I was diagnosed with Friedreich’s Ataxia at the age of 44, after experiencing symptoms for a couple of years. I am now 47.
I’ve always been very close to my family.
Weirdly, I don’t want my family or friends to see me at my worst!
My psychotherapist told me that I am quite happy to share a nice photo, but I do not want people to see the reality of me struggling to walk or holding on to things for support. She also said it is quite normal that I care more about people who are close to me seeing me having difficulty. I don’t care as much about strangers.
I know my family and friends are the least likely to judge, but it is a strange dichotomy—caring more about those who are least likely to judge, because they know you as a person and remember how physically capable you were before FA.
I think being self-confident and self-conscious are two very different things. I think I have always been fairly self-confident as a person, but I have also always been self-conscious—even before FA. Which is why I find it quite difficult when people look at me and assume I am drunk, etc.
The good thing is I can now talk openly to my family and friends about it. We can even have a laugh and, for a moment, forget about it.
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