Chronic Health Conditions Discussion and Support

And I'm sure it's pretty cool to know someone who is an Olympic athlete.

But that person? That person isn't me. And you don't have first hand experience with me, or with my genetic disorder. The physical sequalae of my genetic mutation affect me profoundly, whether I "let" them or not. I've been assured, repeatedly, that they are not repairable. Some are controllable to some degree; others less so, and a few get to have free rein despite all attempts to make them behave better.

As I said, I'm sure you mean well. But in my experience, being told "it's all about attitude" or "it's your choice how it affects you" is dismissive of the realities of having a disabling condition. And being told "I know someone who also has x and they're doing GREAT" is not encouraging, or supportive -- rather, it implies that the ill/disabled person could be doing GREAT too, if they'd just do it RIGHT.

All of us are different. I'm glad your friend's daughter is doing so well. When I was young, I was an athlete too, though not of Olympic caliber, of course. But that hasn't kept my body from slowly falling apart as I age, as the faulty collagen gets older and weaker -- that seems to be my path to walk (or roll, as the case may be). I hope your friend's daughter is gifted with a different path, one that lets her stay well and able.

Thank you for taking the time to write, and to read this response too. All the best to you and yours,
DLO