Neurofibromatosis?
Question:
I'm 19 years old and of course people aren't always the biggest support for me.
I'm just wondering how anyone with NF over came the self-consciousness and made friends?
I don't let it stop me from going out; because I don't care for strangers that I'll never see again. Which would be ridiculous to do anyways.
I have like 5 friends,
but I'd like to expand myself to others.
Except that I don't know how to.
I just feel like I'm not good enough for some people.
and I always fear that I wont be able to keep up and
it will just embarass me and just make them mad.
I feel like I can only be around people who are willing
to have calm hang outs.
I'm too embarassed to tell people my limitations.
I feel they wont like me.
Can I have advice?
Answers:
I am sorry to hear about your diagnosis. At 19, it may be difficult to find mature friends! Have you been to the NF link at http://www.nfinc.org/?
There may be other support groups that can help you cope with other people's insensitivity. Never be embarrassed about your limitations; this condition is not your fault and does not make you less "better" than other people. People, especially young people who do not know what NF is, may fear you have a "contagious" disease. Young people are very cruel about, and intolerant of, anyone who they think is less than physically perfect. You may have better relationships with older and more mature individuals who realize that it's what's inside, not what's outside, that counts.
With everything that can accompany NF, a few Café au lait spots (which they normally require 6 to use that as a sign of NF) is not too bad. My sister in law is 5 and has had over 26 MRIs, quite a few surgeries, etc due to NF1. My mother-in-law did not know she had it until her last child was born and became very ill.
My suggestion is, if someone is going to judge you based upon a few Café au lait spots and a leg disability then they HONESTLY are not worth YOUR time. Do you put yourself down or in another "catagory" just because you have NF. This does NOT define who you are no more than my ADHD defines who I am or my son's autism defines who he is. You are a person of value.
Make a list of things that you enjoy doing. If you enjoy horseback riding (my passion...) then take some "group lessons" -even if you don't need them - to meet other horse people. Go to coffee shops, join a book club, volunteer at a nursing home...
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