Open Letter to People without CMT (CMT Awareness Month 2015 - DAY 27)
Having Charcot-Marie-Tooth Disease means that many things change. Many of the effects of CMT are unseen, like the effect pain and fatigue have on every day life. Just because you can't see the changes doesn't mean they aren't real.
Most people don't understand much about CMT and it's effects, and of those that think they know, many are actually mis-informed. In the spirit of informing those who wish to understand, these are the things that I would like you to understand about me. Before I start, know that this is not a cry for attention, nor is it a plea for pity. Everyone in this world has their own challenges to deal with and I'm simply sharing mine.
Please understand that being disabled doesn't mean I'm not still a human being. I have to spend most of my day being very careful what I do, and if you visit I might not seem like much fun to be with, but I'm still me stuck inside this body. I still worry about life and my family and friends, and most of the time I'd still like to hear you talk about yours too.
Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker than ever. Please, don't say, "Oh, you're sounding better!". I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.
Please understand that being able to stand up for two minutes, doesn't necessarily mean that I can stand up for five minutes, ten minutes, or an hour. It's quite likely that doing that two minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away either.
Please repeat the above paragraph substituting, "sitting up", "walking", "thinking", "being sociable" and so on ... it applies to everything that I do.
Please understand that the effects of CMT are variable. It's quite possible (for me, it's common) that one day I am able to walk to the bathroom and back, while the next day I'll have trouble getting out of bed. Please don't attack me when I'm worse by saying, "But you did it before!". If you want me to do something, ask if I can and I'll tell you.
Similarly, my disability may vary suddenly, meaning I may need to cancel an invitation at the last minute, if this happens please do not take it personally.
Please understand that "getting out and doing things" does not make me feel better, and can often make me worse. Chronic illnesses may cause secondary depression. Telling me that I need some fresh air and exercise is not not correct and probably not appreciated - if I could possibly do it that, I would.
Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now. It can't be put off or forgotten just because I'm doing something else more exciting. Illnesses and disabilities do not forgive their victims easily.
Please understand that I can't spend all of my energy trying to get well from my incurable chronic disability. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness or disability such as CMT is coming to the realisation that you have to spend energy on having a life while you're disabled. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with CMT.
If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought; and it's not because I don't want to get well. If there was something that cured, or even helped, people with CMT then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with CMT, if something worked we would know about it.
If after reading that, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don't expect me to rush out and try it. I might not even reply. If I haven't had it or something like it suggested before, and it sounds reasonable, I'll probably take what you said and discuss it with my doctor.
I depend on you - people who are able-bodied - for many things.