invisible disability

[Guest guest]

>Any suggestions about how to " convince " others of your disablility without

whining would be appreciated here<

Don't know if this helps, but over the years I have first had to know

and be sure of my limits and boundaries. If I need help with something I

ask. I need to pay attention to what I need and when. As for explaining

to others, I have had to be clear and assertive of that; example 'no, I

cannot go shopping with you now, I need to take a nap'. I have had to

learn to be firm. I don't try to convince anyone of my CMT. I explain it

as best I can and as simply as I can. I used to show the CMT video to

anyone who wanted to see it, but I never pushed. I have realized I

cannot to everything and the best is, I don't have to do everything or

'prove' anything to anyone like I once thought. How others react to my

CMT belongs to them. I just try to keep my side of the street 'open'.

I have had people who know me for years say " I didn't know anything was

wrong with you " . As I explain a bit about CMT I clarify 'nothing is

wrong' - I just have CMT, and sometimes have special needs.

Perhaps growing up with CMT and having no big deal made of it helped;

perhaps just being normal (for me) helped. But I really feel that living

with CMT for 41 or so years taught me how to live with it, trial and

error, sort of. And I'm still learning.

My Mom's last piece of advice for me - upon her deathbed - was 'make

things easy on yourself' was perhaps the single greatest advice I ever

got.

~ Gretchen