When is it appropriate to describe CMT symptoms as mild?
The term has different meanings in clinical settings and everyday life
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.
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.
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Judy K
Thanks for this article. I am 73 and was diagnosed last year with a "mild"case of CMT. My brother and sister also have CMT and one has "mild symptoms" and one has more severe issues. I agree with your comments. Because the symptoms change day to day and sometimes I am OK and sometimes I am not, but just keep things going and try not to focus on what hurts or what is difficult. My goal is not to get worse as time goes by and using mild helps me have a little more hope. Nice to. know there are more of us out there.
Mark Fulton
Thank you for this, Young. I think you've nailed it, especially when you emphasize the effect CMT can have on the overall quality of life.
While individual symptoms might accurately be described as 'mild' in some cases, the combined effect of numerous 'mild' symptoms (not too mention those that are much more than mild) can have a profound effect on the overall quality of life. You've likely heard the phrase "Death by a thousand cuts". Well, I often think of CMT's effect on my own life in terms of "Disability by a thousand mild (and not-so-mild) symptoms".
I'm 64 now and wasn't diagnosed with CMT till about 25 years ago. That diagnosis solved a lot of mysteries for me and I learned a lot in the following months. Later on, I was consulting with a different neurologist in preparation for a sleep study. During the interview I mentioned my CMT diagnosis. His assistant was also present and asked him about CMT. He told her that CMT is not a very significant condition, mostly that it basically causes some "foot problems". If only!
Over the years I've continued to learn and experience much more about CMT. More than anything, though, I know this. If a genie appeared to me and said that I could choose only one of my long list of CMT symptoms and secondary (to CMT) health conditions to instantly disappear, I would choose energy impairment. I would choose that one because it is PROFOUND all by itself. I would choose that one because it makes it SO MUCH MORE DIFFICULT to cope with everything else.
I recently came across the umbrella term 'Energy-Limiting Chronic Illness (ELCI)' on the UK website Chronic Illness Inclusion and found this description of energy impairment to describe exactly what I experience. https://chronicillnessinclusion.org.uk/2021/04/28/what-are-energy-impairment-and-elci/
Perhaps others here will find it helpful, as well.
E. W.
100%.
Joan Lisante
Good column! If you can walk a few miles unassisted, "mild" is definitely an accurate description of your CMT. I would have described my own CMT as mild when I was about your age. But in most cases, the sly devil is progressive, as it was in my case.
I married, had two children and a legal career, with nothing more elaborate than orthotics. Years later, the hiking poles I used for cross-country skiing are now used for walking, along with AFOs and physical therapy. We know CMT progresses; the rate and outcome is individual. Until there's a cure, all CMTers are just doing the best they can.
Linda Crabtree
My CMT was once described by a physician has mild. I cannot walk walk and I can barely use my hands. If that is mild then I would like to see a profound case. I'm a writer as well as being an artist. I am 83 years old, no I correct that, I am only 81 years old, I just feel like I'm 83 years old. When I was younger, I wondered what it would be like to have profound CMT and be old. Now I know. It is just as frustrating now as it was when I was in my 50s, 60s and 70s. But, I still enjoy life, I am married to a wonderful man who is 86 and still looking after me and us in our own home. I've come to the conclusion that life is what you make it. I could be miserable and blame my CMT for everything but I don't. I make the very best of life and I am bound and determined to live the very best life I can until there is no more. CMT will not defined me nor will it control me.
Joanne Wiklund
Linda, way to go. Your work in the CMT community is legendary. I admire your strength and endurance. I disagree with the use of the word mild anywhere. I was told it would never go past my knees. I had one physician note on my chart that "she pays too much attention to her symptoms." How judgmental! I think now that I'm old, I had to pay attention to my symptoms to learn which ones to pay attention to! Life IS what you decide to be, live and adjust to. God is good to me every single day. I trust Him to keep me
going. Joy is contagious. Catch it and spread it!
Dixie Papast
Great article Young. I say mild, because when I compare my symptoms with others, I feel like my symptoms could be a lot worse.
Mahmoud
My CMT type 4c was described as mild and I was doing so many activities . Now I'm 50 years old but I'm suffering much while walking..
i'm waiting a treatment for this disease i feel frustrated. Please if any one heard about treatment for my case ,please notify me .
thanks alot
Maureen
This was excellent! I've had friends who googled CMT say that it's not so bad because of how it was described in articles. CMT affects me every day, all day, in every way and I would say that mine is mild. As I get older, it's more the case.
Shona
This is spot on. And also some days are better than others depending on things like sleep quality the night before or even the weather. I sometimes think that they label it 'mild' if you aren't in a wheelchair, almost like you should be grateful to not be 'severe'.