Diane Shipley writes about her experiences revealing herself as as an ill person in a well person’s world...
I'm Coming Out
My name is Diane Shipley and I have M.E.
Doesn't look that hard to say, does it? And it isn’t, technically. (Myalgic Encephalomyelitis, the term it abbreviates, doesn't exactly trip off the tongue but I can say that easily enough after eight years, too.)
But telling the world you're ill isn't easy. Partly it's because M.E has been maligned and stigmatised for so long; called everything from yuppie flu to "malinger's ennui" (thanks so much Julie Burchill for bringing that one to the public's attention!) Partly it’s because it’s kind of embarrassing to have been ill for closing in on a decade; and with an illness that has no visible outward signs (apart from looking gormless, but I always did that anyway). And of course the other term for M.E, Chronic Fatigue Syndrome (ugh!) hasn’t helped my PR, either - making it sound like sufferers are just a bit tired when at worst the disease leaves people bed-bound, unable to move, tolerate light or even swallow.
I cringe when I meet new people who only ever, it seems, want to ask me what I do. Now I do a tiny amount of work I can deflect the question but previously I had to fess up to having had M.E for several years ("I’ve been a bit unwell…") and to doing absolutely nothing. Even if people were perfectly kind and didn’t suddenly turn patronising (“Ooh, poor you!”) or intrusive (“Let me ask you three zillion highly personal questions!”) I couldn’t help feeling a bit ashamed because I don’t want to be like this. I like people believing I’m ‘normal.’ I want it to be true. And when my achievements are measured against people who’ve never struggled with their health, they look frankly pitiable. Thank goodness that’s not how I normally assess myself.
When I tell people “the awful truth” it feels almost cruel to shatter their illusions- we’re chatting, they have me pegged as a perfectly healthy person and then - boom! - I spoil everything with three little words (no, not “I love you,” – “I have M.E,” pay attention!) I even read an article by a gay man with M.E who said “coming out” as ill was far harder than coming out of the closet.
My one consolation is that other people’s problems may not come up in conversation quite as much as my bad health seems to, but everyone has their issues. Some of them might even be far, far more disturbing than mine. At least I known what my problem is:
My name is Diane Shipley, and I have M.E.
I’ll be writing more about my experiences as an ill person in a well person’s world each week. Next week: if you think diagnosis is a simple business, think again…
Diane co-edits Shiny Media’s fabulous women’s fiction blog, Trashionista and contributes to TV Scoop and Catwalk Queen, as well as writing a personal blog, What Do You Do?
