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How do you explain FA to people who don’t know?
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?
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