However, I am left thinking that maybe this is like MS where a genetic predisposition needs other triggers before the MS becomes active. Could it be that those of us who have suffered sexual abuse or childhood emotional neglect are more likely to have more likelihood to develop BIID but (and this is the important bit) there needs to be some other inbuilt genetic or brain damaged neural wiring too? What I’m saying is that the therapy route won’t work (alone) because of the underlying physical cause and it is both this and some other childhood trauma which makes us victims of some form of BIID.

The situation being that the medical fraternity hasnt been able to provide us with an answer (whether or not they’ve looked hard enough is in question), and so we are all looking for something that might unify us (hey, i’ve made my own share of personal suggestions, infertility, munchaussens by proxy, etc.).

I think the effort is useful if only to make the point that BIID can strike anywhere - and there does not appear to be (at least anything that anyone has found to date), a unifying factor which will determine whether one develops BIID or doesnt.

Perhaps, (and hoping not to make too many enemies on the board because i’m not up to date on the issues and historical aspects), but perhaps similar discussions would have been had in the early days regarding homosexuality or transsexualism? And if so, does it really advance the argument by trying to work out why, but rather should we concentrate on how to move forward?

When I started to pretend being one handed for longer periods of time, a few years ago, I experienced something strange. The first time it happened, I had spent the whole day not using my hand and I had gotten to a point where I didn’t even notice I was one handed any more. It felt perfectly natural. It was rather strange, but I think I must have somewhat modified my bodymap. It became even stranger when I decided to stop it and to become two handed again. I could still use my hand (after I removed the bandage), but it felt weird, as if that hand didn’t really belong to my body. This feeling lasted on and off for several days.

Now, I’ve been doing this so much (being one handed at times, two handed at other times) that I switch between bodymaps without even noticing.

Of course, I don’t know if this is what really happens in my brains, it’s just the way I feel it.

A noticable fact is that we were all disabled once. ALL of us. When we were babies. We were looked after. We had nappies. We got around in chairs with wheels. We were fed. And then we grew up. And we had to look after ourselves by ourselves. Little things to start with. Walk. Look ahead when you walk. Become responsible for yourself. Take solid food to your mouth by yourself. Etc. For some unknown reason, we were quite happy with some of our new responsabilities and duties, and not so happy with other ones. We all experienced this in different ways. Events may have happened which made us want to go back or caused us some permanent nostalgy of our previous state where we didn’t have to be responsible for certain things. Big accidents happen in some cases, or tiny ones. Tiny events can have considerable impact on a child and have more powerful and long lasting effect because they were unnoticed and are not identifiable as traumas. It all depends how the child percieves it.

I’m not saying this is an explanation for what all of us experience with BIID. But I believe this surely plays a role in attraction to disability. Imagine a 4 to 6 (or 10) years old child in a neglecting family, or a family that goes through some dramatic event (like a divorce, death, etc), or a violent family, etc. At this age, this child is old enough to feel a sense of danger and to somewhat perceive the scary world of the adults around him/her without being able to fully analyse things. And the child is also young enough to have clear memories of a time when he/she was taken care of and felt safe. I believe that such situations can leave a deep emotional mark. The origins of it are quickly forgotten as unpleasant memories, but the emotional imprint will stay and may exert considerable influence on one’s life, especially as it is not conscious nor recognized.

Perhaps is it also possible for such ancient imprints to be re-activated later, again by some emotional accident. And again, these accidents are not necessarily identifiable as such. We get through lots of events in our lives, and we fail to manage properly a number of them, especially as children and teenagers. We feel shame, or pain, or frustration, or anger and we do the utmost to forget it and bury it deep inside us.

In my own story, I wonder if the accident I had that left me with a temporary disability was a real accident. Thinking about it, I seem to remember that I had wished something happened that would free me from the intolerable situation I was in. And this was at an age when I was able to percieve that something wrong was going on but it was impossible for me at that time to analyse, to understand and to decide on actions, especially as there was no one around me I could have talked to. I’m not saying I planed the accident. But I am almost sure I wished it.

My childhood after seven years old was, for the most part, very lonely and miserable. I definitely felt emotionally neglected, and unable to express my feelings to anybody including my parents. My sister feels exactly the same emotional neglect, so it’s not just my perception. However, my BIID feelings with regard to my legs being paralysed were clearly present by the time I was four, when I was quite content and without any other psychological issues.

I believe that my BIID pre-existed any psychological influences. However, I also believe that later psychological events might have affected the intensity of the BIID, as well as some of the details.

I was not aware of my other rather minor secondary BIID, if that’s what it is, regarding amputation of my left hand until I was nine years old. I have not been able to come up with any psychological connection whatsoever that would explain there being anything special about my left hand.

Tom, thank you for putting yourself out there with another very intense and stimulating post. I am wondering if you think it is possible that your BIID existed from a very early age, and your dramatic and unfortunate circumstances brought it out into consciousness with great intensity?

Yes, I have spoken about that in the past but now I’m pretty suspicious of this whole line of reasoning. We are all so concerned with understanding WHY and HOW that we grasp at anything that might conceivably make sense. I did, too. But now, with the scientific research being done by Ramachandran and McGeoch I really believe that BIID does not have it’s roots in psychology. It’s a congenital defect in the part of our brains that processes body image. I believe that the psychological connection is secondary, not primary, and not causal.

Then, of course, the literature and research is so limited that sometimes I have to wonder just how accurate it is. My personal interactions over the last 12 or so years with people who have BIID doesn’t tend to show much of a pattern that way. As I’m (slowly) preparing a BIID survey, I’ll include a question/section about abuse :)

Me, for instance… I was loved, very much so. And it was unconditionally “Sean can do no wrong”, that is, every thing I attempted as a kid was rewarded with positive reinforcement, to the point that I cannot trust feedback now, because I never know if it is deserved or if it’s just said because one must positively reinforce a child.

I’m quite weary of saying that the absense of emotional warmth in childhood is a theme with BIID. Certainly many people have experienced it, Claire has spoken about that, for example. But I wouldn’t try and find this as a cause for BIID. Unfortunately, it’s not that simple. If it were, then psychotherapy would have a greater effect on appeasing the BIID anguish.

I’ve met many people through work who are ’survivors’ of CSA and for them the conflict seems so often about the SA as a substitute for unconditional parental love. It wrecks trust, self belief, intimate relationships, everything.

My heart goes out to you, Tom.

I was never a victim of CSA, but of emotional neglect, which has left me, like you, starved of warmth and unable, seemingly to know how to get it consistantly from others. No long term friendships, no sexual relationships, just an emotional void. That’s where BIID comes in.