Month: March 2019

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.

I thought I should give a little of my own background, especially about how long I’ve wanted a leg amputation and how it’s affected me until now.

When I was 9 years old, I was out grocery shopping with my parents.  When we were heading back to the car, I saw someone who had an amputated leg (I don’t know how they lost it – veteran, maybe? Industrial accident?) and was fascinated. I wasn’t shocked or repulsed or anything like that.  I vaguely remember asking my parents about the man and his missing leg, but I think they just passed it off as an unfortunate thing that had happened to him.  I wasn’t convinced that it was a bad thing – what was wrong with him?  He got around fine. It wasn’t the defining moment of my life – not a significant realization or anything –  but it did kind of cement the idea that amputation was possible, just a thing that happens for some people, and not necessarily a bad thing.

Over the next few years, the idea of only having one leg came and went.  I regularly tied up one of my legs (always my right one) and hopped around my room. Once, my parents caught me doing it, but I said I was playing pirate or something.  Even then, I knew that only wanting one leg was strange and not normal, but yet it felt right when I did it.  After that, I had a few scares with nearly being found my older sister and younger brother and stopped doing it so often.  The last thing I wanted to happen was them laughing at me, even though I felt good pinning my leg up.

The feelings of wanting my leg gone never went away through my teens.  In fact, they intensified.  The older I got, the more I thought I was crazy – I’d never heard of anything like it.  What kind of person wants to get rid of their own leg?

We didn’t have the internet yet, so it would be a few years before I could search the web and see what was wrong with me or if there was anyone like me in the world.  I didn’t want to tell anyone because I was so ashamed of what I want to do.  Keeping it to myself has been a huge part of my anxiety, but yet I know that that’s how I’m supposed to be.

I wasn’t too sure about starting a blog.  After all, once something’s on the internet, it never really disappears.  But I’ve also been having a hard time lately.  I want to be transabled, which means that I want to have a physical impairment even though most people would say I’m able-bodied.   Some people call it Body Integrity Identity Disorder, though it’s not yet made it into the DSM (the Diagnostic and Statistical Manual of Mental Disorders).

There are different ways that BIID shows up: some people want to be blind or deaf or have an amputation.  I want to amputate my right leg right below the knee.  Of course, that’s not going to happen anytime soon.  There aren’t many – if any – surgeons who are willing to perform these kinds of surgeries.

The pressure of having BIID has been increasing.  I haven’t told my wife about it, but she can tell something is bothering me.  I’ve had the desire to lose my leg since I was a kid; I thought it’d go away over time, but it hasn’t.  I’m hoping that writing on the blog about my experiences with BIID will help me come to terms with it, or at least manage it better.

You can read more about me on my about page, including my hobbies and what I do for a living.  You can also email me anytime.  I’ve been finding that talking to other people online about my transableism has helped me cope with it a lot better.