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I’ve mentioned pretending a couple of times in earlier blog posts and have gotten a couple of emails from other people with BIID asking me what I do.  As I live in small city on the east coast of Canada, it’s super hard to do anything as there are always good odds I’ll see someone I know.  I have tried going out to small towns a couple of hours away. To keep my family or friends from noticing, I bought a foldable wheelchair that I keep in a sports bag.  I just stick it in the trunk when I’m heading somewhere by myself for a short time.

Otherwise, I’ve pretended on a few work trips and conferences to larger cities like Toronto and Montreal.  I can’t really take my wheelchair then, but I do have some foldable crutches I can stick in a suitcase.

I started pretending years ago.  People in the online BIID community had a ton of experience and advice before I started, so I spent a lot of time reading people’s stories about how they handled everything.  It came up repeatedly as a way that helped them manage BIID, even if it never got rid of the condition entirely.  I then searched out foldable options for wheelchairs and crutches because I wanted to be able to hide them easily if needed.  They’re also a lot cheaper than the full-scale models.  I’d like to tie my leg back like others have said that they do, but it’s hard with family around.  I’ve only been able to do it a couple of times when my wife takes the girls out.

The first time I pretended I barely knew how to use a wheelchair, but I felt such an amazing sense of rightness and relief.  I felt like myself, if that makes any sense.  It’s just how my body is supposed to be.

I’ve read criticisms that say things like people with BIID aren’t prepared to face the realities of daily life with a disability, but I don’t see it as having a disability.  For me, the true problem has been having the leg in the first place; my work and family life has been affected, as has my mental health.  I can learn how to handle a wheelchair or crutches or places that aren’t accessible.  Most people with BIID I’ve read about in studies or talked to online who have managed to get an amputation have reported being much happier afterwards.  Some continue to do activities like hiking, biking, and skiing while others have noticed a greater interest in volunteering.  They admit that it isn’t usually easy to navigate all the time, but it’s worth it for them.  If I can’t get an amputation of my leg done anytime soon, pretending helps me dream about what life could be like if I did have it.

I’ve thought a lot about pretending.  I mostly use a wheelchair when I can, but I daydream about using crutches occasionally or what kind of prosthetic I’d get if my leg were ever amputated.

This whole transableism thing has been really been bothering me at work.  Usually I can kind of manage – at least keep it dampened – by going on BIID sites or pretending or keeping busy with family activities, but it hasn’t been working lately.

I’ve been taking a few days off here and there.  Thankfully, I’ve got a few sick days built up; I know not everyone has that luxury.

The problem is trying to explain it to my family.  I’ve told my wife that I just haven’t been feeling well lately – a cold or stomach flu or something.  But I know she’s worried there’s something else going on.  I want to tell her so badly, but I’m too scared of what her reaction will be.

I also can’t exactly tell anyone at work and there are only so many excuses I can come up with.  But I can’t keep going this way.  It gnaws at me continually and I’m so anxious about what I’m going to do or if I should tell someone or what.

I started psychotherapy with the psychologist a month ago and have been squeezing in an appointment once a week.  Luckily, I’ve got decent health insurance through work, and I fit the appointment in on my lunch break (good thing because summer is busy with the kids off school).

I got a referral to see the psychologist from my family doctor; I was having such a hard time at work – and still am – so I thought I’d at least try going to some kind of therapy.  At my regular doctor’s appointment, I was terrified to say anything about my transableism.  I’ve never told anyone except my ex, and that didn’t go particularly well.  So I didn’t end up mentioning anything about it – I just told her that I was struggling with severe chronic anxiety.  She prescribed me Ativan and put me on the referral list for the psychologist.

My psychologist didn’t even know what BIID/transableism was when I told her about it at our first meeting.  I had a really hard time opening up about it, too, but I can’t keep it in any longer.  It’s getting harder and harder to function on a daily basis.  The thought of my leg is taking over my head all the time now, and I’m noticing myself snapping at my wife more and more and not concentrating at work.  I forgot my daughter’s basketball game on Tuesday! The last thing I want is for this condition to affect my relationship with my kids…

So – to the psychologist.  She’s been trying to be helpful, but she’s obviously read how it used to be called apotemnophilia, which basically means it was classified as a sexual perversion.  I keep telling her that there’s nothing sexual about it for me.  I know some other people in the online group are attracted to amputees and there are others who get aroused by their desire to be transabled.  But a lot of us don’t – there’s nothing sexual about it for us.  I’ll continue educating her about transableism and BIID, but I don’t know if these sessions are really useful for me at this point.

Pretending has been the only thing that’s really helped, but I’d hoped that therapy would give me a way to deal with it better or even get rid of it entirely.  Similar thing for the meds – I was hesitant to start them because of side effects, but I thought they’d dull the roar, or at least help me with the anxiety and depression.  I should have known it was wishful thinking – therapy and meds haven’t worked for anyone I’ve read about in the medical/psychological research or in the online groups.  There’s no other treatment that I’ve found yet, nothing except actually getting rid of the leg through surgery.  I feel like I’m sinking.

Drawing helps me process things, and I drew this comic after seeing my family doctor to try to deal with attempting to tell her about my transableism.

Page 1 of “The Doctor’s Office”

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.