Finding a sustainable way to view weight management with CMT

The path to a desirable BMI is different for everyone with our disease

Young Lee avatar

by Young Lee |

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A few weeks ago I saw my primary care physician for a routine physical exam, the first I’ve had in person since the height of the COVID-19 pandemic. I updated him on significant life events and asked a few general questions about my Charcot-Marie-Tooth (CMT) symptoms as well as muscle and pain recovery.

As my visit drew to a close, my physician looked again at my measurements from the last time we saw each other, and one metric stood out to him: my weight. Since my last visit, I’d dropped more than 60 pounds.

“You should write a book about that,” he said.

Slightly embarrassed, I said I wasn’t sure if I had much to say about weight loss — after all, I added, what works for one person may not work for another.

“Well, weight loss is where a lot of money is,” he responded with a smile and a chuckle.

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Different weights, different needs

I’ve since been thinking from time to time about this interaction. In fact, my weight loss as a whole is something I’ve been mulling since it prompted me to overhaul nearly my entire wardrobe. Even now, I don’t think I’ve fully processed all the implications and feelings I have about having a smaller and lighter body.

Nonetheless, I know weight management concerns many CMTers and is a topic many of us discuss. Some CMTers want to lose weight and find it difficult. Others try hard to put on weight and find it no less challenging.

CMT concerns, like those of many chronic conditions that affect nerves and muscle mass, overlap considerably on the health indicators that commonly involve body mass indices (BMI). One study from 2021 noted that children with CMT are often less active than their able-bodied peers, and many are generally considered either underweight or overweight by current BMI standards.

While this observation alone isn’t something I find concerning or disheartening, it’s worth examining how weight at either end of the scale correlates with compounding symptoms that lead to a more profound loss of ability and quality of life. Thus, I believe it’s important for every CMTer to factor in weight when considering their holistic health.

From my experience, however, I’ve sometimes found it hard to think of my weight without quickly obsessing about it. After all, the idea of “proper weight” exists at the intersection of health, beauty, and perceived morals.

Consequently, I’ve found it best these days to divorce myself as much as possible from seeing weight change itself as a primary goal. Instead, I’ve found it a bit more useful to view weight as simply one manifestation, a side effect, of my lifestyle — which happens to include an exercise routine and a particular diet.

My exercise routine and my physical activities reflect my interests and what I find fun. As a result, I’m now working out six days a week, and each of my workouts involves weightlifting movements I enjoy. My diet, meanwhile, reflects my concerns, my taste, and my culture. These factors led me to adopt a largely plant-based diet that involves a lot of congee.

The reason for even considering how health fuels my lifestyle is because it reflects my priorities and values. Attending to my health makes me feel fulfilled and happy — emotionally, mentally, and physically.

However, I imagine each of us will weigh each of these factors differently, and even if some of us have similar interests and values, we’ll find that we manifest them in different ways.

By chasing my priorities and values, at least for now, I’ve found a sustainable way to view exercise and diet because they’re not driven by self-loathing or body frustration for failing to meet a standard set by someone else.

I often suspect that in the health and fitness space, too many people are offering answers, but too few are asking questions. Few people can adopt someone else’s lifestyle, workout regimen, or diet without some alterations. It’s not as though we can each take a prescription for a lifestyle change and pick it up at our local pharmacy.

I’m lucky I’ve found an enjoyable, sustainable, and fun lifestyle that’s working for me at my current stage in life. It won’t work for everyone. But discovering our paths is work we each may need to do independently.

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, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.


Judy Marler avatar

Judy Marler

I have CMT and just want to express appreciation for all the informative posts. It's also good to know that I'm not alone. It surprises me that the majority of medical doctors I see have NO knowledge of CMT.

Sharlene avatar


I was diagnosed at 16 and I am now 70. I learned fairly early on that most doctors don’t know anything about CMT we are basically on our own. If anyone has had a different experience, I’d love to here it. Since there is no cure there is not much that they can do so there is no interest for them to learn about the disease.


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