Sharing CMT info with others

[Guest guest]

I am a frequent reader here but an infrequent poster. I am 44, and was

diagnosed with CMT at age 4. I went from one brace to two about 6 or 7 years

ago, and I now use a walker as well. That's just background information. :-)

First let me say that I firmly believe that the decision to share or not

share information about any aspect of one's life is a highly personal one

and I'm not going to tell anyone else how to do it. It's not very often that

people ask me about my CMT. When I was younger and less seriously affected,

people would occasionally ask if I'd hurt myself. With the walker, it's

clear that I have a disability and people are more circumspect, I think.

However, when people do ask, my response is based on how I perceive their

intentions. I usually give a brief response like, " I have a neurological

disease. " But I would never consider responding in a hateful or " mind your

own business " way. I am Southern and that would just be rude. :-)

Without a doubt, CMT has had a lot of negative effects on my life, but I

refuse to let it steal my joy. I think that one reason people are afraid of

the disabled is that they've asked (or seen someone else ask) what they

thought was a harmless question and had their heads snapped off by someone

whose unfortunate condition has made them bitter and angry. I'd rather have

a quick discussion with someone and let them see that hey, I am " normal " and

nice despite my weird walk and my medical equipment.