I was going through a really rough patch a few years ago when I first decided to go on the web and see if there was anything remotely like what I have. I wasn’t far in to a new job after university, and had just broken up with my long-term girlfriend over telling her.
It had been so tough working up the nerve to tell her, but I’d been depressed and she noticed something was going on. I’d kinda hoped I’d feel better and that she might support me, but she didn’t say much after I told her except that she’d have to think about it. The upshot is that we split up shortly thereafter. It worked out in the end because I met my lovely wife, but I’m definitely more nervous now about telling her because of what happened before – I’ve got a lot more to lose now with her and the kids.
I didn’t hold out much hope for finding anything – even on the internet – because I thought what was wrong with me was just too weird and abnormal. But, lo and behold, the internet proved that you can find just about anything on there. I didn’t even know how to phrase it at first. What do you search? “Don’t want my leg”? “My leg doesn’t belong to me”?
Was I ever surprised – and so relieved – to find that other people feel the same way, and that there’s even a name for it that some people use (Body Integrity Identity Disorder). It was such a tremendous comfort knowing I’m not the only one who feels like this – there are people from all over the world and they’re all from different backgrounds and careers (I’ve come across lawyers, teachers, and scientists, to name only a few).
I’ve also been interested to learn that there are actual research studies going on about it. I’ve read a lot of material on it since, including the studies by Dr. Michael First and Dr. V.S. Ramachandran. The studies showed me that people are taking the condition seriously in medical and scientific circles, but they don’t really offer any treatment or management ideas yet. Luckily, I also found a few websites and discussion groups run by people who actually have BIID or consider themselves to be transabled.
There were a couple of major sites that have helped me over the years: www.transabled.org (which, sadly, is now defunct and can only be found through the Wayback Machine); http://www.biid.org/ has info but no discussion group like www.transabled.org did. These sites had a ton of info about the most recent research going on, media stuff, and how people are actually living with BIID.
I’m also now part of a couple chat groups. I’ve met a few online friends that way, and they’ve helped me enormously. Through the discussion groups, I learned how others have coped with BIID, through pretending and support and such. The online groups and websites have definitely supported me and helped me to not feel so alone, though I’d really like to be able to tell my wife.
The acceptance, lack of judgement, and advice in online groups have been a huge support for me over the years.