Having Those Awkward Conversations About CMT

“I like your shirt.”

I didn’t expect to hear such a comment while wearing my Charcot-Marie-Tooth Association (CMTA) T-shirt.

It happened twice in the past two months, and when I turned around I didn’t find a fellow CMTer, a CMTA member, or someone affected by Charcot-Marie-Tooth in a more tangential way.

The first time was in a bagel shop. A young girl stood there, pointing to the second word on my shirt. “My name’s Marie,” she said, smiling.

The second person to mention my shirt also was named Marie.

I recognized the opportunity to spread awareness about CMT in those moments. Raising awareness is one of the reasons the CMTA has shirts like the one I was wearing. But I felt weird. I didn’t want to be a buzzkill.

What would I say to a little girl appreciating seeing her name on a stranger’s T-shirt?

“Oh, did you know that you share part of your name with a famous physician? Pierre Marie? See, he, along with two other doctors named Jean-Baptiste Charcot and Howard Henry Tooth, studied a disease that now bears their names. Three different people had their names smooshed together. Funny name, right? But it’s a serious disease.”

That would be awkward, like some of my past attempts to talk about CMT. 

I remember explaining CMT to a friend and his girlfriend when I was in college. We were lounging in his dorm room, and my feet and gait came up in a conversation about sports. After my quick explanation of CMT, I saw their confusion about how to respond. 

“I’m sorry?” they offered. An awkward silence followed. I didn’t want pity. But to be fair, I don’t know the proper response, either. 

I think this hits upon something that CMTers and folks in the disability community experience often: the desire not to disrupt the lives of others with your disability.

Maybe this feeds my fear of using my handicap parking permit. And perhaps it is why CMTers sometimes feel the urge to “perform” when using disability services. 

It’s easy to have second thoughts. Should I try to act more disabled when taking advantage of a handicapped parking spot even though I have a permit? What about when asking to board early for a plane? When using an accessible toilet?

We don’t want to rock the boat.

I remember writing a column a few months ago that seemed to declare a “coming out” of sorts — at least when talking about disability. And it’s true. I have been chatting more and delving deeper with co-workers and members of the disability community.

But finding the appropriate way to talk about disability and being comfortable with my voice will be an ongoing process.

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Note: Charcot-Marie-Tooth News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Charcot-Marie-Tooth News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.