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Diagnosed in my early teens, I spent a lot of time and energy struggling with the obscurity of FA. Often I would lie when asked by others that I didn’t know very well, passing as disabled in an accident or as having MS, anything to avoid the interaction ritual of explaining FA.
I was recently asked to participate in a FARA fundraiser in Annapolis this April, and while I don’t think that being a visible proponent for a cure is helpful to people with disabilities in general (but that’s another topic), I can get behind raising awareness.
How do you explain FA to people who don’t know what it is?
Or, to widen the scope of the question a bit, to what degree are we responsible for telling the story of our bodies?
Most people and family don’t know what I have wrong with my health. Usually I can explain to them what FA is and of course they get surprised and want to know if there’s a cure. For me I do let family and friends what’s wrong with me when they don’t ask themselves. I don’t get why some people don’t ask when they clearly want to know.
Part of me gets so aggravated when they don’t ask when people are obviously curious, but part of me understands that they don’t want to bring it up in case it insults or hurts me. What I normally do if I can tell people are curious is to bring up FA first, so they know it’s okay to talk about.
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