transabled.org

Dear Sean,

you are great, and the work you are doing here and on http://biid-info.org is so precious for so many of us. Thanks a lot for keeping us informed so thoroughly and at the same time in a comprehensive way!

The authors make some very important distinctions and question some approaches.

They write: ““but in no case was there evidence that the therapy significantly reduced the intensity of the desire for an amputation“. Well, I think this applies to most therapeutical trials, but maybe not to all. Elizabeth has described here and in the forum of http://ahiruzone.com how an “alternative” treatment has helped her. Aglaja Stirn, Silvia Oddo and Aylin Thiel claimed in their (German) book “Body Integrity Identity Disorder (BIID). Störungsbild, Diagnostik, Therapieansätze” (http://www.beltz.de/de/psychologie/fachbuch/titel/body-integrity-identity-disorder-biid.html) that their therapeutic interventions have helped to reduce the urge or the desire itself in some patients. I have no means to verify their claim, I just know one of their patients who says it helped not at all.

The German BIID forum (http://biid.amputierte-woelfin.de/) has a member who says he was able to “tame” his BIID (without therapy).

So there are single statements which could be interpreted as (self-) therapy success, but I don’t know of an empirical study about BIID therapy trials and outcomes.

There would be more to say, but not everything has to be said (at least not by me :-)).

“[I]t is also possible that these brain findings are a consequence of years of experiencing one’s limb as not being part of one’s body, rather than the cause.” and “The question of BIID’s etiology is sometimes framed as if there must be an absolute distinction between ‘congenital and developmental’ (or ‘neurological and psychological’) cause for BIID.”

It seems possible that our brains can be remapped from forced or habitual behavior. If a person willfully refuses to use their left hand, would the brain be remapped? I’ve heard of cases where prisoners kept in solitary confinement with no light became blind, and I’ve also heard where the same visual part of the brain of sighted people while reading text is activated in blind people while reading braille. Probably just one more worm from the can to think about, but could our wheelchair use or amputee pretending cause the same change in the brain that Ramachandran’s study reveals? Dr. First’s study seems to explore that possibility.

Maybe I’m just bent on figuring out whether I’m responsible for my life being so screwed up or whether this is just another thing that randomly happens to people. Can one small thought gain an eccentric imbalance and propagate itself? Yet so many who have gone through psychological therapy claim that they have no improvement- are we insistant in protecting the investment we have in BIID?

One way or the other, my ass is getting kicked.

I haven’t read Dr. First’s study, again, the price tag is prohibitive.

@ Mark: You say “whether I’m responsible for my life being so screwed up or whether this is just another thing that randomly happens to people.”

Good question, but maybe of a similar character like the one Prof. First is criticizing.

What do you mean by “responsible”? Certainly not in the way that we have consciously chosen this suffering.

Maybe it’s a mixture of genetics, problems during pregnancy, early life experiences etc. – and of having become a habit?

Or maybe there is more than our science dares to dream of?

The more interesting question is: What can we do to make it better – to feel better?

People who meditate or juggle show certain characteristics in their brain scans. But some of us have tried meditation and other things for years, not with the desired effect.

Maybe the next study should be about people who have only a light form of BIID, whose desire wanders and changes, who experience a strong up and down of their wish – and about the question how we live with BIID.

@Phil: By “responsible”, I mean an unconscious or subconscious decision or choice. Even that doesn’t explain what I mean exactly. Perhaps a point of curiosity that I was exposed to and unwittingly chose to follow, then finding myself neck-deep in it. In any case, something that can’t be called idiopathic but somehow by choice, and that not being an overt conscious choice. (I’m really getting myself tangled in my words here…)

The brains we have are beyond our comprehension…

I know one treatment that works… at least for me. After six months of almost full-time use a wheelchair during the day, all I can say is the difference in my mental health is astonishing. I went from being desperate and seriously considering some awful things to not really wanting to be paralyzed at all. I’m pretty convinced BIID is a congenital sensory disorder and the desire to be (insert disability here) is the psychological manifestation of the sensory malfunction. I still feel the sensory disruption and my legs do still bother me, just I have the tools available to me now to combat the disorder and psychologically that makes all the difference.

@Xavier: Same with me (to a degree). I still want paraplegia, but full-time wheeling has done a lot to end pacing and the constant “BIID mental noise”. I’m much less the neurotic knot I used to be.

I agree with what Xavier says here “I know one treatment that works… at least for me. After six months of almost full-time use a wheelchair during the day, all I can say is the difference in my mental health is astonishing.” My experience is identical and, like Xavier, the feeling of desperation is gone. However, for me the desire for paralysis has not gone. What changed is that the desire no longer negatively impacts my mental health.

Overall I agree with Sean that this paper is really really good, though I haven’t actually read it yet. And kudos to you, Sean, for your part in this being recognised as not just about amputation.

Perhaps I am nit picking, but a sentence in the section about comparison with GID really grated on me: “Spending time physically pretending to have acquired the desired identity is an important feature of both (e.g., cross-dressing, pretending to be disabled).” This is not only condescending but also semantically incorrect. It would have been easy to say more accurately “presenting in accordance with one’s identity.”

I do not desire the identity of being paraplegic. I already have that. Nor do I remotely feel like I am pretending anything when I am in a wheelchair. Besides that, I already AM disabled, thought not in the way I want.

The language is equally wrong for gender issues. When I was forced into a male gender role as a child, I did not desire to have the identity of a girl. I already had that. And when I was able to present as female again, it was NOT cross-dressing. If a person presents in accordance with their gender identity it is not cross-dressing, regardless of their anatomical status. It would be cross-dressing if, for example, someone with female anatomy and male gender identity presented as female. Of course the whole concept of cross-dressing assumes validity of a gender binary in the first place. What does a cross-dressing genderqueer hermaphrodite look like?

Thus spoke the abilityqueer somewhat disabled majority time wheelchair user. :o)

@Phil, yes, there is some anecdotal stories that some therapy may reduce the effect of BIID. We need to hear about those more. I know of one person who cut out all ties with the BIID community, did some kind of therapy and claims it is not “bothering” here anymore, but then she also said it was hard work keeping it at bay – to me not a great sign of success. Elisabeth’s successes, well, I don’t know. As I told her in email, any time with a reduction of the desire is good time, but I question whether the low of the BIID is a result of the therapy, or the result of a natural ebb & flow of BIID, or again the result of feeling better about BIID because she’s doing something about it. I understand that BIID is poking its head back into her life right now.

I do think therapy is beneficial – if for no other reason than to help us handle the stress caused by BIID.

@Xavier, @Mark, @Chloe – The use of a chair is the *only* thing at this point keeping me functional. But I can also tell you from my vantage point of having been “full time” for 15 years that after the first few years of it, BIID does come back. I’m sorry to say I don’t think your situation will remain as is – but most definitely enjoy the relief while it lasts.

@Chloe – your nitpick is fully warranted. I picked up on a few things myself. But… I’m chosing to focus on the positives of this paper, and there are many. This is dynamite stuff, really.

@Mark – you’re not responsible for having BIID. No more than you’re responsible for being gay. I suggest that the idea of “choice” implies consciousness. If something happens at the subconscious, it isn’t a choice. It is not something you have *control* over. Give yourself a break, stop beating yourself up over this.

@Phil’s question of “what can we do to make it feel better?” is an important one. I suspect the answer to that will vary depending on the person and where they are at in their BIID journey. Using a wheelchair has been hyper beneficial for many people. But at one point it becomes not enough. I just wish we had ALL the options open to us, not just a handful of ones.

@Sean: I’ll take what I can get… I like being able bodied, it has serious advantages in many situations. I just hope finding relief now doesn’t result in more pain later.

oh yeah, take what you can get. Definitely :)

@Mark: “It seems possible that our brains can be remapped from forced or habitual behavior. If a person willfully refuses to use their left hand, would the brain be remapped? I’ve heard of cases where prisoners kept in solitary confinement with no light became blind, and I’ve also heard where the same visual part of the brain of sighted people while reading text is activated in blind people while reading braille.”

Actually, they did experiments like that with monkeys and kittens, and found about the same conclusion. However, an experiment was done where one hand of a monkey was restricted in a leather mitten for a year, so that both movement and feeling were diminished. Within a month, the sensory function of the hand was back to normal and the monkey was using it just like the other hand.

I just read the paper and found it very accurate, pretty much sums it up well. We’re not delusional, not psychotic, completely aware of how weird this is and that it’s internally generated. How we’ve intentionally hid this disorder out of fear. Need inclusion in DSM.

Seeking help for a something like this is very difficult. He hits the nail on the head about our fear of professionals jumping to wrong conclusions, using inappropriate treatment options, etc. Therapy can help if the goals are set properly. Overall win.

@Chloe: The choice of wording in the article may have been with the article’s target audience in mind- this was probably written to accomodate Dr. First’s colleague’s realm of understanding. Nevertheless, your phrasing does seem more apropos.

@Sean: Thanks. I’m not responsible for having BIID and I accept that. It’s my nature to beat myself up, and if I had a cent for each time I heard “stop that!”, I would easily afford the corrective surgery! What you say about temporary relief sounds so hopeless, though. Thanks for the warning, perhaps I’ll be prepared for the repercussion. Regarding Elisabeth, I think she hates having BIID more than most of us and has opened herself to an alternate therapy since none of the others worked for her. If it is indeed poking back into her life that just shows how resistant BIID can be.

@Shadow: I never heard of the monkey mitten experiment. I hoped that BIID in my case wasn’t a learned reaction to something, and that crashes my theory to a point. Somehow, given the strange things the human brain can do, I don’t think that BIID as a learned behavior isn’t altogether impossible.

Thank you Sean for another well spoken review on an academic paper. This one does indeed sound much more promising in its compass than others that have recently come out. To be honest, from what you say about it, this is what I was hoping would come from Dr. First.

I would like to make one comment about a quote you pulled from the paper though.

“It seems more likely that such surgeries would be prohibited by medical centers themselves, either out of concern for medical professionalism or simply to avoid public criticism.”

I think we can all point to any number of instances of surgery, many reported here or in other forums such as Ahiruzone, where refusing surgery out of ‘medical professionalism’ is a joke and a poor excuse used to hide behind. I feel that the second part of that quote is much more accurate and doctors are simply afraid of the criticism they would receive from the public, and more-so their professional peers, for performing surgeries of the type that could potentially help those who suffer from the various manifestations of BIID.

@Ellen_BIID: You know how to hit the nail squarely on the head. One glimmer of hope that I have is that cosmetic surgery and gender reassignment surgery were also scorned in the public eye. Maybe attitudes will eventually change.

@ Sean. Thanks so much for your tireless effort in helping to bring such a study to fruition, Sean, and for presenting it here!

Hi everyone! After reading the comments following this post, I just have to say that I strongly believe that we all need a philosophy of life which empowers us.

Personally, I like to think that I have had choices, and have not just been at the mercy of fate or chance. I believe that I chose (though subconsciously)every single important aspect of my life: Being a transsexual woman, being a combat veteran with experiences which caused lifelong PTSD issues, and being transabled, these being formost among my many unusual choices.

Taking responsibility for who I am makes me feel stronger, and much less the victim. It works better for me this way… Since there seems to be no remedies for BIID, at least at present, I suggest that we begin trying to take pride in ourselves and each other. We are unique, caring and compassionate people, and for the most part open-minded and very accepting. I’m thankful to know you all. Just some thoughts!

@Ellen_BIID: That is a good point about professionalism. We have heard of the cases where, after the dry ice, amputation has been delayed, thereby putting the person’s life at risk, for no other reason than the person having BIID. That’s as unprofessional as it gets.

I read the full paper today, and have to say that overall it gave me a great sense of relief to have my life experience of BIID validated in a formal manner. I could continue to nit pick quite a bit, but this really is a huge step forward.

It is particularly nice to see the proposed diagnostic criteria.

As a participant in First’s BIID study (by phone interview) is there any way I can get a free copy of his paper?

@Roger, you’d have to ask him that.

Thank you for directing me at this article, I found it extremely interesting and kind of helpful in understanding the inclusion of blindess,deafness etc. in BIID (I don’t want to offend anyone, I’m just new in this world and hope reach a greater understanding of BIID).
Sean, when you say
“I have been arguing in favour of including BIID in the DSM. There are definite drawbacks to this, and some can be viewed in the arguments that GID activists are using to get GID *out* of the DSM”, what drawbacks are you referring to? The label of mental illness, maybe? Even if I read your point of view and I understand you considerate it in a not-negative way because it’s a means to an end. We can say that GID community fought for inclusion in DSM to reach visibility and medical treatment and now that they’ve reach it they want to get out of DSM and not being labelled as mental ills?And that, maybe, BIID is following the same process, at least the step of visibility and medical treatment? Thank you very much!

Yoki: You ask a very complicated question. I think I like you already. And you pretty much seem to understand already.

BIID is also a very difficult thing to deal with and one we should not be forced to deal with alone. We need the medical community to take us seriously because when people are forced to take things into their own hands, it can be disastrous. We’re not delusional or psychotic and we need people to recognize our autonomy in making decisions about our own bodies. We need for there to be a recognized treatment protocol so people don’t continue to be misdiagnosed and mistreated with drugs and therapies that have proven NOT to be effective. Right now, with no listing and very little understanding from the medical world it’s like running through a minefield.

BIID is an IDENTITY disorder. That means it affects our core sense of self, of who we are as people. I don’t know where I end and BIID begins. You might as well say, “I am BIID” rather than “I have BIID.” What happens to me if you “cure” me? Am I me anymore? Or am I someone else. I would argue any attempt to forcibly cure us is brainwashing. By insisting we have to be fixed, you are invalidating our entire existence and that’s really unfair. Treatment (or not) should be at the discretion of the patient.

So it’s a double edged sword. On one hand, when you say BIID is a mental illness, it’s an affront to who we are. It’s insulting because we are not crazy, we’re intelligent and ration people, we’re just different than other people. On the other, without it being recognized and listed in a book, we’re stuck in medical purgatory.

Personally, I believe it NEEDS to be listed, I’ve gone through hell because of it. People seriously injure themselves or commit suicide because of this. It’s a very serious issue and we simply can’t continue to let ignorance of this condition continue. Peoples lives and happiness are at stake. I’d rather be labeled mentally ill if it means treatment options can be made available to those who need it.

The term “mental illness” just has too much stigma attached to it for my liking. The term brings up mental images of torturing animals for pleasure. I really don’t see BIID as a mental illness, but more as a sort of birth defect. A birth defect can be something from an oddly shaped toenail to any number of things, in our case, a neurological miswiring of our body maps. If there are so many variation in body shapes and internal organ formation, there’s no reason why the brain should be excluded. It wouldn’t surprise me that the arrangement of gyri and sulci from brain to brain is as different as fingerprints- no two people are exactly alike, all are unique, things go wrong. Even monozygotic twins are different.

Regardless of classification as a “mental illness” or “psychiatric disorder”, it is what it is and needs to be classified in some way or another. “Identity disorder” may be the shoe that fits best- it relates to how we view ourselves, identify ourselves, even recognize ourselves. Yes, I agree: “I am BIID”. I am sane, intelligent, but for this one little slice I am rational. I need treatment!