Is There a Lighthearted Way to Talk About CMT?
Columnist Young Lee ponders ways to describe how the disease affects his body
How do those of us with Charcot-Marie-Tooth disease (CMT) communicate how it affects us and explain what it’s like to be a CMTer?
As someone who has fairly mild CMT symptoms, I’ve described the disease as a kind of genetic clumsiness. However, I always knew that never really covered it.
It doesn’t explain how it feels when my fingers and grip just don’t cooperate, or why there are days when I can’t seem to use chopsticks, even though I’ve used them successfully hundreds of times before. It doesn’t allude to the awkwardness of days when my signature looks very different from usual, especially when using small, skinny pens and pencils.
“Genetic clumsiness” doesn’t capture the times when I misjudge what’s happening around my calves and ankles. I realized that I do this while exercising at my local gym and looking at myself in the mirror. Many times, movements that feel big to me are actually quite small. And sometimes, I feel my ankle twisting or rolling when it’s actually straight — though other times, the opposite is true.
And focusing on clumsiness doesn’t even hint at the throbbing I can feel in my feet for days after long bouts of walking — something that’s apparently uncommon among most able-bodied people. Nor does “clumsy” explain the random periods of tiredness I experience on my worst days.
Honestly, I can only think of a handful of times when I’ve had an in-depth conversation with an able-bodied friend about my life as a CMTer.
I’ve always felt that, in most circumstances, lengthy descriptions of CMT symptoms can be a bit of a downer. I don’t want to bog people down or make them feel bad. And I certainly don’t want pity.
But maybe there are ways for us CMTers to engage with others about disability without bringing negative energy to the conversation. And while we shouldn’t feel pressured to present ourselves as happy when we’re not, I know I’d be more likely to chat about CMT if I had other ideas for how to talk about it.
This, ultimately, is what the Charcot-Marie-Tooth Association (CMTA) has been encouraging our community to think about during this year’s CMT Awareness Month: different ways to bring up the disease in conversation.
The CMTA even challenged those of us with the disease to have our able-bodied friends try to navigate the world or play an instrument with mittens or socks on their hands — a lighthearted approximation of what CMT hands can sometimes feel like.
Even if we don’t end up using socks or mittens as tools to discuss CMT with friends, I think the idea is still valuable. It’s important to promote awareness and empathy and give others an idea of what CMT is like. Ultimately, that’s the path toward a more welcoming and understanding world, and it’s how we’ll get closer to finding a cure for this disease.
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.
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Comments
kay preece
Hello
I was diagnosed with CMT 1 in October 2021, i too feel awkward trying to explain how i feel on a daily basis to friends and co workers so i tend to just say that i over stretched last night and that's why I'm walking funny! I really don't think there is a quick way to explain the constant numbness i feel in my feet everyday and the clumsy way i walk, if anyone has an answer i would love to hear it.
Thank you
kevin cole
Sometimes I just tell people I have a wimpy form of muscular dystrophy, and it's just nature's way of seeing if I have a sense of humor.
Karon Edleson
I wish more ideas and suggestions had been given in this article. Mittens and gloves did not help me much and I think this subject is worth addressing further.
GL
The socks thing - the struggle is real! I have on a couple of occasions, hopped into the shower in a hurry not realizing my socks were still on. Because I cannot feel the difference unless I look. When I am in a hurry I don't always look!!! LOL. I drop things a lot and the part that bothers me most is the balance issues. Before I was diagnosed the clumsiness was very noticeable by my family. I had a lot of nicknames such as, "Gracie Graceful", and Klutz, and was chided as the only person who would fall up the stairs, or trip over a strand of hair. When I was diagnosed, my mother apologized for being one of the people who teased me about my lack of motor skills skills and poor coordination
Susan Maloney
I sympathize with all of the folks above. I was diagnosed at age 67 and my symptoms were mild. Now 77 much more observable. Amazing how many have never heard of this disease. Keep looking for a simple way to inform folks when I "get the look" on a bad day.
Jil Bridget Atkinson
I feel very isolated as I know nobody else with CMT, my friends and family have never heard of it nor had I until I was diagnosed with it at the age of 70 odd. I have always been super active, and although I still try to keep that way I find I do most of my work on my hands and knees, because of the falling over. I am not able to stand in one place without landing on the ground, so have to hang onto something. It is very embarrassing when I am with people I don't know because they look at me as though I have had too much to drink. To be in touch with other people with CMT I feel would help greatly especially mentally.