Humiliation is almost worse than disease

http://www.signonsandiego.com/uniontrib/20071202/news_1m2braun.html

The woman in the article doesn't have CFS, but faces the same public opinion obstacles we do, of people assuming the worst.

"She can do everything but run, walk down stairs without using the handrail, and withstand the harsh glances and hurtful remarks of strangers.

“What I can't deal with, in what may be my final days walking, is having to worry every minute about being humiliated, because it's happened so many times,” she told me. “I need something to make me feel OK about being in public. It's really not going so well.” "

“People have been violent with me, mainly women,” she said. “There's just a lot of hostility.”

On other occasions, his mother said, Zach has told her accusers: “You don't know my mom; she has a disease”; and “You don't know what you're talking about, lady.”

"But that mindset, Rose said, has her afraid to leave home many days. Friends have suggested she get an assistance dog, or a wheelchair, to alert strangers to her disability.

“I'm not going to throw myself into a wheelchair to make everybody else happy and comfortable,” she said. “What do I do? Do I wear a T-shirt that says: I'm not drunk? A tattoo on my forehead? Do I get a megaphone and go into a store and say, 'Hey, everybody, before you judge me, I just want you to know . . . ' ? ”

As I predicted, I had no good advice for her. It's easy to tell someone not to care about what other people think. But just try doing it yourself some time."

* * *

Like Ms. Rose, I know there's probably a wheelchair in my future, but I'm in no hurry to rush that date just to prove to people that I'm disabled.  So, I deal with the assumptions that when I say "I can't", it means that I'm lazy or manipulative or just want something for nothing; assumptions that probably wouldn't be made if I were in a chair.  For me, it's a matter of pride to stay upright as long as possible; if I were lazy or manipulative, I'd've opted for a wheelchair (and instant sympathy it creates) long ago instead of struggling.

Instead of patients having to pretend they don't care what strangers think, maybe strangers should stop assuming the worst.  Ask politely WHY I can't; the answer may surprise you.  You might come away with a whole new respect for how much I can do against the odds, insted of berating me for not being able to do more.

It was never my goal to be SuperCrip.  I didn't run marathons before, I'm not going to do it now just to prove that disabled people can do anything.  Because the fact is, some of us can't do that stuff without putting our life (or at least our independence) on the line.  I know CFS patients who became bedridden after exercising; I don't intend to be one of them.  I much prefer living on my own (even if the house is a little messy) than being in a nursing home having to eat what they tell me, when they tell me, dependent on other people for a lot more than I am now.