National Invisible Chronic Illness Awareness Week - Why We Need It!
"But you don't look sick." It's something those of us with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) hear all too often. Yeah, well, you can't judge a book by its cover, can you?
We should be glad that we don't look as horrid as we often feel. I'm picturing a lot of shambling, shuffling, drooped heads, vacant eyes. Possibly some drooling. Basically, we'd be horror-movie zombies with better clothes. Sometimes, though, it's nice to have people know how I feel just by looking at me.
When I worked full time (and then some) as a TV news producer, one of my anchors got really good at reading the signs. He'd take one look at me and know whether he needed to jump in and help, proofread scripts more carefully, and watch for clues that I was overwhelmed. I'm not sure what it was - maybe a look in my eyes, or the slump of my shoulders - but it was often a comfort to know that it showed. He'd worked closely with me for 2 years before FMS, though, and was especially perceptive.
When I go to the grocery store, however, I can't expect people to get it. Even if the signs are there, those people 1-don't know what I look like when I feel good, and 2-probably wouldn't take the time to notice anyway. I sometimes have a hard time walking, or just having the energy to get through the store, yet I hesitate before taking a wheelchair. I've considered getting a handicapped plate for my car, but I don't want to endure the looks I know a lot of people get.
What we need is for people to shed the popular concept of "handicapped." The icon on the parking space shows a wheelchair, so that's what people think those spots are for. No one questions whether an elderly person with oxygen should use a motorized chair at the store, but they don't think that I should - after all, I'm a 38-year-old mother of young children with no outwardly signs of illness. If only they could see the sometimes crippling pain in my back, the stabbing abdominal pains I'll get later if I expend too much energy at the store, and the intense fatigue that will lay me out on the couch for 3 days, they might understand that yes, today I really do need to sit down while I shop for my family!
That's why National Invisible Chronic Illness Awareness Week is important. We need people to understand that all disability doesn't come with mobility aids or medical apparatus. Most of us who are disabled, impaired or limited by our health have invisible illnesses. We shouldn't suffer more because some people just don't get it.
National Invisible Chronic Illness Awareness Week starts Sept. 8. Check back here for the next week and a half to learn more about it!
Suggested Reading:
- What's Going On? A Simple Explanation of Fibromyalgia
- What's the Difference? Chronic Fatigue vs. Chronic Fatigue Syndrome
- Awareness is More Than Just a Day! Simple Ways You Can Help
Comments
You wrote: “What we need is for people to shed the popular concept of “handicapped.” The icon on the parking space shows a wheelchair, so that’s what people think those spots are for.” This is so true, it ought to be funny! But it’s hard to laugh when you get those looks, or, worse, verbal abuse and insults from busybodies.
We always check whether cars in disabled parking spots have their “Disabled” sticker. If not, we will try to talk to the people parking there to explain tat their lack of consideration is hurting other people needlessly. But not everyone is receptive.
I don’t know whether we’ll have a national week for invisible illnesses her in Australia, but it’s a darned good idea. All 3 of us at home have significant pain and limitations caused by our respective disabilities, and sometimes it takes up to a week before one of us is feeling well enough to visit the supermarket. If it weren’t for the disabled parking spots, we probably couldn’t ever go grocery shopping - even on a good day.