Liza

I had no idea, Tousi!

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RedFox

I wonder how a person who physically needs a wheelchair would feel if it does happen. What would it take to enable people to see BIID as a valid reason to use resources originally intended for people with physical disabilities?

People would still want to help, like by holding doors open when you use the crutches, like with doors held open by electromagnets that are turned off when there is a fire alarm. You'd still be somewhat slower with crutches. What if there was stuff falling from the fire making things collapse?

If you haven't had bad experiences with the medical community regarding this, why be afraid of participating in studies? It's not like they'd publish a list of names of transabled people.

I read here that people who like wearing leg braces are commonly in the age range that would make them young children when polio and therefore leg braces was more common. This suggests that such things are like imprinting, where a kid sees someone with something like a wheelchair or leg brace, then wants to be like that. This is also supported by the apparent nonexistence of people who feel like they need to have nonexistent disabilities or conditions that won't permit life. I bet that if anybody developed the technology to keep beheaded heads alive, there'd be transabled people who feel like they have to be like that.

In earlier posts, I linked to case studies, like the one of a deaf wannabe who had a low self-esteem and was apparently using deafness to build one. I'm wondering how many BIID people are like that. Some people might think that means such people have a desire to get pity and feel special. Is there anybody who feels like that?

RedFox

In my previous post, I said that maybe it's from kids imprinting onto disabled people they've seen and wanting to become like them.

How do you know that most doctors and psychologists haven't heard of it? Plenty of people have heard of amputee wannabes because that had been on shows like CSI.

Saying that BIID is real doesn't make it so. There are tests that can show that people are deaf. How would other people be able to determine if someone has BIID? Pointing to a BIID site isn't enough. It could've been written by people with BIID. How about independent studies by non BIID people?

How can you show that the vast majority of them are happy if they achieve their goals? Are there any studies that do not relay on anecdotal evidence? Anecdotal evidence is not good evidence because it can be cherry-picked.

The issue with pretending would be the use of services meant for those who physically need them, like spaces on buses. Sign language interpreters and relay operators are finite resources. Would deaf pretenders want to use them up? If they do that, they'd degrade the lives of deaf people who have those resources taken away from them.

In an earlier post, I posted a link about a deaf wannabe who had low self-esteem. How many transabled people are like that? That is also mentioned as an attitude disabled people have towards transabled people here. Here, explanations by transabled people include feeling alienated from others and then feeling empathy for disabled people who are also alienated, then becoming obsessed with the disabilities. How about working on the feeling of being alienated?

I also wonder what transabled people would do if they were sent back to the Paleolithic Age.

Claire_C

Yes, that's fine. Maybe that's it. But there's still no way to make the obsession go away, to date. Even if we knew for sure that was the case, we still are stuck with BIID.

Because every professional I've ever talked to about it had never heard of it. Because on the BIID discussion groups, that is the case for the vast majority of sufferers. Because scholarly articles written on BIID by the few medical professionals who do so, mention that BIID is mostly unknown in the field.

How would other people be able to determine if someone has any one of a myriad of "invisible disabilities" or other mental conditions such as phobias?

BIID is determined by an obsessive and irrational desire for disability that goes back to early childhood. If you have that, you have BIID. Like many mental illnesses (such as depression, phobias), you can't "prove" it to anyone. Your behavior and what you say about how you feel is the only proof you can offer to anyone. BIID is not alone in not being provable by objective scientific tests, many common mental conditions are like that. That doesn't make it not real.

That is precisely the problem. There have been very few, too few. We want more. But it's hard to interest professionals in this topic because it effects such a small number of people and they want their research dollars to go where it can help a greater number of people (understandably). Thus, not much is going on research-wise on BIID. But I wholeheartedly support the concept of independent BIID studies. Bring them on!


I agree, and that is why we want more studies and we SPECIFICALLY want scientific studies done on these people. But so far, no one has conducted such a study. So we rely on anecdotal evidence. That's all we have. But there is something to be said for first-hand accounts.

I understand your point. But the issue there is in providing more resources for everyone who needs them. The issue is not that there is a very small population of BIID sufferers whose mental illness requires that they make use of some of these resources. The real issue is providing resources for everyone in the disabled community (and I am including mental illnesses in the disabled community here). Let's not refuse resources to those with mental illnesses, but let's work on improving the availability of those resources for everyone.

It is not fair to say "a person with Condition X needs a finite resource, so the person with Condition Y just has to suffer." The person with Condition Y also has a right, a real and undeniable right, to aid. People with BIID have a right to therapy. Right now, pretending is about the only therapy that anyone has found. I am open to other therapies that don't include pretending, except that to-date, there are none. Give me some options. Until other therapies are found, we have a right to deal with our condition the best way we can, just like anyone else does.

That is WAY too simplistic. If BIID were simply a question of self-esteem and a need for attention, it would respond to traditional therapies designed to address these issues. The fact is, it does not. You can work on my self-esteem all day and while I may feel better about myself, my BIID will not go away. If BIID were about self-worth, then explain to me why talk therapy has had so little success with treating BIID.

Besides which, as any person with a disability ought to know, you don't usually get positive, affirming attention from the majority of people who believe you to be disabled. They are either weird with you, or way WAY too sugary sweet, or try to help you when you don't need help, or stare at you like a beast in a cage. If my wanting to use a wheelchair was about self-esteem and attention, I would have abandoned the wheelchair long ago because the attention is far from positive most of the time. At best, it's neutral. But I continue to use the wheelchair, because it's about being myself, and not about how other people treat me.

I imagine we would be among the dead, along with a great many of other people with physical and mental disabilities.

ideafspy

it is interesting that you found that blog website.

It make me wonder where did you happen to decide and bump to find that blog?

I watch the television show about person feel that they shouldn't born with legs or arms even the fingers or toes. I think that strange to have person desire to cut or chop their body part to feel normal again.

It seems apply to disability issue but nature happen being Deaf that doesn't mean we do same thing on what people do.

We could like being as equal; however, we have pretty good journal than hearing people do. I know this point isn't about hearing or, vs deaf. My point that we have learned hard way to swim the stink river or cold river or whatever we face and we do what we can do it.

It not just being cruel and say, 'too bad and deal with it'. No hug yet, then the seed will grow being harsh.

It kind apply thing that seed and the water is mental illness got into seed and grow turn out weird image to do something their body.

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Let the star inner your heart be blast dark sky where there will be a bright kingdom.

RedFox

I found it after reading the Wikipedia article about attraction to disability that I found by looking around there. So I wondered if there were any deaf wannabes and googled it, which gave me the link to the blog.

Claire_C

Many of us had normal childhoods so I don't think it's about having been abused or neglected as a child. That may be something to do with it but it doesn't explain why their are millions of abused/neglected children that don't grow up with BIID. Something else is afoot that goes beyond that.

I think you're bringing up another really good point. We're often told something like "I'm a paraplegic and I've learned to deal with it. Why can't you just learn to deal with BIID?"

That's an EXCELLENT and fair question. It think the difference is twofold. First, BIID is a mental illness, and paraplegia (or deafness, or whatever) isn't. Since our mental health is compromised and we're dealing with an untreatable pathological obsession, our ability to "deal with it" is also compromised.

Secondly, there is no "cure" for paraplegia (or other disabilities that are untreatable). But there is a very easy cure for BIID. All it takes is a surgeon's willgness to help and a rather simple, short, uncomplicted operation. So relief from our condition is JUST out of our reach, tempting us.

Pepsi

Maybe they don`t want to "HEAR" what is going on in the world.Also My kids are real bad at this ,they act like they can`t hear one word i am saying and they have real good hearing.

doh

Presumably that is why they want to be deaf?

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Monkey, killing monkey, killing monkey.
Over pieces of the ground.
Silly monkeys give them thumbs,
They make a club.
And beat their brother down.
How they survive so misguided is a mystery.
Repugnant is a (not dismal) creature who would
Squander the ability to lift an eye to heaven, conscious of his fleeting time here

Angel

...

Tousi

That's right; they would, upon release from the hospital, throw the processor in the trash can of the parking lot! $60,000.00 for the privilege of becoming deaf! Indeed!

jillio

When I referred to Munchausen's, I was referring tothe post by someone else regarding a friend's behavior specifically.

What you are referring to is not diagnosable under DSM-IV (TR) criteria. The closes the DMS comes to diagnositic criteria for a disorder such as the one you describe is body dysmorphic disorder. However, the disorder,as described does not meet all of the criteria necessary. Thee is also conversion disorder, but neither does this meet the criteria for conversion disorder. Actually, this would fall more into the category of unsepcified personality disorder. If an individual truly want to be disabled, then having a mental illness certainly puts them into the category of disabled. However, as mental illness is also an invisable disability, these individuals seem to be more concerned with having a disablility that it visable and recognizable as a way to manipulate others and gain attention for themselves. These are very disturbed individuals. Threatening harm to oneself by creating a disability in oneself is sufficient grounds to commit.

jillio

You are assuming correlations that probably do not exist. A wheelchair is not what you need to treat this disorder. Intense psychotherapy and most likely medication is what is needed. You have a mental disorder, not a physical disorder.

jillio

BIID is not diagnosable by DSM IV-TR criterion. That is not to say that you do not have a mental disorder; quite obviously you do. You have encountered an unethical therapist. The use of a wheel chair in no way addresses the deep seated reasons that you find it appealing to be disabled. You are most likely suffering from a personality disorder that gives you an overwhelming need for attentionand pity, and it only manifests as the desire to be disabled because you seee those as disabled receiving more attention and pity that the non-disabled population. You have a narcissistic desire to be the center of attention.

My reference to Munchausen's and hypochondria were in reply to another poster's reference regarding her friend's behavior, not to the disorder from which you suffer.

Pretending thereapy is not a theoretically sound nor commonly used treatment technique. Perhpas you were drawn to this type of therapy because it gave you permission, however misguided, to continue in your behavior. What you need is extensive psychotherapy and most likely medication.

jillio

[quote=Claire_C;852576]Yes, that's fine. Maybe that's it. But there's still no way to make the obsession go away, to date. Even if we knew for sure that was the case, we still are stuck with BIID.

Actually, there is treatment that can reduce and control the obsessive thoughts. You simply have not engaged in finding that treatment.

Because every professional I've ever talked to about it had never heard of it. Because on the BIID discussion groups, that is the case for the vast majority of sufferers. Because scholarly articles written on BIID by the few medical professionals who do so, mention that BIID is mostly unknown in the field.

You are using discussion groups for a treatment that should be undertaken by a psychiatrist, or at the best, a psychiatrist and a clinical psychologist working in tandem.

How would other people be able to determine if someone has any one of a myriad of "invisible disabilities" or other mental conditions such as phobias?

That is your problem. Your disorder is one of a mental disorder, and you desire for it to manifest as a physical disorder in order that you be recognized as disabled by the general population, thus putting yourself in the position of receiving attentionand sympathy from others. Generally known as a narcissistic personality disorder.

BIID is determined by an obsessive and irrational desire for disability that goes back to early childhood. If you have that, you have BIID. Like many mental illnesses (such as depression, phobias), you can't "prove" it to anyone. Your behavior and what you say about how you feel is the only proof you can offer to anyone. BIID is not alone in not being provable by objective scientific tests, many common mental conditions are like that. That doesn't make it not real.

The same can be said for any disorder that involves obsession and compulsion. All are treatable. Int he case of this BIID, however, chances are great that you have several concomittant disorders: personality, OCD, and anxiety.

That is precisely the problem. There have been very few, too few. We want more. But it's hard to interest professionals in this topic because it effects such a small number of people and they want their research dollars to go where it can help a greater number of people (understandably). Thus, not much is going on research-wise on BIID. But I wholeheartedly support the concept of independent BIID studies. Bring them on!

Once again, this is a mix on concommittant disorders, not a disorder in and of itself.


I agree, and that is why we want more studies and we SPECIFICALLY want scientific studies done on these people. But so far, no one has conducted such a study. So we rely on anecdotal evidence. That's all we have. But there is something to be said for first-hand accounts.
You want more studies for the same reason that you want to be disabled. Since this is not a diagnosable disorder in an of itself, research dollars will not be spent in researching something that doesn't exist. There has been suffiecient research done on the number of disorders that are comorbind in any such individual, and therefore, there is established protocol for treatment of each of them.


I understand your point. But the issue there is in providing more resources for everyone who needs them. The issue is not that there is a very small population of BIID sufferers whose mental illness requires that they make use of some of these resources. The real issue is providing resources for everyone in the disabled community (and I am including mental illnesses in the disabled community here). Let's not refuse resources to those with mental illnesses, but let's work on improving the availability of those resources for everyone.
Your mental illness does not require that you make use of resourcedc intended for those with a disability of a physical nature. Your disability is of a mental nature, and the resources you need are of the psychiatric variety.


It is not fair to say "a person with Condition X needs a finite resource, so the person with Condition Y just has to suffer." The person with Condition Y also has a right, a real and undeniable right, to aid. People with BIID have a right to therapy. Right now, pretending is about the only therapy that anyone has found. I am open to other therapies that don't include pretending, except that to-date, there are none. Give me some options. Until other therapies are found, we have a right to deal with our condition the best way we can, just like anyone else does.

You do not suffer from a physical disability,therefore, there is no justification for utilizing resources intended for those who do. Simply wanting to suffer from a physical disability as the result of a mental disability is not justification for utilizing these resources. Utilize the resources that can acutally treat your disorder: mental health resources.


That is WAY too simplistic. If BIID were simply a question of self-esteem and a need for attention, it would respond to traditional therapies designed to address these issues. The fact is, it does not. You can work on my self-esteem all day and while I may feel better about myself, my BIID will not go away. If BIID were about self-worth, then explain to me why talk therapy has had so little success with treating BIID.

You need treatment designed to address not just self esteem issues, but the personality disorder,a nd the OCD. You are not neurotic, you a seriously mentally ill.

Besides which, as any person with a disability ought to know, you don't usually get positive, affirming attention from the majority of people who believe you to be disabled. They are either weird with you, or way WAY too sugary sweet, or try to help you when you don't need help, or stare at you like a beast in a cage. If my wanting to use a wheelchair was about self-esteem and attention, I would have abandoned the wheelchair long ago because the attention is far from positive most of the time. At best, it's neutral. But I continue to use the wheelchair, because it's about being myself, and not about how other people treat me.

Being in a wheel chair is not being yourself because you have no physical need for the wheel chair. It is about presenting yourself as someone you are not in order to manipulate others.

kvinnemarie

*Sigh*

All this because I started a blog.

I really don't care if people like me or if they don't. I'm only after my own peace of mind and contentment in life. I also don't care of people think I'm crazy or stupid or insane. People email me and post comments to my blog calling me those things. It doesn't bother me.

Some people think that deaf people who don't want to hear are crazy and some deaf people think I'm crazy because I don't want to win! I guess I can't win...

It does make me sad because people pass judgement about me (and people like me) without knowing anything or making any attempt to understand. Why do people want to make decisions for me? Why can't I have personal liberty and a chance to decide for myself what I want to do to my own body?

If anyone wants to have an intelligent conversation I will respond candidly to email. kvinnemarie@yahoo.no is the mail...

Claire_C

Jillo, you must have missed the part where I stated I've seen three mental health professionals, all of whom told me that there was no treatment for BIID. I have also seen a neurologist who believes it has a neurological cause: a problem in the parietal lobe of the brain concerned with body image. I have also been in email contact with two other mental health professionals who have done studies on BIID who have no treatments to suggest. Your suggestion to find help is great - please give me the name and phone number of the mental health professional that you recommend who has had success treating this condition.

I am sorry but BIID does exist. Do some research. When it shows up in the DSM-V you'll know. The editor of the next version of the DSM, Dr. Michael First, was the person who actually coined the term Body Integrity Identity Disorder and has done one study on it and is about to conduct a second. You can Google that and find out in 1-minute's research to see that it's true. I'm afraid I'll have to take Dr. First's word over yours, until you at least provide your credentials.

jillio

A surgeon amputaing a limb is not treating the disorder, it is acting out onthe pathological obsession created by the mental disorder. It is a part of the disorder in and of itself. Treatment is psychiatric, not surgical. Physican's are prohibited form asssiting a suicidal patient in committing suicide,as well. It the same thing.

jillio

Then you are seeing the wrong metnal health professionals. And if the disorder does indeed have a neurological cause, then amputating a limb will not stop the obsession, as it originates in the pathology within the parietal lobe. The parietal lobe would still be intact, therefore, the obsession would recurr.

The parietal lobe is responsible for unilateral neglect. That is an entirely different syndrome. The next version of the DSM has yet to be published, and it will be some time before it is published. What you describe, as I have indicated in a previous post, falls into the category of body dysmorphic disorder. That diagnosis is normally made when one seeks out excessive plastic surgery in order to correct what they perceive as unnatractive in their own appearance, despite the fact that their physical appearance is normal. They are simply unable to perceive their appearance as normal, and therefore, seek to change it. However, as your wish is not to change your appearance, but to actually engage in a procedure that would render you disabled for the sake of being disabled, it is quite likely, as I said prior, that you have several concomittant mental disorders at once.

I find it extremely difficult to believe that these health profssionals recognize this disorder, yet have no recommendations for treatment.

And if you want my credientials, they are LPCC, CRC, NSC.