What to consider when adding a fitness professional to your team

Many of us with Charcot-Marie-Tooth disease (CMT) have struggled to find medical professionals adept at working with patients like us. A good, productive patient-provider relationship requires effective communication, understanding, trust, and appropriate investment from all parties.

Considering that recently, I had a revelation: This kind of dynamic also applies to personal trainers.

Although I’d never thought about it before, there’s no reason why we should consider fitness and wellness professionals any differently from other members of our healthcare team. Yet I didn’t internalize this concept for much of my life.

Until a few years ago, I was always self-conscious about my CMT symptoms when interacting with fitness experts. I was often reluctant to be up front about my clumsiness, balance, lack of dexterity, and general weakness. I felt such things were an indictment of my character, and I was ashamed.

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As a result, I’d often conceal my ability level from coaches, personal trainers, and physical therapists. When they’d ask me how difficult or strenuous I found certain exercises, I’d try to provide the answer I thought they wanted to hear. Sometimes I’d say, “Oh yeah, I could only do one or two more reps,” even when I had quite a few left in the tank. Other times, I’d try to appear much less exhausted than I was.

In retrospect, this attitude was silly. We should all strive to be honest with every member of our healthcare team, including fitness professionals. Therefore, it’s important to be intentional in our search for such professionals to ensure we feel comfortable being open with them. After all, honesty is required to achieve the kind of care and results we’re after.

Choosing a fitness professional who’s right for you

During a recent conversation with Julie Stone — a CMT advocate and a personal trainer certified by the National Academy of Sports Medicine — she told me that many trainers find it difficult to work with clients with very specific constraints, such as those imposed by CMT.

Stone attributes some of this reluctance to certain prevailing attitudes about fitness, professional training that may not consider disability, and poor understanding of client needs.

“A lot of people who don’t have a disability that affects their energy levels, they just don’t understand this concept: [CMTers often] wake up with a half battery every day, and we have to live our lives on this half battery and not let that battery die — because if we do, we’re going into the next day with even less,” Stone said.

For this reason, she suggests that CMTers thinking about adding a personal trainer or wellness professional to their healthcare team should strongly consider looking for either a fellow CMTer or someone who’s receptive to learning about life with a disability. That may include concepts such as the “spoon theory” (a measure of energy levels) and chronic pain.

“We live in a world where everything is like, ‘Go! Go! Go! Keep pushing! Go as hard as you can!'” Stone said. “This is true in the fitness world and the world in general — the idea of giving 150% all the time — and it’s just not feasible.”

I last started working with a personal trainer a couple of years ago. I wanted to slow the progression of my CMT symptoms, feel stronger, improve my fitness, and learn to develop an exercise routine I enjoyed. Working with that trainer was life-changing.

However, that was only the case because I’d matured a bit, grown less self-conscious, become more confident in my identity as a CMTer and, simultaneously, happened to partner with a trainer who was comfortable working with me. He wasn’t bothered when I’d ask numerous questions about form, the supposed goal of each movement, and how to best progress. Though he wasn’t a CMTer, he accepted my limitations and was receptive when I’d bring him academic articles about CMT.

Now, I don’t believe that working with a fitness professional is necessary to reap the benefits of exercise, but I appreciated the guidance and education the partnership provided me.

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.