So some backstory… at a young age I had problems walking and playing like normal kids. My kindergarten teacher pointed it out to my parents and they proceeded to take me to a bunch of doctors. I ended up needing leg braces and a back brace for a few years, eventually only needing them at night when I was around 11. Stopped wearing at night around 16.

Where the trouble came in is my parents correctly told me to stretch and stay active, which I did. When they referred to my infliction, they always called it my neuropathy. So in my mind I had neuropathy, and if I stretched and exercised I’d be good to go.

Now I always had muscle spasms but in college they started getting worse. Like a handful of times I was vomiting from the pain and needed to go to the hospital. I had to stop running for exercise because of stress fractures in my ankles. My parents were made aware of all of this. I started getting paranoid and anxious because I knew something was wrong, but looking back I had some real mental issues where I felt like I couldn’t go to anyone for help. A little into my first year working in industry and I’m having some back spasms, and after telling my mom she sends me a short text telling telling me I have Charcot Marie Toothe (CMT).

It turns out CMT is this disease where my peripheral nerves slowly degenerate, which causes the aforementioned neuropathy. It also causes my muscles to atrophy. There’s a good chance I’ll need assistance walking and I’m slowly losing more things that I enjoy doing (golf, softball, etc). Now I’m sure my childhood doctors mentioned CMT but during my older teenage years I was probably going to a doctor once a year tops and we always referred to it as my neuropathy at home, so I never realized that I had this disease. And to be honest my parents never made a big fuss over it, so I didn’t think it was a big deal. But if they had told me, there were a lot of things I could have done differently to maintain my body and mobility better.

I love my parents, but there’s a big feeling of betrayal here since they knew about the disease but seemingly did the barest of minimum to help me with it. I don’t know why they waited so long to tell me with just a text. Like it’s just an uncomfortable conversation they didn’t feel like having. Once a year or so my mom will ask how my feet are doing…. that’s about the extent we discuss it.

It took a couple of years to process all of this and now I’m see neurologists and specialist for the CMT as well as a therapist since the way things transpired has just really fucked with my head. My symptoms are getting worse and I’m terrified that because my own parents seemed uncomfortable talking about it that everyone I know will react the same way. The disease is progressive but extremely variable patient to patient.

The only person I’ve shared the parent stuff with was my therapist, honestly it would be a little comforting just to hear from a couple strangers that how they handled it was a little messed up. She agrees it’s a pretty big betrayal but I’m also paying for her so there’s still this part of me that thinks I’m making too big a deal about this. But I think these feelings are because my parents always brushed my inflictions aside as not being a huge deal. Not being told you are basically destined to lose your mobility in adulthood is a big deal right? This is truly an off my chest post because I’m too scared to talk about it with anyone I know. Thanks for reading this if you made it this far.