by Jon Seets
My tip is to accept your CMT diagnosis (or your child’s) and make sure your family does, too. My parents never accepted mine, and it made things harder.
When I was about 9 years old, there was a physical exam at school. We were asked to skip, do jumping jacks, squat, and touch our toes. I remember skipping several times when all the other children skipped only once. I believe this is when I first started to show signs of CMT.
Growing up was difficult because CMT began to settle in my legs, feet, and hands. My muscles ached. I was told that it was growing pains and that I should just ignore it.
My parents continually told me to lift my feet and put my heel down first, which I couldn’t do. Sometimes they raised their voices.
I learned how to cope by ignoring this criticism. I couldn’t walk better anyway. I didn’t date because I was too tired. If anybody said anything about my walk, I ignored it.
In college, when I was about 25, my father took me to a podiatrist to buy shoes to fix my walk. The podiatrist said I needed to see a neurologist. I was quickly diagnosed with CMT.
From that point on, my parents left me alone. No help. No confirmation. It’s still like that today. Is it denial, shame, stigma, stubbornness, or fear? I think it’s denial.
I researched my problem using dial-up internet and figured I had CMT1X (aka CMTX1, CMTX). My mother and I have both tested positive for CMT1X. She denies having CMT and won’t tell her doctors about it.
It seems CMT is hard to admit and easy to deny. Denial allows a person to persevere and continue with life. CMT is not a topic of conversation in my family. I gave up, stopped talking about it, and drifted apart from family.
I encourage families to talk about CMT and figure out ways to cope. Acceptance allows you to figure out ways to do simple things that others take for granted. Ankle foot orthotics (AFOs) help you walk better, buttonhooks help you button your shirt and pliers help pull things apart. There’s so much to learn about CMT.
I also encourage everyone with CMT to see a counselor for help in accepting the diagnosis, and to look online and reach out to others with CMT at a CMTA branch near you.
FAQ
Q: How can I help my family accept a CMT diagnosis?
A: Start with open, low-pressure conversations, share educational resources, and consider connecting them with a CMTA branch or support group where they can hear from others in similar situations.
Q: Is it normal to feel denial after a CMT diagnosis?
A: Yes, denial is a common initial coping response, but it can become harmful over time if it prevents access to helpful tools like AFOs, counseling, and community resources.
Q: What resources are available for someone newly diagnosed with CMT?
A: The CMTA offers local branches, online communities, and educational materials, and a counselor can help with the emotional adjustment to the diagnosis.
The information provided here is for informational purposes only and does not constitute medical advice. The CMTA does not endorse any specific products or treatments for CMT. Please consult your doctor before making any healthcare decisions.
