As I’m sure I’ve said before, I find it a terrific bore to talk about my condition as a pathology. I think this is partly due to my particular label, partly due to the fact that illness becomes an extraordinarily boring subject to those of us with it, at least after the initial wow, my body is complicated! phase (during which we may go into some detail without invitation, subject complete strangers to Powerpoint presentations and consider taking a degree in medicine in order to better understand ourselves and formulate a cure). However, why lay people you hardly know would be interested, I don't know.
Bint describes how in the American South, she doesn't feel uncomfortable about people asking, because folks there talk about anything. I found this interesting; Bint has cancer, which I guess everyone has heard of and understands the idea of. I imagine there are some uniquely troublesome reactions (my own Gran won't even say "the C word" out loud (or indeed the word cancer, he he)). But I wonder whether I would feel differently if I had a different label. As it is, for me, such conversations almost inevitably lead to
- Confusion about medical labels. “Isn’t that what Stephen Hawking has?” Uh no. There are many long words and acronyms in medicine, Stephen Hawking only has a small handful.
- Misplaced empathy. “Oh, I think I have a bit of that; I have all sorts of aches and pains and I’m tired all the time.” or "I know how you feel; I had a cold last month and I didn't feel like leaving the house for days."
- Overblown sympathy. "Oh my! That must be awful for you. I can't imagine how you cope. If I had that/ had to use a wheelchair/ couldn't go clubbing at the weeknd, I would kill myself!"
- An anecdote about someone they knew/ read about in the paper/ just invented who had this condition and died horribly/ never needed a wheelchair, in fact ran several marathons/ recovered completely through the power of North Tibetan Flatulence Therapy. Often this is combined with further confusion about medical labels.
I’m not very good at telling people that it’s none of their business. In fact, I have never done that. Fortunately people do tend to ask the wrong questions. Questions such as
“So what’s wrong with you?” which is really asking for it, frankly.
“Well since you ask, I guess I’m a bit of a perfectionist, and I think sometimes people are intimidated by my intelligence and good looks. So, what’s wrong with you?”
Otherwise it is “So why are you in a wheelchair?” After all, nobody ever asks when I’m not using the wheelchair; when I behave differently people assume I have a temporary illness, ladies’ troubles or else am an eccentric.
This is met with the polite and perfectly accurate, “I have a lot of pain my legs which means I cannot walk very far.”
This is sometimes followed up by “Why is that?”
Which, in turn, is met with the polite and perfectly accurate, “Because my muscles don’t metabolise oxygen properly, which results in excessive lactic acid production.”
This is almost always where it ends. Most people either read that I’m not going to give, assume my condition is rare and complicated or else feel that it might get very technical if they question it any further.
While I'm here, anyone seriously interested in the study of social disability may be interested in reading this paper about the hierarchy of impairments that exists in the minds of both disabled and non-disabled people - something I have written about before and read about elsewhere, but only really seen it touched on in a rather vague and anecdotal manner in academic writing.