BY BETHANY MELOCHE
I've read a lot of articles and heard a lot of podcasts about the "things you shouldn't ask me about my disability/disease/body." I get it. As a person who happens to have Charcot-Marie-Tooth (CMT) disease, a condition that affects the peripheral nerves that control muscles, causing muscle weakness and loss of function and sensation in the limbs—I too have been on the receiving end of many ill-timed or thoughtless questions. My thinning legs and wrists, curled fingers, and odd gait draw many stares and inappropriate comments.
But not all questions and conversations relating to CMT leave me feeling lousy. Some are even unexpectedly delightful. So, let's change the conversation: Here are seven things you can ask me about my disease. Some of them I even wish you would ask me!
1. What are your life goals? This is a positive way to transition into chatting about my disease. A lot of my goals have been influenced or inspired by my having CMT—my decision to change careers, my annual fundraiser, and my dream of running a marathon. I'd rather talk about my disease in that context than any other.
2. Can I help with that/Can I get you something? If you see me hopelessly reaching for something, or generally struggling, it's not inappropriate to offer a hand. In fact, it's typically greatly appreciated. (Shout-out to the nice man who offered to carry my latte to my table today!)
3. What preconceived or mistaken notions do people have about you because of your condition? Not only is the answer to this question likely to be enlightening, it should lead to some great potential follow-up questions. (Also, who doesn't love the chance to complain a little?)
4. What do you do to stay fit? Fitness is relative, and we each have our own version of what that means. Sure, I'm not nearly as strong as someone without CMT, but I still find ways to stay fit; exercise and nutrition are two of my favorite things to talk about! People are often surprised that despite wearing leg braces, I completed a 50-mile fundraising walk this year.
5. How are you feeling today? I've heard some people hesitate to ask variations of "How are you?" because they assume that for someone with a chronic health condition the answer is always "not great." But we all have good and bad days, and that's why the today qualifier is helpful. Asking this question shows that you not only care, but you recognize that we have good and bad days—same as anybody else.
6. Where can I find more information about your disease? I don't think I've ever been asked this question, but if I were, I would think, Wow, this person isn't just wanting to satisfy his curiosity; he is genuinely interested in learning about my disease! I always have lots of resources to share—starting with the CMT Association website, cmtausa.org.
7. Can you autograph your book for me? I recently published How Should a Body Be?, a memoir about my experiences growing up with CMT. I love being asked about my book. These are the best kind of conversation starters: asking about something I'm passionate about. Many people write blog posts, Facebook posts, books, or even host fundraisers around their diseases. These are great topics to engage around. It doesn't need to be a big thing either—if you see someone who took the time to put unusual decals on her wheelchair or leg braces, ask about them!
Listen and Learn
I wouldn't recommend your first question to anyone be about his or her disability/disease/body. Instead read the relationship. If it's in a place where you can bring up any potentially emotionally charged subject—think politics, religion, or dogs versus cats—you can probably ask about the disability.
In general, people love talking about their lives. So if you are a good listener and care about what I'm saying, you have the opportunity to connect with me in a meaningful way.
Bethany Meloche is the author of How Should a Body Be?, a coming-of-age story about growing up in Michigan, falling in love, and learning to live with Charcot-Marie-Tooth disease. Her story has been featured in the Daily Cal, The Mercury News, Mountain View Voice, and Lower Extremity Review.