Having an invisible disability (ID) and/or invisible chronic illness (ICI) means that many things change. Just because you can’t see the changes doesn’t mean they aren’t real.
Most people don’t understand much about these disabilities/diseases and their effects, and of those that think they know, many are actually mis-informed. In the spirit of informing those who wish to understand …
… These are the things that I would like you to understand about me before you judge me…
Please understand that being disabled/sick doesn’t mean I’m not still a human being. I have to spend most of my day being very careful what I do, and if you visit I might not seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.
Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker that ever. Please, don’t say, “Oh, you’re sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome
Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing that five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either.
Please repeat the above paragraph substituting, “sitting up”, “walking”, “thinking”, “being sociable” and so on … it applies to everything that I do.
Please understand that the effects of chronic illnesses and many disabilities are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the bathroom and back, while the next day I’ll have trouble sitting up. Please don’t attack me when I’m worse by saying, “But you did it before!”. If you want me to do something, ask if I can and I’ll tell you.
Similarly, my illness/disability may vary suddenly, meaning I may need to cancel an invitation at the last minute, if this happens please do not take it personally.
Please understand that “getting out and doing things” does not make me feel better, and can often make me worse. Chronic illnesses/disabilities may cause a secondary/reactive depression (wouldn’t you get depressed if you were stuck in bed 23 hours a day for years on end?) but they are not caused by depression. Telling me that I need some fresh air and exercise is not not correct and probably not appreciated – if I could possibly do it that, I would.
Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something else more exciting. Illnesses and disabilities do not forgive their victims easily.
Please understand that I can’t spend all of my energy trying to get well from my incurable chronic illness/disability. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness or disability is coming to the realization that you have to spend energy on having a life while you’re sick/disabled. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness/disability.
If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought; and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with a certain illness or disability then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities, if something worked we would know about it.
If after reading that, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don’t expect me to rush out and try it. I might not even reply. If I haven’t had it or something like it suggested before, and it sounds reasonable, I’ll probably take what you said and discuss it with my doctor.
Please understand that getting better from an illness can be very slow. And getting better from an invisible disability might not happen at all. People with chronic illnesses have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out, if it ever happens.
I depend on you – people who are able-bodied – for many things.
If you liked this open letter, you might want to read one of the versions people have adapted for other illnesses, or other languages, take a look at the open letter options page.
You can also order a poster or print version of An Open Letter To Those Without Invisible Chronic Illness … from No Pity City.
An Open Letter To Those Without Invisible Disability Or Chronic Illness … by Ricky Buchanan is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 2.5 Australia License.
Based on a work at notdoneliving.net.
I had a bad stroke ten years back. I am still me inside this funny body. I walk a little funny, my hands are a little jiggly, my face doesn’t always show how I feel, but seems to have a mind of its own. I think kind of slow. It takes some time for me to respond, and I can’t always remember what I was going to say, sometimes my balance is off, so I appear a little drunk, but I have no such luxury, My feelings are all intact. I am not a dummy, I am not faking for my pension, I do not dribble my food to get attention. I am this way now. I have to accept it, and so do you, because neither of us can change it, can we!
thanks for posting this. It is very helpful.
Thanks for your letter. It really makes sense. People, Doctors, Admin personnel sometimes do not understand how a person feels. In reference to pain, my body turns off some of those pain indicators, you have good days and you have bad days. Just because you have a good day some say you are better, that is not the truth. You just had a good day and Doctors and admin personnel need to understand this, they cannot make a determination due to one day on the problems that are wrong with you.
I just want to know, how can an illness or disability be invisible? just out of curiousity, not saying there is none.
@Brandi: I suggest you read What is Invisible Disability? from the column Invisible Disabilities: An Extra Challenge.
Mental disabilities (bipolar, schizophrenia) and other things you can’t see.
something you can’t just LOOK at, such as a missing appendage, or something.
I will explain how a disability can be invisible. I have advanced degenerative disc disease ( my spine is deteriorating)Some days I can barely walk, other days I can walk just fine. I take well over 300 pain pills a month, and that just allows me to handle the pain, it does not make the pain go away.I have not slept in a bed for 4 yrs now and most nights I only get 2 to 4 hrs sleep, and Im usually up a couple of times during those hours. To look at me I appear a normal healthy woman, but, looks can be deceiving. So just because soomeone looks healthy, it doesnt mean that they are.
Ricky I don’t know how anyone can be around another for any length of time and no know they had an invisable illness. Maybe people don’t know what we call it, but they for sure know when others are not feeling up to par. I occasionally thing that many people are too self absorbed. If they would open themselves upto their surroundings and those around them, it is not hard to see. By the way I do love the articles you write. Well done indeed. Hugs, Billie
Lots of ways — rheumatoid arthritis, fibromyalgia, adrenal fatigue, migraines — these are all chronic conditions that debilitate people — some days %100 — but do not reveal themselves as a visible problem. These are basically the kinds of illnesses that were once chalked up to hypochondria or a psychosomatic condition, simply because the patients “looked” normal despite their complaints. Then there are things like diabetes or heart conditions which, while clear to a physician, remain undetectable to friends and family members who often think you can “get away with” indulging in a restricted activity just because you “look fine” today.
In fact, because of the lingering prevalence of the prejudices mentioned above (“it’s psychosomatic” or “you’re just a hypochondriac”); those with invisible, physical disabilities (like me) may wish to add this bullet point to the open letter:
“Please get this straight, my loved ones: The DEPRESSION I sometimes feel is the RESULT of being disabled not the CAUSE of it. You’d feel sad, too, if you couldn’t do most or any of the things you used to enjoy so much. More often than not, depression is a RATIONAL, reasonable, normal response to what is at times, an unbearably limiting situation. (Even Polly-anna gave up hope for a while when she stopped being able to run and play with the other kids — and she was almost super-human in her ability to look on the bright side.) So please DON’T say, ‘maybe you’re just depressed’ as if popping a few SSRI’s is going to make all my problems go away. (Besides, as far as I know, depression is as difficult to treat as anything else, so I’m sure if I WERE clinically depressed, I’d be equally offended by your use of the word ‘just’ to describe the condition.)”
You can not see or hear the pain I have , it’s like a loud voice trying to overtake my thoughts, hearing and perceptions, to you it looks as if nothing is wrong. If you see a sad face you may percieve I am sad but it might just be the voice of pain is loud and it’s an internal fight to pull my regular thoughts forward, or no I am not expressing and opinion about what you just said. pain is invisable to others a constant voice to others ….
Amen Melinda. People that do not have constant pain, just do not understand what those of us that do go through.
hi cindy your dead right no one understands what were going through when your in constant pain its like anything you have to go through it to understrand it chin up?
Hi, I have Syringomyelia. You can’t see what’s wrong with me by looking at me, or even hanging out with me. I am a mother os 3 and I have to take care of them but I have days that I hurt and I get tingling/numbness down my right side of my body. People just think that I make up my headaches cause one day I’m fine the next I can’t get out of bed. I have been called lazy many times from family and friends. I don’t think I’m a lazy person I think they just don’t understand my condition. I don’t even understand it fully.
*thank* you for this. a very good concise explanation of my life for the last 27 years with CFIDS (now being called ME/CFS).
Thanks so much for this. I’m going to pass the URL on to everyone I know. I’ve had RSD for 6 years. Even some of my family members still don’t “get it”. I pray this letter will help.
blessings,
Robyn
Thanks for that. Been trying to explain that to people for 12 of my 19 years now. =]
Thank you for posting this letter. Although I do not suffer from an invisible disability, my spouse on the other does. She was diagnosed with RA at the young age of 26 and in the eleven years since I have learned she is a much stronger person than I could be if in her shoes. Due to her refusal of not letting her condition keep her from leading a somewhat normal life she insists on working and doing day to day chores around the house regardless of how much pain she is in. There have been days she has came home from work almost in tears because a coworker told her there was nothing wrong with her or she was faking the pain she was suffering. Brandi, do some research on Rheumatoid Arthritis. It is a crippling disease that disfigures the joints and if not properly treated can lead to other complications such as Lupus. Even if properly treated the afflicted suffer from chronic pain.
I too have an invisible disability, this letter led me to tears as it so easily explains what I have been trying to tell everyone for a long time now. I thank you from the bottom of my heart. I am grateful to have a service dog to help me, still people ask “what does she do for you” sometimes I will tell people other times I can’t. I hope that this open letter will allow others like you and I and those who don’t have a chronic disease to understand. Thank you, thank you!
Many disablities are invisible. I have suffered from severe Psoriatic Arthritis, which is very similar to Rheumatoid Arthritis. since I was 16. There are days that I am fine (by my standards, which means yes I am in pain, but I can tolerate it) and there are days where I can’t get out of bed. This letter is very helpful. Thank you.
Thank you. I went from Unipolar depression. Then, to add aneurysms. Now, I just lift my shirt to complainers and let them figure out the scars, for two major operations. It is hard to believe in yourself, and being just another person. When those illnesses and problems come upon you. Aneurysms without surgery are life-threatening, and so is any surgery to repair the aorta. The next is full scale open heart with a heart lung machine, estimate minimum 12 hours. Thank you, again, for the letter.
Thank you for sharing this with the world. I have fibromyalgia and I am often regarded as just some whiny person. Some regard me as “lazy”, some as “does what she wants to when she wants to” and “an attention-seeker”. Yeah, this is the kind of attention I want. Please pity me. Please don’t understand me. Please think I’m full of s***. I’d almost rather have to be in a wheelchair. At least then people would believe that something is actually physically wrong with me and that I am not making it up.
Dear Ricky; I cannot tell you how much I admire you and all you do for us with disabilities. Mine is one you cannot see. My back somehow started when I was 29 and now am 68….now isn’t that a crock? Medicare put me as fully disables since 93 since that is as far back as the paperwork could be traced. I am home most of the time and when I do leave it is very exhausing. I had a neuro give me a million dollar diagnosis and tell me I would end up bed ridden. I am on my second website. The first MSN deleted after nearly 8 years and we didn’t skip a beat starting our .org. We are non profit, no ads and G rated and activists. I have run across a few of your articles and placed them on my site for people to read. The more we can inspire the more people will learn. Your copyright and TOU are on the artiles and am happy to have you check them out. Our site is open to view or join, whatever a person wants. Mainly we are trying to learn and to comfort others. Your words truly inspire me. If for any reason you decide I should not post your articles please let me know. I must say they are a great pleasure to read. You have such courage and I admire all you stand for and you. God Bless dear lady and keep working. You are doing so much good for us all. Your friend, Billie
I just “Stumbled” upon this page, and it couldn’t have been a better find. I have been struggling through Workers Compensation Hell for 16 years now, thanks to the great state of NY. If it wasn’t for the occasional use of a cane, you would never know I had any spinal injuries at all. The many pain pills I take on a daily basis help me to walk upright for the most part, and carry on a fairly decent life. As many have said on here, I also have good days, and bad. On the good days I try to fix my car, and help my wife do house work. On the bad days I am usually paying for the work I did on the good day. I will definatly keep this page bookmarked for all those who are not “in the know” about chronic pain.
Thanks,
Dennis S.
Thank you for posting this excellent letter. I wish my adult children had read this years ago when I first became ill.
I’m 76.I have struggled all my life.
In ’92 i had–have blood clots in my lungs.I am debilitated by lack of oxygen and after a quick attempt at anything physical I am breathless and panting.I can live almost normally if I do not attempt beyond that fine line.Then I am told how good i look.By now I am much overweight.I gave up on WComp–just not strong enough to fight more.I long to be in a wheelchair since I need to shop sometimes.,and i see others whizz past me while I stand and pant and feel so tired when I arrive at the store.I often go home quickly because I get too tired to stay with it..One friend said_”Just what are you doing with your life?”I was so appalled I figured out there was no time or place to tell her if she hadn’t figured me out yet.How pathetic is this!!
Thank you for this letter! I am disabled and have been for almost 6 yrs. P.T. gave up on me but I found someone who hasn’t and I have made alot of progress. I get so irritated, whether in the wheelchair or trying to walk, with people that feel the need to push thier way in front. (I might cause them to wait an extra 5 min.) As far as pain goes, nobody knows how extreme it gets. Thanks for a few minutes of knowing there is someone else who gets it!!!
This is really great! I sent it to some of my family members who could never understand my pain and overall just days when I couldn’t get around.
So many times people see me getting around so they assume that I’m having a great pain-free day, when like you said, I’m just having a day out…the pain never goes away, but I have to live!
This is so wonderful, thank you thank you!!!
Thank you for writing and posting this. I can’t often find the courage or the words to say these things to my family and friends, or if I do, I just end up getting all weepy.
I’m sure that this has made and will continue to make a difference in a lot of people’s lives.
Excellent letter. I would like to hear much more from you. I provide awareness about mental illness, addiction and homelessness in hopes of reducing stigma, discrimination and unwarranted fears through my writings.
I am also a network administrator for Bipolar Babe who also provides awareness about mental illness in which her main focus is our youth.
You didn’t have to come straight out and say it, I knew exactly what you were talking about. Thank-you…
I understand what you are saying about invisable disability.
I am sorry that I cannot recommend a cure. I will offer comfort for your soul. God is the key to everything in life.
Psalm 34:19 The righteous person faces many troubles, but the Lord comes to the rescue each time.
Only you know what you are facing and God does to even in your darkest hours.
This letter stands out and will catch the eye of many. It will be hard to forget. You have painted a very vivid picture for many who do not understand. There was no better way to do it other than writing about how you felt. I will keep you in my prayers and may God bless you!!
Thank you for eloquently sharing what I have been trying to express for years. Speaking for myself, I am not seeking pity and/or sympathy….just an understanding of what I must endure. Nobody will ever be able to live or understand the misery in my life, but prayerfully this will allow my friends to understand how I live with and combat it.
Please understand that living with this illness/disability and being confined most of the time, I feel and have become very isolated. I miss my friends and knowing about as well as being a part of their lives. I feel guilty at times because I am unable to visit and have lost a lot of friends because of this illness/disability. I cherish your visit, phone call or email more than you know even if it goes unanswered for several days. Please understand that I still need you in my life.
I too suffer from an invisible disability and can not work. Sometimes, I am trapped at home for extended periods of time. Daily, I must take extraordinary quantities of medication.
My friends must think me odd, because I seldom go out, and when I do, I always appear healthy and happy.
I experience many of the same reactions you do.
Thank you so muck for writing such a perfect letter! I have Polycythemia Vera and one moment I feel almost perfect and the next moment I want to collapse. People always tell me how good that I look and I do look pretty healthy when I look in the mirror. I wish they can feel how I feel for just a day and experience the rollercoaster that I ride!
Thank you. I am a disabled American Veteran. Even though I have h/c tags on my car, I get odd looks when I can walk away from my car. My h/c is not something who does not know me would see.
Also being a woman and on the young side, I get really odd looks. Like, why are you driving your Grand Dad’s car?
Mail me. I’m suffering similarly, but my primary physician is ignoring my plea’s and calling my symptoms ‘depression’. Of course I’m depressed, because I feel and look like this…for years now. MAIL ME IF THIS LEGIT, PLEASE.
Thank You, Thank You, Thank You…… This is me…. I was 28 when “it” all started for me, I am 38 yrs old now and feel so alone, so discriminated against…… I could go on and on, but I am VERY THANKFUL you put it into words for me!!!!!!
This is such an important letter. Thank you so much for sharing this! We need to come together, now more than ever, and get more help!
Here is a link to a commercial about DAY OF VISIBILITY, for our Invisible Diseases! http://www.youtube.com/watch?v=RU43ZVMhU_8
There is reason now for greater hope. We are close, my friends… We WILL find the help that we need… ***Sending Love to you all!!!!!
I love this article. I dearly wish everyone would read it, and take it to heart. I have multiple issues, and it’s hard to deal with people that don’t understand. It can come to the point where you are doubting yourself at every move.
Thank you, I had just gotten off the phone with my friend and neighbor.He was telling me to just set my mind to it and push on past it. I have chronic,severe RADS, among other things related to it. I can not be around any respiratory irritants or i get very ill, even if it isn’t immediately evident, sometimes its not, sometimes it is . He was suggesting I start a bbq catering business, like a mobile lunch wagon.How realistic of him. I get doubtful look and comments like there is nothing wrong with me fairly often, it hurts, a lot. I am having enough damn trouble adjusting , I was not diagnosed when I was injured, I ws told me chemical pneumonitis was all cleared up and kicked out the door.I then spent several years constantly seeing doctors who guessed I had various ,more usual things, even though I disclosed the sulfuric acid exposure.I did try to just keep on keeping on and worked sick for a lot of those years, constantly sick. I have nearly died a few times from it, finally was able to get the tests and stuff need to find out what was wrong with me, no thanks to wc,whom pretty much told me I was nuts when i tried to reopen at first.
Anyway, I have found even medical professionals ignoring invisible chronic illness, or not listening to the obvious at the very least.So I don’t know why it surprises me that laymen are more denying of it.Thing is many of these same people have known me for years and saw me sick all the time when I was working. They know I worked long hard hours, and then worked on things at home hard too. It is worse even that knowing I will probably die very unpleasantly from some complications of my illness one day. Thank you for this letter.
…And my friend and neighbor I mentioned is a Vietnam vet who has disabilities, but his aren’t effected by environment.So while I understand his perspective, I know he doesn’t mine. I am sensitive to apparently almost anything now,in the air.Most of the things no one else even notices.
i just wanted to say wow..i used to do home care until i broke my ankle and could not walk for about 3 months which sucked.but before i did that i took care of a wonderful lady who had one leg and was a bad diabetic as well as she had the starts of dementia…but she was great..and hated it when people would treat her like she was a child..she knew her limets and she did apreciate the help she got…thats what i was there for after all but she hated when people would talk down to her for being in a wheel chair..i also am very good freinds with a paranoid schizophrnic and i have seen how people would react to him before he was diagnosed and it was not fair…they were scared of him..he is a sweet very talanted artist who would not hurt anybody..even his delusions were non violent ending with him usually hideing until one of us would talk him out and take him home..he is on meds now and is doing much better but he still struggles with labels people put on him..they hear he is schizoprhnic and they think any minute he will wig out and hurt somebody..i personally have let him baby sit for me and i trust him but mental illnesses or physical disibilties do not mean the person is not worth talking to..some of the nicest people i have met in the course of my job and personal life are all lovely.