My Appreciation of the Online CMT Community Has Grown

Five years ago, I had a conversation with one of my writer friends. I had heard through the grapevine that she was working on a new story: a thriller featuring a protagonist with Charcot-Marie-Tooth (CMT). I was surprised at her choice of lead character because CMT isn’t a well-known disease. Furthermore, she didn’t know I had CMT. I thought that it was an incredible coincidence.

Her story idea intrigued me. She was excited to chat with someone who had real-life experience of the disease. However, at the time, I was ignorant about my own CMT, but the conversation led me to search Google for “Charcot-Marie-Tooth” for the first time.

The search results underwhelmed me. I remember viewing a handful of scholarly articles that seemed to describe CMT as a peculiarity and reading some concerned forum posts from parents.

There were few stories from those who had CMT — actual “CMT-ers.”

But things seem to have changed since then. It tickles me that I now have a handful of books on my Kindle about the disease that has shaped a good chunk of my life.

I want to be optimistic and take it as a sign that publishers believe CMT stories are worthy of reading and discussing. And, of course, they are. It feels nice to be acknowledged and seen.

In terms of representation, there is still a lot left to be desired. I can complain about ableism, how the Transportation Security Administration seems to have problems with ankle-foot orthoses, and how unaccommodating supposed “public facilities” are.

And, yes, the media seems to frequently gravitate toward “inspiration porn,” but there are now some agreeable exceptions. I can also complain about how many medical journals, from my perspective, seem overly concerned with “observing” rather than “listening.” However, I think it is important to acknowledge the progress we’ve made and celebrate the folks that make up the CMT community.

People with CMT seem to be speaking out more or at least finding more avenues to express their stories. I love this new age of CMT narratives about genuine struggles and victories — in the past we had only CMT articles written with the cold perspective of medical terminology and diagnoses.

I’ve found CMT Facebook groups with folks from my area and those with the condition celebrating common interests. And even if it’s not a topic that’s close to my heart, I’m glad to read about CMT folks working in fashion. I realize that people in the CMT community are as diverse as anyone else.

It’s powerful when people with CMT tell their stories, and it’s clear that while acknowledging CMT may be relevant to understanding our experiences, it’s not “the story.”

It’s nice to reflect on how the needle has moved in the past few years.

I don’t know if my friend ever finished her story about the lady with CMT. Her career and travels drew her toward other projects. Part of me hopes that she’ll return to that draft. We need stories of folks affected by CMT because the world of fiction should be at least as diverse as the environment in which we live.

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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.