Lots of activity on this topic. I apologise in advance if I'm not as clear and concise as I could - I'm currently emotionally exhausted and don't have a whole lot of energy to argue. I was just going to ignore this thread but there are too many issues that need addressed.
How is that a "cure" for the condition? It doesn't fix what's wrong inside the brain.
That's a very good question. One that doesn't have an answer at the moment, other than being able to point to everyone I know who's had surgery or managed to acquire the body they needed and say that none of them experience BIID-related anguish anymore.
Some Trans are happy with a partial transistion. Just to be accepted socially as their gender despite their body not agreeing can be enough for some, no need to undergo srs. For others a full transistion is needed so that their body match their gender.
Just like some transabled folks are happy to use adaptive equipment in the privacy of their own homes, others are happy to "just" appear as someone with a disability, and others would access surgery if it were available.
I feel I need to restate this. Transgender is not about a "belief" any more than you believe you are a woman (or a man.) It is not about what people believe, but a fundamental state of what they are. Saying that they believe that a part of them is wrong is like saying that some people believe that they are attracted to people the same sex as them. It is degrading and insulting. Please desist in doing this.
Please desist in making assumptions about transabled individuals without really understanding them.
There is a large segment of the transsexual community that is very angry and upset by people who have BIID - I've encountered many. Seems to me that the most vehement and vocal people in that "camp" have not made an effort to really listen to what transabled folks have to say. Interestingly enough, there are also many transabled folks who are transsexual also.
I have no desire to start an argument about transsexuals vs transabled. So I won't push that here.
I have to wonder about the ethics of a society that will not allow someone who is in constant psychological distress to relieve that distress by means of surgery, yet will allow other people to have surgery just because they don't think they're pretty enough.
Basically, it all boils down to which body parts society thinks are acceptable to alter.
Thank you for that.
To complicate things, the moral and ethical "standards" change dramatically over the years. A hundred years ago cosmetic surgery was both in its "infancy" and viewed really poorly. Things have changed.
I kind of feel that way but then getting liposuction or rhinoplasty doesn't disable you; losing limbs, eyes, hearing, or the use of your entire lower body does. Doctors take an oath to do no harm, reducing an able body to a state of disability is, by all definition, harm.
Do ho narm. That's an argument that is used all too often. I suggest that a surgeon standing idly by and knowing someone is suffering is in fact doing harm. Harm by ommission.
We have to look at "health" from a holistic perspective - the idea that health is solely physical is a huge issue here.
Absolutely, removing "normal" functions of the body is a negative. It has to be balanced agains the positive and the emotional relief of being "whole" (yes, it is contradictory that to feel whole we have to be "maimed").
The other part of that is, cosmetic surgery does not need a doctor's order, limb removal does. A doctor would never order liposuction as a treatment for severe anorexia or rhinoplasty as a treatment for someone with severe dysmorphia because it would be endulging the patient's delusion.
You are comparing apples and oranges. You use the example of anorexia, severe dysmorphia and you speak of delusion to say that surgery shouldn't be offered. BIID is not BDD. BIID researchers have repeatedlly found that transabled individuals are not delusional.
Yes but if you see a young teen literally starving themselves to death (willing to go to extremes) to lose body fat, what would be your response? Would you give them diet pills, offer to help them get liposuction, or take them to a psychiatrist to get treatment for the disorder?
Again, apples and oranges.
Not counting the fact that there is psychological treatment available to people with eating disorders. Yet neither psychotherapy not pharmacotherapy have done anything to help with BIID.
The only thing that does help is surgery. So until there is a psychotherapy or pharmacotherapy course of action, please don't keep on denying us the only thing that works.
and the tragedy of it all is that a person with severe dysmorphia will likely find something else to hate about their appearance, not that BIID sufferers are unable to have a limb removed for no medical reason; especially considering the root of the problem seems to lie in the brain, not the limb.
Transabled individuals who have managed to lose a limb through surgery or self-injury and achieved their required body have not suddenly wanted more. Once the correct body is achieved, there's no need for more. Note that the need for an impairment, in the case of BIID, develops and shows up at a young age. In most cases, it's pretty much set and doesn't move.
If you do enough research, you'll come across stories of people who cut off a toe or finger, then another one, and another. It would be easy to interpret that as "proof" that there is a high risk of repeat request for surgery. What people aren't looking at is the fact that the people who do these things to themselves either don't have BIID, or trying to appease their BIID by doing something less drastic - for example, hoping that removing a toe will diminish their anguish rather than removing the entire leg.
It's hard to explain to someone that doesn't have it because you don't have a reference to work with. You are unlikely to understand what it is like to see someone else and be jealous of them because they have a body that could transition well, or just because they are a cis-female and so born without the issues you have if you haven't been there.
Interesting argument - I can't *possibly* understand what it's like to be transsexual because I'm not transsexual. By that same argument I could suggest I can't explain to you what it's like to have BIID because you don't have BIID. It would be a cop-out.
What I find interesting when it comes to BIID there seems to be no consensus yet as to what causes this condition.
That's true, we don't know exactly what the cause of BIID is. We know it's not delusion/psychosis. The thing is, there hasn't been a whole lot of research done into the condition. There are not enough transabled people around, and the condition has only been looked at for a relatively short amount of time (~30 years).
My gut feeling was that I assumed that it has something to do with proprioception and a lack of mapping of the body parts that somes sufferers want removed. While that seems to be a suggested as a neurological cause for BIID by some researchers I'm not quite sure if that matches what wylz describes. If I understand wylz correctly it is not about what belongs to your body but more how it functions or how it actually should not function. Does that still belong to proprioception?
Yes, it's still a proprioception thing. If paralysed, you don't have proprioception - awareness of where a limb is without looking at it - not all that dissimilar from not having a limb.
What I also found interesting is that apparently there is some kind tendency for white middle aged males to develop BIID, with a tendency to focus on the left side of the body. The suggestion is that that is related to neurological structures that are less expressed in males than in females.
I have not seen that suggestion in the literature. Is this your idea from what you read? If not, I'd be interested to see who wrote that.
Note that the perception BIID is "only" for white middle aged males is due mainly to the fact that only white middle aged males were originally studied. Bit like at first only people needing to be amputees were studied. The more research there is, the more we realise that there are a lot of women with BIID, and it's not a "Western/civilised" country only condition. People all over the world have BIID - they just aren't heard of as much.
I'm a bit wary to suggest it, but to me the wish to have a body part removed is not the same as the wish to be functionally impaired in some way. Given the lack of consensus when it comes to causes, can we be sure it is actually the same condition?
I would recommend you read the most excellent article by Dr. Michael First and Erik Fisher - "Examining the “Neuro-” in Neurodiversity: Lessons from Body Integrity Identity Disorder". It is a very good literature review and explanation of how both "cases" are in fact the same thing.
Look, my entire position is based on my complete inability to comprehend the suffering aspect.
I can understand your inability to comprehend that aspect. But are you able to accept that your inability to comprehend it doesn't mean it isn't real?
However, nothing that I've read has brought me anywhere close to the conclusion that surgery would be anything other than endulging in some disability ideation-type delusion.
I refer you to the published academic writings of Dr. First, Dr. Ryan, and many other noted psychiatrists and neurologists and medical professionals who ALL state that people with BIID are not delusional. Even those who are opposed to surgery for BIID agree that we aren't delusional. Are you a licensed psychiatrist with experience in diagnosing delusions and psychosis, and have you worked with people with BIID?
I have the same inability to comprehend this disorder. But let's say that the sentence above is true, and it is indulging in some kind of delusion. What's the alternative? As far as I know, there's no reliable way to fix/change the mind for this, any more than there is for transgendered people or gay people, so any question about that is purely hypothetical.
Thank you - there is no alternative. Until and unless there is, we should be given access to surgery.
I would say that perhaps the treatment and screening for OCD and other options should be considered before the desire to have an amputation should be considered The symptoms seem to be rather loosely defined in terms of functional impairment, I wonder if this will be modified or eliminated in revisions of the pending DSM-V.
BIID is not currently in the DSM. One of the leading researcher into BIID, Dr. Michael First, happens to be one of the editors of the DSM-5. I refer you to his previously cited article.
FWIW, BIID is not OCD. Several doctors have attempted to treat BIID using OCD techniques and medication - to no avail.
And the potential for other option should be considered first, if the individual is open to it. Just as gender reassignment should be taken over a very long course, or gastric bypass. Issues of stability of mental health, substance abuse and other factor should be considered before any long term surgical changes are made.
Surgery should be a last resort, and other conditions than BIID should be checked off the list of potentials before surgery is granted. I agree with that.
A brief literature review does not suggest that these issues have been dealt with adequately. (The numbers of articles seem to show that there is not really a good data base on this as a potential disorder yet.) And truly it will be difficult at this time to parse if it should be part of body dysmorphia and perhaps a disassociative disorder. I in particular would want to know about the prevalence of other comorbid factors.
There is not a lot of published material on BIID because there hasn't been a lot of research on it. However, what there is available clearly show that BIID is unrelated to Body Dysmorphia and disassociative disorders.
First, I cannot think of any other condition where a doctor would recommend or support the idea of doing physical damage to the body as a form of treatment for condition.
Might I suggest: Cancer?
The majority of personal experiences I've read, do not appear to resemble the clinical diagnosis of the disorder.
Which clinical diagnosis? There is no such thing at the moment. There is no official definition of BIID, it's not in any diagnostic books.
Then there are the stories of people clinically diagnosed with BIID. Those may also report an experience with an amputee or a parapalegic but the description of their experience seems to be more physical than emotional.
In as much as there is no official definition of BIID, I'm curious to see where you found those people clinically diagnosed with BIID?
Further, as you have probably seen already, I write a lot about my experience of living with BIID. I blog about it and often write about how emotionally distressing it is. This doesn't mean that I don't have a disconnect with my legs - in fact, feeling my legs and knowing they are there, ALL THE TIME, is a major cause of the emotional distress. And FWIW, I've been told by leading psychiatrists that "yes, you have BIID" - even though it's not officially codified. *shrug*
Is there any research showing that people as described in the quoted portion are happier, after an amputation? Or is this a case where they can't get amputations, so there's no data to assess whether it stops their distress? That seems tragic, if it would indeed help them.
There is no research at the moment looking at quality of life of post-surgery transabled folks. It is something I've been advocating for - there are not many people to study, but at least 36 known individuals would make a good start.
I've also suggested that I'd happily be part of a study that would look at my life before/after surgery.
No, there is no "evidence" that surgery helps, just a bunch of anecdotal knowledge. But there is evidence that pharmacotherapy doesn't help and psychotherapy doesn't help. It's time someone studied if surgery does help. If the outcome of such a study is that surgery doesn't help, then so be it. But we won't know until that study is conducted. "We can't give you surgery because we don't know that it would help you" - and at the same time "we can't study surgery as an option".
I'm tired. Tired of living like this. Tired of feeling like I'm an alien in my own body. Tired of being denied something that is, all things considered, a fairly simple procedure.
If I got surgery, one of two major outcomes would happen. Either I would feel relief of my BIID, or I wouldn't. If I didn't, I'd just be another paraplegic unhappy to be a para. I could always kill myself then. I think about killing myself now, every day. But I can't help hoping that somebody will give me a chance at a happy life. Seems to me that in terms of harm, severing my spinal cord would be a lot less drastic than my death.
There are at least two options as to the cause of BIID. One is psychological, the other is neurological.
Well, it could be neuropsychological, too... Paul McGeoch, a neurologist who works with V.S.Ramachandran, on the team who found the evidence of neurological involment in BIID pointed out to me that more and more psychology and neurology are viewed as two close points on the same continuum.
I begin to understand some of the stress and difficulty that BIID sufferers face. They look at the struggles that people such as transgenders have faced in the past (and, indeed, in modern times)...being told that they are "sick", that their condition is a psychological disorder that should be "cured", etc. And then they see the people who've gone through those struggles saying exactly the same things about them.
Thank you for seeing that. It is indeed really disheartening.
