To Tell or Not to Tell People About My Neuromuscular Disorder

To tell or not to tell people about my disability — that is always the question. When I first meet someone, how do I know how they will react to it? How can I be sure they will not laugh or turn away? It is not easy to tell people you just met why you walk “funny.”

When I do tell them I have a neuromuscular disorder, they often ask the name. So, I tell them I have Charcot-Marie-Tooth disease. The next question is inevitably “Shark what?” Or “are your teeth affected?” It has nothing to do with sharks or my teeth, but I can see why they ask. It is a pretty strange name for a disease. People often ask “Is it curable?” No, not at this time. Then they want to know if I’ll “get better.” Not unless they can find a way to stop or slow the progress.

Then of course, there are the questions 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. It affects my ability to walk far or on uneven surfaces. Since I have no position sense in my toes, unless I am looking I cannot tell that if the ground goes up or down. Therefore, I can trip on “thin air” — yes, it is a talent of mine. CMT makes standing for long periods difficult and it’s hard to balance while standing, which can be an issue anywhere one needs to wait or stand for a while. Amusement parks are 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.

CMT also impacts my ability to walk up and down steps. Oh, how I dislike steps; falling up steps is always fun. It is always interesting to try to explain that one to people. I cannot carry anything heavy up or down steps. And forget about even using the steps if there is no railing or wall to hold onto. I have to find another way to get where I need to go.

I am never sure how much to tell people or what to say when they ask questions. I never know what to put on my profile on a dating site. How much do I say? If I say nothing and then meet the person, they see my funny walk and are often put off. If I do say anything, they usually are no longer interested. I guess it is better to know right away if they are OK with the idea that I may use a cane at times, and scaling a mountain is probably not going to happen.

It is hard to be a single mom with a disability. It is hard enough to meet people; then add in a disability and it’s even harder. I wish I knew why some people are so afraid, unsure or just do not want to take the chance. I have found that people are either interested in knowing more about it 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 what they will do. I often wonder if I should have told them about it, especially if they show pity. I do not want pity, just understanding and acceptance.

To tell or not to tell may always be an issue for me. Perhaps I need to be brave enough and strong enough to take 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.

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