What Is It Like Living With A Hidden Disability?

Patient Roundtable

Ellen: It is hard -- and I've always had to back down stairs. So I'll get in the subway, and I'm backing down the stairs. Well, of course, a train comes in, and all these kids are pounding up behind me, mumbling nasty swears at me, you know -- seeing this lady, and I always say: "You know, I have challenged knees" ... whatever. So it is an educational process. And I think the more of us act real, and yet not act like victims, then the better for everybody to know that there are people out there that are in pain.

Mike: I do not want sympathy. We want empathy, just understanding. Fairness and understanding -- we don't want sympathy.

Judi: And whatever accomodations that we need, and that's the whole- that's the whole basis of disability law, in the Americans with Disabilities Act, is -- you're entitled to the accomodations that help you.

Ellen: That's true, but still we're in a bind in that -- gee, you look good. I mean, I think you all look good. And so that's another thing we have to factor in there, that -- how should somebody else understand it?

Cindy: You know, and we should talk up when we see that there's something that we want to do that we can't do because of the pain. I mean, I remember I wanted to see an exhibit at a museum and there was a huge line, and if I would have waited in that line, I would have used up my whole time to be up. So I went to the guy in the front of the line and I explained to the guard that I had chronic pain. He wanted to see some evidence, so I brought my American Chronic Pain Association card; I had it with me. And I showed it to him, and he let me in. And I would never have been able to see that exhibit if I hadn't tried it.

Ellen: It's hard though, because you don't want to be different then, and it's very hard to get over that hump -- that we are much more than our pain, but our pain is part of where we're ... from.

Next: How Did You Find A Good Doctor For Chronic Pain?

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