When is it appropriate to describe CMT symptoms as mild?

From a cursory internet search, it’s easy to find many articles that describe certain Charcot-Marie-Tooth (CMT) symptoms as mild. Some even refer to types of CMT that way.

For years, I didn’t think too much about it. After all, I first started seeing these types of articles as a preteen. I never thought to question the word choice or the implications, and besides, having only mild symptoms sounded like the kind of CMT experience I wanted for myself.

My presumption that the condition wasn’t severe was so integral to my understanding of it that I often used the term “mild” to describe my CMT to others. However, I’m beginning to question the word — not just in regard to my own life, but also to its possible impact on all CMTers.

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Understanding the full picture

I don’t know why or how “mild” became a common term in the CMT community. After asking some contacts who work in medicine, I’ve come to understand that the term can sometimes be useful for healthcare professionals. For example, physicians and researchers can better understand a person’s symptoms and pain threshold by using descriptors such as mild, severe, and profound.

I can appreciate this. When these words have clear definitions and applications, I imagine it helps practitioners to determine appropriate treatments.

However, while such descriptors may be useful in clinical settings, words like mild are ill-suited for understanding the holistic impact symptoms may have on a person’s life. Without this understanding, “mild CMT” doesn’t say much.

My fear is that when we confuse clinical definitions with colloquial understandings, we can unintentionally misrepresent what it’s like to live with a chronic condition. Although mild may be a fair descriptor of the intensity of someone’s CMT symptoms, it’s an inappropriate proxy for their overall quality of life.

Experience can’t be quantified

Although many of us may want to classify our experiences objectively, I don’t know if that’s possible.

Many would say my symptoms are mild, as I’m capable of doing things that other CMTers may find impossible. Most days, I can walk unassisted for a few miles. I still occasionally purchase pants that have a button fly.

Yet CMT has still shifted my life’s trajectory. It’s affected the way I view, move, and care for my body. My family and I have collectively spent thousands of dollars on orthotics, special shoes, exercise equipment, physical therapists, and personal trainers. I don’t know if someone outside of the disability community would realize that the condition has had such a big impact on my life if I referred to it as mild.

I’m still trying to process the best way to understand my own life with CMT. I don’t know the best way to categorize CMT experiences, or if there’s even merit in doing so outside of a medical context.

However, perhaps all of us in the disability community would benefit from considering how we might be more explicit and open about our individual narratives, and from listening closely when others share their story. Because even mild CMT symptoms often have profound effects.

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.