As part of National Invisible Chronic Illness Awareness Week last week, bloggers were encouraged to respond to 30 prompts about their illness. I started to respond and was quickly overwhelmed. The prompt “If I had to choose between an invisible illness or visible I would choose. . . .” has lodged itself in my mind and I’m pretty sure it will nag at me until I write about it.
Here’s the thing. Feeling like crap and not having anyone else aware of it stinks. Sometimes I want to scream, “Don’t you know I feel horrendous? Leave me alone!” However, I would not trade the possibility for anonymity that having an invisible illness affords. I like that disclosing my illness is my choice. It provides me an inkling of control and I don’t have to deal with people staring at me (except for when Hart has to practically carry me out of a movie or concert and I know people are marveling at how drunk I must be).
Honestly, the problem with migraine is not that no one can see it, but that few people believe it is a serious illness. I think this is the real crux of the issue. After all, cystic fibrosis, epilepsy, cancer and MS can all be invisible, but it seems rare that someone would doubt that people with these diseases endure genuine and significant hardship. Would people believe that migraine, fibromyalgia and myalgic encephalomyelitis (chronic fatigue syndrome) are disabling for some people if we were all in wheelchairs? If medical tests actually showed that something was “wrong”? Does a disease have to carry with it a risk of death or at least a dramatic physical event (like a seizure) for well people to take it seriously? What will it take for people to believe our suffering is real?
Maybe I’m missing something here — what do you think? Is invisibility really the issue or is the underlying problem that no one believes a disease they can’t see or test for?