This Instagram Account Spreads Awareness About What People With Chronic Illnesses Go Through Every Day And Here Are 40 Of The Best Photos
InterviewOne of the most important things in life is a person’s health. Recent times have shown how crucial it is to take care of ourselves to prevent our health from deteriorating. But even if people lead a healthy lifestyle and are aware of their habits, there are some diseases that change a person’s life forever and these are chronic diseases.
According to the National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP), chronic diseases are “conditions that last 1 year or more and require ongoing medical attention or limit activities of daily living or both.” Such health problems become a real everyday struggle that can be difficult for others to understand. Having this in mind, a couple who call themselves Chronic Illness Advocates started sharing inspiring messages to educate and encourage people to start a more open discussion about chronic illnesses.
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THIS. I've spent most of my life being told to "drink more water, go outside, take some exercise, eat less chocolate, don't sleep so much". Nobody ever says "hey, I know it's a bad day, well done for getting out of bed". :(
Well done, no matter if you managed to get out of bed this morning or not. Your health matters. You matter. You know what you need better than anyone else. Keep up the good job.
Load More Replies...They haven't got a clue. I'm sick of being told some diet or homeopathy will make me better. Really? Going to grow back the colon I had removed at 15 (I'm 48 now) or stop my Crohn's from fighting the rest of me? Idiots haven't got a f*y king clue about life with chronic pain or illness.
I tried explaining my issues around exercise to someone and they were convinced that aqua-aerobics were the answer! Just get in a pool and have even more resistance for my limbs instead of much easier air..! Why are people so convinced that they know and why don't they listen?
Load More Replies...This is why I never give unsolicited advice to people who are suffering. I am not a doctor, I don't know what they're going through. But I can listen, be present, and offer support and kindness.
my dear friend died at 43, he had an aggressive form of MS. One time someone said 'but many people live years and years with MS, he needs to be more positive' . Sure that will get him to walk again, just thinking he can walk. He was the most positive person I knew, but that didnt help him in any way to overcome what MS was doing to him. People can be so well.. dumb sometimes.
So wish someone had taught me that before I learned to put myself last.
the worst part of this is that those ppl sayin this 💩 are the ppl who should support/lift us up
This is why actual disabled people hate the whole "it's not disabled, it's differently abled" and "you can do anything a healthy person can" mentality. No. I am disabled. I CANNOT do the same things that you can do. That is the entire point. Denying my limitations is just another form of shaming me into 'being better'. It is toxic and hurtful and makes us feel like s**t.
I can relate to all of these. I also feel like a burden, because relatives often stop in to help me, and I am younger than they are. I keep thinking that I will overcome, and hopefully, I will.
Thanks. This made me tear a bit. I am feeling today so feverish and nauseous :(
If I was a dog I would have been put down by now. People laugh at that but many animals are treated better than people. No one thinks that they are faking.
Thank you. I have Chronic pain daily. I am not old. I do not look sick.
The Instagram page @how.u.feeling, which has 115k followers, shares pictures of Justin Cypres and Sarah Gausepohl, who pose with a board in their hands stating some powerful words meant for those who struggle with their illnesses and sometimes find it hard to keep moving forward. Some of the things they express are also directed at people who are healthy and don’t necessarily understand what it means to deal with chronic pain. Their thoughts teach these people to be more compassionate and understanding.
This is so very true. And the longer you have to hide that grimace the harder it gets.
especially if it’s something that progresses over time 💔
Load More Replies...With you. I suffer on a daily basis, mental health, physical health. Someone viewing me will have no chuffing idea what's going on in my inside.
I know that having chronic pain makes me more compassionate towards other people. If someone else snaps at me in public my usual response is not to get upset, it is to just take a second to think about what that person may be dealing with in their own life. If I'm having a bad day and may appear rude to someone I'd hope that they would give me a second thought rather than just the knee jerk response of being offended.
Load More Replies...YES!! This is so true. There is not a day that goes by that I am not in pain. On the "scale" my daily pain is around a 3-4. For the past week or so it has hovered daily in the 6-7 range. I have iced, heated, massaged and cried. Nothing works. This is my life. I deal with it. If I go to the doctor, I'm just "shopping for drugs."
Just passed my 22nd anniversary with chronic pain. It still hurts. No one "gets used to" chronic pain; what you do get used to is finding ways to deal with it.
Eds and pots exercise or it gets worse for you exercise and dislocate boneand have heart issue. I feel this one
Its crazy how it can ruin your life. I am 31 and cant work, study outside the home, improve my knowledge of the local language, go out and join clubs to make friends (so the only person that talks to me is my partner), have sex, exercise, do gardening, go hiking... It has destroyed my life completely.
I always think that people might think, that I'm just lazy. This chronic fatigue is stressig me out, maybe because I still don't take my illness as a fact.
The happy medium here is "This illness has limited my activity, but I refuse to allow it to define me."
Honestly, having a good day can be terrifying for a chronically ill or disabled person. Because if you dare to take advantage of a good day, people take that to mean you've been faking every other non-good day.
That is so true!! It means i'm not in bed with migraine and can smile and laugh a little bit f.x.
Bored Panda contacted Chronic Illness Advocates to find out more about their project. The things that they present on social media come from their everyday struggles as both of them suffer from many chronic illnesses. Justin shared that this is what gave him a spur to create something on his own: “I felt that there was a lack of awareness and positive/educational posts in the social media arena. I thought that I couldn’t be the only one feeling how I felt so I decided to start posting messages about how I felt on any given day.”
I went to a rehab once and the people my heart went out to the most were the “pain patients”. Many addicted to oxy, percocet, s**t even heroine because of their chronic pain. Then to help their mood they would get addicted to benzos. Recovery is hard, but I just felt for them so much because even if they conquered the addiction they still had the pain. And it’s not something you just meditate away. Anyone living with this I see you, I hear you and hope you are able to get better
Let me talk about it enough: You are in a never-ending loop cycle. You don't really know what is the cause and what is the result, it is a cycle of addiction. Change your life drastically and learn to survive the new way. It's not going to take just weeks nor months. Persist in the change.
Being chronically ilI I can relate to this and confirm this statement is something very important, as we tend to feel we're being seen as lazy and/or selfish couch potatos
Precisely. I didn't realize I'd overdone it this past Saturday till Sunday morning. I'll be off the cane again tomorrow, but meanwhile.... Yep. Chronic issues from injury mean I should've just let myself take a rest Saturday!
Load More Replies...And this is an example of the pressure society unnecessarily applies to what is outside the "accepted norm". (See also, for non-chronic illness sufferers, still being asleep after 9am, even though you work the night shift and didn't get home until 3am). Society's norms are not normal.
I need to seriously hang this one on my wall in order to deal with the guilty feelings of staying in bed.
I am useless at this my chronic illness has literally created a monster in my head the shouts at me calls me names I am vile to myself constantly I never give myself a break or focus on what I have achieved considering
No one should have to live in pain. So many do though. Pain isn't a character builder or some virtue, it's just pain. To be sympathized with, understood and, if possible, alleviated. It's a horrible debilitating thing that just eats away at whoever has it.
And please stop rubbing your religion on us chronic people. Many religious fundamentalists predate on people like us both in real and online life. Some people find confort in religion and thats great. But unless they bring the topic shut up. If I hear one more time how "god has a plan" or "everything happens for a reason" I will lose it. It means that this persons god could cure us but chose to make us suffer and ruined our lives. I dont believe in gods but I dont want to hear about that psyco.
And it sucks. There is nothing good about it. Chronic pain here , born with osteogenesis imperfecta, and have suffered hundreds of breaks and surgeries galore . I've been told it was time to stop milking it , that it could not possibly be that bad or I would be in bed. I decided they were right! I went back home and got back to bed!
Some times pain makes you through up again and again. Pain drains your body and your mind....
even with my illness I went through a bone marrow biopsy where the 👨⚕️ had to keep giving me lidocaine, about 30% through the procedure he went to stop for more lidocaine…. he** nah….! told him to keep going, just get this 💩 over! i went through da** near through the entire biopsy NOT being numb, I felt a lot and I mean a lot of pressure/pain when he withdrew my bone marrow ((worst part of it)) first and only person in the history of the trauma center ((couple hundred years old)) to do a biopsy with 100% feeling it 😁 but my chronic pain has knocked me down for weeks at a time lol
This idea and their work soon went viral, proving that people who have to deal with health problems are not alone. Justin told Bored Panda: “ At first I was surprised at how some posts went 'viral' but then, the more I saw it happen, the more I realized how many people suffer.” Justin himself has to deal with a whole bunch of illnesses such as fibromyalgia, ulcerative colitis, migraines, depression, etc.
This is so very true. I remember not really getting what my dad was meaning when he said he felt like he was walking on cords (I thought maybe he felt like his sock was bunched up, he had renal failure and diabetic neuropathy). I finally understand :(
ughhh this this this!!! i have autism, ptsd, adhd and depression and frequently have to take mental health days or i literally cannot function. despite the fact that i have worked this out with my employer my mother still says things like "i wish i could have a day off whenever i wanted!" and it makes my pain, emotional and physical, feel so unbelievably invalid.
Reminds me of a comment from a former boss about my sick leave: "So! How was your vacation? You feel rested enough?" My reply: " You know, when you just spent over five months suffering from a back injury so bad that you can barely whipe yourself because your back can't bend, it's not vacation".
And it doesn't mean that I have time or energy to do a zillion favors either. I don't work because I can't, not because I'm lazy.
Thank you. I think that's a big thing that my friends don't get. The few friends that I still have.
Yeah, it's weird how nobody wants to talk to you because you're ill. It's not like it's contagious.
Load More Replies...And please think about us for a second before inviting us to do things. The other day I was invited to go to a zoo that I always wanted to visit. You can only get from the parking/train walking about 30m up and down plus the hours that you must walk there. I simoly cant do it unless I get a wheelchair and I am not mentally prepared yet. Please if I say that I cant do it dont question it and dont be angry at me. Do you think that I want to not be able to have a life outside our home?
Please for the sake of those who love you accept the use of a rollinator (walker with wheels) or a wheelchair. We want to enjoy life WITH you. I regret letting my Mom deny her need for a chair.
Load More Replies...And sometimes nothing happens so you're like 'YeAH, I can do X without consequences'. Next time you do X though........
Right? Some days I can do groceries and walk the dog the same morning and others I am 4d ill because I walked 20m. Its absurd
Load More Replies...I cant Make safe appoinments. What in the morning looks like a good Start or Day, can totally Change within hours or even Minutes.
It's so frustrating, isn't it? Go to bed feeling fine, wake up feeling like death.
Load More Replies...This drives me absolutely crazy. One day, I can take a shower, do the dishes, cook a meal, etc. The next day, I can barely get out of bed. And I never can tell exactly what caused it.
Pretty much like my wife. She got Covid last year and now she's a long hauler, with chronic everything. Her "good days" put her back to bed for days.
So very much this. I hate committing to anything as I genuinely dont know what kind of day I'll be having 3 weeks from now
My mom is like this and I hate it. I don't have a chronic illness but like most people some days I'm just tired or not feeling well or maybe I have an injury or something. Normal people often share these things and talk about them, which can actually help you feel better, but my mom doesn't get this. She is the only one allowed to be tired or have pain.
I'm feeling fine now, but back when I didn't know about my sensitive kidneys, I had such an embarrassingly low stamina, couldn't even walk up the stairs without breathing my heart out of my chest from my throat. Meanwhile I'd see elderly people all euphoric and lively, just came back from their regular hiking trip, looking much healthier than my then 20-something-year-old ass.... and judging people like me. It used to bother me a lot, but I didn't have any proof of anything legit. Wish more people stood by the "looks are deceiving" words of wisdom.
I've been saying this to my much younger neighbor and just wrote her and apologized!!
The fatigue is as bad as pain, for me, and part of the reason it's worse is because so many people don't really understand what it's like. I find walking to the mailbox exhausting some times.
Like, yes, that’s exactly why I go to the doctor and take medicine for this condition???
Coping with these struggles takes a lot of energy and makes people feel like they are all alone in this battle. When such dark days come, Justin says that the right thing to do is to understand that “you are not alone, what you feel is valid, and there are many different social media accounts that can help you find a community that is super supportive of your struggles.” And their project also seems to be having a huge impact on how people see and hear each other, becoming more understanding and sympathetic.
And I'm damned tired of hearing, "You don't look disabled." Really? What exactly does a disabled person look like?
In a wheelchair. Which is ironic, since the average wheelchair user is more abled in everyday life than the average sufferer of a chronic invisible illness.
Load More Replies...You know I was diagnosed at 11 with Synovitis and tenosynovitis and 40 years later I was also diagnosed with diabetic neuropathy and may end up losing a foot. Apparently that isn't enough to warrant a blue badge though, and the nurse told me that at least it doesn't hurt to walk. It does, after 40 years I got good at not letting it show.
Having chronic lymes has made me an 80 yr old woman in a 41 yr old body
Using tools like wheelchairs and walkers isn't giving up, it's making best use of our time and energy. Not wasting effort that could be used to live a little
Accepting limitations isn't admitting defeat, it's a necessary step to continue the fight
It is surprising how much pain and discomfort you can get 'used to' and how easy it is to hide. I don't want it to be the first thing people know about me. I don't mind sharing but only if I think the person is going to actually listen, and not lecture me on what worked for their old mum who had a completely different problem. I'm not old, I'm ill and I'm also living with injuries from an accident. It isn't the same.
Unsolicited advice is one of the worst things that people do.
Load More Replies...That pain scale drs use is not accurate for chronic pain patients. We will base our pain on OUR PAIN, which we are used to. Our level 4 is a healthy person's 6 or 7! We need to be asked not "how bad is your pain", but "if a healthy person felt your pain, how would they rate it?" I had 2 vertebrae rubbing together, no disc, for decades, and my worst day was "about a 6". Until I based my chronic pain on what "regular people" would say. My "numbers" became higher, and drs began to take it serious, and I received adequate treatments!
Doctors dont understand that pain cannot be meassured objectively because people feel it differently. The same wound might be a 4 for you and a 6 for me. The scale needs to be done relative to the patients pain. For example I think about it from 1-5. For a normal person 1 would be no pain, but thats not a thing for me anymore.
Load More Replies...And then people (including doctors) don't believe you're in as much pain as you actually are when you tell them straight-up how much pain you're in.
1/2 A few months ago I was taken to hospital due to extreme rib pain, so bad I was struggling to breathe. I have lots of health issues so pain and ambulances aren't terribly new to me. What was new to me, however, was that the paramedic asked me if I wanted painkillers. Literally the first time I have ever been offered painkillers, over many dozens of situations involving severe pain. I said no, thinking it was a trick to see if I was a drug seeker. A few minutes later, I'm still clutching my side, and he asks me again. It literally doesn't cross my mind that this is genuine, so I decline again, because I am terrified of being blacklisted as faking (something I'm sure every chronically ill person can understand). A few minutes later, after the cannula is in, I feel funny and the pain disappears. I ask him if he gave me painkillers. He said yes, he gave me fentanyl because I am clearly suffering, and what the f**k sort of paramedic would he be if he didn't stop my pain when he is
Load More Replies...YES!! And, we don't talk about it because we are blown off, minimized and told about how bad THEY are; we're told about the latest hoax methods that have cured the friend of a friend of a taxi driver's son's mother-in-law's yogi's dentist's veterinarian's sister's...you get it; we're told it's not THAT bad; and we're accused of being drug addicts trying to shop around for opioids.
This is very true. Apparently pain is very difficult for humans to show compassion for: if you attempt to speak honestly about your pain level, no matter how calmly you explain it, people either shut down or decide you're being melodramatic in order to seek some undue attention.
You can often tell by the way we walk, not striding, but taking careful steps like a fragile, elderly person afraid of falling and breaking a hip.
Limping, always holding the hand rail afraid of falling.
Load More Replies...Or that you have this burst of energy you don't want to waste so do everything knowing full well the minute you sit down your muscles are going to tighten and extreme pain is on its way - but if you don't take advantage of that energy burst it could easily come and go in a day and you're still sore but the house is still a disaster filling every second with guilt, frustration and shame
Me,,, every bloody time. I'm thinking Hey I feel great today Later that day I'm in complete agony!!!! Never fails
Every trip out of the house has a price so they are carefully planned. Even doing too much at home can have me laid up for days. I wish there was a pain simulator that all med and nursing students have to wear for at least 1 day. Then they have at least some vague idea of what our lives are like.
Yes, and getting snarky comments from family if they call at 4 pm and I'm in bed because I over did it already or it being implied that I'm "lazy" because it takes me 4 days to do something regular people can just DO. Life is so many increments, and so much energy to try to make deals with your body that you need to do more than you know you can
A family friend yelled at my mother for cancelling because my dad was unwell. Her yelling..,I'm sick of you using Fred as an excuse for cancelling. My dad died 3 weeks later..heart attacks, Emphysema, amputated leg and more. 😥😥😥
I've almost lost friendships bc they get mad when I have to cancel plans last minute. I just wish they understood
Yes. People who don't believe or understand invisible/chronic illnesses
Load More Replies...If my SO is having a better day, I want to know so I can enjoy it with them. I don't want to punish them for having one and I certainly don't want to take it for granted. I want to enjoy their company when they are in less pain for a change. I'll still be there when the pain goes back to 'normal' (what a hideous application of that word!).
Also, I don't want them to make many plans with me on that day. Or I'll spend the next days recovering. :/ I want to slowly enjoy the day with only a sketch of a plan and without pressure or rush, with flexibility to do what I feel like doing at the moment including having breaks whenever (because it's so rare for me to have days like this, when I can just go out and do the things I've been wanting to do, and missing out on. Sometimes it's really small things).
A good day doesn't mean we are cured and can now function the way average people do. There is no cure, just the tides of good and bad days
I have to constantly remind someone in my life of this. Because I don't work she thinks it's ok to constantly pester me to do stuff for her. I just can't do it all.
I'm dealing with this right now. Ironically, my SIL developed sciatica and now frequently asks for favors because she's in too much pain to manage. Um...hello?
Load More Replies...The worst thing I know is when close family who know of my health problems do the “why are you angry” and “it’s not so hard to keep a friendly tone with people you love”. No chronic conditions don’t give me a free pass at being rude but maybe you can let me have the benefit of the doubt that I’m not acting out of spite but exhaustion.
I agree one million percent. I can't get a handle on my own life so it goes without saying that I can't run anyone else's.
All those who have had to fight for the benefits they are entitled to have. All the form filling and getting proof from doctors that the "judges" don't even look at until you lodge the appeal.
Thank you. You also made me tear up. I am having a very painful day today and taking care of a 2 year who won't nap can be overwhelming. Knowing other people are out there like me, so that I'm not alone makes me feel better. Everything else on the internet is about fake super moms.
My mother suffered severe hip pain for decades but did not seek medical help for it until after all the kids had moved out. So yeah, that one hits home just as well as the others.
thank you, i sometimes wish my kids knew ((more than they know now)) but i know i do NOT want them to not do things with me because they’re afraid for me/worry about me
Getting stuff done also includes recovering. It needs to go on the to do list.
I get so frustrated because it feels like I'm just wasting my days. There's nothing anyone can say to make it better either because I know that it's degenerative. Things are only going to get worse and it makes me so miserable sometimes. Then I feel bad for being self-pitying. I just can't win.
Or 'I'm having a good day so I'm going to take advantage of it and... OW! Now I'm in bed for 3 days".
Use it, or lose it. If you don't exercise, you won't be mobile. If you do exercise you definitely won't be mobile
5 minutes of “doing stuff “ always results in recovering for days or even weeks for myself 😞 i too have fibromyalgia, and that is Just 1 ((of 4 that cause chronic pain feom the nerve/spinal cord injury i suffered)) neurological damage from the botched surgery
I once explained my illness to my boss. She looked me dead in the face and told me she didn't believe me. She knew I was sick, but she thought I was exaggerating to get sympathy. Yeah. That did not go over well. I quit talking about my health altogether. When I called in sick and she'd ask why, I would remind her that it was against the law for her to ask. She started to tell me she wanted a doctor's note every time I was sick. I reminded her it was only needed for 4 days or more in a row of absence. It was not a good time.
My husband doesn't understand sometimes, why I need to stay home away from everyone and everything, after working all week in a public school. My anxiety/depression is taking a beating. My migraines are worse. I take meds for all of it. My body is hurting.
So true! Didn't expect to be on disability and deciding day to day what I can do at my age. Trying not to do too much on days I feel better. Some days all I can do is rest all day.
You have friends.. lucky you. Mine left and I don't get out to make more.
Yes! I just turned 50, was diagnosed with MS last year. I went from peak of k career to near retirement in a year.
So many people do not realize just how true this is. One in ten suicides are chronic pain patients. A psychology magazine just shared a study that said doctors believe poor patients can handle pain better. That says that doctors are not actively treating chronic pain patients that appear to be poor because they assume we can “handle” the pain. No wonder one in ten of us are dying because we can’t handle the pain like they think we can. 😢
Amen to that. Who else sometimes wakes up in the morning and instantly starts crying?
I'm obsessive-compulsive and have high anxiety. I relate to this so much.
Oooh, that's right up there with "everything happens for a reason". Yes , it could be worse, it could also be better. And what good does it do anybody saying that either? This is the bronze medal of the Misery Olympics.
And the f*****g religious nuts telling that god has a plan for you... Or the people telling you that "others have it worse". Its a bad excuse to not try to be empathic
Load More Replies..."It could be worse." Well, yes. It could. But that doesn't mean it isn't BAD.
" Yeah but you survived " it doesn't feel like I survived. It feels more like I'm constantly struggling for survival. Even though the big part of it is gone, a big part of me is gone too.
That's a thoughtless statement that completely invalidates what the other person is experiencing - no matter how "well meaning" it is.
My best friend has spina bifida and she expressed this to me. She then added that since I'm not a licensed medical professional and am unable to provide relief, she would accept a brew, and for me to watch her kids for a couple of hours while she slept. We can't give relief, sometimes the only thing we can offer is support if you want it (and not push it if you don't ask).
I love that you totally understand you friends condition. I wish I had a friend like you.
Load More Replies...Amen. I was told by a NP that there was nothing the ER could do for my pain and I should discharge-without treatment. I have two herniated discs that are compressing the nerves to my right leg and I have muscle spasms from hip to toes that you can see the muscles twitching. Besides spinal injections, only one provider has offered me any sort of pain relief and I can only take one at bedtime.
The only time I have been pain free in the last 4 decades was when I had an epidural for surgery to remove my womb and d all the big fibroids it contained. The surgery site was tender, but the back and joint pain came back in full force on day 3. They tried Tramadol, away with the fairies and more relaxed about being in pain.
Advice full stop. Nobody wants to hear about Auntie Margaret who soldiered on with a bad hip. It's not the same and it never will be. Please shut up and make me a cup of tea.
I try not to give advice. I try to give SUPPORT. Emotionally & physically. I'm not a doctor, I'm a husband. My medical knowledge is based on my personally experienced health history, not hers. So no, no advice. Support, however, is something I won't stop giving.
"Why can't you be rational" while I'm having a full blown panic attack and feel like I'm dying
"Try this, it worked for me, so I'm sure it will work for you too"
I was brought to tears once when I was having a very bad time, and a friend just asked "what can I do". No "if you'd only" ... no "have you tried" ... just "how can I help".
Also, mostly your advice is stupid s**t you read on the internet and unless you're a doctor you should keep it to yourself ALL the time,, forever.
One would think this would be something people understand since each of their days are different as well. No two days are the same.
Or you did a small thing since you were fine ... And Now the paying for that thing is here....
My mother has Postural Orthostatic Tachycardia Syndrome, and no one really gets it except for the people in our household and even my grandmother (mom's mom) has no idea and she just doesn't understand how hard it is
Reminded an ill friend that she only sees me on a good day. She is not alone in having "Oh, poor me" times and shouldn't beat herself up as "failing" when her body insists on resting for days at a time. Waking, having meds and making it to the bathroom are worthy of praise
My husband has chronic heart disease. People say...oh is he still playing 10 pin bowling? He pushes himself to because he has been told by his Cardiologist he MUST exercise....and he loves it and looks forward to it.
I can’t count how many times my sister has said, “How come that doesn’t happen to me?” Because I’m not you! 🤦🏼♀️
When my MS flares up badly; I’m beyond exhausted. I can sleep 16 hours and still be dead tired!
When my alarm goes off, my "Just 5 more minutes" can mean another 12 hours asleep. Without multiple alarms set and determination to try my best, I would miss taking my meds many times a week. I could sleep for days, til my bladder wakes me (once I finally get to sleep). Most days, my battle is to wake twice and have food and meds, then I go back to sleep.
Because your exhaustion is not the sleepy kind of exhaustion. It's the kind of fatigue where your whole soul is drained, and you are tired all the way down to your bones. No amount of sleep can fix the sort of exhaustion that comes with fighting just to breathe every day.
I may not be able to understand. But I can understand that it is real and legitimate.
Yeah, they really do not get it. Even if you don't have, say SM, but 3 "less bad" autoimmune things. Those bitches are like a pack of piranha working together -_-
My rheumatologist once told me autoimmune diseases tend to run in packs, and if you've got one, the likelihood of developing another is high. She was right. Some nights, I feel like I'm being nibbled to death by geese.
Load More Replies...Me, early in the day: I'm going to make lasagna for dinner. - Me at 1500: Cheesy toast it is!
It is a constant in my life. It is always there, every move I make, every thought and breath. What movement can I make will cause the least amount of pain? When is my next medication or doctor appointment due? How do I explain to someone that they can't touch me casually because a small touch can cause pain because my skin is on fire?
The worst was when I had to miss my best friends funeral because I was too sick to get out of bed it was simply heartbreaking and everyone said it was OK put me it wasn't I miss her so much
I think how nice it would be to be able to work and then I remember how difficult working would be: 1) frequently calling in on bad days, 2) scaring people when I have a seizure, 3) the chance of being fired because I had a seizure, which surprisingly happens often but u see a different reason for being fired.
I empathize. I am always looking up job openings, and thinking about applying........but just getting out of bed and getting started on my day is so exhausting most days, I realize that these day dreams of going back to work are impossible.
Load More Replies...I truly wish people could feel compassion to those with chronic illness and pain, because I'm a sufferer, too. I never in my life thought I could be so tired and hurting.
Healthy people act like you're lucky for "not having to" work. No. I would give anything to *be able to* work. To have financial independence. To have freedom. To wake up and be able to actually breathe. To stand in my kitchen and cook dinner in one stretch, without a break every five minutes. To have an actual life. But people act like you're chilling about by a pool drinking mojitos all day. Staying home from chronic illness is not a luxury, it is a cage.
And I end up boring myself because I've explained it so many times over the years. And it changes with time.
Yknow you can actually pay bill board places to put up that kind of 🤔
Load More Replies...This entire post resonated deeply with me. You could probably tell by my individual comments on several of the photos. Being sick sucks. No one wants a chronic illness. Berating someone for it or ghosting them for it isn't fair or nice. We didn't ask for whatever illness we got; be glad it's us and not you.
I need to send these to my managers at work. Month 9 of Long Covid and I'm up to 6 hours per day, 4 days per week.
Year 6 of ME and fibromyalgia, I am at 6.5 hours per day, 3 days per week. I've spent two years trying to get this increase and 3 of the hours are only just recently overtime I get temporarily while they try to figure out if they have it in the budget to keep them - after "not" forcing me to go part-time when I could only manage 4 hours per day, 3 days a week. It may be hard to find people that understand but know it's not your fault at all, even if we can't shake the negative feelings I want you to know you're doing great!
Load More Replies...💜 a true chronic pain sufferer, worries about others over themselves most days god bless you
My seizures and anxiety/panic attacks make my sleep schedule rotate. No matter what any doctor has tried, it's impossible for me to stay on a regular schedule. If I try, my fatigue triggers more seizures and anxiety/panic attacks. It's one big loop.
Yup, they feed off each other. It's exhausting trying to figure out which one is doing the most damage each day.
Load More Replies...Thank you so much for this post full of hope. I have a heavy fibromyalgia and I can relate to so many things. I hope it also did for everyone around the world suffering of chronical illness. Let's fight it like warriors!
I have tears running down my face as I read these quotes. No one knows us better than ourselves. This is NOT a club that we asked to join. Due to the "opioid issues " I have been cut back on my meds because the doctor is being watched. I haven't been able to find another doctor that will 1.believe me 2. treat me with anything other than suggestions for surgery 3. or just give me useless drugs. I love it when the insurance company says it's too soon to refill when my doctor calls it in. Do they feel my pain.
I wish for Christmas that you would understand it enough yourself to initiate the inner healing process... like I did.
Even doctors have a hard time with this. I ended up talking to a psychiatrist before I was taken seriously.
Yeah same thing and I was drug tested before they would consider real testing and it stil took years to get a diagnosis
Load More Replies...And don't complain if it takes a day or two to answer a text. Some are resting, some shaking so badly they can't hold anything, some can't stand the light of a screen right now. Send remote hugs and love
Or these: *You don't look disabled........ *You sure sleep a lot! *I know you're not doing anything else, so can you do xyz for me? * You look great
I have gone from "You're too young to be in pain" to "You should expect that at your age" via "Have a baby that'll cure it" and "You're making it up for attention". Pity it took over 35 years to qualify for help, but I now have a loo and shower I can use and money to pay for treatments that keep me mobile that are not available on the NHS
Thanks for fixing it by saying 'year'. People go about writing day or week, and I have always felt inferior because I kept thinking that all my 52 weeks were bad so am I abnormal? Thanks for this.
Almost as bad is "Gods plan". A better reason to try making the chronically ill hate God I've never heard.
Right? If i believed in gods I would be extremely mad at them. Any god who chose to make us this way is a monster and deserves no worship
Load More Replies...I like to compare myself to a healthy sloth. Slow and steady, with time for a doze before a nap before bed time
People with chronic illness don't pretend to be sick, they pretend to be healthy.
Dear doctors: Yes, I have chronic pain, but that doesn't mean every pain I have is related to this. Don't have me put at risk or in danger because you assume it's just my fibromyalgia. Ok thanks bye.
Exactly. Also stop thinking that everything is caused by our depression/anxiety. I am depressed because I dont have a life anymore and I am ill not the other way around
Load More Replies...Also - just because I am young and look healthy does not mean the pain is all in my head, it is actually caused by depression or abuse, or that it will go away soon.
This has made me cry because every single one of these statements is so relatable for me. I never expected to get ill and never get better. I never thought I'd end up not able to work, or a wheelchair user or in pain constantly. I've been ill nearly 12 years now, and it's robed me of the chance to be a mum which is so hard when all my friends are having children. I feel isolated and forgotten about. I'm not brave or an inspiration; I wasn't given any choice. I just have to live my life the best I can. I'm lucky to have an amazing relationship now; even though I sometimes wonder why he's with me and worry what other people think when they see him pushing my wheelchair. I try to live a life that's as full as I can but I still feel a failure
You are such a strong person living this long with a chronic illness. I really admire you. I also got all teary reading this
Load More Replies...I feel this ... I have narcolepsy and people tend to be all joking of "must be nice to nap all the time " . Then goes the explanation of "imagine wanting to do something ... but wait you must rest or sleep -- delay that " to them -.- and I am not lazy , I legit am exhausted 99% of my awake hours .
I have multiple chronic pain disorders, and I would keep all of them to not have narcolepsy. While I do have sleep disorders, they're not nearly as life-intruding as narcolepsy.
Load More Replies...To whom it may concern: People that are chronically ill and/or in chronic pain are not drug seekers! We just want a better quality of life. I have multiple illnesses and a couple of them causes chronic pain. I have never asked for anything for my pain because I fear they will label me as a drug seeker and bar me from any kind of pain relieving medication as my conditions worsen. One time I slipped a disc in my neck and went to the ER because I was in terrible pain. Without knowing anything about me the ER doc was treating me like garbage, until he realized that I had not received any kind of pain medication in several years. Then he told me because I hadn't gotten any pain meds in a long time he would give me a few.... completely changed my outlook on pain relief. So most days I just suffer. This needs to change.
If it's legal where you live, I experience considerable relief from cannabis edibles. It doesn't eradicate the pain; it changes the sensation. I still know where my pain is (so I'm not likely to injure myself), but it no longer feels like "pain." As a bonus, it elevates my depression and calms my anxiety. I have been using cannabis edibles for several years now, and my dosage has not increased. I take one dose a couple hours before bed. Mostly, I don't during the day, unless I'm in a flare. Food for thought, anyway.
Load More Replies...I was having a bad day. Something like this just gives me that little lift. I’m usually a very upbeat person but sometimes it’s difficult
A couple repeats but I really loved this one. Thank you for sharing!
These are so true! I don't have a chronic illness, but I'm currently 8 months pregnant and have had a lot of complications, including a lot of pain. For me the end is in sight: I can't imagine being diagnosed with something that never ends.
Thank you, there needs to be more people like you. Bestest wishes with your pregnancy
Load More Replies...People with chronic illness don't pretend to be sick, they pretend to be healthy.
Dear doctors: Yes, I have chronic pain, but that doesn't mean every pain I have is related to this. Don't have me put at risk or in danger because you assume it's just my fibromyalgia. Ok thanks bye.
Exactly. Also stop thinking that everything is caused by our depression/anxiety. I am depressed because I dont have a life anymore and I am ill not the other way around
Load More Replies...Also - just because I am young and look healthy does not mean the pain is all in my head, it is actually caused by depression or abuse, or that it will go away soon.
This has made me cry because every single one of these statements is so relatable for me. I never expected to get ill and never get better. I never thought I'd end up not able to work, or a wheelchair user or in pain constantly. I've been ill nearly 12 years now, and it's robed me of the chance to be a mum which is so hard when all my friends are having children. I feel isolated and forgotten about. I'm not brave or an inspiration; I wasn't given any choice. I just have to live my life the best I can. I'm lucky to have an amazing relationship now; even though I sometimes wonder why he's with me and worry what other people think when they see him pushing my wheelchair. I try to live a life that's as full as I can but I still feel a failure
You are such a strong person living this long with a chronic illness. I really admire you. I also got all teary reading this
Load More Replies...I feel this ... I have narcolepsy and people tend to be all joking of "must be nice to nap all the time " . Then goes the explanation of "imagine wanting to do something ... but wait you must rest or sleep -- delay that " to them -.- and I am not lazy , I legit am exhausted 99% of my awake hours .
I have multiple chronic pain disorders, and I would keep all of them to not have narcolepsy. While I do have sleep disorders, they're not nearly as life-intruding as narcolepsy.
Load More Replies...To whom it may concern: People that are chronically ill and/or in chronic pain are not drug seekers! We just want a better quality of life. I have multiple illnesses and a couple of them causes chronic pain. I have never asked for anything for my pain because I fear they will label me as a drug seeker and bar me from any kind of pain relieving medication as my conditions worsen. One time I slipped a disc in my neck and went to the ER because I was in terrible pain. Without knowing anything about me the ER doc was treating me like garbage, until he realized that I had not received any kind of pain medication in several years. Then he told me because I hadn't gotten any pain meds in a long time he would give me a few.... completely changed my outlook on pain relief. So most days I just suffer. This needs to change.
If it's legal where you live, I experience considerable relief from cannabis edibles. It doesn't eradicate the pain; it changes the sensation. I still know where my pain is (so I'm not likely to injure myself), but it no longer feels like "pain." As a bonus, it elevates my depression and calms my anxiety. I have been using cannabis edibles for several years now, and my dosage has not increased. I take one dose a couple hours before bed. Mostly, I don't during the day, unless I'm in a flare. Food for thought, anyway.
Load More Replies...I was having a bad day. Something like this just gives me that little lift. I’m usually a very upbeat person but sometimes it’s difficult
A couple repeats but I really loved this one. Thank you for sharing!
These are so true! I don't have a chronic illness, but I'm currently 8 months pregnant and have had a lot of complications, including a lot of pain. For me the end is in sight: I can't imagine being diagnosed with something that never ends.
Thank you, there needs to be more people like you. Bestest wishes with your pregnancy
Load More Replies...
