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.
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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
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.
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.
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.
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 " ...
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.
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.
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.
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?
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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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.
The worst this is people throw around the word like it's nothing. They think that migraines and headaches are the same!
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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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.
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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My mom has this. But it's everyday, and she's allergic to aspirin. :(
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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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!
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.
The worst migraine I've had caused me to temporarily lose vision in one eye and lose the ability to talk. It was super scary. They did CAT scan right away because the symptoms also match with a "mini stroke".
Oh yeah and I also had a migraine (this one was "just" the pain, no aura or anything) last a week. Went to the neurologist and he said after more than three days of a continuing migraine (which is called a status migraine) and when special meds don't help, they prescribe cortison pills. After about four days of taking them, the pain finally went away
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Thankfully, I don't get them anymore (one good thing about menopause). The whole left side of my head would hurt, including ear, cheek, jaw, tooth pain. I would have ocular migraines too. Back in the 80s and 90s, no one seemed to know what an ocular migraine was. I would describe the symptoms and they would have this blank look on their face. This included doctors.
I can't wait for my menopause to realize I don't have to have migraines anymore
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Mine are the rarest of kinds. Hemiplegic migraines. They look like you’re having a stroke.
I had a migraine once (fun side effect of one of my worse bouts with vertigo) and I CANNOT IMAGINE dealing with that more than once. Just awful.
As migraines go, I'm lucky - auras and fatigue only, and the auras are gorgeous.
I hope that you wake up one day and NEVER experience any of that again :( You're stronger than most of us!
For those of us who suffer badly with migraines it's worthwhile to look into histamine intolerance. https://en.wikipedia.org/wiki/Histamine_intolerance My main symptom is migraines. 2 anti-histamines helps a lot. Basically a lot of food has histamine in it and the more you eat of foods with it in the bucket ends up spilling over causing migraines and other symptoms. I follow a low histamine diet and my migraines have reduced drastically and when I eat something I know is high in histamine because it just tastes so good I always have 2 anti-histamines with it. Tomatoes are a big no. It can also be hereditary because my daughter has the same issue.
I am on Amitriptyline and after 2 decades of horrendous migraines...it seems to have worked. It can be tricky in the beginning as it can make you very lethargic in the morning, but try to take it earlier in the evening and after a few weeks you body gets used to it. Absolute life saver and I have tried lots of medication before.
Took Feverfew capsules twice a day and got my "Please kill me" pre menstrual migraines down to merely very unpleasant. Doing nothing after work but rest for a week each month helped. Being fired for being ill and, later, a hysterectomy seems to have stopped them.
Oy, until you've experienced them, you have no idea. I live with chronic pain but migraines are like nothing I'd ever experienced.
yes i have chronic migraines and people don't understand it's not just a headache! brain fog, vision problems, inability to regulate my body temp, shaking, and i even experienced aphasia once!
Yes the odors are a huge trigger. I asked a friend who was having a party if she would not light the scented candles. I was embarrassed to do this. As I age the migraines are almost gone but when I pass by a scented store it can trigger it.
I am thankful that I no longer have frequent migraines and they are no longer ocular. When I was a teenager I had numerous days where I would get ready for school and start to walk the the bus when the aura hit and I could barely see. I used to vomit from either the migraine or the medication often. The only real help, apart from preventative medication, was codeine- now this is so tightly regulated I doubt I would be able to get a prescription, but back 15 years or so, I would take half-1 tablet, it would help the pain and would make me sleep for two hours and the migraine usually passed by the time I woke up. It seems hormone changes or something altered my migraines. I didn't have one for two and a half years and when they came back they mostly felt like a sick headache that I could work through usually with ibuprofen. They felt so different I didn't recognise them as migraines to start with. Thankfully they are so infrequent I don't even take preventative medication anymore.
I take pre workout mix when I feel one starting. It has a good dose of caffeine and arginine or something similar to dilate blood vessels. Most of the time it'll stop one
My dad has migraines like that that have increased in frequency in the last couple of years from 2-3 a month to 2-3 a week yet the doctor won't clear him from having to search for a job for the next 6 months until he can retire and get the pension.
Started having migraines aged 7, and my parents were told children can't have migraines! Luckily they saw another dr and I was able to get medication to help. I still have them now but less frequently. My favourite mis information about migraines is that someone told me sex cures them. Anyone who's ever had a migraine knows that would be the last thing you would ever want to do!
Oh, this was my life for YEARS!!! I always had a level 2 headache and on occasion it would blossom into all of that and the nausea and a full understanding of why someone might be tempted to put an icepick through their eye to make it all stop. For me it was 2-3 ER visits a year for dilauded IVs. Then I got put on gabapentin for an unrelated issue and woke up a few days later and realized that my baseline headache was gone! It was blissful. I actually cried. That was about 2 years ago and I've not had an ED visit since and while I will get the occasional migraine I can deal with it using OTC measures as long as I stay on the gabapentin.
My husband has suffered from these since he was a child. I feel so bad that he goes through it. But for the most part, people are pretty understanding about it.
Aimovig injections once a month. Used to take Ubrelvy but recently switched to Nurtec. Botox injections every 3 months (I have a weirdly smooth forehead but otherwise no side effects). Triptans never worked for me but I've gone from 25-27 migraines a month to maybe 8 -10 which I will take any day. I have ocular migraines but also have auditory ones. I used to think I was hearing voices or having hallucinations until I made the correlation between the sounds I heard and the onset of a migraine. Way creepier than the visual aspects of migraines.
I relate to this one, I dont know why but certain smells will set me off into a migraine that lasts for days until I projectile vomit and then for some reason within minutes the migraine is gone.
I knew someone who suffered for 30 + years with migraines- nausea, vomiting, pain, compromised vision etc. Fit in every other way and no health issues. Went to the doctor for his annual check-up and his blood pressure was elevated, so he was put on medication. Migraines ceased, and he never had another one again. I often wonder if he had taken BP meds earlier (with a normal BP) if it would haved saved him years of pain.
A friend of mine gets migraines. He told me that he takes a motillium pill as well as pain meds because apparently for some migraine sufferers their digestion just stops - which means that they are not processing the pain meds properly and therefore not getting the medication into their system to ease the migraine.
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.
Yeah, but it is because other people are ruining it for you. Because "gluten free" is now in, people treat it as fashion. Many people don't actually have any troubles with gluten, but they want to be in the centre of attention. I am not saying it is your case, but I have at least 7 people faking celiakia just because they feel more modern with it.
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.
I’m so sorry, that’s harsh. I have a good friend who is a paranoid schizophrenic, and she had the same thing - virtually no contact with anyone from her past anymore, only her brother. It’s true, people hear the label and then that’s all they see.
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.
“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.
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!
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.
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.
I also have sensory issues and earphones in the classroom/work environment are a life saver
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
I know, please take some comfort in the fact you are not alone , we understand
“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.
“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.”
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.
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.
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".
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
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?"
I truly feel you. Anyone who is "high functioning" is obviously faking to most people. I had to learn to hide and camouflage being on the high end of the spectrum. I still haven't mastered facial expressions (I may never do so at my age) so I always look angry or disinterested. It's hard, very hard for me too. Take care of yourself first, other people may not.
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
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.
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’
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.
My ex had cancer at 18. He took almost a decade to get to where he could work a full time job.
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.
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!)
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.
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.
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
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.
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!
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.
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.
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.
At least the comments have stopped after diagnosis. Aside from that, my sympathy, OP. It must be really hard.
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
And people decide to finish your sentences for you because ‘you’re taking too long’
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.
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
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)
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.
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.
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?
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...
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.
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.
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
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
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.
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Deaf here... people who don't know I am deaf when I am in the community may think I am rude or or dumb because I didn't hear or understand them. People in general sometimes act like I am stupid (even though I have 5 degrees including a doctorate) or don't even want to bother trying to talk to me because it is too much work for them. My own family doesn't maintain contact with me because "It'S hArD tO tExT; I wish you could just pick up a phone and I can talk to you". Some people even think I am faking; my own step-daughter, who I have known since she was 5, thought I was faking. I don't think she realized I wasn't until she hit middle school. During COVID lockdowns and mask mandates, it was very isolating and anxiety-inducing because my mode of communication was blocked off. Deafness in general can be very isolating.
All my siblings and I can read lips. My father was deaf from one ear and could barely hear from the other. We aren't deaf but hard of hearing, thus reading lips. The masks do not help us at all. At least I can read my husband's lips no problem since we don't wear masks with each other. Being completely deaf is another matter entirely. Funnily enough, we like texting or emailing best.
Load More Replies... I’m disabled enough to get a parking permit, but not disabled enough to look it - except on the days I have to use walking aids. I’m also fat. The amount of times I’ve had people shout fatphobic stuff at me and tell me that I shouldn’t be parking there because ‘fat isn’t a disability’ and ‘if you lost weight you wouldn’t need that’ is a truly staggering amount.
The fatphobia/ableism combo is unfortunately extremely common. I've encountered those who rant against fat people using disability aids unprompted, seemingly unable to grasp the simple fact that someone can be both fat and disabled.
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I developed fibromyalgia in early 2021. I was already living with migraines, Crohn's disease, ME/CFS, and childhood PTSD, but fibro kicked my butt. All my nerves were screaming at me on a second by second basis. Think about the alarms that your nervous system gives you: itchiness, pain, banged-funny bone feeling, pins-and-needles, temperature swings, muscle tics, sensitivity to light and sound, chills, extreme tiredness, needing to pee, electric shocks. For me, these alarms were going off all the time. I found medical articles indicating that low-dose Naltrexone was helping people like me. I bombarded my rheumatologist with them. He didn't want to prescribe LDN, because the FDA hasn't approved it for fibromyalgia. Finally, after 15 months, I got a prescription. Now I still have the alarms, but the alarms are half as "loud" as they used to be. It's the difference between pure hell and a life that is livable. If you have fibro, please look into LDN and the UK's LDN Trust.
A friend with fibro says the same. I am so glad you got some relief! The cycles of fibro/depression is just not livable.
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My husband has MS and is on a heavy duty immunosuppressant drug. When the pandemic was going on, my work was very understanding about meetings having a Zoom option and letting me work part time from home. Now they're saying the pandemic is "over" so everything should be back to normal. Not for us. I can't get him sick but people come in sick and I've been exposed to covid three times now. My boss said he's "over" Zoom so no more Zoom options for meetings.
Sorry to hear that. Wonder if you can get a medical exemption to work from home? Or maybe a better boss?
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Psoriasis. It’s not unseen but it is stigmatized. Unless you have it, or know someone close that’s had it, it looks like diseased skin and I’ll admit it can look a little alarming in its worst forms. In support groups, sufferers say they’ve been told they have leprosy and no one wants to touch them or be around them- especially when it’s areas of the body they can’t hide. It’s NOT just dry skin that needs lotion. Nor is it a fungus. Truth is, it’s 100% non-contagious from an out-of-whack immune system. You can’t catch it under any circumstances. Genetics play a factor. And it’s extremely tricky to treat and usually incurable ( although people can go into states of remission.) Also, treatment is expensive, so if you don’t have public healthcare or private insurance, it’s not likely to achieve total remission. It makes a person completely uncomfortable in their own skin, literally.
my family gets it on our face. f*****g fantastic.
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I have anxiety disorder and panic attacks. I know what my boundaries are, my comfort zones, my triggers are. I have learned how to work around those. When I say I don't feel well or am not comfortable doing something- I'm not being "dramatic" or "over sensitive" or "overreacting" or "hypochondriac". I know my limits, and I want to avoid going beyond them. I'm so tired of being shamed for this.
Advocating for yourself in the middle of anxiety is so hard. So f*****g hard.
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I have Multiple Sclerosis. I look normal enough, I can still stand up just not for long. I can zombie walk about 15-20 feet. I stumble and fall down a lot. My husband gets tired of trying to explain what is wrong with me. It makes him angry when people think I am exaggerating or faking it. So he started telling people I was a closet drunk. He can be pretty convincing. He has told people that I hide my alcoholism and will deny it or lie about it. The funny part is he did not tell me and had been doing this for several years. Finally I caught on to what had been going on. Now here is where it gets even more ridiculous - people we have known for a while now totally believe that I am a drunkard and when I try to explain that I really have MS they nod and smile not believing a word I've said. Now I just go along with it. I find it hysterical how many people are willing to accommodate an alcoholic but not so much someone with a progressive neurological autoimmune disorder
Oh, Alexa. I'm sorry. You don't mention being annoyed at your husband for telling this lie behind your back, so I'm going to figure you're not. I'd be really annoyed, though. I know how difficult it is to get people to understand that you have a progressive autoimmune disease, and I empathize with your struggle. People often question my symptoms, and I'm constantly explaining what Crohn's, ME/CFS, and fibromyalgia are. Whether they believe me or not, I'm going to keep doing it, because I want them to be better informed the next time they meet somebody with an invisible disease. I don't want my doctors, family members, or friends to have the luxury of ignorance. Who knows, they may end up with an autoimmune disease themselves, so I'd just as soon have them learn now. You've already tried to explain MS to others, though, and because of your husband's alternative explanation, they didn't believe you. I can totally understand why you've given up on telling them.
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My husband is legally blind. Several times he's had someone get mad at him for his inability to see. One was a family member who got upset he didn't recognize his cousin (who he hadn't seen since they were children). Another was a nurse who caught an attitude saying he was lying about not being able to see. "I just can't believe you cannot see." She scoffed and walked off after doing the test. The doctor took one look at his cornea and confirmed he, in fact, has an eye condition that killed his vision. I cannot count the times someone has made snarky comments when finding out about his disability. They see a 6 foot 6 man that looks like a football (American) player and thinks he's lying. It's one of the reasons we left the church and distanced ourselves from family. It's heartbreaking to see him go through that, but I hug him tighter just the same. Hugs to everyone who deals with an invisible disability. ❤️
I was recently diagnosed with fibromyalgia, most likely developing it during the pandemic due to massive stress. I also don’t do pain killers often, it’s something I’ll normally ride out. Most days I stay in bed because I am always exhausted, and going out is more like a chore now, it’s mainly due to having a hard time walking. I can’t even tell y’all how many times I’ve gone to places and had people get pissed at how slow I walk. My knees take the worse of it, I don’t even do stairs anymore, and yes, I walk slow because not only do they hurt, I’ll lose my balance on top of it. I usually manage to step aside; but then I occasionally get the look because maybe they think I’m too young to be in this much pain. F**k em, it’s not my problem though.
One of my longtime friends was one of the youngest people diagnosed with fibro at her age, and another has juvenile rheumatoid arthritis. The number of people who what to argue that you guys aren't experiencing the thing you're experiencing because you're "too young to have that!" is b******t. I'm so sorry, Amanda. I hope you'll find some care routines and relief that works for you soon.
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I have (undiagnosed) depression and my mom refuses to believe it. She says I’m being lazy, a slacker, and a typical angsty teen, and that I need to grow the f**k up. I’m not lazy, I quite literally don’t have energy to move some days,
At this point, I think being a teen is just a constant state of depression and anxiety. The changes themselves would be overwhelming enough if, you know, the rest of the world wasn't exploding, too. Don't worry, Scarlett, your Gen X-ers out there went through similar social patterns in the 80s, questioning gender and identity while waiting for bombs to drop and our parents screaming at school board meetings. We made you a mix-tape to help, though. It's got lots of The Smiths and The Cure.
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I have an auditory processing disorder. I can't always make sense of spoken word. It annoys and exasperates those around me because they don't feel heard. People ask me all the time if I'm on drugs. I wish I could somehow tell others what's up with me before our conversations go south, but there never seems to be a good time to do that.
I have misophonia and OCD. My mother is the only one who knows about my OCD. I have problems with anything non symmetrical (I don't care if a surface is organised or not it just has to be symmetrical), extreme germaphobhia u can Say. I think about everything that could go wrong, like if someone had sneezed on restaurant food etc. I have to look at locks repeatedly to be sure it is locked(we are Muslim and my ma says that we should have trust in Allah but it doesn't work like that) and I have depression, tonsils, broken ear drum, adenoids and an ear infection. My ENT is ruined. You know the worst part? I'm only 13
That sounds very difficult. A tip that might help you with locks: Can you take a photo of it with your phone when you leave your house? I read about that as a suggestion for people who worry that they left the oven on when they go on vacation.
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what pisses me off is that they put a line item in the job application form where you are supposed to detail you health problems. This is not legal in the US, since federal labor laws say a worker's health condition is a private matter between the doctor & the worker. They expect you to list all health problems. If you mention depression, anxiety, or mild psychosis (whether managed by meds or not) on your application form, the HR manager will red-stamp your application as "disqualified due to disability". This is just plain wrong. With the meds they have available these days, workers can take Zoloft of Lexapro & cope satisfactorily with anything that will come up on the job. The labor market is so glutted these days that companies won't hire workers with health problems. This is wrong & unfair since it is none of their business in the first place. The working world has changed a lot... my sympathies, Gen-Z and Millennial workers trying to make it these days...
While understanding has grown over the years, tolerance has not, and I've spent the last five years dealing with everything from PTSD to suicidal urges, thanks to what contemporary rhetoric has done to me and other "women of a certain age" recently. No, I am not crying "white woman tears" or being a "Karen" with "white fragility." I have anxiety, panic, depression, PTSD, and a lifetime of trauma I'm managing. Yes, there are racist, awful white women out there who voted for Trump and hate trans kids. Maybe wait and figure out if the white fifty-something woman you're confronting ACTUALLY is those things before you start screaming at us for loving Trump and being homophobic and racist, yeah? "Hurt people hurt people" is not acceptable, unless you're ready for me to return the favor.
I've got OCD; and nothing ticks me off more than people using it as a common term, like they do so often in everyday speech. When I was a child, I heard it everywhere...my teachers, my friends, even my parents jokingly referred to me as OCD when they witnessed my weird little mannerisms. I laughed along with them. But I'd been researching it on my own like crazy, sneaking books home from the library, checking medical articles...I spent weeks evaluating myself, and finally self diagnosed myself. I tried to tell my parents, but they just brushed it off. It got worse, until finally I told a really close friend, one who I trust. And then another friend. Soon, I had a circle of people around me, listening when I needed to rant, giving hugs and love, and best of all, taking time as I shattered their conceptions on what OCD really is. It's not perfectionism. I promise. It's living every day of your life in constant fear of breaking some unspoken rule and causing harm to something in the world
*I could tell it was joking because of how often they used it, and the tone in their voice, like they just threw it out there without knowing what it means---which they didn't, as seen from when I tried to tell them seriously about it
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Depression is a physical illness, not an emotional state. Endorphins, adrenaline, dopamine, serotonin, epinephrine…these are neurochemicals that respond to AND dictate or influence our emotional states. I describe depression as “grief without actual loss.” When you feel like you can’t go on, that you can’t get out of bed, that you just don’t want to try anymore after losing a loved one is how you feel when you’re depressed. You could lose your spouse or your dog and just “choose” to go to work or to your friend’s barbecue, but it feels painful to do so. Physically painful. It’s endlessly frustrating for sufferers of depression to feel the same way for “no reason,” but it’s a real and sometimes debilitating physical feeling that will not go away if you just smile or try harder. None of us enjoy it, and few use it as an excuse when it would be so much more satisfying to just go about our lives without feeling like our stomach is a black hole and our heads weigh a thousand pounds.
This is an excellent description, thank you. You are exactly right. I have suffered from what I thought might be part partum desperation from my 3rd child, but once it reached over a year in duration, my family and I realized that that probably wasn't it. I now have been diagnosed bipolar 2, and suddenly my life makes a lot more sense. The reasons I reacted to certain things in certain ways, the debilitating depression that has worsened since a young age, the cyclical thinking, insanely high anxiety and insanely low self esteem... it sucks. I will say that I have tried the keto diet, initially to lose baby weight as pcos makes it very hard to lose weight without drastic measures, and the keto diet fixes something in my brain where I won't be under that black cloud of depression and I almost feel like a functioning human. I plan on staying on keto for a long time to see what happens. I usually fall off the wagon after a few months, but I've noticed my bipolar symptoms come back. Hard.
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Nothing diagnosed as of yet (going to see about this soon) but I have noticeable hearing issues. I always have subtitles on the tv and movies and sometimes I can't understand people when they don't speak loud enough (and some get annoyed that I speak TOO loudly). I get eyerolls when I ask people to repeat themselves and sometimes I want to go, "what do you want me to do?! Just nod my head and go along with it? I can't freaking understand what you're saying!" Some people just speak quietly but it's the people who act as if I'm asking for them to write down their words that irritate me.
My grandma was deaf and if people started to get annoyed or she simply couldn’t catch the words, she would just smile and shrug her shoulders as if it was the person’s problem, not hers.
Load More Replies... Chronic insomnia. I get a lot of well-meaning advice, but trust me: after 30+ years I have tried whatever it is you are about to suggest more than once. No, I'm not lazy, just very tired.
It's the worst feeling: being exhausted, but unable to sleep. I've found some help w/CBO and Delta 8, but that's not long-term sustainable, either.
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I have a close relative that was born with only one kidney (discovered in an unrelated childhood ER visit). She's been harrassed because she can't/doesn't drink but can shut it down pretty quickly when she's feels like it. But some idiots still don't even get it or will even say she's lying.😅 What the hell? So dumb!
I don't care if your organs are perfectly functional or not, if you don't want an alcoholic beverage I'm not going to push you. The most I might do is find out if this is a one time, I don't feel like it, or all the time I never drink thing so I know whether or not to offer in the future. There are lots of tasty beverages out there and alcohol is not needed for a good time.
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I have a multitude of health issues, chronic pain, digestion issues, depression, anxiety, PTSD, trouble sleeping. It's all ruined my life. I think it's not so much people boldly saying things but the little ways they misjudge me. Not being able to help with chores, waking up in the afternoon, a friend was once surprised when I said I wished I wanted to work. Meaning she thought I just wanted to stay home without kids and have my husband support me. I would never ever want that, and felt like she misjudged my character. This happens on a regular basis. Plus I don't have a diagnosis for my physical health problems so I can't just tell people I have such and such disease and have them understand on any level. Even my father in law severely misjudged me when I began to date his son and my anxiety still shoots through the roof when I'm around him. I understand, it looks like what is looks like. I just wish I could show people the real me someday.
Also my pain is highly effected by my emotions. Meaning any bit of stress or anxiety can physically give me pain. I'll be pretty okay one second and then someone asks me to do something stressful and I'll have to say I can't. And it will just look like I'm being lazy and making up an excuse cause I'll have been laughing or something beforehand. There have been times I have "acted sick" so people will believe me. Cause when you have chronic pain or sickness you tend to stop visibly reacting to some of it. I've told people during visits "I'm in pain right now". And they are always surprised. I've even foregone helping with things the one time I feel good because they will be confused the next time I don't feel good cause it all looks the same to them.
Load More Replies... I'm partially face blind. I'm lucky. With enough time and repetition I can learn to recognize a face. There are people who are fully face blind and they can't recognize a photo of their own parent. Still hard when I run into a coworker I've known for years and I have no idea who this person is who obviously knows me.
I guess I'll start at the top... Pseudopapilledema of optic disc (my ocular nerves are squished a bit); virtually no short-term memory; Meniere's disease, both ears; Occipital Neuralgia; Spina bifida at C7; Celiac; Diaphragmatic hernia; Severe acid reflux with a giant hole in the lower esophageal sphincter; Ankylosing Spondylitis; Spinal Stenosis; Fibromyalgia; Non-Alcoholic Fatty Liver Syndrome; various vitamin deficiencies due to malabsorption; hypermobility. I'm an ambulatory wheelchair user. And mom to a son with "Aspergers if it was still its own diagnosis" ADHD, Sensory perception disorder, celiac, seizure disorder and puberty. Puberty is what's kicking our butts, we figured everything else out. We have a lot of interesting fun at my house.
I blame the fakers, the ones who do it for attention or auto-diagnose; the ones who missuse the correct terms, i.e. your're feeling sad after a dramatic movie, you're not depressed, you're just sad for a while, depression is a way more serious matter than that.
People who think that those attention-seekers and those with small, inadequate vocabularies are somehow ambassadors for everyone with actual conditions are just as much at fault. Encountering someone who behaves that way isn’t a free pass to assume they’re representing a much larger group, or representing people who actually have those conditions.
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I have a Mast Cell disorder that, among other things, randomly triggers anaphylaxis even when no allergen is present. I've literally used a couple hundred epi pens over the years and have serious reactions that stop just short of anaphylaxis several times a week. This has been going on for over a decade now. I've had to quit working and I miss many family events because I don't want to have a reaction during the event and ruin it for everyone. If I'm not in the midst of an episode I look and feel fine, so it's hard for others to understand why I stay home all the time. I'm blessed with a stable home life and am very comfortable with access to excellent health care, so I'm very lucky in that respect. But I miss my old life.
Looking at me you'd never guess I have CPTSD, Anxiety, Depression, ADHD, OCD, Cleithrophobia, and Migraines. My brain was trained in childhood to turn against me. It's looking like I may be Counter-Dependent too, which would explain why I'm high functioning. I'm suborn for my own good. I almost have enough cats for each disorder to have it's own therapy animal.
i had anorexia and going to restaurants or if was somewhere like an office party or whatever and there was a buffet, or the time my now husband moved in and filled the fridge with food i had major anxiety attacks. i'm ok now cause him and my personal trainer made me eat but yeah, people just thinking im picky or attention seeking and now i am a normal weight people dont believe i weighed 6 stone,
Type 2 diabetes, fibromyalgia, spinal stenosis, osteoarthritis (knees & back), degenerative disc, sciatica, chronic fatigue, CIPN (Chemotherapy Induced Peripheral Neuropathy- way worse than diabetic neuropathy) from breast cancer (in remission!), fibro fog (memory/cognitive issues), depression. I'm 56, but this all started around 40. I've had people follow me into stores, yelling for parking in handicapped spots, saying I'm too young to be sick, I don't "look" sick, reporting me to management for using motorized carts. It's hard enough dealing with all this, and watching my family suffer, I don't need strangers making it worse! 😥
I have Lupus that attacks my central nervous system. It has progressed to the point that it is now obvious I am not well, but I spent the better part of 15 years trying to pretend I was fine because it was easier than trying to explain to people just how awful it is living in this body. I haven't been able to work in almost 8 years. People love to tell me how they wish they could just collect disability & not have to work. No, you don't. Not being able to contribute to your own life & family is horrible. Watching my husband work himself to the bone because I can't work is heart wrenching. Watching the pain in my kids' eyes because they are watching their mom suffer is awful. I would love nothing more than to park at the back of a parking lot & walk in/around a store. He'll, I'd like to walk to the bathroom & not worry about the fact that I might fall while no one is home. People get frustrated because I am slow. If it's frustrating for you, think about how I feel.
Narcoleptic here. I'm sick to death of people thinking that this illness is a joke. I've also had enough of people thinking I'm lazy. I literally have zero control over my sleep/wake cycles, even with medication.
I have CRPS and have an implant to control my pain people don't understand that just having clothes touch my ankle causes pain and that the simple act of walking can be excruciating.
I have Executive Functioning Disorder, as well as OCD, anxiety, and adhd-like tendencies. The amount of trouble it’s given me in school or life in general is insane. I struggle with starting things and making deadlines. I’m a perfectionist. I feel like something has to be my best work, I need them to see it how I do. I struggle with making decisions. I was thinking about it a few day ago and it hit me that this is going to be a constant. I realized that it’ll affect me in more ways then I thought. I’ve mostly been worried about pursuing further education and holding down more than a part time job but I realize that this is going to effect future relationships I might make and so much more than I realized. Stuff’s gotten a bit better but it’s exhausting. And trust me, if you’re tired of me forgetting something or struggling to decide or missing deadlines then let me assure you, I’m just as over it as you are. Not to mention all the annoying meds. I hate pills.
I have epilepsy, and usually I am able to take my anti-seizure medicines on time in the mornings and evenings. In some evenings, however, I haven’t always been able to get home to take them for sometimes as long as 3 hours. Yes, I remain conscious if I don’t take them for a while, but anything beyond 10PM makes me paranoid. Also, they have a long list of side effects, which I have been dealing with ever since my epilepsy diagnosis in May 2020. For example, I get tired easier than I used to but have trouble falling asleep.
I have a vitamin b12 deficiency, I have 3 monthly injections for it, when it's wearing off I get tired, my eyesight fades in and out, i get the tremors in my arms and hands, i forget things, find it REALLY hard to concentrate on simple tasks & instructions, along with sometimes slurred speech, im oftern in a confused state....people don't believe me & know nothing about it.....
dad in sign language is a great way to communicate with your dad if he is deaf or hard of hearing. There are many different ways to sign dad, but one of the most common is to simply put your fist against your chest and then move it up and down. You can also sign dad by making the letter D with your hand and then tapping your chest. Whichever way you choose to sign dad, make sure that you do it with a confident and affirmative attitude - after all, there's no greater dad than yours! Read another amazing blog: https://lead-academy.org/blog/dad-in-sign-language/
Fibro/CFS I look ok but somedays I can't walk because of the feeling on knives in my feet. Stress and migraine bring on a crash, its like the lights get turned off. I'm not faking I honestly can't move, can't talk, every thing feels a million miles away. Somedays I can walk without help, somedays a walker other days a wheelchair and other days I'm stuck in bed. I'm obese so people think I'm just lazy and eat junk food. Most days I have trouble preparing a single meal let alone eat it. I have to budget my time. Do my shopping about an hour means at least 2 hours in bed after. No one actually chooses to live this way because it's not a good life it a life sentence. I may get well but I may also get worse. But I look perfectly ok
I always hate it when people say, just try this diet, just do this exercise, pray more, etc. I have multiple food allergies and an already on a strict diet because of that. I have had people convinced that my diet is causing my migraines. I was still getting migraines when I was only able to eat plain salads. (just salad mix and nothing else). I have asthma; I can't exercise if I'm going into asthma attacks from sitting on the couch. Even on my good days, I had depression that would often keep me from doing things. My mom has an extremely debilitating disease that is invisible called MCTD, basically she has multiple autoimmune diseases, diagnosed 23 years ago. If eating a different diet could heal her, then she wouldn't still have the disease.
This is so eye-opening. I've never been one to discount someone, but all these details are very good to know. I think something like this should be required reading for everyone in high school. Get the vast majority of people to understand you can't always tell by looking at someone.
I think you all need to stop caring what other people think. People are a-hole and mostly only think of themselves and their lives. So they don't understand that their problem not yours. Just except they'll never understand.
Sure! Great idea! Now what's the magical formula to make that happen? (People, when you tell others "You just need to ____!" you're not being helpful. If it was as easy as "just-!" WE WOULD ALREADY BE DOING THAT THING. It may work for you, but it ain't universal.)
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This post is literarly for people to talk about their conditions. How its a surprise that they do?
Load More Replies... Deaf here... people who don't know I am deaf when I am in the community may think I am rude or or dumb because I didn't hear or understand them. People in general sometimes act like I am stupid (even though I have 5 degrees including a doctorate) or don't even want to bother trying to talk to me because it is too much work for them. My own family doesn't maintain contact with me because "It'S hArD tO tExT; I wish you could just pick up a phone and I can talk to you". Some people even think I am faking; my own step-daughter, who I have known since she was 5, thought I was faking. I don't think she realized I wasn't until she hit middle school. During COVID lockdowns and mask mandates, it was very isolating and anxiety-inducing because my mode of communication was blocked off. Deafness in general can be very isolating.
All my siblings and I can read lips. My father was deaf from one ear and could barely hear from the other. We aren't deaf but hard of hearing, thus reading lips. The masks do not help us at all. At least I can read my husband's lips no problem since we don't wear masks with each other. Being completely deaf is another matter entirely. Funnily enough, we like texting or emailing best.
Load More Replies... I’m disabled enough to get a parking permit, but not disabled enough to look it - except on the days I have to use walking aids. I’m also fat. The amount of times I’ve had people shout fatphobic stuff at me and tell me that I shouldn’t be parking there because ‘fat isn’t a disability’ and ‘if you lost weight you wouldn’t need that’ is a truly staggering amount.
The fatphobia/ableism combo is unfortunately extremely common. I've encountered those who rant against fat people using disability aids unprompted, seemingly unable to grasp the simple fact that someone can be both fat and disabled.
Load More Replies... I developed fibromyalgia in early 2021. I was already living with migraines, Crohn's disease, ME/CFS, and childhood PTSD, but fibro kicked my butt. All my nerves were screaming at me on a second by second basis. Think about the alarms that your nervous system gives you: itchiness, pain, banged-funny bone feeling, pins-and-needles, temperature swings, muscle tics, sensitivity to light and sound, chills, extreme tiredness, needing to pee, electric shocks. For me, these alarms were going off all the time. I found medical articles indicating that low-dose Naltrexone was helping people like me. I bombarded my rheumatologist with them. He didn't want to prescribe LDN, because the FDA hasn't approved it for fibromyalgia. Finally, after 15 months, I got a prescription. Now I still have the alarms, but the alarms are half as "loud" as they used to be. It's the difference between pure hell and a life that is livable. If you have fibro, please look into LDN and the UK's LDN Trust.
A friend with fibro says the same. I am so glad you got some relief! The cycles of fibro/depression is just not livable.
Load More Replies... My husband has MS and is on a heavy duty immunosuppressant drug. When the pandemic was going on, my work was very understanding about meetings having a Zoom option and letting me work part time from home. Now they're saying the pandemic is "over" so everything should be back to normal. Not for us. I can't get him sick but people come in sick and I've been exposed to covid three times now. My boss said he's "over" Zoom so no more Zoom options for meetings.
Sorry to hear that. Wonder if you can get a medical exemption to work from home? Or maybe a better boss?
Load More Replies... Psoriasis. It’s not unseen but it is stigmatized. Unless you have it, or know someone close that’s had it, it looks like diseased skin and I’ll admit it can look a little alarming in its worst forms. In support groups, sufferers say they’ve been told they have leprosy and no one wants to touch them or be around them- especially when it’s areas of the body they can’t hide. It’s NOT just dry skin that needs lotion. Nor is it a fungus. Truth is, it’s 100% non-contagious from an out-of-whack immune system. You can’t catch it under any circumstances. Genetics play a factor. And it’s extremely tricky to treat and usually incurable ( although people can go into states of remission.) Also, treatment is expensive, so if you don’t have public healthcare or private insurance, it’s not likely to achieve total remission. It makes a person completely uncomfortable in their own skin, literally.
my family gets it on our face. f*****g fantastic.
Load More Replies... I have anxiety disorder and panic attacks. I know what my boundaries are, my comfort zones, my triggers are. I have learned how to work around those. When I say I don't feel well or am not comfortable doing something- I'm not being "dramatic" or "over sensitive" or "overreacting" or "hypochondriac". I know my limits, and I want to avoid going beyond them. I'm so tired of being shamed for this.
Advocating for yourself in the middle of anxiety is so hard. So f*****g hard.
Load More Replies... I have Multiple Sclerosis. I look normal enough, I can still stand up just not for long. I can zombie walk about 15-20 feet. I stumble and fall down a lot. My husband gets tired of trying to explain what is wrong with me. It makes him angry when people think I am exaggerating or faking it. So he started telling people I was a closet drunk. He can be pretty convincing. He has told people that I hide my alcoholism and will deny it or lie about it. The funny part is he did not tell me and had been doing this for several years. Finally I caught on to what had been going on. Now here is where it gets even more ridiculous - people we have known for a while now totally believe that I am a drunkard and when I try to explain that I really have MS they nod and smile not believing a word I've said. Now I just go along with it. I find it hysterical how many people are willing to accommodate an alcoholic but not so much someone with a progressive neurological autoimmune disorder
Oh, Alexa. I'm sorry. You don't mention being annoyed at your husband for telling this lie behind your back, so I'm going to figure you're not. I'd be really annoyed, though. I know how difficult it is to get people to understand that you have a progressive autoimmune disease, and I empathize with your struggle. People often question my symptoms, and I'm constantly explaining what Crohn's, ME/CFS, and fibromyalgia are. Whether they believe me or not, I'm going to keep doing it, because I want them to be better informed the next time they meet somebody with an invisible disease. I don't want my doctors, family members, or friends to have the luxury of ignorance. Who knows, they may end up with an autoimmune disease themselves, so I'd just as soon have them learn now. You've already tried to explain MS to others, though, and because of your husband's alternative explanation, they didn't believe you. I can totally understand why you've given up on telling them.
Load More Replies... My husband is legally blind. Several times he's had someone get mad at him for his inability to see. One was a family member who got upset he didn't recognize his cousin (who he hadn't seen since they were children). Another was a nurse who caught an attitude saying he was lying about not being able to see. "I just can't believe you cannot see." She scoffed and walked off after doing the test. The doctor took one look at his cornea and confirmed he, in fact, has an eye condition that killed his vision. I cannot count the times someone has made snarky comments when finding out about his disability. They see a 6 foot 6 man that looks like a football (American) player and thinks he's lying. It's one of the reasons we left the church and distanced ourselves from family. It's heartbreaking to see him go through that, but I hug him tighter just the same. Hugs to everyone who deals with an invisible disability. ❤️
I was recently diagnosed with fibromyalgia, most likely developing it during the pandemic due to massive stress. I also don’t do pain killers often, it’s something I’ll normally ride out. Most days I stay in bed because I am always exhausted, and going out is more like a chore now, it’s mainly due to having a hard time walking. I can’t even tell y’all how many times I’ve gone to places and had people get pissed at how slow I walk. My knees take the worse of it, I don’t even do stairs anymore, and yes, I walk slow because not only do they hurt, I’ll lose my balance on top of it. I usually manage to step aside; but then I occasionally get the look because maybe they think I’m too young to be in this much pain. F**k em, it’s not my problem though.
One of my longtime friends was one of the youngest people diagnosed with fibro at her age, and another has juvenile rheumatoid arthritis. The number of people who what to argue that you guys aren't experiencing the thing you're experiencing because you're "too young to have that!" is b******t. I'm so sorry, Amanda. I hope you'll find some care routines and relief that works for you soon.
Load More Replies... I have (undiagnosed) depression and my mom refuses to believe it. She says I’m being lazy, a slacker, and a typical angsty teen, and that I need to grow the f**k up. I’m not lazy, I quite literally don’t have energy to move some days,
At this point, I think being a teen is just a constant state of depression and anxiety. The changes themselves would be overwhelming enough if, you know, the rest of the world wasn't exploding, too. Don't worry, Scarlett, your Gen X-ers out there went through similar social patterns in the 80s, questioning gender and identity while waiting for bombs to drop and our parents screaming at school board meetings. We made you a mix-tape to help, though. It's got lots of The Smiths and The Cure.
Load More Replies... I have an auditory processing disorder. I can't always make sense of spoken word. It annoys and exasperates those around me because they don't feel heard. People ask me all the time if I'm on drugs. I wish I could somehow tell others what's up with me before our conversations go south, but there never seems to be a good time to do that.
I have misophonia and OCD. My mother is the only one who knows about my OCD. I have problems with anything non symmetrical (I don't care if a surface is organised or not it just has to be symmetrical), extreme germaphobhia u can Say. I think about everything that could go wrong, like if someone had sneezed on restaurant food etc. I have to look at locks repeatedly to be sure it is locked(we are Muslim and my ma says that we should have trust in Allah but it doesn't work like that) and I have depression, tonsils, broken ear drum, adenoids and an ear infection. My ENT is ruined. You know the worst part? I'm only 13
That sounds very difficult. A tip that might help you with locks: Can you take a photo of it with your phone when you leave your house? I read about that as a suggestion for people who worry that they left the oven on when they go on vacation.
Load More Replies... what pisses me off is that they put a line item in the job application form where you are supposed to detail you health problems. This is not legal in the US, since federal labor laws say a worker's health condition is a private matter between the doctor & the worker. They expect you to list all health problems. If you mention depression, anxiety, or mild psychosis (whether managed by meds or not) on your application form, the HR manager will red-stamp your application as "disqualified due to disability". This is just plain wrong. With the meds they have available these days, workers can take Zoloft of Lexapro & cope satisfactorily with anything that will come up on the job. The labor market is so glutted these days that companies won't hire workers with health problems. This is wrong & unfair since it is none of their business in the first place. The working world has changed a lot... my sympathies, Gen-Z and Millennial workers trying to make it these days...
While understanding has grown over the years, tolerance has not, and I've spent the last five years dealing with everything from PTSD to suicidal urges, thanks to what contemporary rhetoric has done to me and other "women of a certain age" recently. No, I am not crying "white woman tears" or being a "Karen" with "white fragility." I have anxiety, panic, depression, PTSD, and a lifetime of trauma I'm managing. Yes, there are racist, awful white women out there who voted for Trump and hate trans kids. Maybe wait and figure out if the white fifty-something woman you're confronting ACTUALLY is those things before you start screaming at us for loving Trump and being homophobic and racist, yeah? "Hurt people hurt people" is not acceptable, unless you're ready for me to return the favor.
I've got OCD; and nothing ticks me off more than people using it as a common term, like they do so often in everyday speech. When I was a child, I heard it everywhere...my teachers, my friends, even my parents jokingly referred to me as OCD when they witnessed my weird little mannerisms. I laughed along with them. But I'd been researching it on my own like crazy, sneaking books home from the library, checking medical articles...I spent weeks evaluating myself, and finally self diagnosed myself. I tried to tell my parents, but they just brushed it off. It got worse, until finally I told a really close friend, one who I trust. And then another friend. Soon, I had a circle of people around me, listening when I needed to rant, giving hugs and love, and best of all, taking time as I shattered their conceptions on what OCD really is. It's not perfectionism. I promise. It's living every day of your life in constant fear of breaking some unspoken rule and causing harm to something in the world
*I could tell it was joking because of how often they used it, and the tone in their voice, like they just threw it out there without knowing what it means---which they didn't, as seen from when I tried to tell them seriously about it
Load More Replies... Depression is a physical illness, not an emotional state. Endorphins, adrenaline, dopamine, serotonin, epinephrine…these are neurochemicals that respond to AND dictate or influence our emotional states. I describe depression as “grief without actual loss.” When you feel like you can’t go on, that you can’t get out of bed, that you just don’t want to try anymore after losing a loved one is how you feel when you’re depressed. You could lose your spouse or your dog and just “choose” to go to work or to your friend’s barbecue, but it feels painful to do so. Physically painful. It’s endlessly frustrating for sufferers of depression to feel the same way for “no reason,” but it’s a real and sometimes debilitating physical feeling that will not go away if you just smile or try harder. None of us enjoy it, and few use it as an excuse when it would be so much more satisfying to just go about our lives without feeling like our stomach is a black hole and our heads weigh a thousand pounds.
This is an excellent description, thank you. You are exactly right. I have suffered from what I thought might be part partum desperation from my 3rd child, but once it reached over a year in duration, my family and I realized that that probably wasn't it. I now have been diagnosed bipolar 2, and suddenly my life makes a lot more sense. The reasons I reacted to certain things in certain ways, the debilitating depression that has worsened since a young age, the cyclical thinking, insanely high anxiety and insanely low self esteem... it sucks. I will say that I have tried the keto diet, initially to lose baby weight as pcos makes it very hard to lose weight without drastic measures, and the keto diet fixes something in my brain where I won't be under that black cloud of depression and I almost feel like a functioning human. I plan on staying on keto for a long time to see what happens. I usually fall off the wagon after a few months, but I've noticed my bipolar symptoms come back. Hard.
Load More Replies... Nothing diagnosed as of yet (going to see about this soon) but I have noticeable hearing issues. I always have subtitles on the tv and movies and sometimes I can't understand people when they don't speak loud enough (and some get annoyed that I speak TOO loudly). I get eyerolls when I ask people to repeat themselves and sometimes I want to go, "what do you want me to do?! Just nod my head and go along with it? I can't freaking understand what you're saying!" Some people just speak quietly but it's the people who act as if I'm asking for them to write down their words that irritate me.
My grandma was deaf and if people started to get annoyed or she simply couldn’t catch the words, she would just smile and shrug her shoulders as if it was the person’s problem, not hers.
Load More Replies... Chronic insomnia. I get a lot of well-meaning advice, but trust me: after 30+ years I have tried whatever it is you are about to suggest more than once. No, I'm not lazy, just very tired.
It's the worst feeling: being exhausted, but unable to sleep. I've found some help w/CBO and Delta 8, but that's not long-term sustainable, either.
Load More Replies... I have a close relative that was born with only one kidney (discovered in an unrelated childhood ER visit). She's been harrassed because she can't/doesn't drink but can shut it down pretty quickly when she's feels like it. But some idiots still don't even get it or will even say she's lying.😅 What the hell? So dumb!
I don't care if your organs are perfectly functional or not, if you don't want an alcoholic beverage I'm not going to push you. The most I might do is find out if this is a one time, I don't feel like it, or all the time I never drink thing so I know whether or not to offer in the future. There are lots of tasty beverages out there and alcohol is not needed for a good time.
Load More Replies... I have a multitude of health issues, chronic pain, digestion issues, depression, anxiety, PTSD, trouble sleeping. It's all ruined my life. I think it's not so much people boldly saying things but the little ways they misjudge me. Not being able to help with chores, waking up in the afternoon, a friend was once surprised when I said I wished I wanted to work. Meaning she thought I just wanted to stay home without kids and have my husband support me. I would never ever want that, and felt like she misjudged my character. This happens on a regular basis. Plus I don't have a diagnosis for my physical health problems so I can't just tell people I have such and such disease and have them understand on any level. Even my father in law severely misjudged me when I began to date his son and my anxiety still shoots through the roof when I'm around him. I understand, it looks like what is looks like. I just wish I could show people the real me someday.
Also my pain is highly effected by my emotions. Meaning any bit of stress or anxiety can physically give me pain. I'll be pretty okay one second and then someone asks me to do something stressful and I'll have to say I can't. And it will just look like I'm being lazy and making up an excuse cause I'll have been laughing or something beforehand. There have been times I have "acted sick" so people will believe me. Cause when you have chronic pain or sickness you tend to stop visibly reacting to some of it. I've told people during visits "I'm in pain right now". And they are always surprised. I've even foregone helping with things the one time I feel good because they will be confused the next time I don't feel good cause it all looks the same to them.
Load More Replies... I'm partially face blind. I'm lucky. With enough time and repetition I can learn to recognize a face. There are people who are fully face blind and they can't recognize a photo of their own parent. Still hard when I run into a coworker I've known for years and I have no idea who this person is who obviously knows me.
I guess I'll start at the top... Pseudopapilledema of optic disc (my ocular nerves are squished a bit); virtually no short-term memory; Meniere's disease, both ears; Occipital Neuralgia; Spina bifida at C7; Celiac; Diaphragmatic hernia; Severe acid reflux with a giant hole in the lower esophageal sphincter; Ankylosing Spondylitis; Spinal Stenosis; Fibromyalgia; Non-Alcoholic Fatty Liver Syndrome; various vitamin deficiencies due to malabsorption; hypermobility. I'm an ambulatory wheelchair user. And mom to a son with "Aspergers if it was still its own diagnosis" ADHD, Sensory perception disorder, celiac, seizure disorder and puberty. Puberty is what's kicking our butts, we figured everything else out. We have a lot of interesting fun at my house.
I blame the fakers, the ones who do it for attention or auto-diagnose; the ones who missuse the correct terms, i.e. your're feeling sad after a dramatic movie, you're not depressed, you're just sad for a while, depression is a way more serious matter than that.
People who think that those attention-seekers and those with small, inadequate vocabularies are somehow ambassadors for everyone with actual conditions are just as much at fault. Encountering someone who behaves that way isn’t a free pass to assume they’re representing a much larger group, or representing people who actually have those conditions.
Load More Replies... I have a Mast Cell disorder that, among other things, randomly triggers anaphylaxis even when no allergen is present. I've literally used a couple hundred epi pens over the years and have serious reactions that stop just short of anaphylaxis several times a week. This has been going on for over a decade now. I've had to quit working and I miss many family events because I don't want to have a reaction during the event and ruin it for everyone. If I'm not in the midst of an episode I look and feel fine, so it's hard for others to understand why I stay home all the time. I'm blessed with a stable home life and am very comfortable with access to excellent health care, so I'm very lucky in that respect. But I miss my old life.
Looking at me you'd never guess I have CPTSD, Anxiety, Depression, ADHD, OCD, Cleithrophobia, and Migraines. My brain was trained in childhood to turn against me. It's looking like I may be Counter-Dependent too, which would explain why I'm high functioning. I'm suborn for my own good. I almost have enough cats for each disorder to have it's own therapy animal.
i had anorexia and going to restaurants or if was somewhere like an office party or whatever and there was a buffet, or the time my now husband moved in and filled the fridge with food i had major anxiety attacks. i'm ok now cause him and my personal trainer made me eat but yeah, people just thinking im picky or attention seeking and now i am a normal weight people dont believe i weighed 6 stone,
Type 2 diabetes, fibromyalgia, spinal stenosis, osteoarthritis (knees & back), degenerative disc, sciatica, chronic fatigue, CIPN (Chemotherapy Induced Peripheral Neuropathy- way worse than diabetic neuropathy) from breast cancer (in remission!), fibro fog (memory/cognitive issues), depression. I'm 56, but this all started around 40. I've had people follow me into stores, yelling for parking in handicapped spots, saying I'm too young to be sick, I don't "look" sick, reporting me to management for using motorized carts. It's hard enough dealing with all this, and watching my family suffer, I don't need strangers making it worse! 😥
I have Lupus that attacks my central nervous system. It has progressed to the point that it is now obvious I am not well, but I spent the better part of 15 years trying to pretend I was fine because it was easier than trying to explain to people just how awful it is living in this body. I haven't been able to work in almost 8 years. People love to tell me how they wish they could just collect disability & not have to work. No, you don't. Not being able to contribute to your own life & family is horrible. Watching my husband work himself to the bone because I can't work is heart wrenching. Watching the pain in my kids' eyes because they are watching their mom suffer is awful. I would love nothing more than to park at the back of a parking lot & walk in/around a store. He'll, I'd like to walk to the bathroom & not worry about the fact that I might fall while no one is home. People get frustrated because I am slow. If it's frustrating for you, think about how I feel.
Narcoleptic here. I'm sick to death of people thinking that this illness is a joke. I've also had enough of people thinking I'm lazy. I literally have zero control over my sleep/wake cycles, even with medication.
I have CRPS and have an implant to control my pain people don't understand that just having clothes touch my ankle causes pain and that the simple act of walking can be excruciating.
I have Executive Functioning Disorder, as well as OCD, anxiety, and adhd-like tendencies. The amount of trouble it’s given me in school or life in general is insane. I struggle with starting things and making deadlines. I’m a perfectionist. I feel like something has to be my best work, I need them to see it how I do. I struggle with making decisions. I was thinking about it a few day ago and it hit me that this is going to be a constant. I realized that it’ll affect me in more ways then I thought. I’ve mostly been worried about pursuing further education and holding down more than a part time job but I realize that this is going to effect future relationships I might make and so much more than I realized. Stuff’s gotten a bit better but it’s exhausting. And trust me, if you’re tired of me forgetting something or struggling to decide or missing deadlines then let me assure you, I’m just as over it as you are. Not to mention all the annoying meds. I hate pills.
I have epilepsy, and usually I am able to take my anti-seizure medicines on time in the mornings and evenings. In some evenings, however, I haven’t always been able to get home to take them for sometimes as long as 3 hours. Yes, I remain conscious if I don’t take them for a while, but anything beyond 10PM makes me paranoid. Also, they have a long list of side effects, which I have been dealing with ever since my epilepsy diagnosis in May 2020. For example, I get tired easier than I used to but have trouble falling asleep.
I have a vitamin b12 deficiency, I have 3 monthly injections for it, when it's wearing off I get tired, my eyesight fades in and out, i get the tremors in my arms and hands, i forget things, find it REALLY hard to concentrate on simple tasks & instructions, along with sometimes slurred speech, im oftern in a confused state....people don't believe me & know nothing about it.....
dad in sign language is a great way to communicate with your dad if he is deaf or hard of hearing. There are many different ways to sign dad, but one of the most common is to simply put your fist against your chest and then move it up and down. You can also sign dad by making the letter D with your hand and then tapping your chest. Whichever way you choose to sign dad, make sure that you do it with a confident and affirmative attitude - after all, there's no greater dad than yours! Read another amazing blog: https://lead-academy.org/blog/dad-in-sign-language/
Fibro/CFS I look ok but somedays I can't walk because of the feeling on knives in my feet. Stress and migraine bring on a crash, its like the lights get turned off. I'm not faking I honestly can't move, can't talk, every thing feels a million miles away. Somedays I can walk without help, somedays a walker other days a wheelchair and other days I'm stuck in bed. I'm obese so people think I'm just lazy and eat junk food. Most days I have trouble preparing a single meal let alone eat it. I have to budget my time. Do my shopping about an hour means at least 2 hours in bed after. No one actually chooses to live this way because it's not a good life it a life sentence. I may get well but I may also get worse. But I look perfectly ok
I always hate it when people say, just try this diet, just do this exercise, pray more, etc. I have multiple food allergies and an already on a strict diet because of that. I have had people convinced that my diet is causing my migraines. I was still getting migraines when I was only able to eat plain salads. (just salad mix and nothing else). I have asthma; I can't exercise if I'm going into asthma attacks from sitting on the couch. Even on my good days, I had depression that would often keep me from doing things. My mom has an extremely debilitating disease that is invisible called MCTD, basically she has multiple autoimmune diseases, diagnosed 23 years ago. If eating a different diet could heal her, then she wouldn't still have the disease.
This is so eye-opening. I've never been one to discount someone, but all these details are very good to know. I think something like this should be required reading for everyone in high school. Get the vast majority of people to understand you can't always tell by looking at someone.
I think you all need to stop caring what other people think. People are a-hole and mostly only think of themselves and their lives. So they don't understand that their problem not yours. Just except they'll never understand.
Sure! Great idea! Now what's the magical formula to make that happen? (People, when you tell others "You just need to ____!" you're not being helpful. If it was as easy as "just-!" WE WOULD ALREADY BE DOING THAT THING. It may work for you, but it ain't universal.)
Load More Replies... This post is literarly for people to talk about their conditions. How its a surprise that they do?
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