what it’s really like living with CMT and why I used to be so ashamed of it

I spent thirty years pretending I didn't have Charcot-Marie-Tooth disease.

Not because I was in denial, but because admitting I had CMT meant admitting that I was different.

What is CMT?

Look, I’ve had CMT my entire life and I’m still terrible at explaining it, but here’s the cliff notes version:

The peripheral nerves, so the nerves in the areas that you consciously control like your hands, arms, legs, feet, etc., become damaged due to changes in your DNA. When those nerves are damaged, they suck at sending signals to the brain that control movement and sensation.

This leads to things like muscle atrophy and weakness, lack of balance, numbness, poor motor skills and coordination, etc., etc.

CMT is hereditary, which means that it typically passes from parent to child. But in some cases, it can result from a spontaneous mutation. Which is what happened with me.

As far as we know (and as good as genetic testing was in the mid-90’s) I’m the only one in my family with it.

So, lucky me, I guess?

That’s the (sort of) scientific explanation anyways. But that’s not really what’s important, is it? Because anyone can Google a definition.

The more important question is, what is living with CMT actually like?

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.

I can’t carry my tea from the coffee shop counter to my table without a lid.

I plan my walking route to make sure there is a place for me to sit down halfway.

I Google every new restaurant just to make sure there isn’t a sneaky step without a railing inside.

If I’m at a store by myself and the thing I want is on the bottom shelf, I can’t bend down and get it. So, I better hope there is a kind stranger nearby to help!

Last weekend my husband and I were building a piece of furniture and my lack of motor skills meant I couldn’t put in any of the screws.

I skip cute and trendy bags and stick with crossbody bags, so my hands are free to help keep my balance.

Same with shoes; I have to choose supportive and comfortable ones even if they don’t go with the outfit.

But let’s go back a few years to when I was a kid, because to understand where the shame came from, you need to understand where I came from.

Growing up, I never knew anyone else with CMT, I thought it was just me who had it. I mean, not literally. But the way I was treated as a kid, you’d think I was. So of course, I thought something was wrong with just me.

Like many of us who were diagnosed with CMT as kids, the doctor’s office wasn’t a pleasant place.

I still have visceral memories of all the tests my doctors put me through.

And I’ll never forget how those doctors made feel so…demeaned. Like they had never seen a disabled child before. Like I had done something wrong and that something was wrong with me. It’s a hard feeling to explain to someone who’s never been through it.

And then I was bullied in school. Again, most of us who were diagnosed with CMT as kids were.

At home, my CMT felt like a taboo topic. Like if I ever brought it up, the subject would change pretty quickly.

So, I learned to hide my CMT and try to pass as “normal.” It was just easier to hide the parts of me that made people uncomfortable and treat me differently.

What changed?

I wish I could give an eloquent, helpful answer here. But honestly, I got tired of pretending.

And maybe it's something about being in your 30s and not giving a f*** about what anyone thinks of you anymore.

I still have CMT. I'm still always tired. I still can't carry drinks without lids or bend down to reach bottom shelves. I still plan my life around my body's limitations.

I just care a lot less about what people think of me now.

And while it’s hard to undo thirty years of shame, it’s no longer all-consuming like it once was.

If you're reading this and you have CMT and relate to any of this, you're so not alone.

I know what it’s like to be judged because you don’t move the way people expect. To be pitied by strangers. To be laughed at because they think you’re drunk. To have friends smile to your face and then make fun of you behind your back. To know what it’s like when family never quite sees you as a full person. To pretend you don’t care about going to that event. To hide yourself so everyone else can stay comfortable.

And if any part of this sounds like you, take this as your sign to stop being ashamed of who you are.

I spent thirty years being ashamed of having CMT. Now I'm only ashamed it took me so long to stop hiding it.