“To tell or not to tell people about my disability?” That is always the question. When I meet someone, how do I know how they will react to my disease? How can I be sure they will not laugh or turn away? It is not easy to tell people you’ve just met why you walk “funny.”
When I do tell them that I have a neuromuscular disorder, they often ask the name of it. So, I tell them that I have Charcot-Marie-Tooth disease. The next question is, “Shark what?” Or, “Are your teeth affected?” It has nothing to do with sharks or my teeth, but I can see why they ask that. It is a pretty strange name for a disease. “Well, is it even a disease, or a disorder?” I, too, often wonder why it is called a disease. People often ask, “Is it curable?” No, not at this time. There is also often, “Will you get better?” Not unless they can find a way to stop or slow the progress.
Then, of course, the next question is usually about how it impacts my life. That is the one I do not really like to answer. CMT has a huge impact on my life. It affects how I function in everyday life. Is it the worst thing? No. But it does make things more difficult.
The disease hurts my ability to walk far or on uneven surfaces. Since I have no positional sense in my toes, unless I am looking at them, I cannot tell if the ground inclines or declines. That causes me to trip often. CMT makes standing for long periods difficult, and makes it hard to balance while standing, which can be an issue anywhere one needs to wait or stand for awhile. Amusement parks are especially tough: It is hard to do all the walking and waiting in line.
I have started using a cane more and more. Which, of course, leads to more questions. I am learning to accept the fact that I need it for safety and should not care what others think.
It is hard enough to meet people, but add in a disability and it’s even harder. I wish I knew why people are so afraid or unsure or are just not willing to take the chance with being my friend. I have found that people are either interested in knowing more about my disease or want nothing to do with it. I am very careful about what I say and how much I say. I tend to just keep it to the basics when someone does ask, because I am afraid of how they will react.
“To tell or not to tell” may always be an issue for me. Perhaps I need to be brave and strong enough to just accept whatever reaction they give me. Yeah, easier said than done, I know. I guess I need to work on not letting their behavior bother me and just move on.
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.