness
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Right there with you. But when someone tells you "it's all in your head", remember that it actually is - in the structure of your brain and the balance of neurotransmitters. Your illness and symptoms are real. You're not lazy, you have a diagnosed illness, period.

    Cookie
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    You may be hypothyroid.

    Hannah Bridges
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    They take blood tests to rule out physical illness before diagnosing you with a mental illness.

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    “All of these actions help others and boost your own happiness and if we are happier, research shows we are even more likely to help others,” Action for Happiness said. According to them, if you’re not used to being altruistic and kind, it’s fine to fake it until you make it.

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    “Maybe at first, you start out doing things to help others only to get attention and praise, but you will find that doing things for others helps you feel good and when you see people’s responses. Once you see the difference you can make in the world and to your own happiness and altruism can grow naturally.” 

    #10

    30 People With Non-Obvious Illnesses Share The Reasons People Get Mad At Them I have POTS. If I stand up my pulse spikes to 140 bpm and stays that way till I lay down. This often leads to migraines and fainting just from being up for too long. I spend almost all my time in bed, so I can't do most things. Luckily my wife is understanding and we find ways to make it work, but other family members like my parents don't accept my problems and would constantly try to push me to the point of falling down.

    odysseyshot , Mufid Majnun Report

    MantisGirl15
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Same here! People, especially my parents, often don't trust when I say I'm tired or unable to do something because POTS affects me differently every day and I could seem fine one day and feel horrible the next day.

    Alaina Jones
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Oh same! POTS and Autonomic Dysfunction! And a whole barrage of other heart and lung problems. I feel you guys and pray for you always!

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    Hey y’all
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have POTs and EDS. I sympathize. It is hard as hell and currently been in bed/home bound for over five years. I'm in the process of getting a service dog that will sense attacks before I feel the symptoms so I can get somewhere safe. I taught myself, with a few pointers, how to give myself IV infusions, as my doc will not corporate. I saw all that to say, maybe a dog and/or infusions can help get your life back. I'm praying it does for mine.

    Angela
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    What kind of infusions? IV Fluids or something else? I have POTS and always feel much better after IV fluids.

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    RMA
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    And people saying, ‘Oh, everyone gets a bit dizzy now and then when they stand up.’ No doubt they do, but that isn’t what POTS is.

    Terrie Leitshuh
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I’ve seen what POTS have done to my daughter. A collegiate volleyball player with a 4.0 GPA. She was misdiagnosed for almost two years. Saw 9 doctors before the 10th one properly diagnosed her with POTS. During the time, her grades dropped to where she was failing everything! She couldn’t wake up, constantly nauseous and lost a ton of weight. She had to quit playing volleyball because she was so dizzy all the time and could not function at all. This is a very debilitating condition that completely takes over your life. We finally got her in to see a neurologist at the Cleveland Clinic. He diagnosed her and put her on the right meds. It took awhile for them to kick in. But she has been her old self for almost two months and I am nothing but RELIEVED!!! She’s back at school (a different school. She wanted to be closer to home for medical reasons) and is back to playing volleyball. She’s playing for the University Club team and living it up and having fun. It helps having support.

    SmooshyFries
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    There recently was a female swimmer aprox 18-20 years old who has passed out twice while competing. I msg my friend whose daughter has POTS and said Did you hear about that swimmer who passed out? Did you want to salt her as bad as I did? She said, I did and YES I wanted them to salt her and take her vitals standing, sitting and lying down!

    Janet Weston
    Community Member
    1 year ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I’m on beta blockers now for POTS . Seems to be working

    Isabel Care
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Others tend to forget that there are consequences to activity. On a good day, things can be attempted and completed. The next few days/weeks are for recovery.

    Wise beauty
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have a friend who has (been diagnosed with) POTS but the school won’t give them an elevator key, it’s really unsafe and the worst part is that the teachers don’t want us to help in any way because we “need to focus on our education” (helping them walk up stairs, watching them when they faint while another friend goes to get help, etc.) not only is this dangerous for their physical health but it’s also dangerous for their physical health.

    AutisticTurtle
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have POTS too. Mine isn't totally horrible, so I can live a mostly normal life. But because of this, people think I'm making it up when I have an episode/forget my meds. Thankfully my high school P.E teacher is understanding.

    Jode Mode
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    You’re rents suck. ❤️‍🩹

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    #11

    30 People With Non-Obvious Illnesses Share The Reasons People Get Mad At Them I have diagnosed agoraphobia. Most people think that means I don't want to go outside. That couldn't be further from the truth. I can't stand huge spaces with crowds. I was diagnosed before mass shootings were a thing. It's way worse now. Now I cancel plans a lot and it's because of my mental health but people think it's just because I "don't feel like it".

    dissapointingsex , Jake Weirick Report

    Lorraine Woollands
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have agoraphobia, physical disabilities and depression and a lady from Social Care was her to see if I qualified for having Carers. She ask me to list the things that are wrong with me and when I said that I have agoraphobia,she turned round and said "Oh it's not that you can't go out, it's that you don't want to". When I told me Social Worker, she was not happy because she had seen how it upsets me when I think I may have to go out. Because of my physical disabilities I can't get out anyway but she shouldn't have said it

    Mrs. Jan Glass
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Also "You don't want to" is a legitimate expression of severe depression. When you don't want to do things that are seemingly simple, easy, or "what everyone does!" that's not some conscious choice to be lazy on your part. It means your brain is lying to you, and you need help to push back against those harmful messages, you have a legitimate issue. I hope you're doing as well as possible, Lorraine.

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    Sasha Baker
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I was agoraphobic for years, in the early 90s. The condition was even lesser understood back then, it took me 2 years to even get diagnosed. My whole life was on standstill, i had to quit my medicine study and still people thought i was making it up. The good news? I had 1 year of intensive behavioural and cognitive therapy and completely overcame it. Incan travel anywhere i want now and do everything i want and i never take that freedom for granted anymore.

    LJS
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have agoraphobia too. I think TV and film has played a big role in making this a really misunderstood condition by depicting us as people who can't step out of our front door rather than showing more real issues like an unexpectedly large crowd causing a panic attack or the planning that needs to go into a journey that we've not taken before.

    Mrs. Jan Glass
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Just getting over agoraphobia issues here. Five years--even before the pandemic--of, yes, being terrified to go beyond my front door. But the reasons behind it were unexpected/different, and it manifests in so many different ways individually that the stereotypes, not unlike "Oh, tee hee, I'm just SO OCD!" can make it harder for us to understand that yes, this is also agoraphobia. Keep breathing!

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    Missy Missy
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I developed Agoraphobia when I was 23. I still remember the very first panic attack I had whilst grocery shopping that left me crying on the floor. I thought I was losing my mind. My mother, bless her, had battled it for 4 years when she was in her early 30s and recognised what was happening. I suffered only for 6 months until she and my doctor found a mental health clinic that specialised in panic disorders and associated phobias. I did a 1 month intensive therapy course that gave me all the tools I needed to live life with Agoraphobia. It never goes away but at least now I can recognise what's about to happen and work my way out quickly.

    Hana Hajská
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Sometimes I really want to go somewhere. Till it's time to go and I'm paralysed by anxiety. And then buried under the flood of despair and self hatred...

    Sheila Stamey
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I wish I could up vote this a thousand.

    Kurtis Cobainus
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I used to have this, but I got over it. Here's how. I would invite friends over and every time I would invite one extra friend until I was safe

    Demongrrrrl
    Community Member
    Premium
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I'm glad that works for you, but it probably wouldn't for most others.

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    Brenda Coe
    Community Member
    1 year ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Right...it's the crowds and (for me) not being able to see a clear way out. Outside is fine, nature is wonderful.

    Huddo's sister
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I haven't been diagnosed but I have been certain since I was a teen I have agoraphobia. Part of why I was never diagnosed is because my mum wouldn't believe the definition I read out to her about it being chaotic spaces or places/situations where I don't know exactly what is going to happen that are an issue. Even though she was a nurse. So I have been diagnosed with social anxiety, which I do also have, and I just left it at that. My nan (dad's mum) had agoraphobia and I'm sure dad does too, though he has never let anyone diagnose any mental health issues. My nan did end up being housebound most of the time though, so everyone excepts that is what she had, but in the beginning it wasn't like that.

    assdog
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I'm a tree surgeon, not as good as i used to be because i got GAD and SAD. Don't know why as i have always been a "people person" and still to this day i work outside in large forests etc. It's still a struggle but when i lost two of my long term clients i told them the truth. They fired me, not for my work but because i had an "episode" on Christmas eve and said i couldn't do the trees because of my attack. They never fired me by text, never asked if i was ok after. They never called back. I found out later that said client has brother who has the same problem as me and they don't speak to him anymore. Fck u ex clients. 10 years of service and taking everyday as it comes. Peace out to all with the same thing. x

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    #12

    30 People With Non-Obvious Illnesses Share The Reasons People Get Mad At Them I'm autistic, of the "would be Asperger if that was still it's own diagnosis in my country, but it's not" variety. I only have a few sensory issues, but I get flack for them all the time. I'm mostly vegetarian because I can't tolerate meat unless it meets certain criteria. Ground beef is usually fine, as is heavily processed meat that doesn't resemble meat much (like chicken nuggets or most lunch meat). But like, a chicken breast or pork chop? Absolutely not. I've been harassed about this for over three decades now. "Just eat it, it wont hurt you" and "you're just being weird" and "don't be difficult, everyone eats this." Also, sensory overload. I usually have a high tolerance and it's hard to push me into a meltdown (it's more like a shutdown for me), but when I get there, I legitimatelt cannot function unless I can remove myself to a quiet dark room to "reset." I've never needed to do this in school or work (I'm an RN) but in my personal life I've been called "dramatic" or "difficult" for sometimes needing 5-10 minutes alone to get my sensory needle out of the red. Mind, I grew up in the dark ages of the 80s and 90s and because I'm female and of "above average" intelligence, was repeatedly told as a child and teenager I could not be autistic. I was diagnosed in my 30s. But, the "you can get over this if you just tried" thing has not stopped since getting my official diagnosis. If anything, it's gotten worse because "yeah but you're not on the 'bad' end of the spectrum so what's the problem?"

    blackesthearted , Elia Pellegrini Report

    Linden
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I'm late-diagnosed autistic too. But fortunately (and by selection) only have people in my life who validate and support me and are good with all the accommodations and I've learned to advocate for myself very strongly. I was very invalidated in childhood though, as I think we all were, and that has repercussions.

    TheAquarius1978
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Well, you're luckyer than me then, i like you was also diagnosed late in my 30s, but unlike you, no One in my family rememberes that, só every time i have a " wierd " behavior, it means that i'm either an a*****e or Im crazy, or irresponsable, and get 0 suport lol, i'm not gonna dwell in specifics here bits lets just say a s**t load of my anxiety could be avoided if they simply Said " i don't agree with you but i'l pay atention to it " nothing more, but instead all i hear os that in crazy....

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    John Bell
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    High functioning autism here. I work 45 hours a week. No problem there. But I'm emotionally crippled and can not maintain a relationship. Some days like today I'm so lonely I want to die.

    humdrum
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I'm probably on the other side of the world but I'm sending you a virtual hug, or nod, whichever you prefer. Also: microdosing shrooms or weed helps when you're building emotional crutches.

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    Rens
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    You're awesome, and I can relate, because I'm the same. I have a lot of food aversions, smell aversions, taste aversions... I'm also above average intelligence but I always ended up saying the wrong thing doing the wrong thing and pissing people off. Due to unrelated medical issues (I have fibromyalgia and ME),

    Rens
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I'm now unable to work and it's quite difficult to just get by every day I didn't have my cat who is my emotional support animal I wouldn't be here.

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    oddly_informed_raven
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    food sensory issues with texture and taste are the WORST. "it won't kill you to eat it" I literally can't or I'll throw up

    Lsai Aeon
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Sounds just like my son, his issues are with veggies, but everything else sounds identical. He's 14, I'm doing my best to help him through it all, I just wish I could do more to help him

    humdrum
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    He needs you for subtitles. Explain what people are thinking and feeling, why they're doing things. And a simple system of self-awareness that allows him to identify at least one stage before Meltdown so he can later learn to remove himself from situations. But he's 14, so don't kick yourself if puberty keeps getting in the way of all that :)

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    Izzy Curer
    Community Member
    3 years ago (edited) Created by potrace 1.15, written by Peter Selinger 2001-2017

    I can't talk if there's music playing. We'll be in the car, and my husband will turn the radio on, and I'll literally stop mid-sentence because I can't speak. I'll try, but then I just end up stammering out single words and saying 'um' alot until he turns the radio off. Sensory overload and shutting down, I get that. We usually have to drive without the radio. It used to drive him crazy, but music literally drives me crazy, and he got used to the quiet.

    Aspen Wolf
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I don’t know if I’m autistic or not but this is EXACTLY like me

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    Stephanie Barr
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I feel this. My son is non-verbal autistic and has many more issues, but he's sweet and kind and everyone loves him, while never doubting he has a disability. My youngest is also on the spectrum, but she is smart and vocal and doesn't seem to get nearly the understanding or sympathy of her brother.

    Mabelbabel
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    When he was young, my nephew had a few behavioural issues, he used to have meltdowns about odd things like going out into bright sunshine, loud noise, people talking while the television was on, and he would only eat a very limited range of food because he couldn't cope with certain textures. My sister looked it all up and thought it might mean he was getting sensory overload, so she took him to the GP (family doctor) for a check up, and asked ithe doctor if J could be autistic. Oh no, said the doctor, he can talk perfectly well so it's definitely not autism. It was a few more years before he finally got his diagnosis-that delay meant that he didn't get the support he needed in school (if he had a meltdown in school, they treated it like a tantrum or deliberate misbehavior and put him in detention. Idiots.

    Sheila Stamey
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Good in you do it and you're a nurse? You are a super hero!

    Desiree McKinnon
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Same here. My mother was told I had a 'social disorder'. The solution: force me into more social situations. One friend whose brother is diagnosed with Asperger's told me that I am the most high functioning person with this she had ever known.

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    #13

    30 People With Non-Obvious Illnesses Share The Reasons People Get Mad At Them Hold down a job. I've got a triple threat of medical conditions, epilepsy, diabetes and aspergers. My parents see me only at my physical appearance, my dad has even stated that it's because I'm part of a generation that wants instant gratification and all the millennial stereotypes. My mom thinks I'm just playing a Sad sob story as an excuse not to work hard. But the thing is, I try my damned best to do what I do. I mean I can't earn over a certain amount or my social security stops, so i take the roll of house husband and do all the chores. Cook, clean, grocery shop, ect. But my parents think it's me being lazy. And I'll be the first to admit I've never been good at holding a job. Between the depression from being torn away from my hometown and friends without even being allowed to get phone numbers to say good bye, and the epilepsy that made it near impossible for me to get my driver's license, I decided being a homemaker would be my best course of action. But of course, nothing will ever be good enough for them. They hold every mistake I make over my head. And it sucks. I can't even afford a service animal to help me with my epilepsy/seizures

    WinterWizard9497 , Tony Tran Report

    Jackie Lulu
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Sounds like a big part of your problem is your parents!

    Summer Mason
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Take pride in being a stay at home dad. Your doing a wonderful job. Also, drop the parents. Blood doesn't mean you have to keep toxic people in your life around you all the time.

    Izzy Curer
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Or even just a homemaker/house husband with no kids. I'm sure the wife is proud.

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    TheAquarius1978
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Its hard for an Asperger to hold a job, believe i speak from experience, we do our work, but manage to p**s people off due to out " c**p ", i for instances don't do " boring " if something fells boring to me i start to " space off ", só for instances, inventories, i can't for the sake of me consentrate long enough to do them right.

    Rachel Cobb
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    As someone else with Epilepsy (and on the spectrum) this hits home.

    Tracy Jones
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    ADUC(assistance dog united campaign) and paws with a cause may be able to help you get a service animal. i hop it helps!

    Martina Moreau
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    "I try my damned best to do what I do" Yes you do, and you should be applauded for it. YOU are NOT lazy.

    Pirates of Zen Pants
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    My Asperger-y husband writes software for a living. It's a great fit for him. He doesn't have to focus on understanding emotions or reading body language at work, because computers don't have these things. I've always thought people with autism were cool, and I don't mind being his seeing-eye dog when it comes to neurotypical stuff. He has skills I don't, so it's a good exchange.

    Tamra
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I swear we have so many parallels in our lives. This is the second time you've shared something that I completely relate to. My husband is the same, and is also a software developer. He's insanely good at it, but doesn't navigate the emotional stuff well, so the work suits him. Together, we're like two puzzle pieces...both different shapes, but fit together nicely.

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    Christine Rhodes
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    if family members do not add to your life and joy, you are not obligated to be around them. If you had a friend that undermined you and generally sucked, you would probably choose to no longer be friends. You can do the same with family members. It's very liberating.

    Seedy Vine
    Community Member
    3 years ago (edited) Created by potrace 1.15, written by Peter Selinger 2001-2017

    Not being allowed to get friends' phone numbers sounds like a big red flag. Are OP's parents trying to isolate them?

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    #14

    I have quite severe endometriosis which is causing a lot of flow on inflammation issues and a whole lot of pain. It's hard to get people to understand what it even is beyond 'period pain' let alone how it affects me. This is affecting more than just my uterus, and it is every single day. My fam is good, work is not.

    HowlingKitten07 Report

    Helen Waight
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Endometriosis is something I cannot get my boss to understand. No, it’s not ‘just cramps’, it’s ‘vomiting in pain and trying to knock yourself out on the nearest wall’. Some doctors are really unbelievable too - ‘oh that’ll go away once you have kids’

    Mrs. Jan Glass
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    That was what I heard for decades. "Oh, when you have kids-" "I don't want kids." Which means cue all of the "But what about your husband?!" pearl-clutching. Especially great when it's the goddamned nurses and doctors in the OB/GYN office, too.

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    Mrs. Jan Glass
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Thirty years of this b******t. Thirty years of missing days every month of life, of excruciating pain, and being told by everyone that this is just the way it is, and I'm probably faking for attention. Thirty years of other women suggesting that it can't possibly by THAT bad because THEY can go to work when they're menstruating.

    Helen Waight
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Yup, 30 years here too. And I want to scream at the people who say ‘just try X’. I’ve had pills of every description, IUDs of every make, injections of stuff and nothing helped. I want that organ GONE.

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    Ozacoter
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Indeed. People have 0 empaty with invisible illneses and even less with ones that only afect women. My endo is constant, right now i feel a lot of pain in my abdomen as if i had my period and i dont even have an uterus anymore. With the hysterectomy it became better but it will never go away.

    Disgruntled Pelican
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Oh my god yes. There are days when I can't walk because the pain shoots from my back and abdomen down through my knees. Granted, my diagnosis was far less severe than others, but we're pretty certain that if I had a really invasive surgery that they would find it in my bowels and deep in my back at a minimum.

    Tamra
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I had undiagnosed endo for years, and let me tell you, there's no pain like it. Only when I had surgery for a ruptured ectopic pregnancy, did they find my abdomen was full of adhesions, which was likely responsible for the ectopic...my fallopian tube was mangled with adhesions. My heart goes out to every woman who deals with this. You are freaking warriors.

    Rens
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I don't have endometriosis, but a condition where the uterine lining grows into the muscle layer of my uterus; also fibroids and PCOS. I am currently on the progesterone only pill for the last 10 years, stops me from having any periods. After 25 years of being tortured by my periods. I can't remember the name for the condition, my memory sucks...

    Happy Phoenix
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    The moment I started menstruation as an early teen.. I was taking the ibuprofen 800's. It's been a battle of "oh I'm sure it's nothing" and "it's your mental health issues" .This year at 35 had a partial hysterectomy. It's not gone..but tolerable now.

    Debbie Lowe
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Surgery was the only thing that helped me.

    Ashley
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    After a long road of severe periods, heavy flows, and not being able to get pregnant for 3 years, my doctor finally diagnosed me with endo last year and I had surgery to remove all of it. Unfortunately, it came back within 6 months, feels like worse to. Not many people understand my pain. Luckily my boss is understanding with it and gives me slack sometimes. I just hate that I cant function sometimes and my son gets sad when I cant get up and do stuff with him. I hate that I cant help out around the house sometimes, but my husband is amazing and pitchers in for my share when I have a bad flare up.

    Gini Sarver
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    try telling others the description of what’s happening inside you, dr once told me it’s like spaghetti noodles encasing/growing from the uterus

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    #15

    I had acute leukemia as an adult and had 2.5 years of intensive chemotherapy. I have now been done with chemo 5 years, but I still struggle so much with fatigue. I can only handle like one errand a day or a couple of household chores. I look pretty healthy now and a lot of people just don’t get how much damage the chemo did to my body.

    justmanny_beingmanny Report

    Natasha Tomes
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    My ex had cancer at 18. He took almost a decade to get to where he could work a full time job.

    3 Owls In A Coat
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    So much medicine is “hey, here’s a substance with side effects - one side effect is that it heals you, another side effect is that it causes insane fatigue and lasting cell damage for years.” Medicine is good but we need to understand that I think.

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    Lesley Melville
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    My husband is battling stage 3 colorectal cancer right now and soooooo many people don't understand how nasty chemo really is and how much it damages your body. He had a heart attack-like "cardiac episode" that landed him in the hospital for a week. Now, he was just diagnosed with Cardiac Ischemia as a result/side effect of the chemo. People told us that he shouldn't do it if he's having such serious side effects from it....like the alternative is better. Dying, you potatoes. The alternative is death. 🙄

    InfectedVoiceBox
    Community Member
    3 years ago (edited) Created by potrace 1.15, written by Peter Selinger 2001-2017

    My mate had leukemia when we were at school, it messed up all the nerves in his left foot and he has always walked with a major limp since, apart from that he's been good since, I hope that continues.

    Sami B
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Is it possible the leukemia/chemo triggered CFS/ME (chronic fatigue syndrome)?

    UselessKnowledgeFont
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    So this! I have brain and spine tumors alongside severe depression. I was never really high energy before my tumor diagnosis and subsequent surgeries & chemos. The fatigue has only gotten worse over time. My tumor diagnosis was in 1999!

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    #16

    Household chores that involve my arms over my head or a lot of force. I have a connective tissue disorder that makes me hypermobile. It *literally* means it's harder for me to do something like fold laundry. But it's invisible and I can handle it most of the time (Thanks to a ton of physical therapy!) so people just pretend I'm being lazy.

    ForsakenPercentage53 Report

    Alexandra Davis
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    EDS! I have this too, both the hypermobility form mentioned here (I can dislocate/ partially dislocate stupidly easily, like taking off a jumper will pop my shoulder out!) and vascular form which is much more dangerous. Mine isn't as invisible because this and other physical conditions have left me needing to use a wheelchair full time. But when I could walk, but in daily chronic pain lots of people (thankfully not friends or family) would think me lazy/ low pain threshold when actually it's very very high!)

    Jode Mode
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I knew this would be on the list. Worked very closely with an EDSer, and learned SO much about it - I’d never even heard of it before. Def a hidden one!

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    Brechje Geutjes
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Here another EDS'er. I'm hypermobile in my joints, particularly my back. But also my guts are sagging. Due to this I have many health problems and most people are fine, but my own parents think I'm a p*ssy...

    Gin. No tonic
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Another EDSer here. My family is good with me now. Because for the last few years I stopped pretending I'm fine, and told them every time I was in pain (not just when I was in excruciating pain). It's more difficult with work. I'm a teacher at a university, so I can't just skip work and have a sick day. Society in general is the worst, because EDS is invisible and people don't know me, so things like taking a bus is difficult, because I need a seat, but people look at me weird for taking it. Or I need a disabled parking (which I don't officially have), so I take Family parking which is closest to entrance other than disabled one.

    StealTheFruit
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have EDS, too! :O I was diagnosed with an extreme version, too. People think I'm lazy when I take extra breaks during gym class because it's painful to even walk. I'm grateful that my friends understand, and they always make sure the pain is reduced as much as possible. It's hard, still, especially because of the people who don't understand. My doctor doesn't want to label me as disabled, even though I can't even walk up stairs sometimes. It's frustrating.

    Jan Rook
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have the opposite problem - recurrent bilateral adhesive capsulitis, I haven’t been able to move my shoulder joints for 10 years so anything in a shelf above boob level is dead to me - I can’t fasten my own bra or brush my own hair but ‘frozen shoulder’ sounds like a bit of stiffness and I just need to take up swimming or exercise more… 🦖

    Bekki Sala
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Same! Just had surgery to fix one of my shoulders because I have too much space between joints, and was constantly subluxing and dislocating it. I can dislocate on my own, and have been doing this all my life. I'm in my mid 30's now, and was just diagnosed. Only been doing it my whole life!

    #17

    30 People With Non-Obvious Illnesses Share The Reasons People Get Mad At Them Waking up in the morning. I have a complex medical history that includes Delayed Sleep Phase Disorder and I've tried every recommended treatment but it's going against my natural state and I don't want to have to take more meds on top of the ones I have already. I can work remotely at night and I get decent quality sleep during the day (when it's quiet, that's another story) but my family are convinced this is a sign of depression or laziness. If I force myself to be awake during the day I am clumsy, I drop things all the time and I struggle to form sentences. At night I can multitask, complete 3 hours work in 1 hour and my memory is sharp. There is no reason for me to try and fit daylight hours except to fit into what they think is normal.

    Craicpot7 , Kinga Cichewicz Report

    3 Owls In A Coat
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I’m sort of the same - evening-ish is my brain’s best time (3:00-9:00pm). I’m off work at 5:30 - my best work happens at the end of the day. Wish I could adjust my work schedule to take advantage of it, but as it stands, I get to come home all motivated to clean or do art or music so that’s good :)

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    Giovanna
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Must be really hard, considering that society goes the other way

    Pumpkin Spice
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Your natural sleep pattern is a nocturnal one, and that's OK. Night jobs and night colleges exist for a reason! I wish you all the best.

    rennie roo
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    nocturnal sleep patterns are so cool, even if they're difficult to fit into modern society- I would love to be able to sit outside at night and see all of the nocturnal wildlife without dozing off

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    KING ILLEGAL FOREST
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I wish I could find a job that worked with my sleep cycle. Sadly I'll probably be abusing benadryl for the rest of my life.

    Anna Repp
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I'm an artist and I feel so much better since I started freelancing! I still hold part-time jobs that occasionally require me getting up early, but most of my work I can do at night.

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    April Caron
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I had a high school student with this a few years back… we set up accommodations by allowing him work credit for his after school job to count as his first few periods during the day… that way he could sleep in and didn’t have classes to attend first thing in the morning. His actual first few scheduled classes were those he excelled in (because if he missed them, chances were good he’d easily catch up any missed material). I was one of those first few classes. He’d often come in late with a giant coffee in hand. I was always happy to see him.

    UpQuarkDownQuark
    Community Member
    3 years ago (edited) Created by potrace 1.15, written by Peter Selinger 2001-2017

    The story of my life. I cannot wake before 8 or 9 and be fully functional. I feel stupid, clumsy, emotional, unfocused and my already bad memory is worthless. For the most part my work allows me to get up at about 8 every day, and I still need an alarm to do that. I’d love to sleep from midnight or 1 until 9 every day. The few periods in my life I’ve been able to do that, every single physical and mental health metric improved.

    Smutná_elfka
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I feel you, even though my problem is not nearly as serious. I've had trouble falling asleep for most of my life and it got awfully bad with my major depressive episode. I take my sedative antidepressants at the evenings which helped a lot but I still struggle sometimes. Fortunately, my parents are very kind so they don't give too much s**t to me about it but it's painfully obvious that they don't understand it at all.

    Brenda Coe
    Community Member
    1 year ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Wow...didn't know that was an actual (clinical) disorder. Now I know why I liked working "Nights"!

    Anna Repp
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    This! I'm 45 and my mom is still convinced that I should stick to a "normal" schedule and tells me that if I tried it I'd get used to getting up early. Sorry mom — been trying all my life and it never worked. Probably time to admit that I function better at night and to stop telling me I'm missing the best part of the day by not getting up early.

    Hannah Bridges
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    My ADHD brain is so happy to see this here. Delayed Sleep Phase Disorder is common in people with ADHD. Well actually, sleep disorders in general. But especially DSPD

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    #18

    30 People With Non-Obvious Illnesses Share The Reasons People Get Mad At Them Combo disorder depression and anxiety mixed around with brain trauma. I forget things constantly and have a hard time doing what others see as simple daily tasks. Anxiety is rough, but it's the absolute worst when it comes to operating a vehicle. Due to my inability to drive safely without the risk of harming others, I choose to not drive. Because I could kill someone. Obviously. The people around me don't understand it at all and I get told I need to grow up or simply not care if I kill a person because driving is just soooo important. I wouldn't be able to live with myself if I hurt someone. I cannot put a luxury above the lives of others.

    angroro Report

    Lorraine Woollands
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have depression and anxiety and agoraphobia and physical disabilities and the number of times I have been made to feel lazy , sometimes by my parents, sometimes by Carers . My parents it was " she's doing it for attention" or " Snap out of it", " Get over it". Another was " Oh what's she crying for now", I had no idea what I was crying for sometimes it happens. My partner wasn't much help either, he used to said that he understood,but he didn't (he died in January) I am now on my own it has made it so much worst because I have to much time to sit and think about things and worry over them . Money yes, we all worry over money at the moment, it can still things like what I am I having for dinner. I know it's silly but that's how my brain is wired and I can't help it

    Helen Waight
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Major love and hugs. Also disabled with a brain that has depression as a default setting. It’s so cruel when people say you’re doing it for attention or that it’s something that can be solved by willpower (or the dreaded ‘just think positive thoughts and do exercise’). Know that I believe you.

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    Sheepdude
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    "or simply not care if you kill someone" you need to surround yourself with new people

    Seedy Vine
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I don't drive. Just don't have the brain for it. I'm saving lives by staying off the road. Wish more people knew that this is acceptable.

    3 Owls In A Coat
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    You are a good person. If you don’t feel safe driving, don’t drive. This is completely acceptable and I applaud you for making that decision :) 👏

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    Mia Black
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Good decision! I don't drive too. I may have a Trauma but before that Event i also didn't liked cars, i am an overthinker, i have Bad reflexes and fear the thought i couldn't Hit the brakes quick enough if something happens and could harm/kill another person. I couldn't handle this thought although i was a pretty good driver in driving school. But before the final Tests it Hits me, that I couldn't handle being rwsponsible alone on the streets. With the Trainer it was ok to drive, he was my safety net, but alone? Sorry not sorry. I would just freeze (but not the car) and i don't want to risk this

    Mia Black
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    My momlikea to drive but is proud of my self reflecting and decision, although it is Bad for job applyings and daily Routine to not have a licence

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    Seule Forever
    Community Member
    3 years ago (edited) Created by potrace 1.15, written by Peter Selinger 2001-2017

    I also choose not to drive due to anxiety and BPD (and maybe trauma, I've being in a few car accident as a passager). I tried and fail my final driving exam 7 times!! I understand what OP means. I'd rather not driving than kill someone doing so.(Though nobody is giving sh** about it)

    Mitsuki
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Anxiety and deression as well. People make fun of me for not learning how to drive even though i have a car. My live in fiance drives it. The thing is im petrified. Like white knuckle hard to breath scared when driving. Ive had my mom try to teach me, instructor at job corps but i know I'll never be comfortable behind the wheel.

    3 Owls In A Coat
    Community Member
    3 years ago (edited) Created by potrace 1.15, written by Peter Selinger 2001-2017

    People shouldn’t make fun of you. I compare it to roller coasters. Some people get so comfortable behind the wheel (like me) that we forget we’re actually in a flimsy hunk of metal hurtling down a hard concrete runway at speeds that can absolutely kill. Not everyone likes roller coasters, not everyone likes driving. That’s totally cool :) I’d rather you be comfortable in the passenger seat than freaking out behind the wheel with lives in your hands! I hope you find some peace with your anxiety and depression and people leave you alone about driving.

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    Mac1948
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have PTSD (combat situations) with chronic depression, anxiety disorder ... the whole spectrum. People just do not understand how some sounds, comments, attitudes truly hurts. I do want to fit in ... but, I have difficulties.

    Harry Hwt
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Sounds like my girlfriend and I understand how you feel don't do something you aren't comfortable to do enough people drive as is it's going to be ok

    Emery Walters
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I am so proud of you. I wish I were as courageous as you.

    Jode Mode
    Community Member
    3 years ago (edited) Created by potrace 1.15, written by Peter Selinger 2001-2017

    Fukk those people! Ugh! Good on you for sticking to your guns about not driving. If people who shouldn’t be parents didn’t have kids, think of how much better the world would be. “Just” because you can, doesn’t mean you should.

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    #19

    30 People With Non-Obvious Illnesses Share The Reasons People Get Mad At Them it’s not as serious but I’ve had chronic bladder and kidney infections since I was 15 which basically meant constant rounds of antibiotics but also I got up in class 3-4 times an hour to go pee. My teachers were MAD and accused me of just using my phone or wanting to ditch class, when in reality I was just in a lot of pain.

    t1nydancers , Towfiqu barbhuiya Report

    Gabriele Alfredo Pini
    Community Member
    3 years ago (edited) Created by potrace 1.15, written by Peter Selinger 2001-2017

    This I don't understand. I know which kids I let them go to the bathroom and then scold (or put a note for the parents on their diary) because they need to learn to wake up a little earlier, and which kids have legitimate problems and need to go to the toilet often. I have a kid with a probable urethra chronic infection and one with little control on their intestine. I will never scold them!

    Sarah K
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I agree. I am told which kiddos have med issues and I tell them you don't even have to ask me, just get up and go to the bathroom when you need to

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    Angela
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I've had sepsis due to silent UTIs. I tell my son, if he has to go to the bathroom then he is to go! My son's teachers in middle school lower grades for "non-emergency bathroom use"...it is not the teacher's place to decide what constitutes a bathroom emergency. It should never get to the point of an emergency.

    Catte West
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I never knew how much a UTI can affect the rest of the body until my ex started to get them. As his caregiver, his family refused to take him in, I monitored his urine output religiously. The last one he had I got his doctor in the second day, but it was so bad he was hospitalized and developed other complications. He passed in 2021.

    El-goes Eggo's
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I'm sorry for your loss and I applaud you fro caring for your partner

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    Jode Mode
    Community Member
    3 years ago (edited) Created by potrace 1.15, written by Peter Selinger 2001-2017

    People are horrible, especially when they’re being horrible to kids.

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    #20

    30 People With Non-Obvious Illnesses Share The Reasons People Get Mad At Them Just go to the ME/CFS sub. I was diagnosed at 23 and am thankfully recovered, but it's the worst illness, and people don't believe you're sick. Long Covid has finally given people some understanding. It's not 'tiredness.' It's your limbs feeling like lead - just crossing a room feels like you're walking through molasses. Vertigo that makes you feel like you're going to pass out when you stand up. Sore, achy, painful muscles and joints - neck, shoulders, back, legs. No appetite. Brain fog. Headache. And all of this combined with the worst, most deadening exhaustion you can imagine. It's essentially the worst flu imaginable, every day. I was basically bedbound. Besides the flat-out contempt I received from some doctors, there was my family's insistence that it was a 'nervous breakdown,' or that 'if I had no choice but to recover then I would,' or that it was a 'lack of motivation.' I was told that I needed to go to X event, and I could 'rest' or 'you can sit down when you get there.' Not realizing that even just getting there and having to socialize - even just sitting up - would cause me days of severe pain and exhaustion. And not understanding that I couldn't be courteous - I couldn't bring this in from the kitchen, help make food or set the table, etc. When I was fired from my job I was told it was 'great I had time to travel or pursue a hobby' - no, I was too sick to get out of bed. It's an awful, life-limiting illness and disgusting that its very existence is still disbelieved. In studies, sufferers have been shown to have less quality of life than late-stage AIDS and cancer patients, but it gets less funding than hayfever.

    Mysterious_Sugar7220 , Sofia Alejandra Report

    Pirates of Zen Pants
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I've had ME/CFS for over twenty years. I rapidly went from running a marathon at 30 to barely being able to walk the dog. I'm part of a crowdsourced online research community where 13,000 of us share information about what does and doesn't work for us. The website is https://www.stuffthatworks.health/myalgic-encephalomyelitis. I strongly recommend it. The FDA has not approved any treatments for ME/CFS whatsoever, so it's only through networking with other patients that I've learned how to manage this disease.

    Anonymous
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Thank you!!! I have been alone in my ME journey for 4 years. I'm literally crying right now because this us the first time I've had any info about anyone else that has it.

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    Becky Samuel
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    For people that find the symptoms hard to imagine, think about when you've been seriously ill with something like the flu. I believe that CFS/ME is the body failing to reset to "normal" after an illness. Resting and isolating are an important part of the recovery process, which is why your body turns on the "inflammation and enforced rest" switch, but then it never turns it back to the original setting.

    Ozacoter
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I try to explain people that its not "fatigue", I am not "tired". Its more likefor every minute that we do something we work 5-10m. Fold the laundry for 10m? For me its like if i spent 50-100m. Walk 30m? (I cant) its like if i walked 150-300m without stopping. Work 8h? Like if i worked 40-80h without a break (which obviously i cant). Its so bad that the symptoms we get for mundane things like a short walk are the same as an unprepared person gets if they do a marathon without training.

    Ozacoter
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Its bad because people doesnt see it. Today a technician came to hang our courtains (because i am too weak to do it myself). He saw a woman "not working" that was perfectly fine, could walk around the house, folded the laundry and helped him a bit. Those 3h he wont see the rest of the day or days of intense pain and fever that will follow for "doing so much".

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    Rens
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I'm 50 now, I've had ME/CFS since I was 17. Up until 4 years ago it was more or less manageable but now it's crippling. It has more of an effect on my life than my fibromyalgia and chronic pain do.

    Rens
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    To me it feels like I'm fighting to swim against the tide like waves are knocking me over and I can't get my feet. I can't remember what it feels like to wake up feeling refreshed and energised

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    Rachknits
    Community Member
    3 years ago (edited) Created by potrace 1.15, written by Peter Selinger 2001-2017

    Because I can only leave the house on a 'good day' people only see me at my best. Bad days are when I can't even speak. I'm so incredibly grateful I have a supportive husband as early days just after I was diagnosed I couldn't do anything so I have no idea how sufferers cope without that support. The thing is I was too ill to communicate so I wouldn't have been able to even get some kind of support worker or carer as to do that you have to be able to make phone calls and communicate your needs. 12 years on I can't work and rarely leave the house but I'm OK with a little reading, knitting and Internet stuff. I'm classed as moderate to severe. I've had periods of severe but am fortunate that those times don't last. There are many of us just too unwell to get out of bed and even eating is too hard (digestion takes energy). If you need convincing then google Whitney Dafoe, he went from living a very active life to complete immobilisation and continues to be severely effected. Ed for typos

    Kellie Jones
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    5 years in and no one medically cared about us. It’s better to label us than treat us. I have never felt so truly alone until my diagnosis. Not sure I will ever truly forgive or forget how we are treated medically

    Anonymous
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Yes! I am with you. I was told so many times that I was " just depressed"

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    Rens
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I'm so sorry you've had it so bad at such a young age. I've had CFS/ME since I caught Epstein Barr virus at 17. It was manageable until 4years ago when my life imploded, I went from walking 4 miles a day to wheelchair bound in 3 days. I'm a bit better now, but everything you describe is exactly how my life is now. Stress makes it worse, and last summer I had another setback after being stalked and harassed by a neighbour (he was given a police caution). Now that Long COVID is a "thing", hopefully we will be taken more seriously.

    Anonymous
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    This made me tear up. I've had ME/CFS for 4 years and I feel like this is the first time anyone has described/understood what I'm going through. I was a very energetic and motivated person before so I haven't taken much backlash for it though, because everyone who knows me knows that if I could I would (whatever the task may be). I had to go on disability and I'd always been a workaholic. When it started all of the doctor's kept telling me I was "just depressed" and wanted to treat me first depression, but I knew they were wrong. Took a year and a half for me to figure out what it was and see the right specialist to get a diagnosis.

    Jode Mode
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    WOW. Had no idea… well I was reading, I was thinking that you never have enough spoons! 🙁

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    #21

    30 People With Non-Obvious Illnesses Share The Reasons People Get Mad At Them I have psoriatic arthritis and fibromyalgia. Just recently diagnosed but have been dealing with the pain and fatigue for years. I get a ton of judgement because my husband is “mr. mom” and takes on a ton of the parenting duties for our toddler, especially when we are out of the home. He doesn’t care - a) he’s an equal parent by choice, and b) it’s an agreement we’ve made, that with all of the energy it takes me to even get us out of the house and socialize…he primarily manages the parenting once we get there…but people see a dad being primary parent and the judgements are plain as day on their faces. My own mom used to make sideways comments implying that I was lazy, poor Bob (not his name hahah), but now I finally have a diagnosis and that’s stopped.

    RecentRegister239 , Klara Kulikova Report

    Susie Elle
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    At least the comments have stopped after diagnosis. Aside from that, my sympathy, OP. It must be really hard.

    Babsevs
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    This is a very demanding and horrible combination of illnesses...... I wouldn't wish it on my worst enemy

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    Pirates of Zen Pants
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I'm leaving this comment on every posting about fibromyalgia. Look into low-dose Naltrexone for pain if you can. Important links are https://ldnresearchtrust.org/2022_LDN_Guides and https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576. LDN has decreased my fibro pain by about 40%, which is the difference between constant agony and the ability to get out of bed and get things done. Yes, I have to get it from a compounding pharmacy, and no, my insurance doesn't cover it, but at $50 for a 90-day supply, it's worth it. It's believed to modulate the immune response.

    Brooklynn Jackson
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    This is so f****d up. I mean, why can't a male be the primary parent??

    Babsevs
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have PsA, fibro like OP and osteoarthritis too. I'm Mid forties and feel like I have an 80 Yr old's body.... Creaky, sore and permanently exhausted. I've an excellent Rheumatologist and today I was given a new med regimen..... But it is sooo damn hard. I feel less of a mum (my kids are older than OP but no less in need of their mum) and I feel I'm a c**p wife. Lucky I have a very understanding husband

    ChilledChocolate
    Community Member
    3 years ago (edited) Created by potrace 1.15, written by Peter Selinger 2001-2017

    I also have fibromyalgia and arthritis (along with a few other issues) and it's devastating. I rarely see friends and family anymore because I'm tired of the judgement... and "just exercise" seems to be everyone's advice. Thankfully, my husband is awesome and supportive... but I can see how this could kill a relationship if the bond isn't strong.

    Rens
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    My ex-husband used to call me an attention-seeking hypochondriac because I've had CFS/ME since I was 17.

    Corinne
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I was diagnosed with fibromyalgia 28 yrs ago. Finally, in the last 10 yrs, since I had to stop working because things got so much worse, everyone understands.

    Satya Bain
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have fibromyalgia and Sjogren's. Both cause widespread pain and myriad other symptoms. One by itself would cause CFS. Imagine the fatigue from both. Yep. Along with all the other -isms that come with both.

    Celtic Pirate Queen
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I feel your pain (literally). I've had fibro for 20 + years. There are good days and days I can't even get out of bed. My ex was a complete jerk about it, he just assumed it was my way of trying to get out of sex. Yeah - he was THAT guy. My Mom (who also has fibro & is a nurse) explained that this is a disorder that doesn't have outward physical symptoms, and asked him if it would be easier for him if I drew purple stripes on myself the days I wasn't feeling well. Luckily my new husband (15 years) is very understanding & considerate. HIS ex had fibro, so he knows full well what the limitations are. He doesn't hover, but he does check to make sure I'm still breathing!

    Gayle Brown
    Community Member
    3 years ago

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    #22

    30 People With Non-Obvious Illnesses Share The Reasons People Get Mad At Them Well people don't necessarily get mad at me for it (well they probably do but don't show it) but having a stutter when I speak can sometimes make saying even the simplest of words/sentences can be very difficult at times for me, and it's even worse when I'm speaking to people who I don't really know too well

    SammyCCFC , Jessica Da Rosa Report

    Helen Waight
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    And people decide to finish your sentences for you because ‘you’re taking too long’

    3 Owls In A Coat
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have 2 friends with stutters. Just let them speak - at the most it’s only a matter of SECONDS before they get the right word out. They appreciate it, just be respectful and patient and treat them like you’d want to be treated.

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    DuchessDegu
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    My dad had a quite severe stutter so I got used to it from birth. I can't stand people that ramble on, but I can sit and wait however long it takes, without any judgement, for someone with a stutter to get the words out

    Marianne Luginbuhl
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Aw so sorry. I was told that when speaking to someone who stutters, to just wait patiently and don't guess what they are trying to say, is that the best thing to do?

    Boerenhond
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Yes. Don't interrupt. My son used to stutter. He got stutter therapy and it worked really well. If he kept hanging in a part of a word, he had to calmly repeat that a few times and then go on. And he had to talk slower and not fight, just oh hey I keep hanging on this part of a word, lets calmly repeat it a few times to get it under control.

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    Manny_Flawz
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    President Biden stutters. Though the GOP says that is false, he has Dementia.

    RedMarbles
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Guess he set up that excuse in childhood when he foresaw he'd be president as an older man with political opponents who would throw out all rules of basic human decency.

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    Autistic apricot
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I only stutter when I’m nervous so I decide not to talk instead

    Ronda News Channel
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I can understand this because I have some friends who stutter.

    Chrissyfox
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    My husband does that thing where he repeats words several times (but, but, but..that, that, that..no, no, no, no etc), especially when he's on the phone. Working from home I really notice how bad it is. And he doesn't even realise he's doing it. It is frustrating and sometimes I tell him to breathe and slow down but it has become worse as he has gotten older. I'm just embarrassed for him.

    TheAquarius1978
    Community Member
    3 years ago

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    #23

    30 People With Non-Obvious Illnesses Share The Reasons People Get Mad At Them Asthma; the amount of times I get told something along the lines of "well my friend's cousin has asthma and they don't have that trigger so you should be fine". I have really well controlled asthma but I avoid my triggers which is one of the reasons I have it well controlled and asthma is not a one fit all ailment.

    Amaranth-13 , Sincerely Media Report

    RuthieT
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    My 5 year old was diagnosed with it last year. Gets sick with so many viruses from Kindy and now school. And allergies seem to be his trigger, so I feel your pain

    Mitsuki
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Same. It's pretty controlled now but i know my triggers, try to keep my inhaler close, and know my limits. It's nice to have a fiance that keeps close and a parent that knows when to worry.

    Missy Missy
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have chronic asthma. Diagnosed when I was 2, am now 44. People seem to forget that it's a deadly condition. When I put in a complaint about perfume at work, it's not personal. I can't breathe, and I like breathing lol

    Lou Cam
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Those automatic airfreshers in public areas are a real hazard for asthmatics sensitive to perfumes. They're everywhere now!

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    Autistic apricot
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Big story time. In P.E we had to do a 4m run. I have hyper mobility and it effects my knees, and I have been told I’m not ment to run much. I was forced to run and me and my friend with diagnosed asthma were lying on the floor after (I was crying from the pain on the second lap). I l took so many puffs from my inhaler (I have 3 but not asthma for some reason) and my friend was aloud on a walk to get her breath back, I was told to take part in the relay race even tho I was in a worse condition then my friend. She dragged me away from the teacher and I was so grateful. Thank you for reading this 😅

    Chrissyfox
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    That's awful. I really sympathise with you. Your teacher is an a*****e. Get some help getting yourself excused from these unreasonable runs. I used to dread the 400m at school because it would damn near kill me. It wasn't until I was an adult that the respiratory clinic said I had undiagnosed asthma as a child.

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    Jillian Harris
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Yes! For some reason people tend to think I'm over reacting if I don't want to go in their house because they have a cat or Dog. Like I know most of the time I'm fine, and you can't tell I have asthma, but if I'm around a furry friend, I can end up in the hospital. Trust me, I hate it too! I want a dog lol

    Huddo's sister
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    A friend of mine doesn't have asthma but is allergic to cats. An ex-friend took it as a personal slight when she said she wouldn't go to their house if they got a cat. It was heart wrenching when she said 'I have to hate cats because I couldn't handle this allergy if I admitted to liking them'.

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    Chrissyfox
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have both hips replaced and asthma. Going up any kind of incline is torture. My chest feels like it's on fire and my legs feel like jelly. Okay I have some excess weight but I'm not unfit and I'm not just a fat old lady that doesn't take care of herself.

    Lou Cam
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I only found out my asthma was uncontrolled when I caught Covid19. That was awful. Yes I will now take my pink inhaler every day doctor.

    Mary Bricklin
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I've got asthma as well. It really sucks and it seriously differs from person to person. I have a very weak sense of smell but perfume will trigger really bad asthma attacks. One of my sisters has it and has a really sensitive nose, yet perfume does not trigger her. I wish people would realize that it's not a 'one thing triggers everyone' disease/condition. It's different for everyone.

    Huddo's sister
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Thankfully, my asthma isn't that severe, and is usually exercise induced, so I barely notice it most days. The one time recently I've had people not understand though it was a child, so no big deal, but explaining I couldn't blow up a balloon for them didn't go down well.

    Dani R
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Most people don't realize asthma can kill

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    #24

    Social anxiety. My mom complains that I never call, but I am actually scared of talking to people (yup, including family) and accidentally saying something stupid, or rude, or embarrassing, and therefore irreversibly ruining my reputation forever and becoming hated, despised or just a laughingstock for the rest of my life. Worst thing is that, ironically, I actually enjoy talking to people

    Shynosaur Report

    Lorraine Woollands
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have had this all my life , my parents have very understood. Told me I was by antisocial.(sorry if I am posting too much on here, but it help to get it out. Sorry)

    Mrs. Jan Glass
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Phone anxiety! I often say, if email/internet message boards hadn't come along when they did, I'd have no friends. It takes me days to work up the ability to call for a doctor's appointment. I haven't used an ATM card in almost 5 years because I have to call and talk to someone and reset my code. And it's all this same "what if I say-?" fear.

    Jodie Blair
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I'm 31 with severe social and general anxiety, I have literally never had a job and constantly feel like a failure......its awful

    Lorraine Woollands
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Sorry that should have read never unstood

    smugdruggler
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    In my area people have started wearing a neck cord - similar to what you would use to hold an ID card - with sunflowers all the way round it. They are used to indicate that the wearer has a hidden disability. I hope they become more common in other places.

    Huddo's sister
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I think they are a great idea in general, but for myself, one of my anxieties is having strangers notice me, so couldn't wear one.

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    Catherine Graffham
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    My sister has severe social anxiety and I have a fatigue condition and depression (I’ve always been ‘sickly’ though) and we’ve both said that it’s lucky that the things we don’t struggle with complement each other. She’s more capable at day to day stuff and does it for me, and in return I pretend to be her for any terrifying social anxiety stuff, like phoning the doctors, various companies, complaining if something is wrong etc. it helps that we’re twins so noone can tell us apart most of the time and I know most of the details needed for security questions (like knowing her date and place of birth - I’d be a bit concerned if I didn’t know that lol)

    Put Suly
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I've had this too, & I feel no one could understand me

    Mitsuki
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Same. My boss keeps saying "i know you dont like to call people but i need you to call me to do this or that for me." Yeah like i can just flip a switch and that'll make everything better. It doesn't. It really doesn't

    Leslie (they/them)
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Omg yes, I love talking to people but only people that I trust (and that’s few) it can be so exhausting because some days are better than others I feel you :)

    Penny Kemper
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    My son has this.... why I was surprised he text me the other day. I usually initiate.

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    #25

    My wife completely broke her shoulder many years ago, detached tendon and everything. The surgery team said she was incredibly lucky to get mostly full range of motion back and she can now lift about 5 pounds or a little more if she's using "dinosaur arms." The other one ended up going kaput soon thereafter because it's a degenerative disorder and, to some extent, it's a compensatory injury. Otherwise, she looks incredibly healthy. As a result, we keep encountering people who think she should be lifting things. At work, she was approved for a standing desk and they asked her to assemble it herself. It's ridiculous. When we go traveling or shopping, a lot of people end up giving her looks because I'm feminine and smaller than her and I end up carrying everything because she can't. I am happy to do it, but I know it bothers her. I just wish people were more cognizant of hidden disabilities.

    Carl__Gordon_Jenkins Report

    Madeleine
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    “At work, she was approved for a standing desk and they asked her to assemble it herself.” This is absurd and maddening! Such ignorant and cruel people.

    Aisling Raye
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Shoulder surgeries SUCK! I'm glad this person's wife has some mobility back. That's a lot of PT and it takes some incredibly hard work and dedication to make progress. I had a massive shoulder injury 8 years ago, I'm 3 surgeries deep and still in 24/7 pain. I will admit that I giggled at "dinosaur arms" but only because I call that move "t-Rex arms" and it made me feel like at least a few other people understand what I deal with all of the time.

    Hey!
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    At the office the IT people or the gophers would have done this, not me.

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    #26

    30 People With Non-Obvious Illnesses Share The Reasons People Get Mad At Them Dyspraxia! Most people think I'm taking the p**s when some basic motor tasks are difficult for me. Or they assume I'm stupid. Not the case, no matter how hard I try, my brain just can't always process certain things. DIY is a big one. I wish I could do it and do it well but it is very sloppy and rough even with time, practice and effort. I was late learning to swim, late riding a bike without stabilisers and have an awkward posture and gait. It could be quite embarrassing. It's not as bad these days, I'll be 30 next year so I've had time to either adapt things to the way I do them or figure things out. I used to "get stuck" in the loft if I had to go up there. Climbing up the ladder was fine, down, difficult for me. Some people assumed autism, which is not the case for me, though it's in my family.

    a-jm93 , Ethan Sykes Report

    KristinW
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    My 17 daughter has a form of Dyspraxia, it's not an easy condition to live with.

    Purple light
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have dyspraxia. I was so glad when I didn't have to gym in my last school year. I was always picked on at school for being clumsy. People still find it weird when I say I can't participate in any event that have a sport element to it..

    Kerry Borthwick
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have dyslexia and dyspraxia it's awful people call me clumsy and weird

    Missy Missy
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    An old friend of mine has dyspraxia. Her mother was told she'd never do anything, so she (mum) worked tirelessly every day with my friend. Friend now works full-time, drives, is married and has a beautiful daughter. I understand the struggle. I saw it everyday with her but neither she nor her mum gave up. They're 2 of the most amazing people I've ever known.

    Huddo's sister
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have a work friend who had to have an assessment recently so she could continue the funding she has at uni to help with her dyslexia. Now she is diagnosed, on top of that, with dyspraxia, dyscalculia and ADHD! I guess it makes the $2000 out of pocket she had to pay for the assessment more 'worth it'?

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    #27

    30 People With Non-Obvious Illnesses Share The Reasons People Get Mad At Them I have chondropathy since my mid-20s, so running, jumping, using stairs, standing in uneven grounds or kneeling has been quite painful since then. I don't have enough fingers to count the amount of times I've been denied the use of an elevator or received death stares when sitting on a full bus because... I'm young and thin so... I'm obviously lying or something?

    LTKerr , Lindsay Henwood Report

    Batwench
    Community Member
    Premium
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    For those who have never heard of this, such as myself - chondropathy: disease of cartilage.

    Missy Missy
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Thank you. I'd never heard of it but now I know.. it sounds incredibly painful.

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    Niamh Gallagher Kerr
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have a friend who is going blind. He works as a concierge in a hotel. During the day and where he knows he doesn't need to use his cane but he always carrieshis fold up one. He doesn't look "blind" but does sit in the disabled seats. Hearing is not an issue so he takes great pleasure in embarrassing people who make judgments/comments. Thankfully he has a great sense of humour.

    Jake B
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I feel for you. My 21 year old daughter has autism (moderate) and has to be supervised 24/7. We get looks for using the handicapped stall, family restroom, her needing quiet and having to leave, etc. People think we should wear our disabilities etc as a big sign. Hopefully this will change.

    #28

    30 People With Non-Obvious Illnesses Share The Reasons People Get Mad At Them I have Borderline Personality Disorder--first I have to make them understand BPD is not bipolar disorder. And I have to constantly prove to them that I am a decent person. They don't believe me when I tell them that therapists have bailed out on me after my diagnosis even though they helped me through my OCD and I don't understand why except they believe that people, especially women with BPD are 'crazy bi**hes' (ableist term istg). And there are literal subreddits and blogs demonising people with BPD--a mental illness doesn't make a person act bad, that is ableist to suggest so, a person's choices make a person act bad. You cannot s**t someone for being hypoempathetic but you can s**t on someone who chooses to be unempathetic. But I have a hard time making my friends and family understand that. They still routinely use psychopath and narcissist to describe someone doing something bad. People have it easier when it comes to recognising red flags but since I have such a black and white mentality--it is very difficult--I see red flags when there aren't any and miss red flags entirely and people act like I am stupid but I just cannot--judge. I am trying to figure things out though--it will just take me more effort than most of those who don't have what I have. They don't understand how--I struggle to have a grip on reality but it doesn't mean I have multiple personalities or trying to spite them--I genuinely cannot and then their reaction just strengthens the dissociation. And after the Amber Heard case and the psychologist suggesting she has BPD and HPD--it just---worsened people's perception of these mental illnesses--I don't know why people attach mental illnesses to bad behaviour--how will that help anyone heal? Also the understanding of BPD is so obviously on the pov of people who don't have BPD and have to 'deal with' BPD so the condition is very misunderstood hence the stigma. Thanks to it, everyone thinks it means I am clingy and have abandonment issues and I just--I can't. BPD is beyond that and I personally think the worst thing is the dissociation, the broken memories, the paranoid ideation, the loss of identity, the f****n pain and what not. However, I am getting better. I catch myself and recognise my differences and find ways to navigate the world while respecting it. It helps me accept and heal. I wish I could find a therapist though...

    neuroticfledgling , Kayla Koss Report

    KombatBunni
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Oh hugs for you! I was only diagnosed with it a few months ago and I’m still learning to recognise if something is a genuine emotion or is it BPD. My daughter has it as well and knowing that makes me feel so bad. We can barely be around each other sometimes and it breaks my heart. Therapy is helping but it’s slow going.

    Groundcontroltomajortom
    Community Member
    3 years ago (edited) Created by potrace 1.15, written by Peter Selinger 2001-2017

    BPD diagnosis here too. It's difficult seperating out what's normal and not normal, what's reality and what's not, who you are and who you're not. I'm 8 years into my diagnosis and getting there, slowly. It's a long rough road but it does get easier!

    Seule Forever
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I feel you! I have BPD too, diagnose as an adult, but certain that I had it since I was a child, but it was always misunderstood for me being difficult or weird or depressed, etc. Luckily my mother and my sister are really understanding!

    Becky Samuel
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    This is a difficult one. BPD, NPD and psycopathy are genuine conditions, but the people who have these conditions often leave a trail of chaos and psychological destruction behind them. It's very hard not to judge when someone is standing in the street outside your house at 3am screaming blue murder about something they imagined that you did. And believe me, that's only one of the less damaging incidents.

    Rens
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have BDP too, diagnosis and adult but I've had it my whole life and I can trace it back to parental neglect. Amazon the autism spectrum which is why it was pretty much left to my own devices and not giving much love, support and guidance. My BDP is managed now quite well but I still have times where it rears its ugly head

    Lisa H
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    God, I can relate so much. My ex accused me of being a narcissist and broke up with me shortly after I told him about my diagnosis. Everyone I know keeps me at a distance. No one wants to get close to me. I now have a very hard time trusting people as a result. I wonder if I should just keep my diagnosis a secret just so people will feel safe around me, even though they have no reason not to. I hate this disorder with every fiber of my being.

    B C
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    BPD here as well. Amen. I wasn't diagnosed until this last year after I finally found a good therapist. I had been seeing her for a breakup involving narcissistic abuse and she recognized what I had going on. Rather than deny me, she took me and I've been working with her the last 8 months. Everything here. Everything you've said. It's something that I cannot explain or describe to anyone other than those who love me and/or who have known me in my 40 years. The black and white thinking is so difficult to work around. Empathy is a struggle. Positive thought does not come naturally, it takes a lot of effort and is exhausting. It's impossible to explain how it feels to live like this and some days I'd rather not but that's not an option. Good luck, hon. We need it.

    Janique P
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    If you haven’t already, see if you can find a therapist specialising in dialectical behaviour therapy (preferably one recommended by their patients). They are - or at least should be - specifically trained in understanding BPD, and the evidence shows that DBT is one of the most helpful treatment modalities. Best of luck finding a good therapist!

    Mrs. Jan Glass
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Insert my overwhelmingly enthusiastic rec for the show Crazy Ex-Girlfriend. This is why so many of us bring Rachel Bloom our prescription bottles to sign.

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    #29

    I have erythromelalgia which causes severe pain in my lower leg and feet. This along with several other underlying issues in my feet make it extremely painful to walk some days. I get a lot of “just wear better shoes” or “use an insert” because people just assume it’s something I can just make go away. I’ve tried literally everything and it hurts no matter what I do or wear. My only option is pain management with medication. I also live with very “high functioning” depression and low grade anxiety. And I get a lot of “you’re not depressed! You’re so outgoing and active” What people fail to realize is, when I’m off the clock, I’m completely exhausted from being “switched on” all day long.

    padi_cake Report

    Kurtis Cobainus
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    So true about the second part. I don't have depression but that's what so many people think. Depressed people have two modes. Outside and happy, inside and sad

    PixxelDust
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    wait... is that what high functioning depression is? because that sounds an awful lot like me

    My O My
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    It sounds like me too. I've only learned about it lately. Officially it's only low grade depression, but I remember doing my normal workload whilst being highly suicidal

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    Yettichild
    Community Member
    3 years ago (edited) Created by potrace 1.15, written by Peter Selinger 2001-2017

    I hear ya on the foot pain. I was born with club feet. The bones in my feet are crooked. Plus when my back was injured the only thing that helped walking and my arches fell. Then a doctor who was supposed to just remove a neuroma in my foot also cut off part of a bone he wasn't supposed to. I have to have $400 custom orthotics in my shoes and my feet still hurt badly on a daily basis.

    AnonymousApple
    Community Member
    3 years ago (edited) Created by potrace 1.15, written by Peter Selinger 2001-2017

    Severe anxiety with panic attacks. Anyone who has had anxiety gets it. People who haven't, tend not to understand the severity. When I have a panic attack, it generally last about 24 hours. I shake uncontrollably, vomit, pass out, hyperventilate, sweat, have a racing heartbeat, and a general sense of unbearable panic the entire time. It someone offered me heroin in the middle of a panic attack, I'd take it. Just add it to the cocktail of PTSD, OCD, bipolar, and major depressive disorder, and it just starts to sound like you're a sad sack of mental illness that people can't relate to. Thing is, I don't think of it as mental illness. I think of it as descriptors of how my brain works. And damn, guys, sometimes it makes just surviving day to day seem like an insurmountable task.

    Jode Mode
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    “Just” wear better shoes. 😤

    smugdruggler
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Is this "Mitchell's disease" ? I've heard of it, I think, it's supposed to be extremely painful. Have you tried cannabis for the pain?

    Patti Disbennet
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Of course I misspelled it (see previous comment). (Eye rolling at myself) Erythromelalgia is correct. When she was first diagnosed I learned it wrong and my brain doesn't want to let go of past mistakes lol

    Patti Disbennet
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    My daughter has erythromyalgia (along with some other conditions). It's a very isolating condition, difficult to explain to someone who has not experienced it or watched a loved one suffer with it. I feel for you. You are not alone.

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    #30

    30 People With Non-Obvious Illnesses Share The Reasons People Get Mad At Them I have a serious back condition caused by a prolapsed disk damaging the nerves in my lower back. I often ask co workers to lift things for me, I get especially weird looks for light items that are close to the floor. This is made worse by the fact that I'm a 6'3 250lb well built man

    automatorsassemble , Afif Kusuma Report

    Ren Karlej
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Yep, have this problem. My elderly mother would pick things up in shops if I knocked anything to the floor and open heavy doors for me. Looked awful but she was fitter than me!! Never assume you know what's going on with people.

    Helen Waight
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Spinal injury here - people can be really cruel about ‘well, you LOOK fine, besides you’re tall so go get that item and shut up’. No, if I try to pick up that box of printer paper I will be in bed for the next WEEK.

    TheAquarius1978
    Community Member
    3 years ago (edited) Created by potrace 1.15, written by Peter Selinger 2001-2017

    Yea... I had a " similar " isue once, though mine was not cronic, i poped my back once because of the car ( suspention way to hard ) and i couldn't for the sake of me lift 10kg off the ground, my coworker's where pissed at me because they had to stop what they where doing to help me sometimes, and my problem only lasted a week ( we have the same size more or less )

    Catherine Graffham
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    My friend has a chronic back and joint issue and the amount of hateful looks and comments she got as a teenager who couldn’t go up stairs and walked with a stick was sickening. The only reason she has it better now is that she looks older and I guess people for some reason seem to think it’s more ‘likely’ to be genuine now? People can be so weird

    InfectedVoiceBox
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Same height and a little heavier, I had a herniated disk in my neck many years ago and for the best part of a year I had to rest my left arm on something if it just dangled in the air it would start tingling and I had basically no strength in it for a long time, I'm a big dude and it was horrible not being as "strong" as I was.

    Yettichild
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Yeah, I herniated a disc in my lower back and it pinched my sciatic nerve. I was in excruciating pain. I've had surgery to remove the bulge, but the scar tissue is somehow in tangled with the nerve and if I do certain things my face flushes bright red and gets really hot. My back also hurts a lot from compression, but at least the nerve isn't pinched anymore.

    smugdruggler
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Yeah, I have a similar problem. I have a prolapsed L4/L5 with spinal canal stenosis (i.e. the disc has bulged inward, into the spinal cavity rather than outwards, away from the spine ). This irritates my sciatic nerve causing neuropathic pain and parasthesias in my left leg. Mostly I can walk a limited amount but sometimes it's so excruciating that I'm stuck in bed all day. My balance is also affected and I constantly get glared at for being "pi$$ed"!

    Jason
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I'm pretty active and strong but the same problem. Getting things off the ground and lifting certain directions can be bad. Multiple herniated disc, scoliosis, stenosis, degenerative disc disease, and arthritis.

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    #31

    I have fibromyalgia and people do not understand that sleep alludes me due to pain and that sudden weather changes leave me in agony. I look normal but never stop hurting. Trying to do everyday tasks can leave me exhausted.

    NewspaperAlarming693 Report

    Nikki Sevven
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    People also don't understand that fibromyalgia has its ups and downs. One day, I might be able to handle laundry, dishes, cooking, showering, etc. The next day, getting out of bed is painful and difficult. Sleeping is a crapshoot at best; my nights are more like a series of light naps than a full night's sleep. Weather changes completely derail plans, as does unexpected stress.

    Angarade
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Same. I nap several time a day (if it's a good day). Fatigue is sometimes so intense I throw up. On bad days, even wearing clothes hurts.

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    Rens
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have fibromyalgia and my as well as all the other lovely things that come with them. I'm not ashamed to say I use opioids, because it's the only way I have any functional life. My pain management is quite good at the moment sleep is always a problem and having to deal with people's judgement is frustrating. I am overweight now due to my inability to exercise and I'm ability so bad now I use a mobility scooter to get around on. People look at me and think that I'm fat and that's why I'm sick when in actual fact I am fat because I'm sick. I have been very thin, I have been the correct weight for my height and none of my fibromyalgia symptoms ever disappeared so I know it's very obviously not weight related

    Pirates of Zen Pants
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have fibromyalgia, and it's hellish. I never stopped looking for answers. Other patients pointed me toward low-dose Naltrexone (4.5 mg nightly), so I lobbied my doctors with medical articles until they gave in and prescribed it. It has reduced my pain by around 40%, which is the difference between "impossible to survive longterm" and "OK, I can handle this." Trazodone is non-habit-forming and allows me to sleep through the night. Doctors, including rheumatologists and neurologists, typically know nothing about fibromyalgia, so patients are often in the position of having to bring them information. I did, and it was worth it. This was the article that changed my rheumatologist's mind: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576. For more information, see ldnresearchtrust.org.

    Izzy Curer
    Community Member
    3 years ago (edited) Created by potrace 1.15, written by Peter Selinger 2001-2017

    I don't have fibromyalgia, so I can't really speak for it. My aunt does, which is what got me interested in looking into it a few years ago. I came across a pretty persuasive article written by a doctor who noticed that many of his patients with fibromyalgia were caregivers of some kind. It didn't seem like he believed this was for *all* cases, but he believed the chronic stress of looking after another individual, in whatever capacity, was causing people's muscles to not fully recover each night like they're supposed to. Basically, people stayed so tense, it was like doing a hard workout. Normally, after exercising like that, you're supposed to take a few days off for the tiny tears in your muscles to heal. But, if it's being caused by stress, you can't. He claimed that his patients who made life style changes where they stopped taking care of others and started taking care of themselves saw improvements. Then again, my aunt speculated that it may be a 'long form' of a virus, which is starting to make more sense now that we understand what long covid does. But I noticed she basically seemed to recover after divorcing her ex, so...

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    kitteh floof lover
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    i've had fibromyalgia for over 30 years. the only way i can sleep through the pain is with low level amitriptyline. i take it at right before bed, and sleep for hours despite the pain, it's worth a try. good luck. fibro sucks!

    Yettichild
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I take amitriptyline every night for insomnia, but I also have a genetic disorder where it's common to also have fibromyalgia. I have a mild case, so it doesn't effect me nearly as much as my other issues. I get small patches of pain that usually last from a couple minutes to a couple hours, but I couldn't imagine having that kind of pain widespread for long periods of time.

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    Sammie 19
    Community Member
    1 year ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Me too. I get called lazy. Fibromyalgia plus bad depression makes me feel so tired I spend 24/7 lying down on the bed. My apartment looks like a bomb has exploded and I just don't have the strength or energy to do anything about it and every time I look at the mess I feel even more depressed

    #32

    Anxiety. Sometimes you want to stay away from people and not go out. My family takes it personally.

    SilverstoneOne Report

    T'Mar of Vulcan
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I struggled with anxiety my entire life. It first manifested when I was a teen and was bullied and extremely unhappy in high school. I tried to explain my feelings but my mom was completely dismissive. "I told you high school would be different from primary school, but you didn't listen." Essentially blaming me for not coping mentally with daily abuse. I was also extremely anxious about learning to drive and crashed the car twice (once into a hole and once into the wires holding a street pole up - luckily both times there was minimal damage). I discovered LAST YEAR that I reason I can't drive is because I have a problem with depth perception due to my right eye not functioning properly. I would tell people, "I can't judge how far I am from things," and they would laugh at me and say, "If I can drive, anybody can drive!" A friend even took me to get my learner's when she took her daughter. Not surprisingly, I failed the eyesight portion of the test.

    #33

    30 People With Non-Obvious Illnesses Share The Reasons People Get Mad At Them I have autism, ADHD and a pretty severe anxiety disorder. One relative got extremely mad at me for getting onto disability because their friends weren't able to get disability support for their autistic kid, because apparently this child looks more autistic than I do. Even leaving aside the huge amount of effort and support I needed to get where I'm at, or the way autism is a spectrum, *or* the way my ADHD and anxiety are the things that really render me nonfunctional... I agree that it's too difficult to get disability support, and those people *should* be able to get help? Sorry I don't look autistic enough on good days and stay home on bad days, I guess?

    Pseudonymico , Elsa Tonkinwise Report

    Madeleine
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    The relative has a crabs-in-a-bucket mentality. It’s something ignorant people (in the US, at least) often have about workers’ pay and rights as well, and here it is about disability benefits, another financial benefit. It’s too common and very destructive. It keeps solidarity out of reach, which only benefits the people who profit from inequality and from the lack of support for working class people. https://en.m.wikipedia.org/wiki/Crab_mentality

    Autistic apricot
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    This is where society is. You have to look autistic to be autistic. You cant look autistic

    Huddo's sister
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    The whole disability benefit issue is a problem for many people. The media, encouraged by politicians, always claims there are far more people getting it while not actually eligible than there actually are, and it makes it so much harder for everyone who needs the support. Someone else's condition should not be used as a justification or lack there of for your own need.

    Madeleine
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Lowbrow media targeted at a simple-minded audience does that. Media for educated people that actually presents information and isn’t meant to be entertainment for ignorant people doesn’t depict things that way.

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    Jake B
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I’m glad you were able to get your disability. As for your parents friends they may not qualify for monetary assistance for their child due to their own incomes. They may have to wait until the child is older- lots of rules. Don’t ever feel bad about receiving help. You know your being honest and their is no shame in that. The shame is on those who criticize or think your wrong. My child has autism and it’s not easy.

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    #34

    30 People With Non-Obvious Illnesses Share The Reasons People Get Mad At Them Bipolar. I need to keep my stress levels as low as possible and I need a lot of sleep because my hypomania can be triggered by stress or lack of sleep. I also have to have specific meals on specific times of the day because of my meds. I also have ADHD and can't take most medications for it due to my bipolar. Oh, and I have to stay away from grapefruit, activated charcoal, and natto because of how they cause me to metabolize my meds.

    twitchy_taco , Simran Sood Report

    rennie roo
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have the same, but I used to lovelovelove grapefruit :,(

    Lou Cam
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I've read that untreated ADHD is the cause of many bipolar diagnosises. It's like the body can only stand so much stressful input in its life. I have family members with both and they struggle.

    Madeleine
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    No, that is not correct. They are two different conditions. A person may have both but one is not the cause of the other.

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    #35

    I have centralized vertigo, which is in the brain- not ears. Regardless of whether I am sleeping or awake, everything rotates. Even with meds I am usually dizzy and nauseous. Sometimes just changing my sleep position from back to side can take a 1/2 hour and getting out of bed can take hours depending on how "fast" the spin. Trying to walk a straight line is even worse, even with a cane or walker and I often need to stop and rest. So you can imagine how long it might take me just to sweep a floor or wash dishes. When people find out it's vertigo, they offer me medical advice that works for vertigo caused by crystals in the ears. Balance therapy doesn't work, yes I have tried...multiple times. Did you try losing weight? Yes try exercising when any movement makes you want to vomit. I take this med... Yes I take 5 different meds just to manage the vomiting. On rare occasions, I do have days where I look normal (body doesn't noticeably rotate) and dizziness/nausea is manageable and I may go grocery shopping, go for a walk, or go to the movies. What they fail to realize is typically after those rare days, I may be in bed the next day or two with my vomit bucket next to me because I did "normal" things.

    yep-MyFault_Again Report

    TheAquarius1978
    Community Member
    3 years ago (edited) Created by potrace 1.15, written by Peter Selinger 2001-2017

    I had a similar s**t happen to me once i went to bed fine, woken up at 4am to go to the bathroom the entire Room was spinning and i had the felling i was falling, like a free dive, luckely my SIL is a doctor and told me that was just my vestibulary system " acting up " because i genuinly though i was having some sort of Stroke at the time, luckely it only lasted 3 hours, o still get Dizzy sometimes but its easily controlable with pills, but its a f-ed up thing, it literally debilitates you to the point of not being able to just stand up.

    Gin. No tonic
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have a similar thing - nausea, world spinning, balance problems. Mine is related to C2 vertebral instability.

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    Hey!
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have Meniere syndrome and this sound exactly like that. It's genetic. I manage it with acupuncture and Serc 24mg. I hardly take the medicine now.

    Seedy Vine
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I saw a video on youtube that showed poses to use to alleviate vertigo, but in this case I'm not sure it would be effective...

    Hey!
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    They work for Meniere, when you can remember how to do them.

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    KING ILLEGAL FOREST
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    OMG SAAAAAAAME, I've felt like I'm on a gently rocking boat pretty much 24/7 since my early 20s. Put me on any kind of carnival ride, and I will be bedridden for at least 2 days. Buses, trains, and planes? HOT MESS for at least a day. On top of having MS, some days are just freaking impossible, and yet "but you look fine?"

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    #36

    I'm an alcoholic, don't know if that counts as a medical condition. I don't drink (or I'm trying not to) but if I have even a sip of beer it's f*****g game over for at least 5 to 7 days. It's crazy. I know on some level it's a choice so I'm choosing not to drink at all now. Everyone of my friends just thinks I enjoy getting wasted but it's really not fun the f*****g state I get into.

    Epatubiq Report

    Pirates of Zen Pants
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Yes, it's a medical condition. You're a total badass for choosing not to drink. My father and two uncles had alcoholism, and they didn't make your choice. I wish they had. I have a friend who has been off the booze for years now, and her life is so much better than it was before. Hats off to everyone working on their sobriety! I can't imagine how tough it is, and I have so much respect for people like you who are making the tough choices.

    Shane S
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I’ve had to a stop a friend from telling another “just don’t get wasted every time. The trick is just to have a couple drinks”. Obviously, this person didn’t understand that’s not a workable solution for someone with alcohol issues.

    Maureen Rosol-Short
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Hang in there, it is a serious medical condition that you have to stand up to all the time. Proud of you.

    Izzy Curer
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I believe alcoholism is actually a type of sugar craving. People can have all kinds of different ways of processing blood sugar, so it totally is medical.

    Erik Ivan
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    The alcoholics I know actually hate alcohol. Really, they hate it because it take so much of their life away.

    Rens
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Addiction can come in any forms I am very vulnerable to addiction anything that rewards the pleasure centre of the brain can set me off whether it's alcohol, sex, internet chatting, gaming, food, work, going to the gym... I recognise addictive behaviour and and nip it in the bud as much as I can or else I find something positive I can be addicted to like cleaning also have OCD, ADD, ASD, and BDP so I'm constantly juggling everything all the time.

    Snakery Bakery
    Community Member
    3 years ago (edited)

    This comment is hidden. Click here to view.

    Nope. This is actually something you CAN control. It's not a medical condition, it's a choice. People can't decide not to have a disease, but you can decide not to drink. (Edit: please stop downvoting. Downvoting is NOT a dislike button. Don't downvote just because you don't "agree". Let's have a civil discussion please.)

    Rachknits
    Community Member
    3 years ago (edited) Created by potrace 1.15, written by Peter Selinger 2001-2017

    I don't think you understand what addiction is. It's a compulsion to use/drink. If anyone has ever tried dieting then just multiply that by 100 and that's what it's like trying to stop drinking/using. The most simple explanation is 'mental obsession and physical compulsion '. If you have alcohol in your system you have absolutely no control - that's the physical compulsion. Once you've stopped there's the mental obsession to deal with and that's what makes staying stopped so tricksy. Recovering addict/alcoholic here with over 24 years of recovery

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    #37

    Moderate depression. When you're having a low and everything looks like a mountain it doesn't take long for family to tell you to pull yourself together.

    Now_Villager Report

    Oliver Coine
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    And/Or your family tries to "fix" you because they don't like seeing you "sad" so you're just kinda stuck being fake happy until they're also satisfied.

    ItsJess
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    "you feel the way you act"- my family believes in the "fake it til you make it" treatment for depression

    Donna Clanclan
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Combo of a side effect of a medication I have to take and hypothyroid = persistent depression which isn't caused by stress or work or anything that I can change to make it go away. Most friends and family don't understand. I can take anti-depressants, but it's not recommended by my doctor as it will interfere with the medication keeping me alive. People would visit and ask what they could do to help. Laundry. Do a load of laundry for me, or load/unload the dishwasher. They thought I was nuts for asking for that kind of help. 'No one is going to clean your mess up just because your sad.' One day mom and dad came to visit for a week. The whole purpose was to spring clean my house, it was summer already. Dad and hubby helped mom clean everything then went and did all the maintenance. I curled up on my recliner crying and cuddling the cats the whole time. Mom made us tea and had brought all my favorite tea cookies. 1 day of cleaning, 4 days of no pressure to be happy.

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    #38

    I have Polymorphous light (PML) eruption. Basically I’m allergic to the sun. If I’m outside for even 15 minutes I’ll start breaking out in these itchy, burning bumps on my hands, arms and legs. I get horrible headaches and nausea. I get a lot of s**t for not wanting to go outside or do outdoor activities. My friends and family tease me a lot and I just roll with it most of the time. My maternal grandma has it and so does my mom. We’re all affected by it differently. I seem to have the most sensitive skin of us all. I unfortunately can get the outbreak just by being next to a window. It’s not fun! It’s so itchy and very easy to make these bumps bleed and burn. I get teased a lot because of the cloud of sunscreen I leave in my path lol but I gotta do what I gotta do!

    Velvetpawss Report

    Pumpkin Spice
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Oof. How can your family be so insensitive (ha) if your mom AND grandma have it??

    Corinne
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    My son and I both have it. My son first broke out with it when he was 7. I first broke pour when I was 21. My son is now 35. He just let's himself break out from the sun. After a while, it'll be ok until the next spring. It doesn't work like that for me.

    Becky Samuel
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    While I was technically warned that UV sensitivity was a possible side effect of my antidepressants, what they completely failed to mention was that the effects could be permanent. Even 10 years later I can't go out without plastering myself with sunscreen.

    censorshipsucks
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Now I'm wondering if this is where the legend of vampires came from...

    Gin. No tonic
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I've had this for one Summer couple of years ago as a (super rare) side effect of the meds I was taking. It was really bad - itchy and hives just sitting by the window. If I went outside, I had to wear long sleeves, sunscreen on every inch of exposed skin, and a big hat, and trying to stick to the shade. I wouldn't want to live like that always. I'm lucky this condition faded away a few months after stopping the meds.

    KING ILLEGAL FOREST
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I break out in huge rashes in hot weather (like anything over 70F I consider way too hot) and IT SUCKS.

    Sammie 19
    Community Member
    1 year ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I don't have it the way you do but I'm extremely light sensitive and live in the dark at home and I can't go outside when it's light out. Instant migraine. No one understands how it feels. People say oh it's a lovely day, the sun is shining and I'm just thinking oh no, now I have to cancel my appointment because it's too light for me to go out

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    #39

    30 People With Non-Obvious Illnesses Share The Reasons People Get Mad At Them Diabetes (type 1, but I know a lot of type 2 people can relate). Eating is hard and my parents often got frustrated with me when I was living with them for how I took care of myself (or didn’t) and whether or not I checked my sugar on time (and if it was high) AND my insulin calculations. Un/under-educated friends and family are notoriously bad about “can you eat that?” comments and make a lot of comments about my body as well. If you’re not skinny with type 1, it’s an automatic assumption you have type 2. If you’re skinny with type 1, it’s confusion about how you can be skinny with diabetes (also: you can have type 2/insulin resistance and be a skinny or healthy weight; it’s very genetics based among other reasons). If I DO use diabetes as an excuse to not eat or partake in something, it leads to negativity and, you guessed it, them assuming you’re using it as an excuse. S**t, even doctors are bad about knowing how to treat type one unless they specialize in it; they’ll give you c**p for the most minute detail of your health w/type one if it’s not perfect. Diabetes ALSO comes with a massive list of potential comorbidities, including mental health issues. Dude, it’s so tiring to just survive with it.

    nosyllaste , Klaus Nielsen Report

    Donna Clanclan
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Hubby and a friend have those sensors which have an alert on their phone. I love that alert. It goes off every 5 minutes with no way to 'sleep' the timer for a half hour when it happens. They get annoyed; I get worried. Hubby more so than friend has a difficult time eating right. Poor impulse control, etc. has made it difficult for him. He thought it would be a great idea to make me the one who holds him accountable for his diet. It's only caused friction between us. Now that it's his phone that's nagging him it's much better. He does better sticking to his diet and there isn't that friction between us. He's had some doctors who were real pills about his diet. One ER visit put him in the hospital for 3 days. The doctor did tests and adjusted his insulin every 2 hours. Got his numbers right, told him to keep it that way, and release him. Never figured out what caused the symptoms that sent us to the ER. 3 weeks later, it happened again. It was his kidneys failing.

    AmAndA_Panda
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Good Gods yes. I've had type 1 for 30 years. Type 1 and the insulin shots you have to take can lead to weight gain. So everyone assumes I've a type 2 and the judgement I get for it is awful. Nothing but contempt from people. Also people just don't understand. Yes, it matters if this is diet soda or not. It could kill me. No, I can't just eat whenever everyone else feels like it. And even doctors are so judgmental and unhelpful. I've never been able to follow a specific schedule and dose of insulin. Some days I run high all day with multiple shots and no food. Some days I eat like normal and barely take any insulin and I run low all day. Doctors don't believe me and blame me. Not to mention I'm just exhausted all the time.

    JJ
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Yes I've been through insulin shots then the insulin pen now finally the pump. Best invention ever for type 1 diabetics who can now get much better control with pump and sensors working together. My numbers have been so much better than ever before. I agree though that some days you just can't control it and there's no reason.

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    Maureen Rosol-Short
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    As a type 1, I hate the comments, "Oh, you can't have that!". Like I'm so stupid that I can't use my equipment to cover what I eat with insulin.

    Helen Waight
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    So much of the ‘well, you shouldn’t have eaten so much junk food - that’s what gives you diabetes’

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    #40

    30 People With Non-Obvious Illnesses Share The Reasons People Get Mad At Them I very recently got diagnosed with fibromyalgia, and also have pseudotumor cerebri. It's very vexing to explain that it's really hard to do enough cleaning to get by or even make a phone call when so much time is spent resting. Half of my family never talks of any of it as anything other than laziness when speaking to just me. In public, of course, everyone is more supportive.

    Psacey , athan Dumlao Report

    Pirates of Zen Pants
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I wonder if you have ME/CFS in addition to fibromyalgia. The telltale sign of ME/CFS is six months or more of feeling exhausted after any exertion -- physical exertion, cognitive exertion, emotional exertion, you name it. You can find out more about the diagnostic criteria here: https://www.cdc.gov/me-cfs/healthcare-providers/diagnosis/iom-2015-diagnostic-criteria.html. (I have fibromyalgia and ME/CFS. Many sufferers have both.) I'm sorry half of your family doesn't understand your diagnosis. I've been able to educate about half my family members, but others remain baffled and judgmental. They were like that before I got sick, though.

    Huddo's sister
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    How do you know when it's more than fibro though, as exhaustion is also a symptom of that. I have just gotten past a 2-year flare up and there was never a day I wasn't exhausted but the rheumatologist never suggested there could be more than fibro.

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    #41

    It's well established in my family that I have pretty severe memory loss. Not just short or long term, generally memories either dont form properly or they turn into a 'void' of nothing after a few minutes/years. So they'll tell me something to 'remember for me' and when I've forgotten it hours later I'll get a lecture of some kind. But if I write it down they take it as an insult? Which f***s me right off. It's been a problem since early childhood. My mother liked telling me it was 'selective memory loss' and punished me for it often until a psychiatrist told her I wasn't lying.

    NocturnalFuzz Report

    Pumpkin Spice
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Little f**k of a mother. May I just....*puts on boxing gloves*

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    #42

    30 People With Non-Obvious Illnesses Share The Reasons People Get Mad At Them I have Lupus and Fibromyalgia. I'm in constant pain, my joints always feel like they're on fire, I'm regularly sore/stiff, and having suffered from them for a long time without any medical treatment (on Medicaid and I've not been able to get into specialists to get treatment since my diagnosis), and it regularly makes it difficult to do even the most simple of tasks, leaves me tired all the time, caused severe depression, etc. I had roommates that complained that I wasn't doing my share around the house/socializing enough. I tried to explain multiple times that my medical conditions made it virtually impossible for me to do the things they were expecting of me, especially on the level that they were wanting. I cleaned up after myself, cleaning the dishes I used, putting them away, stuff like that. Sometimes it was a day or two later, but I always did so. It'd take a lot out of me to do so. They'd get mad I wouldn't do all the dishes, clean the bathroom regularly (despite my telling them I physically couldn't clean certain things like the tub or toilet the way they wanted it clean because of my joint pain, and offering to clean what I could if the roommate I shared it with cleaned the other things), and cleaning up the living room, den, and garage, despite never using any of those three places as unless I had work (which I had to force myself to go to which took almost all my energy to to do, because no income, no way to pay bills), I basically only left my room to go to the bathroom, or make food/get a drink. It got to the point where it caused a huge fight right before our lease ended, and all 3 of them said they wished me the best, but that they wanted nothing to do with me going forward, including the one roommate that I was close friends with at the time. It broke my heart that they couldn't be more understanding, and that they expected me to do more than I reasonably should have had to do, even factoring out my medical issues.

    zeiaxar , Ephraim Mayrena Report

    Pirates of Zen Pants
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have fibromyalgia too. The pain is almost impossible for able-bodied people to understand. I'm going to write this comment on all the posts about FM: please consider looking into low-dose Naltrexone. I did, and it's the only reason I've been able to survive. You typically have to get it from a compounding pharmacy, and in the US, insurance doesn't cover it. But it moved my pain from screaming unholy hell down to "OK, it hurts, but I can cope." Important links: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576 and https://ldnresearchtrust.org.

    Amanda
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    As someone recently diagnosed with fibromyalgia, I felt this. But f**k your roommates, they’re selfish assholes if you ask me. I really hope you found a better support system, because the last thing you need is stress like that in your life.

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    #43

    I have a bunch of medical issues, but let's start with the one I was born with- a hip deformity. The only visible sign is that my feet angle outwards, but it causes me a lot of lower back/leg/ankle joint pain. I can't stand or walk for a significant amount of time, can't ride a bike or skate (because my hip joints won't move that way), etc. Most people just assume I'm lazy because I'm fat. Not wanting to walk, take stairs, need a seat on the train, etc. But I'm often in a lot of pain. The pain from these daily activities makes it virtually impossible to exercise, which is probably a factor in why I'm fat to begin with. Add to that PCOS (which almost always leads to diabetes, according to my endocrinologist), diabetes, gout, mental health issues, hypothyroidism, and I'm just a barrel of fun! These are all genetic- I have the same conditions as each of my parents. It sucks.

    shanabur329 Report

    AmAndA_Panda
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    People really don't understand how crappy hypothyroidism can be. The constant exhaustion and mood swings alone are such a pain and people just think you're lazy and bitchy.

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    #44

    ADD. People don’t realize that I forget to pick up after myself. I really put my mind to it, but when important things come up, I drop everything to focus on the task at hand and I need a couple minutes to regroup. In this meditative moment, it seems like everyone around me has to shame me that my papers are too cluttered and I should get on that straight away. It’s f*****g papers

    BeautifulInfinite288 Report

    Pumpkin Spice
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    In my experience, I make a bunch of binders/folders and sort everything out. Easy to maintain, hard to get started.

    censorshipsucks
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    ditch paper and move to digital. Content search on apple machines is good, no need to even use filing systems.

    #45

    30 People With Non-Obvious Illnesses Share The Reasons People Get Mad At Them I have a cognitive disorder that makes it difficult for me to finish tasks at the same pace as others. People always get frustrated at me because they don't understand how I can spend 10+ hours on a task and still not finish it. It's hard because I'm the one that's the most upset about it but it reads the exact opposite to people. They can't see the internal struggle so they assume lack of results equals lack of effort and care.

    SquilliamFancySon95 , Aleksandra Sapozhnikova Report

    Autumn
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I wish they’d told us what it was. It’s sounds at least somewhat similar to what I have.

    Huddo's sister
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    No one understands my mum and I when we say 'why are recipes always so wrong on the time it takes to prepare the dish? It sometimes takes 20 minutes to cut up chicken etc.' I remember one day last year it took me 45 minutes to cut up a couple of carrots and 2 chicken breasts. It's why I start cooking dinner by 5 or 5.30, so it will be ready at 7.30 at the latest, or I just get something out of the freezer.

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    #46

    Sensory processing disorder. My parents use to hold me down to dress me and try to keep me safe when I was overwhelmed, so they know how difficult it is for me to do things and are very understanding. But teachers and friends are less understanding because they haven't lived with me, they don't know how much s.p.d. has affected my ability to function.

    Front_Row_5967 Report

    Pirates of Zen Pants
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have this too. I have trouble with the sense of touch. Apparently I had it even as a baby, because my mother once took me to the pediatrician at age one and told him that I didn't like the lumps in baby food. As a three-year-old, I would take my shoes and socks off because the pressure was uncomfortable. I invented the word "bunchy" to describe things that were physically unpleasant, like being crammed into a snow suit. To this day, I don't wear shoes and socks around the house, because the pressure makes my brain shriek at me. Silk pillowcases are my friend.

    Autistic apricot
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I wish people would keep me safe when I’m overwhelmed, I just get told I’m being a big baby

    Huddo's sister
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I'm sorry that happens to you. I often had to do it to help my sister and it is so important there is someone you feel safe with. I remember on one of the first days I was nannying for a family (so already out of routine for them) the youngest had a huge meltdown as we were leaving for school (I think maybe when I told him he needed to put his shoes on) and then he started throwing things around the room and banging his head on the wall. I had to physically hold him against me until he was able to feel safe enough to think about what order he needed to do things to get out the door for school. I never had to get as physical with my sister, usually holding her hands and speaking in a firm whisper did the trick.

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    Autumn
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    My younger brother has this! We get him clothes with sequins or texture and we have these sensory blankets that we wrap him in.

    Huddo's sister
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I had a child at preschool who had one pair of pants she wore most days because of the texture. Not long after we got a couple of the colour changing sequin pillows and it helped so many of the kids.

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    #47

    I have agoraphobia alongside other mental health issues, the front-runner being complex-PTSD. My husband frequently becomes very frustrated with me because of how terrified I am to go out into public, especially when I’m alone. When I say that I can’t, it means that I really, truly can’t. The feeling that comes over me is entirely crippling, suffocating, and unbearable. Times that I’ve tried to break this, I’ve ended up sitting in the parking lot for 20 minutes and driving back home. I haven’t met another person who has the same issue as me, so it’s a very vulnerable thing for me to post here.

    prestigious_butt Report

    TheAquarius1978
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    It shouldnt be, everyone has phobias, my SIL hás aracnophobia lol, She literally hás a panic attack if She sees a Spider, no matter how small or harmless it os, i met a woman once that had fobia of birds ( don't recall the techical name ) i almost crashed my car because of it, She was " riding shotgun " with me and a pigeon flown thrue the Window of the Passenger side, She started screaming in Panic and weaving her arms like if the pigeon was trying to kill her, i almost crashed, i have hydrophobia if i go to a pool neck deep, life is good, if i go to the beach waist deep i start having a panic attack. Phobias are nothing to be a shamed of.

    Helen Waight
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I can’t even say or type the s word - I have severe arachnophobia. Luckily my cat will hunt down and remove any of the S from my house.

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    rennie roo
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have this exact experience. I feel you. Yesterday my family wanted to take me to brunch, and I sat in the car for 15 minutes crying because I was scared to get out. My mom made me come in, and I had a panic attack in the bathroom. You're not alone.

    UpQuarkDownQuark
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    When you let someone know that they could see their favorite band with their best friends on a pleasant spring day amid the blooming flowers of the field, and their response is a sad and defeated, “I want to go, but I can’t. It’s terrifying,” don’t you think you should take them at their word?

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    #48

    I have Ankylosing Spondylitis, which is arthritis in the spine, and so 99% I'm parking in the handicap at work and any where else I go because it hurts like a mofo, I also have arthritis in the knees, same pain level and I'm sure I get the judging eyes from strangers because they see someone who looks normal, just being lazy, when they don't see the amount of pain I'm in. So, I understand

    Dry-Ad5762 Report

    Odile Wipp
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    My partner has this in combination with other issues and it is so hard to see him in constant pain. He cannot sit, stand or sleep in one position for long and when he wakes up in the morning he needs so much time with a heater on his back to loosen it up to a point where he can just move. He has tried to explain it to people, but they just go blank, not caring, and suggest stupid stuff for him to do as if a bit of stretching will cure it.

    RMA
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    And sometimes you don’t know how that day is going to play out. You park in a disabled bay and look fine and get nasty looks, but by the time you finish your errands you are in a lot of pain. Or one day it’s not that bad but how are you to know from one day to the next!

    #49

    30 People With Non-Obvious Illnesses Share The Reasons People Get Mad At Them Visual impairment or hearing impairment can be hidden. It's a spectrum and while people presume you're either 100% blind, deaf or "perfect" there are 100,000s who fall somewhere in the middle where they can do some tasks but not others. We have issues with some family feeling sure anyone who wears glasses are VI, yes except glasses correct their vision, where as someone legally blind or who identifies as VI glasses do not correct their vision

    niamhweking , Nathan Dumlao Report

    Justme
    Community Member
    3 years ago (edited) Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have an auditory processing disorder where I basically can’t hear 2 things at once. My dear husband of 10 years either forgets this or doesn’t believe it and constantly talks through movies and shows. He gets mad at me when I’m constantly hitting pause and asking him to repeat himself. 2 people speaking at once is just noise to me and I can’t comprehend either one.

    Huddo's sister
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have never been diagnosed but my sister has and I'm fairly certain I have it too. I never thought it effected me greatly which is why I didn't get a diagnosis, but I recently started working in an afterschool program that takes place in the school gym and so many times I have missed something my boss has said because of the echo noise in the room. Come to think of it, when I first started working in preschools I did have some issues, but as I got to know the other staff and my role/routine I found it easier to ask them to repeat something if I was unsure.

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    Plebbit
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    My vision is very strange. I have better than 20/20, but I see two of everything. I can't go cross-eyed, either. I can only get them to pull in so far and then they sproing back to a normal position. Glasses don't fix this.

    censorshipsucks
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    My eyes are like -5 so I basically can't see what is going on without glasses, it's so embarrassing because I can't even recognise faces till the person is like a yard away.

    Hey!
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I'm legally blind at -14.25 but I wear glasses and they get me up enough to be able to drive a car (minimum for driving is 50/20). No one in my family believes I'm LB but who cares, I'm almost 60?

    Yettichild
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    My sister is LB without her glasses and has been since she was a teen. Everyone in the family knows this, but her husband is somehow under the impression she is completely blind without them. She used to wear contacts all the time and more than once I was called in to find a lost contact on the floor.

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    Furmama0501
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Yes! I have had documented hearing loss since I was a child. I have been out of high school for 20 years and the school district's audiologist still remembers me. Even couldn't get a job as a dispatch operator because of the hearing loss. My mom still doesn't take it seriously and calls it selective hearing.

    Maciej Zajaczkowski
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Anyone who has never met someone with hearing or visual impariment may think that you are only 100% blind or deaf. Please do not blame it only on white people. Everyone has a human brain which can be prone to this kind of thinking.

    Madeleine
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Maybe you misread the post or it was edited to correct a typo, but it says “while people,” not “white people.”

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    #50

    Misophonia mixed with Autism here. Can't eat with other people, so I go to another room when I eat.

    Sea-Airport8480 Report

    Autistic apricot
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I cannot stand people eating so I go in another room and get told off instead

    A Jones
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I just have misophonia and it's awful. I can't stack glass dishes (painful) or be around anyone snapping their darn gum or have bad dining manners. My confidence has grown on asking folks to stop smacking gum. Doesn't' always work and reminders are annoying. BTW I also carry a spare set of earbuds anywhere I go. It helps greatly. d( ^o^)b

    Pirates of Zen Pants
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have this too. Just now, I had to escort my dog out of the room because he was obsessively licking his nose. Gross mouth sounds will typically give me a migraine. I carry earplugs in my purse in case the issue comes up.

    censorshipsucks
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Licking and lip smacking. It drives me to rage.

    Kurtis Cobainus
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    For the eating thing, I can eat with other people, but if I'm doing something, I MUST do that thing, so I'll eat there please

    musicaldashtrash
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have (self-diagnosed, as no one really knows what it is) misophonia. It sucks, to say the least.

    GoldShovel
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I also have misophonia (albeit self diagnosed) and autism, so I can't ignore the triggers. I have found, however, that a white noise generator helps SO MUCH. I use White Noise on the phone (it has a blue background with a white noise logo if you're interested), with a mix of Heavy/Extreme Rain, Thunder, and Wind. I've found that like 98% of the sound is blocked by the white noise, and the other 2% is blocked by my own eating. The app does have a paid version, which allows the white noise to play whilst the screen is off, but I forget the amount of money it costs.

    #51

    I have arthritis (both regular and Ankylosing Spondylitis) Hashimoto's, and Sarcoidosis, and so it hurts to stand, sit, lay, hard to breathe and I'm constantly tired To strangers I'm probably a lazy bum who doesn't need an inhaler if needed (I use my wife's because she doesn't use it often like she should), shouldn't park in the handicap and shouldn't be napping or I should say people I know who doesn't understand and strangers

    Dry-Ad5762 Report

    #52

    I have a level of cognitive impairment and find that I can't drive anymore. I'm too easily distracted and I can get lost in my own neighborhood, so it's just too dangerous. My family finds it inconvenient when I ask for rides, so they ask me to explain it. Again. (sigh...)

    Xylorgos Report

    Hey!
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I usually don't recognize my own house so I use a GPS all the time if I'm driving alone. I worked at the same place for 12 years and still got lost if I didn't pay attention to the exit names, same with going to the same doctor for 18 years. I was late once and the doc still took me in but asked why I was late. When I explained I got lost he asked why I wasn't lost all the other times. Easy, my husband usually brings me to all my appointments.

    Huddo's sister
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    My mum has the opposite problem. We don't think she should be driving but she won't listen. She gets really distracted (now we know because of ADHD) but is also erratic and she speeds because she is always late (again, ADHD). She won't give up the independence though. "I have too much to do"

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    #53

    I have a connective tissue disease (undifferentiated). The fatigue that I feel everyday has led me to quit doing things that had me go out in the evening. People kept asking me when I was coming back and didn't seem to understand that the fatigue can be crippling and I really need to rest, so going out at night is mostly out of the question unless I can sleep the following morning. I just stopped explaining and talking about it altogether.

    Blisolda Report

    Whodathunkit
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I am at Mayo Clinic in Minnesota USA with my 17 yo daughter who has this...and POTS, amplified musculoskeletal pain syndrome(AMPS), anxiety and depression. There is hope. Look up "central sensitization". It's interesting. See if you can find a program or clinic that treats your condition. We are currently attending the Pain Rehab Clinic. It's a three week program. As a mom, I am learning so much!

    Gin. No tonic
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Connective tissue disorder, fatigue, POTS, muscle and joint pain could be EDS - it's very underdiagnosed. It took me 10 yrs of active trying to get diagnosed. Maybe it's worth looking into, if you haven't yet. Best of luck to you two!

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    #54

    I have Borderline Personality Disorder, MDD, GAD, a panic disorder, I think I may have C-PTSD and possibly be on the autism spectrum (but haven’t been tested for ASD). Because of the way I was raised (religious, Asian, military house) when I get upset I stop talking; I shut down and almost lose the ability to talk…? My ex and I would get into fights and he would be yelling at me upset and I would just not even be able to make myself say “I don’t know what to say” or “I can’t talk about it right now”. He would think I was giving him a silent f**k you when really my brain was shutting down.

    lustful_livie Report

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    #55

    Anything involving bleach or heavy detergents i have chemical exposure from Desert Storm... And my father thinks i just dont like to clean. I clean just not with those.

    TheEnigmaShew-xbox Report

    Hey!
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Bleach and heavy detergents are not the only cleaners around. I don't use them myself. He must be old to think bleach is the thing to use. I'm almost 60 but my mother used to use heavy stuff like muriatic acid to clean her bathtub.

    Seedy Vine
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I like Method, Dr. Bronner's or Mrs. Meyer natural cleaning products.

    #56

    I have chronic iritis- inflammation in the eye. It’s random, switches between the two. At first I didn’t realize I had it until an optometrist asked me why I had scarring/damaged pupils. Stuck on my left side after a bad flareup that left me temporarily blind and out of work overnight- it was noticeable at the time as my eye was bloodshot. I still deal with after effects- my vision will randomly become white/blurry on and off. I don’t drive, at work people will try to hand me something and i’ll stare at it bc I don’t have depth perception, or they think i’m ignoring them when I really can’t see that day. Now that it’s not physically noticeable, I have to warn people and i’ve heard a few comments that i’m making it up to get out of things. In reality i’m walking around with 50% of my vision being this giant white void.

    dylandbloom Report

    Chucky Cheezburger
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    My mom has this, along with uveitis, retinitis and noduler sclerosis...Damn, I hope I didn't butcher those words. Her vision has slowly gotten worse since I was born. She can see light and dark but that's about all.

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    #57

    Not leaving my apartment. 😔 I suffer from an eating disorder and one of my symptoms is agoraphobia. This coupled with severe anxiety makes things difficult.

    PinkPrincessJKG Report

    Helen Waight
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Eating disorders mess you up, and a lot of people seem to think they are something only teenage girls get. Or it’s ‘for attention’. They don’t realise just how many things in life they make extremely difficult.

    KING ILLEGAL FOREST
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I'm so sorry, I went through this when I was severely anorexic. I hope you can get through it.

    Pumpkin Spice
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have disordered eating patterns (not an eating disorder), and it's HELL. I'm constantly paranoid that someone will notice me eating/not eating and make comments about it. The thing is, I'm perfectly happy with my body. But I just can't eat. I have no appetite. Add in social biases, intrusive thoughts, ADHD meds, and constant emetophobia, and you've a recipe for disaster...

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    #58

    Autism, ADD, depression, and poor memory recall (though that last one might not count as a medical condition lol). The amount of times I've gotten yelled at by my mother because of my disabilities and disorders...well, let's just say that if I were given $1 for every yell, I'd be one of the richest people in the country before I turned 18. Coworkers have been a little more understanding, thank God. And all my friends are disabled, so I feel more at ease with them. But yeah. I've tried educating my mother about autism in particular to absolutely no avail because she is just too *stubborn* and just doesn't get what it's like as a neurotypical person.

    DidDunMegasploded Report

    Autistic apricot
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I hope your mother will learn and be a bit more understanding to you and your autism

    James016
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    My son is autistic. Thankfully his school has been excellent and his classmates look after him. We learnt to take his ear defenders everywhere we go, just in case his hearing sensitivity goes into overdrive. Family accept him as he is. While he is verbal and can tell us when he wants things, he still cannot have a conversation but he is slowly expanding his vocabulary every day but it is a long process

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    #59

    More of a mental medical condition but I have several anxiety disorders and a restrictive eating disorder. The easy task people usually get mad at me over is eating in public. They want to do something and think it’s fun but for me it’s very much not fun and is instead panic inducing and takes days of working up to.

    AnxiousnessAlways Report

    #60

    Eating. I don’t have the funds to get an official diagnosis but I’m pretty sure I’m autistic and have ARFID (Avoidant Restrictive Food Intake Disorder). I cannot eat a lot of things due to a bad reaction to the texture, taste, smell, and/or appearance of the food item in question. I will gag and instinctively spit the food out like I’m Gordon Ramsay eating a nasty dish on his shows lol. I get called childish and told that as an adult I shouldn’t be gagging and spitting out food, and I need to eat better because I have chronic health issues so I should suck it up and eat the food that literally makes me sick. I also have a bad gag reflex in general where I’ll choke kind of and nearly vomit if I have anything on or around my neck or throat. It’s so bad that I can’t wear those capes at the salon or I’ll vomit. I’m told I’m childish for this issue as well. 🤷‍♀️ I’ve got a lot of health issues that combine into a giant mess (me lol), and those problems make it difficult for me to do much of anything besides just sitting somewhere. I have chronic fatigue linked with fibromyalgia and have a lot of trouble making myself food because I’m tired and hurting and can’t focus. Our air fryer sees a *lot* of use from me since it’s lower effort, but I often feel too bad to use that even (plus it’s less healthy food). And when I ask for help it’s apparently that I’m lazy or selfish or inconsiderate. 🙄

    hotaru-chan45 Report

    Wanita Wobble
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Identifying with 90% of your post - even med prof are dismissive of the texture avoidance or the strong gag reflex - it's crippling and I'm so sorry but to know I'm not alone is awesome.

    KING ILLEGAL FOREST
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I totally get the texture issue with food. I have never been able to eat any kind of fruit (except apples, but lucky me I'm allergic to them because of course I am) because of the texture. I cannot handle anything remotely mushy or slimy. I'm literally gagging just thinking about it.

    wowbagger
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I dated someone with ARFID. I didn't really believe him at first, and I kept assuming he could eat things he couldn't eat, if he would just "try" or if the food was prepared especially well or something. It took several months before I accepted what he was telling me.

    The leech
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I've never heard of this but I have these exact issues with food.

    Jake B
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    You and OP should see and ENT. Some people have a smaller opening in the back of their mouthes and at times the soft palette will fall. Makes you cough, feel like chocking or makes it hard to swallow. Usually found when sent for sleep apnea. They go hand in hand. Good luck

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    Pumpkin Spice
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    My ADHD meds do the same thing. I wish you all the perfectly-textured and seasoned foods!

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    #61

    I'm a type 1 diabetic (since age 11) & also have rheumatoid arthritis (since I was 6 or so when it was juveniles arthritis). I was a Theatre major in college and on the way to a rehearsal once my blood sugar plummeted. I was driving so I had to pull into the nearest fast food place and get a sweet tea so I could sip on it for a few minutes in the parking lot then keep going. I texted the stage manager while I was in the drive through line & explained what was happening. Luckily I wasn't far from the school so I wasn't horribly late. When I arrived I put my stuff down & took a few more seconds to drink my tea & catch my breath (sometimes low blood sugar makes your heart beat fast). The stage manager was immediately like "go ahead and join everybody else up on the stage". Yes... I will. As soon as I don't feel like I'm going to lose consciousness anymore. At the next school I transferred to, they told me to come to a rehearsal for stage combat (after I'd just had knee surgery a few days prior & wouldn't be participating in any of the fight scenes in the show for obvious reasons) because they wanted everyone to be able to "speak the same language" of stage combat. I had to go and just sit there with my knee all wrapped up in uncomfortable theater seats just to watch everyone else rehearse said fight scenes. With my already present joint issues, that just wasn't a fun time for me. In one retail job I had, I had to hide in the bathroom to eat a quick snack when my sugar would start going down because the owner acted like you were personally stealing out of her pocket if you slowed down at all. Instances like that (and many others) made me embarrassed to disclose my auto-immune issues to anyone. I tried to learn to power through blood sugar lows, spikes, extreme joint flare ups, etc... because I didn't want to be looked at differently. I didn't want "special treatment" when I really did need accommodations. People just couldn't grasp that, even though I was very young, these issues were still very real and (at times) debilitating. I was afraid of a boss or professor getting mad at me if I just couldn't keep up. For that reason, I would tell them, "By the way I have type 1 & arthritis, but I don't use it as an excuse!" just to reassure them that I wouldn't allow my blood sugar or chronic pain to inconvenience *them*. It's been exhausting at times. I'm learning to become less embarrassed because I know that I can't help that my body likes to attack itself, but hiding it became such a learned behavior... that I'm going to have to unlearn it.

    happyhomeresident Report

    boredkoala
    Community Member
    3 years ago (edited) Created by potrace 1.15, written by Peter Selinger 2001-2017

    T1D here too...powering through bad blood suagrs is an almost daily task when youre working and it is so exhausting. Most people dont understand that you're not only "sick" while your bg is out of range (which could be a long time if trying to fight an unexplained high) but there is a significant recovery period...i think of it as a blood sugar hangover. Solidarity!

    SlothyK8
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have a fairly rare autoimmune disorder that produces some weird symptoms. A flare can strike at any moment, leaving me unable to climb stairs or raise my arms overhead. If I DO have to explain, I always feel like I'm apologizing....because the condition isn't something anyone can SEE, and so their skepticism makes me feel insecure.

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    #62

    Due to a genetic condition, my left eye is nearly useless. So, just looking left, especially in the context of driving or traffic in general, is needlessly complicated. I'm sorry Mr. Instructor that I have to turn my head like an owl to even see what the f**k is to my left.

    CynicalNyhilist Report

    ADHD raptor
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    same for be but with my right eye i can relate :)

    #63

    Pretty much everything. I have autism, and prolly some other undiagnosed things that make it extremely difficult to do tasks unless told to. And if I don't do it immediately after being told to, I will forget. I have to set constant reminders for even little things like taking my medicine or eating meals. I also struggle with doing a full day's work. I work part time, and when it gets busy around the holidays and managers know to give me a day off to recharge if they put me to work for any more than 3 days in a row. Especially if it's a full 8 hr shift instead of the shorter 4 hr shift. Makes me feel terrible though that I'll be the last one in and the first one out each day...

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    #64

    i have adhd, and this prevents me from forming genuine connections with neurotypicals because of forms of communication and how our brains work. i will tell people about this but they will constantly ignore that, and then get mad at me when i don’t show them the attention and energy that i give people with adhd. (though this is usually more of a personal issue with me) another thing is that my parents will go off on me for forgetting things (even though my father also has it) aside from this i’m also hoh, my hearing is relatively well tho, but my parents constantly tell me how i have “selective hearing” or get pissed off whenever i don’t catch something that they had said

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    Seedy Vine
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Same. Watching videos of myself interacting with others has been strangely helpful for my social skills. But I get yelled at when I don't understand something being said, too. Hope things get better for ya!

    #65

    Back when I was in a day clinic for adolescents I'd get extremely overwhelmed by certain sounds (especially cutlery and crockery sounds) to be point that it physically hurt. We were supposed to do different tasks at the day clinic, such as setting the table or loading the dishwasher. I physically could not stand doing those tasks some days, but was forced to do them by the clinic staff if not for the other patients who were on my side and came to my defence. I've been struggling with my hearing since I was a child and still do (I'm actually sick rn with my hearing impaired in one ear for the umpteenth time).

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    Pirates of Zen Pants
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    I have this too. It seems to be an offshoot of the PTSD I've had since childhood. My husband can sleep through nuclear war, but if a bird coughs, I'm wide awake and looking for danger. Sounds set off my migraines too. Curses to the guy who invented the leaf blower!

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    #66

    I have severe ADHD Ik it’s extremely common I only have the attention span part of it not the hyperactivity since there are 2 versions but I seriously have a bad issue with it any task that requires attention, even playing video games not to mention something that I’m not interested in doing my wife and my mother and people I’ve worked for have an issue with this I’ve been trying to get medication but I need too be diagnosed with it again because the hospital that diagnosed me originally back in the early 2000‘s when I was a young child lost the documents or something while they closed the place, I have problems driving I still haven’t gotten my license yet because I am scared of getting into an accident I don’t have a good education with having dyslexia ADHD and a single mother who never pushed me too do well in school I realized now I should have spoken up when I was younger but child and teen me just said f**k school I have a lot of people tell me i’m using it as an excuse to be lazy

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    ADHD raptor
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    i also have severe adhd im sorry for you but usuly people are like "no your just lazy or oh you have adhd? lots of people have that your super common" LIKE SHUT UP SHARON NO ONE CARES ABOUT YOUR OPINIAN ON MY MEDICAL CONDITION

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    #67

    Talking. I'm autistic, and trans. I can speak, but speaking causes my brain to scream at me, a combination of bad sensory input and dysphoria, so I don't like to. Problem is, everyone gets pissy when I don't talk and just want to communicate through writing. They claim that since I'm not one of those "screaming baby autistics", I should talk fine and normally and nothing should actually be wrong with me. I agree there's nothing wrong with me, but they consider my desire for muteness to be something wrong, as well as a lot of other things.

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    Seedy Vine
    Community Member
    3 years ago (edited) Created by potrace 1.15, written by Peter Selinger 2001-2017

    When I speak loudly enough for people to hear, it hurts my ears. People accuse me of mumbling a lot. I would much rather stick to writing, too!

    #68

    I have pretty bad anxiety, and I’m afraid to take medications for it and also not trusting enough to go to a talk therapist. People give me a real hard time for both, and like to say im looking for attention. Actually im not..I was just tryna talk it out with someone I trust but okie, I’ll just crawl into bed for another three hour long nap in hopes I’ll wake up and just “get over it”

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    Madeleine
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Refusing to see a psychiatrist and try medication is hard to understand. Either or both are necessary to treat some types of anxiety. It’s a condition that’s not going to go away on its own, and it’s also quite common and well-researched and well-understood among good psychiatrists.

    poiplescales
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    Anxiety can be stronger than a person's desire for wellness and it can take years to get to where you can take medication for it and it can be overwhelming to try getting a therapist. Anxiety can take you hostage. If you don't suffer from it yourself, you don't understand the way it hijacks your ability to function.

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    Strawberry Pizza
    Community Member
    3 years ago Created by potrace 1.15, written by Peter Selinger 2001-2017

    In OP's case, anxiety will not go away by "talking to someone you trust". OP may feel better after a little while, but since their friend is not professionally equipped to deal with anxiety, OP will end up anxious again. And will go back to talk to the friend. And then the friend will start to get stressed because OP won't go to a therapist and instead is heaping all their anxiety on them. Im not at all saying that talking to a friend doesnt help anxiety! Im just saying that OP is not helping themselves at all with their methods. Things like CBT are excellent for breaking out of these cycles and I'm sure OP will eventually find a therapist that works for them. TL;DR - OP is in a bad cycle and they won't get better doing what they're doing. Therapy would help.

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