30 Days of MD: Marie De Graaf

by Kevin Schaefer | September 11, 2020

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Day 11 of 30 Days of MD Topic: Accepting Life with Charcot-Marie-Tooth This is@marie_charcotmarietooth ’s story: Shame. As a child I was ashamed of my thin calves and ankles. Why were mine so thin? In my teens I found out during gym class that it was very difficult for me to walk on my toes and heels. Running was also very difficult for me. I have very long legs, I have an athletic build, so why was I running so weird and slow and was I often tired? I was diagnosed with CMT type 2 (charcot-marie-tooth disease) around the age of fourteen. I was very ashamed of something that I couldn’t control. I always wore long pants, hiding my legs and feet. I was always very aware of the environment (if I go this way no one sees me walking), when people asked why I walked like that, I made up excuses. Years passed, I was offered aids such as insoles for your shoes to make walking easier. I was a little less ashamed of what I had, I told some friends about it, because my feet had grown crooked, they could hurt a lot while walking. Friends had to know that I was suffering from CMT, because you can’t hide pain. When I was 27 years old I looked at the possibilities for people with CMT and then I decided to have an operation, they tightened my ankles (triple arthrodesis) and straightened my toes. I was offered leg braces and since then I have been practically painless through life and walking has become so much easier. Since I passed the age of 30 the shame has been much less, I wear skirts with pride and people can see my braces and therefore my condition. I hope when I turn 40 that the shame is completely gone and that I finally fully embrace my condition. Time will tell. #MDAwarenessMonth #MDAwareness #30daysofmd

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