and other thoughts on living in a body that has never quite fit the mold
Why I don’t like most online support groups
I find a lot of online support groups draining as hell.
As someone who’s always been the only disabled person in the room, and who doesn’t have a huge support system, I’ve always been searching for some sense of community.
And when you have a rare disease like CMT, that usually means finding whatever free, open-to-everyone support group that exists on the internet. And while it’s a huge pro that spaces like these do exist, there are also some real cons.
what to do when the future feels uncertain
Living with a progressive disease means living with uncertainty.
I don’t know exactly when things will get harder or how much my body will change. I just know that it will.
This is the part of having a progressive disease that people don’t talk about enough.
Not just the physical changes, but knowing your future isn’t in your control.