Lily's CMT Story: Accepting your Disability

Spreading awareness and educating others about Charcot-Marie-Tooth disease is one of the most important parts of my life. But as a middle-schooler desperate to fit in, this wasn’t my reality. I tried to hide my disability: only disclosing this secret to my closest most trustworthy friends, avoiding wearing shorts and dresses so my mobility aids were invisible, and hiding my accommodations at school. I made these conscious and unconscious decisions to preserve my image, to survive. I was afraid to be seen by my peers as different, out of the ordinary, weird. I was pretending to be able-bodied.

This lie I was living took a major toll on my mental health. I felt as though I was living two different lives: a ‘normal’ 12 year-old girl by day and an aspiring disability activist and active member of my community by night. I felt as though I was pretending to be someone else while trying desperately to hide my authentic self. I felt like an imposter when people would call me their hero when they heard my story. I thought, “I’m not a hero, I’m a liar.”

With this heavy on my mind, I decided to lean into the image I was presenting and hopefully find my confidence through pretending I already had it. “Fake it ‘till you make it”, as they say. Of course this process wasn’t easy, and will forever be continuing and evolving, but it worked! As it turns out, pretending to be confident in your own skin and in your identity as a disabled person eventually becomes easier and easier until you truly believe it.

A life changing factor in becoming comfortable with your disability is surrounding yourself with people who have similar challenges and lived experience. Previously losing touch during the pandemic, I reconnected with the disability community through the Charcot-Marie-Tooth Association’s Camp Footprint. Camp Footprint is a week-long summer-camp for kids living with Charcot-Marie-Tooth. Becoming surrounded by hundreds of people with my disability was life changing. I no longer felt different than my peers, I no longer felt the stares of strangers on my braces and wheelchair, but most importantly, I no longer felt alone. This experience greatly shaped my disability acceptance journey, and I will forever be grateful for my CMT community.

Further, the media one consumes plays a major role in their world. Before I went on this journey, I followed a large percentage of able-bodied people. While not problematic in isolation, this made me feel even more alone than I already did. I wasn’t presented with people with disabilities, health issues, chronic illness, or mobility aids; all of which were a great part of my life. Once I made the conscious decision to follow disabled and chronically ill creators on social media platforms, disability became more normalized in my subconscious, helping me accept my own.

Accepting my disability is a journey I will forever be walking as my life and medical issues change and present new challenges. But with the knowledge and skills I’ve learned through this process, I am confident I will be able to adapt and make room for such a big part of my life anywhere life takes me.

Meet the Author:

Lily Sander is a 16-year-old student, patient, and advocate. She serves on the Charcot-Marie-Tooth Youth Council, is a Muscular Dystrophy Association Ambassador, and runs her nonprofit, Period. Lily enjoys traveling, a good cup of coffee, and spending time with her dogs.