Amputation as a treatment for BIID

[Wolfman]

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. It's not like BIID where the brain is not recognising part of the body. We're talking a person's personality, mannerisms and more, the entire being that makes up who they are. These don't differ between a person with a leg and without one, they do between genders.

I'd suggest that you check out wylz's website, if you haven't already. I admit that I do not have personal experience with any of the situations being described, but as wylz has pointed out, BIID isn't just about cutting off a limb that doesn't seem to be a part of you.

Wylz, for example, sees himself as a paraplegic. That is his self-image, that is who he believes he is...but his body 'betrays' him by not being paralyzed (and he seeks treatment by having his spinal cord severed in order to make him a paraplegic). I'd argue that, while not identical, the issue of self-identity, and the desire (for at least some people) to have a body that physically mirrors their mental image of themselves, would be fairly similar for transgenders and BIID sufferers.

As an example, a person who has external male genitalia, but identifies as female gender, may dress up and act like a woman, being 'female' in all facets except the one physical fact that she still has a penis (and thus may seek surgery to change that situation). Similarly, wylz has a non-paralyzed body, but identifies as a paraplegic, so he spends much of his time in a wheelchair, even binding his lower body in braces in order to immobilize it and be as much like a paraplegic as possible. He's a paraplegic in all facets except the one physical fact that he can actually still walk (and thus seeks surgery to change the situation).

But beyond that, I intended my question to mean whether you would support surgery for BIID sufferers the same way that you obviously would for those who seek sex-reassignment surgeries.

 

[Professor Yaffle]

Yes, 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.

BIID is not the same disorder as BDD (Body Dysmorphic Disorder). Those with the latter would probably find something else to hate about their body after surgery, but the scant evidence so far suggests that the former do not - as its not about hating a part of their body at all, but about a feeling that a certain part of their body or aspect of their body is not part of their identity.

Thank you everyone for your input in this thread, its giving me a lot more food for thought - and especially wylz for sharing his thoughts as a sufferer and adding that first hand knowledge.

 

[Moss]

What I find interesting when it comes to BIID there seems to be no consensus yet as to what causes this condition.
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? I hope I haven't misunderstood you there, if I have please correct me.
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'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?

 

[Pup]

Perhaps I read it wrong, but it appeared to me that you were asking what a TG person would do if doctors could create a perfect body for them of the other gender, not what they would do if they could get their brain "fixed". So if it was a choice of brain or body, I'd say most TGs would opt for body. As you noted, changing the gender of our brain is to change who we are on a fundamental level. Sorry for any confusion there.

Maybe I didn't explain it well enough, but I was trying to figure out how to put myself in their situation. I meant, would I choose to be forced into a perfect body of the opposite sex and have my brain altered to be happy with it, or have an imperfect body of my own sex without my brain being altered.

I'd choose my brain not to be altered, so I could still be "me" even if I was less than physically perfect. But the heart of the question is what is "me." For example, my major mental problem is PTSD and anxiety. I'd love for my brain to be magically "fixed" of that without side effects, since I imagine my real "me" to not have that problem.

So I'm thinking that "fixing the brain" of transgendered people would not necessarily be a popular solution even if it were possible. But I'm not sure about people with BIID. Given the choice of having an amputation (or whatever they needed), would they prefer the amputation, or to have their brain "fixed"?

 

[Pup]

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?

It seems, from what little I've read about such disorders, and from no personal experience, that there's a major difference between anorexia and BIID. With anorexia, the patient can never be thin enough to be satisfied. With BIID, it seems the disorder is very specific and limited. It's not like if they have one arm amputated, they'll want the other one done too.

Yes, 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.

Is there evidence for the part I've bolded, when it comes to BIID and, incidentally, transgender issues? Obviously there's been much more research on transgendered people than people with BIID, but it's my understanding that once they've achieved what they need, they're reasonably satisfied, unlike people with anorexia, for example, who always feel they should be thinner. In other words, it's not about the process of becoming, it's about being.

Edited to add: Now I see that Professor Yaffle has clarified that body dysmorphic disorder and BIID are not the same.

 

[sgtbaker]

I just want to be clear on one thing. I am in no way trying to say that BIID is a form of BDD. I was just making a comparison about treatments because they both seem to be psychological disorders.

 

[sgtbaker]

I agree, and I disagree.

This isn't just an issue of physical health...it is an issue of psychological health, too. Give me a choice between A) having a healthy body, but spending my life in depression, or B) having only one let, but no depression...and I honestly would likely choose the latter. Sometimes psychological suffering can be much worse than physical disabilities.

So to me, the question is how bad the suffering of those with BIID is (and certainly in at least some cases, it seems to be quite significant), and following on that, whether the desired surgery will decrease or eliminate that psychological suffering. And at least according to the (admittedly limited) research that I've read on this, there does seem to be significant, permanent psychological relief for those who are successful in achieving whatever physical state it is they are pursuing.

In cases where the psychological suffering is significant, and surgery will significantly decrease or eliminate it...then I'd personally say go for it. The physical disability they'll face will be far less debilitating to them than the psychological pain they are currently suffering.

Look, my entire position is based on my complete inability to comprehend the suffering aspect. The more I try to wrap my head around the idea of suffering because one is NOT disabled, the more it confirms to me that this must be a severe phsychological dysfunction. I tried, I gave it a hero's effort. The day I saw this thread I spent hours reading through blogs, forums, facebook pages trying to understand what wanna be's go through. I can understand longing to be something that you are not and am willing to explore the possibility that there must not exist the terminology needed to clearly explain what the actual suffering is. 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.

 

[Pup]

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 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.

There's lots of suffering in the world that can't be cured, so we have to tell people, "too bad, sorry, just suck it up." There are people with persistent depression that medication doesn't help, alcoholics who struggle to resist a drink their entire life...

But apparently, this is a situation where we can relieve the suffering, unlike, say, anorexia. If it's true that persons with this disorder are happier and satisfied after amputation or the treatment they desire, I'm having trouble finding a reason to insist that they must continue to suffer and can't have access to treatment, simply because the treatment isn't something I'd want.

 

[sgtbaker]

It seems, from what little I've read about such disorders, and from no personal experience, that there's a major difference between anorexia and BIID. With anorexia, the patient can never be thin enough to be satisfied. With BIID, it seems the disorder is very specific and limited. It's not like if they have one arm amputated, they'll want the other one done too.

I never said that a person with BIID would seek further amputation.

Is there evidence for the part I've bolded, when it comes to BIID and, incidentally, transgender issues? Obviously there's been much more research on transgendered people than people with BIID, but it's my understanding that once they've achieved what they need, they're reasonably satisfied, unlike people with anorexia, for example, who always feel they should be thinner. In other words, it's not about the process of becoming, it's about being.

Edited to add: Now I see that Professor Yaffle has clarified that body dysmorphic disorder and BIID are not the same

I don't need to present evidence to support something I've never claimed. I simply don't feel that there is a strong parallel between GID and BIID. Having a penis or a vagina is the end result of having X or Y chromosomes. Identity, on the other hand, is based on a sliding scale of maleness and femaleness. There is evidence that people with GID tend to have the brain makeup of the sex that they identify as. There is physical evidence that there is an actual mixup in gender/sex formation. Most of the experiences I've read, regarding BIID involves some kind of initiation point; meeting or seeing someone with the actual disability that they wish to have.

 

[Dancing David]

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.

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.

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.

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.

 

[Dancing David]

I'd say that anyone who is feeling such psychological distress that they are willing to inflict incredibly painful injuries on themselves in order to get rid of the offending body part is already disabled.

Yes, that is true, but having worked with some severely disturbed people, who has issue with self destruction of their bodies (cutting, burning, being cast to prevent cutting and tearing stitches, putting foreign objects in stitched prior incisions), I do not feel that the desire to change or damage the body is necessarily the primary disorder. Of my limited sample most seemed to have a primary substance abuse disorder and a primary mental illness. Some were survivors of childhood sexual trauma, some were not. Some has psychosis, some did not.

 

[sgtbaker]

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.

There's lots of suffering in the world that can't be cured, so we have to tell people, "too bad, sorry, just suck it up." There are people with persistent depression that medication doesn't help, alcoholics who struggle to resist a drink their entire life...

But apparently, this is a situation where we can relieve the suffering, unlike, say, anorexia. If it's true that persons with this disorder are happier and satisfied after amputation or the treatment they desire, I'm having trouble finding a reason to insist that they must continue to suffer and can't have access to treatment, simply because the treatment isn't something I'd want.

*disclaimer* I am not a doctor in any field of medicine. Everything I type in this post is entirely enterpretation and my best understanding of medical terminology. There is nothing that I claim to be fact and if presented with a strong enough argument, my mind can easily be changed on this topic.

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. I am certainly willing to look at any examples offered.

Second, there seems to be a sharp contrast between two different types of experiences from people who identify in having this disorder. The majority of personal experiences I've read, do not appear to resemble the clinical diagnosis of the disorder. The majority of the blogs, to me, appear more like disability ideation, "I just feel like I was meant to be <insert disability>..." Those that take that approach tend to go into discussion an experience with someone having their desired disability and longing for the attention and experiences that those with that particular disability have. 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. They feel a disconnect with the actual part of the body. In those cases, brain mapping actually shows a lack of response, in the brain, when stimulating the specific part of the body, effected by the disorder. I simply feel like there is not enough knowledge of the disorder and possible treatments to jump to permanently disabling the body, as a solution.

 

[PhantomWolf]

I'd suggest that you check out wylz's website, if you haven't already. I admit that I do not have personal experience with any of the situations being described, but as wylz has pointed out, BIID isn't just about cutting off a limb that doesn't seem to be a part of you.

Wylz, for example, sees himself as a paraplegic. That is his self-image, that is who he believes he is...but his body 'betrays' him by not being paralyzed (and he seeks treatment by having his spinal cord severed in order to make him a paraplegic). I'd argue that, while not identical, the issue of self-identity, and the desire (for at least some people) to have a body that physically mirrors their mental image of themselves, would be fairly similar for transgenders and BIID sufferers.

As an example, a person who has external male genitalia, but identifies as female gender, may dress up and act like a woman, being 'female' in all facets except the one physical fact that she still has a penis (and thus may seek surgery to change that situation). Similarly, wylz has a non-paralyzed body, but identifies as a paraplegic, so he spends much of his time in a wheelchair, even binding his lower body in braces in order to immobilize it and be as much like a paraplegic as possible. He's a paraplegic in all facets except the one physical fact that he can actually still walk (and thus seeks surgery to change the situation).

But beyond that, I intended my question to mean whether you would support surgery for BIID sufferers the same way that you obviously would for those who seek sex-reassignment surgeries.

The difference for me is that there is no normal "paraplegic" condition and personality in the human race. Paraplegics do not have a set of generalised traits and mannerisms as we see between males and females. Being male or female are both totally normal human states and as much as we can argue the whole nature vs nurture thing, in general we can see that they are different in the way that they act, think and behave. There are no similar differences between a paraplegic and a non-paraplegic, they don't think, act, or behave differently, except in the one arena of physical motion. Think of it this way. Consider all the things that make you male (or female for the girls). Now consider all the things that make someone a paraplegic. See the difference?

With a TG we have a person who's brain is well within the "normal" range for humans. The problem is that it is "normal" for the gender opposite of their body. With a sufferer of BIID we have someone who's brain is functioning outside of the "normal" human range, regardless of which group you want to use to define normal. With a TG there is nothing to fix in the brain, it's not actually broken, it's just that someone has put a hybrid engine into an Astin Martin, the engine works perfectly is is functioning exactly how it should, it's just in the wrong car. With a BIID person, it's closer to having the hybrid engine correctly installed in a Toyota Prius, but the computer not accepting that it should have ABS on all four wheels because it's not functioning correctly. These are really quite different senarioes.

 

[Pup]

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. They feel a disconnect with the actual part of the body. In those cases, brain mapping actually shows a lack of response, in the brain, when stimulating the specific part of the body, effected by the disorder. I simply feel like there is not enough knowledge of the disorder and possible treatments to jump to permanently disabling the body, as a solution.

Okay, so let's take those people, whose brain mapping actually shows a lack of response. Apparently they can explain their condition, and there's a test to see if their brain matches what they report, and it does. They're unhappy and in distress. They know what would relieve their distress.

But you'd still be willing to refuse them a treatment that would relieve that distress, because their symptoms are too close to some other people's?

That's how transgender issues used to be, maybe, I don't know, 50 years ago, when transvestites, homosexuals and transsexuals were all mixed up together. A doctor could point to a transvestite and tell a transgendered person that all they had was a sexual fetish like that, which could be cured without cutting off their penis, and even if it couldn't, cutting off their penis was obviously too drastic a step, just for a sexual fetish.

Maybe it's still too soon and we're still in that stage of understanding BIID.

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.

 

[Wolfman]

Look, my entire position is based on my complete inability to comprehend the suffering aspect. The more I try to wrap my head around the idea of suffering because one is NOT disabled, the more it confirms to me that this must be a severe phsychological dysfunction.

I am likewise entirely unable to comprehend a person wanting to have their penis cut off. Seriously. I cannot begin to comprehend what it would be like to have a male body, and feel like a female.

Does that mean that I should, like you, draw the conclusion that A) it is a psychological disorder and B) that surgery won't help?

I'm sorry, but arguments based on "I don't understand it, so I'll just squeeze it into a frame of reference that fits my world view" isn't terribly indicative of critical thinking...and were the same thinking applied to things like homosexuality and transgenderism, I'm sure you'd be condemning it quite vocally.

The difference for me is that there is no normal "paraplegic" condition and personality in the human race. Paraplegics do not have a set of generalised traits and mannerisms as we see between males and females. Being male or female are both totally normal human states and as much as we can argue the whole nature vs nurture thing, in general we can see that they are different in the way that they act, think and behave. There are no similar differences between a paraplegic and a non-paraplegic, they don't think, act, or behave differently, except in the one arena of physical motion. Think of it this way. Consider all the things that make you male (or female for the girls). Now consider all the things that make someone a paraplegic. See the difference?

And once again, you've failed to directly answer a question that I've asked you twice -- should BIID sufferers be allowed to have surgery?

I have problems with both your arguments, and sgtbaker's, in that you seem to have already concluded that this must be a psychological disorder. You present no evidence or proof for this situation, and certainly have far, far less knowledge than doctors who have actually studied the condition, and are unable to reach a definitive conclusion...yet you are nevertheless comfortable in reaching that conclusion.

There are at least two options as to the cause of BIID. One is psychological, the other is neurological. You talk about nature vs. nurture, yet consider only one possibility in this regard. If BIID has a psychological cause, then it is more of a 'nurture' thing; but if it has a neurological cause, then it is very much a 'nature' thing. They feel this way because that is the way their brain has been biologically programmed to make them feel.

Yes, there are differences from transgenders, nobody is arguing that the conditions are identical; but nor does the fact that "they are different" equal "they are wrong".

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.

How far down the social ladder are you when those who should be most sensitive to such condemnation join in with treating you the same way?

Here are the facts as I see them:

1) BIID sufferers are most definitely suffering. Their condition causes significant psychological stress, to the point that it drives some of them to self-injury and suicide (wylz is currently having major struggles himself in this area). And please, don't argue that this is an indication of BIID being a psychological disorder, unless you're going to argue that gays who commit suicide prove that homosexuality is a psychological disorder.

2) There is evidence that surgery will significantly alleviate or eliminate all this psychological stress and suffering. That the quality of life for BIID sufferers is measurably improved by having such surgery.

3) It hurts nobody else. This is another one of those "It's my body" things. Hell, people can get all sorts of bizarre things done to their bodies these days, and even if we can't understand, or think it's weird/disgusting, we generally hold that it is their body, and their right to make such a decision.

I don't understand this any more than you guys. I think it is bizarre, and I shiver at the thought of anyone wanting to have a limb cut off, or their eyes removed, or their spinal cord severed. But then, I also cannot understand someone wanting to have their penis removed, and I think that the very concept of feeling like a woman when I have a man's body is bizarre.

But when I put aside my emotional reaction; when I consider that my perspective and worldview is not the only legitimate one; when I look at the actual evidence...

...then I reach the conclusion that the suffering of transgenders and of those with BIID is entirely real, and legitimate (even if with different causes), regardless of my perception of it. And that, at least based on the evidence at hand, in both cases surgery does result in significantly improved quality of life for both groups, without harming anyone else.

So regardless of my emotional reaction, what rational argument could I have for opposing surgery for either group?

 

[sgtbaker]

Okay, so let's take those people, whose brain mapping actually shows a lack of response. Apparently they can explain their condition, and there's a test to see if their brain matches what they report, and it does. They're unhappy and in distress. They know what would relieve their distress.

But you'd still be willing to refuse them a treatment that would relieve that distress, because their symptoms are too close to some other people's?

I don't know. I am not claiming to have answers nor am I an any position of authority to sit and point out who should get what type of treatment. My position is, if the malfunction is in the brain, treat the brain.

That's how transgender issues used to be, maybe, I don't know, 50 years ago, when transvestites, homosexuals and transsexuals were all mixed up together. A doctor could point to a transvestite and tell a transgendered person that all they had was a sexual fetish like that, which could be cured without cutting off their penis, and even if it couldn't, cutting off their penis was obviously too drastic a step, just for a sexual fetish.

Maybe it's still too soon and we're still in that stage of understanding BIID.

That's pretty much my position.

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.

So far, the few that have had successful amputations report feeling relief. I just can't help but feel like finding a cure for the disconnect in the brain would be a more ethical approach.

 

[CelticRose]

1) BIID sufferers are most definitely suffering. Their condition causes significant psychological stress, to the point that it drives some of them to self-injury and suicide (wylz is currently having major struggles himself in this area). And please, don't argue that this is an indication of BIID being a psychological disorder, unless you're going to argue that gays who commit suicide prove that homosexuality is a psychological disorder.

2) There is evidence that surgery will significantly alleviate or eliminate all this psychological stress and suffering. That the quality of life for BIID sufferers is measurably improved by having such surgery.

3) It hurts nobody else. This is another one of those "It's my body" things. Hell, people can get all sorts of bizarre things done to their bodies these days, and even if we can't understand, or think it's weird/disgusting, we generally hold that it is their body, and their right to make such a decision.

This. Especially #3.

 

[CelticRose]

I don't know. I am not claiming to have answers nor am I an any position of authority to sit and point out who should get what type of treatment. My position is, if the malfunction is in the brain, treat the brain.

Well, yes. In an ideal world doctors could just examine someone with BIID, say "whoops, you've got a couple of wires crossed", and uncross the wires for them.

However, currently there is no psychological or pharmaceutical treatment that is effective for this condition. The only treatment thus far shown to be at all effective is surgery.

So far, the few that have had successful amputations report feeling relief. I just can't help but feel like finding a cure for the disconnect in the brain would be a more ethical approach.

Certainly more research should be done toward finding a cure, but in the meantime, is it ethical to force these people to continue to suffer when there is a treatment that will provide them with immediate relief?

 

[Wolfman]

I don't know. I am not claiming to have answers nor am I an any position of authority to sit and point out who should get what type of treatment. My position is, if the malfunction is in the brain, treat the brain.

Two problems with this proposal:

1) To take this argument to it's logical conclusion:

If doctors were to find a way to change a transgender's brain so that their gender matches their sex...then you would, naturally, conclude that all people who wish to be transgenders should have brain surgery to "treat the brain", rather than gender reassignment surgery...yes?

(I rather doubt it)

2) You are ignoring the fact that even the cause (psychological or neurological) is unknown, and there is absolutely no treatment available to "fix" a BIID sufferer's brain. At present, their only options are A) suffer, or B) have surgery.

Personally, it seems rather cold-hearted and cynical to say, "Okay, there's a treatment that will make you feel better, that can improve your quality of life, but I don't like it, so I'm going to insist that the only acceptable treatment for you is the one that doesn't exist."

 

[Dancing David]

2) There is evidence that surgery will significantly alleviate or eliminate all this psychological stress and suffering. That the quality of life for BIID sufferers is measurably improved by having such surgery.

Could you point me to that?