What's the Hardest Part of Having an Invisible Illness?
We've all had our run-ins with people who don't think we're sick or disabled because we're not in a wheelchair or obviously injured. National Invisible Chronic Illness Awareness Week, which starts Sept. 8, is aimed at getting more people to understand that disability isn't always obvious.
Awareness Week includes seminars (that you can listen to even if you're not attending), items for sale, educational materials, an Internet-wide blog push, and hopefully a lot of publicity. To learn more, you can visit the official website:
One way we can get people to better understand is by sharing our stories. I'd love to hear what encounters you've had with people who just don't get it. Please leave your comments here, where they can help raise awareness and also help us all feel like we're not alone in the problems we face!
Suggested Reading:
Comments
It is disturbing and off putting when people make those comments but I chalk it up to just not knowing and understanding (ignorance). I’ve been ill most of my life with multiple dx and have constantly run into the comment “well you don’t look sick” or “well you look great” and my immediate thought is well should I sit and wince and moan and groan and mope around to make YOU feel better about it? No that would solve nothing and just make everyone around us feel bad and that’s not our intention … we just want understanding. I’m sure everyone has that friend or relative that’s a chronic complainer who finds the negative in everything … and really how miserable is it to be around a person(ality)that does that? It’s no fun, and I for one have never tried to make others feel my pain but at the same time I want others to know and understand what I’m going through too. I’ve always put on a happy face or at least try to and those closest to me can read my face like a book so like the article says it really is about perception and how much people observe and pay attention to those around them. But no one should judge and that’s discouraging part. We’re not asking for anything more than that.
I can handle the stupid comments that people make, the “you don’t look sick” ect. But the one thing that is worse is when you get a Dr. that tells you it is in your head! I dR.’D for years before my fibro. Dx. I was starting to believe them that I was crazy. I think that the medical field needs to be better educated also!
my kids think its all in my head too. it was years before i found out what was wrong. at least now i know. i do push myself sometimes too much. i am 61 and i still think i can do things i did when i was younger. but it keeps me going. i try to explain to people how it is but they look at you like huh!
I’ve been living with fibro for 15 years now. I go through all the ups and downs, physically, spiritually, and emotionally each day. I’m still working full time and will as long as I can. Some days I can’t do much and other days I can more. There’s no reason why I can or can’t do things. It just is what it is. It’s Fibromyalgia. I applied 2 times in the last 15 years for a handicapped car sticker. I live in Montreal, Quebec. I was refused both times. Fibro has changed my entire life. I’m a whole different person and I live my life differently since I got fibro. Honestly It does get me down at times and I just have to pick myself up and go on, one minute at a time. I have learned not to pay attention to the ingnorant people in the world who don’t understand what it’s like living with fibro. I can’t change them. They will have to change themselves and until they change I just won’t allow that ignorance around me. It really does help me to read all your comments on the blogs. I don’t feel so alone. Thank you all.
I’ve had a diagnosis of fibro for 21 years but the symptoms go back 44 years. I’m 65 years old now & really do not care what people think. I’ve had a disability car sticker for several years & don’t hesitate to use it. I must admitt that there are times when I feel the need to limp but I carry on. To Rho, I live in Ontario. My application for the car sticker stated that I required it “at times”. Good luck.
To Sandi K. I am going to try for the handicapped sticker again with your suggestion that I require it at times. Thanks Sandi.
Sandi K and Rho,
I live in the US and I had no trouble at all getting a handicape sticker. I had my doctor sign my application. I he had not, I would have gone to a different doctor. I don’t need it all the time but when I do I use it. I don’t apologise to anyone if they question me. I appear to be fine when I park my car in a handicape area. I may not need it then but later, when I am returning and in pain from the exertion. No-one but you walks in your shoes. Only you can gage the degree of pain you are in. I always try to hold my head high, and when I walk I try not to limp. What’s wrong with that? I still need that handicape sticker, and I am thankful for it. I may look fine to outer appearances. What people do not see is the days, sometimes weeks when I barely am able to leave my house or the great effort it sometimes takes to push myself out and about.
I have been told that fibromyalgia is considered a permanent disability in the USA and in Canada except for Quebec. Isn’t that just awful! I am not going to give up trying to get a handicapped sticker for my car because as you all know, there are some days when I just don’t have the energy to walk the parking lot after walking the isles of the grocery stores. (I picked up an application at the CLSC today) When I see my dr. I’ll have him fill it out and I’m going to include a letter with a detailed explanation of what it’s like to shop with fibro. I’m new to the blogs and I love them. Thanks everybody.
The hardest part of having an invisible illness is how terribly depressed I get at not being able to do simple things that others take for granted. It’s an illness that tends to make me feel alone with myself…because those who don’t know me well aren’t aware that i’m suffering; those who do know me well realize I suffer, but still do not understand the illness. I tend to exist in my own little space; smiling and doing my best to act like others do because it’s easier than having to explain why I can or can’t do something.
I am ill with chronic fatigue as well as trauma from people trying to “force me to be normal,” and even my family and their friends treat me like an inferior, a slacker, a deadbeat etc. I know they are ignorant, but they still make my life miserable– and I’ve just decided to stop talking to most people, because there’s just no way I can be equal to them in terms of status, and I’ve just had it with trying; and I’m tired of either hiding my condition, or having to explain it and feel self-conscious or inferior etc., or have them treat me like I’m retarded etc.
Even my nephews and nieces and newphews ask questions like “why don’t you work and have your own house?” etc.