I’m Feeling Overwhelmed by CMT

I’m Feeling Overwhelmed by CMT

I’ll be frank about how I’m feeling about my disease.

Lately, I have been struggling with feeling overwhelmed about Charcot-Marie-Tooth disease (CMT). I don’t usually let CMT get to me. However, over the past few weeks, I have had mixed emotions about this crazy disease. I can’t pinpoint any specific trigger. Perhaps my feelings result from a combination of recent doctor’s visits, discussions of possible surgery, and the return of minor pain.

I’ve had ongoing issues with my ankle-foot orthoses (AFOs). I’m still struggling to accept that I need to wear them. Yes, I know it has been almost a year, but I’m finding it tough. I think my AFOs are ugly and I’m not convinced they are helping me walk. When I wear them, I feel self-conscious and unattractive. I want to blend in with the crowd, and I don’t want anyone to notice what is on my ankles. I know the AFOs do not define me, but sometimes I feel as if they are all anyone can see.

I do wear shorts and skirts, but I often hide the AFOs. People tell me not to worry what others think and to do what makes me happy. That’s often easier said than done. Some days, I don’t care what others think. But lately, I’m struggling with self-confidence and my belief that this disease has made me less of a person.

I know that rationally, CMT cannot, and should not, define me. But CMT is a part of me, whether I want it to be or not. I guess these feelings are normal. I try so hard to be positive about living with CMT. Perhaps I need time to process the information I’ve received from my doctor and to learn to adapt to changes with my CMT and how these changes affect how I approach everyday tasks.


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.

Jill Price is a fourth grade teacher and a mom to a teenage son. She was diagnosed with CMT 1a at the age of 2. Jill loves to travel and enjoys spending time with her family and friends.
Jill Price is a fourth grade teacher and a mom to a teenage son. She was diagnosed with CMT 1a at the age of 2. Jill loves to travel and enjoys spending time with her family and friends.

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  1. Mary Ann Zall says:

    My husband died from Parkinsons but had CMT his whole life.

    I am not convinced it was Parkinsons. But they gave him the
    Parkinsons drugs which I believe made him go down hill fast.
    After giving him these many drugs which did not work. He died
    within 3 months.

    I have been looking at your site for many years and don’t see much
    progress with this Neuro condition. Have you had any success with
    Stem Cells.

    My daughter has CMT and is struggling with it. She tried Stem Cell
    theraphy but it did not work. Very discouraging.

    They said her case is very complicated. Can’t identify the type of CMT.

  2. E THOMAS says:

    I so needed to see your post ! Jill
    I’m still crying from reading it😑 you’re not alone , Myself as well as others,are going through similar issues & it’s not easy! I was recently officially diagnosed a year ago .. this year a month ago I was diagnosed with Autosomal Dominant C.M.T & it Sucks 😑😑

    Thanks for sharing

  3. Linda Nelson says:

    So not alone. I do not have CMT but I have CP and with a lot of walking issues I so get your struggle. You are doing the best you can, considering all you have learned, trying hard to make good decisions so your life is not thrown into turmoil. Keep asking the questions until you are satisfied with the answers. I’m happy to struggle along with you always.

  4. A Stout says:

    You took the words right out of my mouth. I was diagnosed when I was 12-13 years old. That was not a great time for a diagnosis. I am older now and have fallen off of my stable plateau. I am now having more issues with my CMT and trying to cope and accept the changes. My one doctor I have can’t say for sure if it’s CMT related but it doesn’t make having the CMT any easier. Some days I am incredibly angry and others I am calm and I know I can handle it. I am trying hard not to let it get to me but it is. What makes it worse is the stares and the questions. People feel they have a right to know the what and why. I never tell the why and that’s the CMT. I just say it’s because I’m a klutz, previous injuries, etc. I’ve been there and told people about the CMT. It didn’t make it better for me. Now I don’t. I accepted that a long time ago but these recent developments are triggers to the past and I am struggling.

    Thank you for sharing something so personal. I know it’s a hard thing to do. You are not alone.

  5. JOHN says:

    Dear Jill,
    We, the ones born with CMT, are not human beings but super heroes.
    Our life is full of difficulties that nobody could accept, but We are obliged to face them each time each day whatever the environment (temperature, sickness, stress…). Since the apparition of CMT effects on our body, We have developed super powers of our mind able to (partially) accept our weaknesses, unstabilities lack of dexterity and related CMT disorders. Life is hard but we are going up the spiritual ladder. The solution to go on living is the motivation and acceptation of our physical state. We go beyond ourselves, We are super human beings 😉

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