Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 Dear Deb, I am so sorry if you feel that I was saying " everyone " should " come outI was writing that to encourage another who was thinking of starting a support group. I certainly understand your hesitation in not broadcasting your CMT especially since no one can tell from the outside. For me, I have so many other problems as well as a spinal cord injury that I am used to " walking funny " . I am just blessed to be out of the wheelchair for as long as I can. My daughter was popping wheelies and my husband ran into people when I was sitting in the chair. I once had a chiropractors nurse run after me at the mall (she did not have to run fast) as they were doing a promotional screening and noticed I walked funny. WELL YES I DO lol. I actually felt badly for her when I told her that I have so much metal in me holding me together from rods up and down my spine, to hugh screws in my ankles. She was speechless! I just thanked her for trying to be helpful. You have to follow your instincts and do what is best for you. Candy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 Candy wrote that everyone should " come out " about having CMT and spread awareness, etc. While I agree wholeheartedly in theory, I have not been able to do so. It took me awhile to tell just very close friends and family. (Though I have known the diagnosis less than a year now) I have not told anyone at work, which does sometimes cause difficultites with people wondering about why all the dr. appts., etc., etc. (so far I have been able to blame it on " JUST " carpal tunnel or something). My question is has anyone had negative repercussions at work or elsewhere from " coming out. " Since I do not have any really obvious outward signs, I am able to hide it for the most part. Part of it is that I just do not want anyone to feel sorry for me. Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2004 Report Share Posted June 3, 2004 I was so happy to finally have a name and explanation for my symptoms I told everyone. everyone i told was shocked at my excitment over the news but no one felt sorry for me. My positive attitude that i am still me and i just move slower I believe has a lot to do with how people react to me. Cathleen in Arkansas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2004 Report Share Posted June 3, 2004 Gretchen, I always love to read your input. In my opinion, you are a blessing to this group! You give me hope and I always learn something from your posts. Thank you so much! =) A. Quote Link to comment Share on other sites More sharing options...
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