Meet, FMS Disability Advocate, Don Powell: Part 1
Family...virtually none of them understand. None of them live within 6 hours of me. I was never that close emotionally to any of them anyway but this has made the emotional and the physical distance seem equal. I have about 4 cousins, all female, with Fibro and none are disabled by it which doesn't help.
MY immediate family...my wife is great but I can't give her the things I want to...she has to shoulder all the burdens of supporting the family. The kids are teenage boys who are becoming more and more self- centered.
Overall...Fibro has taken almost everything I had except the woman in my life. Without her there is no way I could keep going.
What do you find to be the most challenging aspect of being a disabled person with fibromyalgia?
The most challenging part of being a disabled person with Fibromyalgia or any of the myriad number of "Invisible Disabilities" is having to constantly deal with, "But you don't look sick!" This is closely followed by the equally infuriating, "How are you feeling today?" Even within the disabled community, we are discriminated against. We are rarely included in discussions unless one of us happens to be present. We are "those other people" even though we are the majority...we are the true silent majority. We don't organize and we don't fight for our rights.
What are some of the public perceptions, regarding fibromyalgia, that you are fighting to change?
The number one public perception we need to fight is that we are just lazy people who complain a lot. Even our doctors seem to feel this way. A close second is the perception that in order to be disabled you have to be in a wheelchair or on crutches. People see us as nothing but chronic complainers who look fine and must be okay since we can walk and don't need a wheelchair. They don't realize the number of things wrong with us or that being in a wheelchair doesn't always mean you have pain.
As a disabled person with fibromyalgia, what are your worst fears? What are your hopes for the future?
As a disabled person with Fibromyalgia, my worst fear is not being taken seriously. The,"But you don't look sick," comments even from others in the disability community. Having an "invisible disability" means having to answer questions all the time and it gets disturbing after a while. One could say it is an opportunity to enlighten others but
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