One interesting note I read when first learning about CMT, a person with CMT expends 7X the energy and effort to do the task, as a "normal" person to do the same task. The upside is, We are stronger in character, perseverance etc. b/c to do everyday things required diligence! If I had my pick, I'd rather be stronger of WILL and Character than physical strength b/c we "find a way and are resourceful" when others just quit! CMT= C AN M ANAGE T HIS!
CM (Can Manage)
Once again, CM hits the nail on the head! The fatigue and exertion thing is very important, very real, and VERY hard for others to understand.
In line with this, the thing I'd want people to know is that CMT is often a hidden disease. Many people are very good at hiding outward signs and, as a result, you might not know they even have a problem. At my last company, there were a group of runners. I'm a tall, thin man and by all accounts look like a runner. I have NEVER been able to run in my life! Still, not a week went by where someone from the group didn't ask me when I'd go running with them. I'd just smile and say "I'm not really into running."
Once in a meeting, I was struggling to open a water bottle (one of those with the ultra thin caps! Damn I hate them). Pinching, gripping, and twisting is not something I do well with. My hands are quite affected. A manager from another group saw me and asked if I was having trouble. I just mentioned I'd spilled a little or something to that effect. He replied: "Oh, good. I was gonna say, you need to get to a gym." Ugh! Really!? He had no idea.
Our disease can be hidden and sometimes we won't get any exceptions, understanding, or empathy from those around us. If I could say one thing, it would be: You may not know I'm struggling because I wear it so well.
Hallelujah! Chad You summed it right up! I'm told all the time "but, you look so good!" Wow you are doing better no longer using a wheelchair doesn't mean I don't need one but rather I'm more frustrated by using it than I was struggling to walk! LOL