what it’s really like living with CMT and why I used to be so ashamed of it
If I could sum it up in just a few words? I’m always tired.
Not like end of the day when you just want to go to bed tired. But like my muscles are going to give out any second tired. Or I can’t even find the strength to brush my teeth tired.
It’s also a lot of little things that the world never sees.
stop asking what’s wrong with me
You feel it coming before they even open their mouth.
A stranger spots you in the produce aisle.
They're doing that thing where they're pretending not to stare while absolutely staring.
Your spidey sense is tingling.
They move closer and you just hope they’re going to ask you what time it is, or if you know where the avocados are.
“What’s wrong with you?”
Annnnnd there it is.
That question.
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.
It’s not our job to make non-disabled people comfortable
So, I made the reel. And then I got a comment from some guy — actually, multiple comments.
Clearly, what I had to say really upset him.
He told me that I was overreacting. That people can’t help where their eyes go. That I should have used humour to put her at ease — that it was my job to help her feel more comfortable with my disability.
Read that again.
He was literally telling me that when someone stares at me for the way I walk, I should be the one to help them feel better about it.
what to do when the future feels uncertain
Living with a progressive disease like Charcot-Marie-Tooth disease (CMT) 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.