The condition I have (CMT) is mostly a hereditary condition, so even if people with CMT don't have "friends" to talk to, then there is usually at least 1 other person in the family with the same condition. However, I am adopted and until I joined Facebook I felt so totally isolated, living in an outdoorsy family, not able to join in the family fun (even to this day I sometimes feel like that in my family, they don't intend on isolating me and indeed they do try to be inclusive, but that's a conversation for another day).
Facebook brought to me a world of new "family" members, others with CMT. I have not met a lot of them, indeed some are not even in this country, but having them to talk to and compare notes with is invaluable to me. The internet also brought me to CMT United Kingdom, and in turn to the Annual Conventions they hold each April. I've been to 3 (or is it 4) of those now, and they are the time I look forward to most in the year.
But what if I didn't have the internet? No doubt I would still be feeling all alone. I wouldn't be armed with the wealth of knowledge that being part of the CMT community brings me. I wouldn't have the confidence to lead the management of my condition where it needs to go, and I wouldn't be under the wing of an awesome Neurologist at a leading Neurology center (thank you Dr R)!
I would probably still be reliant on the half-arsed doctors at my local hospital. Worse still, due to the lack of knowledge and confidence the internet has given me, I would probably be unaware that the local neurologists didn't actually know much about CMT (for I had to correct them myself on several occasions, which they didn't appreciate!).
But luckily I do have the internet, and I have so much to thank it for.
In addition to friends with CMT, I have also found friends with other illnesses. I feel it is important to have those around me who understand how difficult it is just to live life.
So, if you are out there, reading this blog and you have CMT, then join the various groups on Facebook, particularly the CMT UK one. Similarly if you have any illness, the internet can form part of a wonderful support network.
CMT UK's tag line is "Together We Are Stronger", and this is just so perfectly true.