transabled.org

After I came out to people I know, two of those closest to me had interesting revelations. One of them said she had intense desires for her legs to be paralysed and to be in a wheelchair, from ages eight through twelve. She said those feelings went away. The other person wanted to be in a wheelchair around age five and six. Later, in her twenties, she would often pretend that her legs didn’t work. She “pretended” with a cane full time for an entire year. She also says those feelings went away.

I don’t know if these are examples of BIID or not. Are there other things that might make one have such feelings? Does BIID comprise a whole spectrum from very mild to very severe?

Regardless of the answer to those questions, there are clearly quite a lot of people out there who have these feelings. I was utterly silent about my BIID for my whole life until early this year. If I was so scared to admit this, then there’s a whole bunch of other people out there too scared to admit it. We really have no idea what the true incidence of BIID might be.

Oh Zoe, I’m absolutely convinced there are FAR more of us than we imagine!

I’m currently reconciling my life, identifying markers that I reconstituted into something else for my sanity.

Yet, I recalled a specific series of conversations shared amongst a close bunch from my university days. I remember what I said to initiate a discussion one night and what my friends said.

I am 100% convinced if I said to that group – “I NEED TO BE PARALYZED” my life would be different today.

I wish I spoke up. I’m confident two people from that group, while I doubt they have BIID, *have* intellectually entertained thoughts DPW, and the subjects are related.

Gordo, I think you hit it on the nail. There are likely a lot of people “out there” who have BIID but don’t know that’s what they have. They suffer in silence. Not good at all

Yeah, I didn’t know what my “condition” was until what…6 weeks ago??? I’m in my late thirties. Darn shame..

I wish there was a way to find more people without seeming creepy… If there were more of us, maybe we would finally be accepted by the medical community?

Tora, more of us wouldn’t necessarily mean that the medical community would “accept” us, but it certainly would help generating more research into causes and solutions for BIID. One of the stumbling blocks encountered in the discussion about including BIID in the DSM was that there is such a low number of people who have it that it would be almost counter-productive to do it.

We need more people stepping forward to take part in Dr First’s latest study to try and get the ball rolling.

Try again, Gordo. It took a little persistence on my part to get the interview set up.

I agree on that. If anyone here has contacted Dr. First once and he hasn’t responded, try again! He seems to not be too great with email, but aside from that he’s a really nice guy, pleasant to talk to.

I didn’t get a response initially as well, but I tried again and eventually got ahold of him – so it may take a couple times.

In my case my option to get involved in the full-scale study is limited – but I offered as much information as I could (and got a similar answer as some others have about the theories they have).

I, too, didn’t really have a name for what I felt until recently as well. I’m sure there are many more that still don’t know (many being used subjectively…we’re likely still a small number).

…as for the people Chloe speaks off – I could see that being very possible, that people couldn’t rationalise it, so they kind of just put it away. They could very well still have a little ‘feeling’ back somewhere, but there could be other things that just are dominating their thoughts that they ‘don’t have time to think about it’. I’ve found in my personal experiences when I have other distractions, it seems easier to not think of BIID.

Back in December I got a pretty prompt e-mail response from Dr. First in which he mentioned being rather backed up because of the number of responses to his announcement. I will confess that I am so everlastingly paranoid about being outed, even inadvertantly somehow, that I have not followed up on it. I know I’m being irrational, I just can’t help it. Kinda like the BIID itself, right?

I know how you feel Brice, however, Dr First is one of the few people involved in BIID research that I trust 100%

Brice, first of all, you DO NOT have to give Dr. First your real name. If you are even worried about him having your telephone number get a temporary Skype account and talk to him on the phone through Skype. He’d never be able to track your real identity down that way. Dr. First is 100% trustworthy, but that’s one way to get it done if you’re worried about it. I did that with a journalist once, worked fine.

I know, I know. Like I said, I’m not being entirely rational about this, and I know it, but I don’t know how I can make myself be rational. Nor is it that I don’t trust Dr. First. My fear is that it would somehow come out that I had been in touch with him, through phone records, stuff like that. I do appreciate your concern.

I know, it’s scary stuff, regardless.

but it certainly would help generating more research into causes and solutions for BIID.
***
That’s what I meant. :)

I understand that, Tora, and someday maybe, hopefully will work up the courage needed.

Well, having a desire to become disabled, having one’s own image as such, isn’t a crime, isn’t it? (although, of course, disability is not normally regarded as desirable nor advisable) Contemplating the idea of voluntarily injring oneself to achieve such an image might be regarded as a crime in some countries. Effectively injuring oneself is, technically speaking, a crime in most countries (I believe). But above all, what we are all talking about is a condition that requires some attention. And, apart from insurance companies refusing to pay for self-inflicted injuries, I don’t think there is a risk of being sued (and jailed) for what we are and what we do.

However, there certainly is a strong sense of guilt attached to our condition, for a lot of us. And it takes/took us a lot of time to overcome this devastating feeling…. well, that holds for me (and I’m still working at it !). In any case, is it not legitimate to remain anonymous if we feel there are risks of sorts? (and I do… I was often misunderstood and hastily judged negatively)

Other than that, I must say that I have come across a number of people whom I thought might be pretenders or wanabees of sorts. I saw once a guy on the street who was obviously pretending being one legged. He was standing against a wall and leaning on a pair of crutches. Other (ordinary) people may not have noticed it, but, as a pretender myself, I immediately saw he had his leg bent inside his trouser’s leg, underneath his long raincoat. I think there is a number of people with some form of BIID out there in the big world, but perhaps the others live it differently. They might not regard it as a problem, or maybe it is not as intense, or they just feel comfortable with it, or they just “happen” to have an accident and really become disabled without even knowing they actually (unconsciously) wanted it… and there are those who knowingly achieved the disability they felt compelled to have and lived happily thereafter (or not), if I believe what I can find on the Internet; there’s also those who weren’t BIID sufferers but who straightforwardly state that their lives picked up after they became disabled…. etc, you name it.

P.S. Sorry this got so lenthy…

Just wanted to add that I don’t think I would ever have fully admitted this (BIID), either to myself or to others, if I still thought I was alone. The fact that there are others makes a huge difference to me.

Tom, no problem about lengthy ;)

As for criminal to self-injure, I am not aware of any legislation to that effect in the US, Canada, UK, Australia, NZ, South Africa, and other countries. It is also not illegal for surgeon to provide elective surgeries such as we seek. There may be ethical issues from the medical point of view, but not from any legal point of view.

I contacted Dr. First a few months ago (email)- before I found these groups etc…
I didn’t get a reply, but I was (still am!) pretty paranoid about accidentally ‘outing’ myself if a reply does come in unexpectedly. I don’t think I could cope with that drama just at the mo!!

I’ve actually become less concerned with outting myself after talking about these issues with all of you!

I appreciate that this isnt a position which was acheived without due and proper consideration, however, i really do feel that i am starting to come to terms with the fact that i am who i am, and i dont need to apologise for that.

I’m not completely there yet – and one of my concerns continues to be that if i go missing one day, the police are going to track back my internet usage and assume that i must have run off to assume my life as a paraplegic (and can i just say for the record, if i was ever going to do that – i would post the fact here (and so, if i do actually go missing, please make sure the police keep looking for me!)

I dont mean to make light of your concerns – i certainly do share them. But, i also do beleive that the only way that we are going to acheive progress in the treatment of this condition is to be open and honest with the medical profession.

I’m not suggestion that we should do this without due care and consideration of our privacy, all i’m saying is that over the years i’ve become less and less worried about my personal identification and more and more concerned about the identification of the condition in the psychological spectrum.

I would urge anyone to continue to try to communicate their point of view to the medical profession (anonomously where necessary and possible for your own sake). But also, i do hope that one day we’ll be able to stand up and speak out openly about these matters.

Zoe, I too have become less concerned about protecting my identity. Nine days ago I gave my annual talk to psychology students about the psychological consequences of being intersexed. Afterwards, the psychology professor, whose guest I was, invited me to his office to chat about BIID. He expressed an interest in having me talk to his class about BIID, if he could figure out a good slot for it. This is something I would absolutely agree to do. A year ago I had never told anyone explicitly about my BIID. Now I would be fine with being on stage in front of more than a hundred strangers and explaining about my BIID. The opportunity to educate some of the next generation of psychotherapists about this is plenty of incentive.