What My Body Doesn’t Show You

Invisibility is like a second skin to you.

You wake up, you brush, you get ready for a brand-new day with new hope all to crash down before lunch. The problem is not your lack of motivation or that you are not trying hard enough but the real struggle is behind every move you take forward you need to take a step back just so you know not fall down or get hurt due to jerky movements that are not controlled by your own conscious mind. You were just eating your morning breakfast but the tremors were not letting you eat peacefully. On your way to the university everything was normal but your ankle got twisted that too on a plain surface with your regular sports shoes on.

The point is for every little thing you gotta work twice as hard as any other person out there. When all your friends are enjoying the party, you need to step back and let your body regain your fragile sense of balance letting people wonder what’s up with you. From the outside your functional, but just a bit clumsy at times in reality nobody seems to notice your daily war with youe own biology just to keep the persona of being functional alive.

Well, this is my everyday reality. When I was 16, I got to know about that I am not clumsy or someone who acts funny but I’ve a genetic disorder known as Charcot-Marie-Tooth disease. Personally, speaking getting the diagnosis was actually the easy part but making my loved ones understand was a pain. Nobody seems to understand that a 16-year-old can have balance problems or lacks significant muscle strength. The task which no one has to think twice before doing I have to consider would it be safe or not. Task as simple as wearing heels or clicking pictures without dropping the phone I have to think about all the odds and the worst part no one truly seems to understand it.

Earlier it uses to bother me a lot but with time I understood that you can’t really make people understand unless they truly want to understand so now, I do not try. The years after the diagnosis was hard as I did fall into the cycle of depression but I did bounce back thankfully. Even though it’s a slowly progressive Peripheral neuropathy with no establish connection to mental health conditions but the sheer detoriation to the quality of life it causes is enough to causes mental health symptoms.

When every other research groups or awareness campaign talks about the issues created due to the physical symptoms of CMT we should take a moment and discuss about its psychological impacts too then only we can truly help people with CMT.