Something shocking and creepy, deaf wannabes, pretenders and others
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It is a subtle difference, easy to misunderstand. Someone with anorexia thinks their body is fat, but it is normal. We know our body are normal, but our body feels alien.
I Googled "BIID DSM" because I didn't know about DSM before (seems I know nothing!)) and found a page about a scientific meeting for BIID.
That meeting/conference took place a long time ago and the organisers haven't been active at all in a long time. Also, you have to be careful about what Dr. Lawrence puts forward, as Marie stated, she is not particularly respected in the field of gender identity disorder, nor in the field of BIID.
A term coined by Dr. John Money, basically an "umbrella" label to encompass all kind of atypical or abnormal sexual desires/behaviours. You can learn more here: Paraphilia - BIID-Info.org
A fairly complex concept that would be better off discussed elsewhere
You may read more about it here:Clinical and Theoretical parallels Between Desire for Limb Amputation and Gender Identity Disorder - BIID-Info.org
Some people have died, yes. Many people have achieved what they wanted. Those people who have become amputee all report being happier now than they were before. Almost all of them say that their only regret was not to have done it earlier.
No, SSRI do not help. It is my personal experience, as well as that of everyone I have spoken to (several dozen individuals with BIID) who have been on various medication to get rid of BIID that these drugs do not work.
Some people with BIID do not want surgery (another parralel with the GID condition).
BIID can indeed be mild or severe, and in general tends to worsen with time.
Kaitin
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Sean: I will read more later - my roommate too. So fascinating! I don't know if I will understand ever, but it is interesting to learn.
I read link about "paraphilia". Wow. So is BIID a paraphilia for some (unusual sex interst about amputation or paralysis)? I don't mean to make this thread adult-only, but I know you won't.
Thank you!
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BF here! I want to talk to him about the thread - he will say "
but may have better understanding of these ideas than me. He always says I am naeve (AD - we need a spellcheck!) - may he knows BIID before.
I read link about "paraphilia". Wow. So is BIID a paraphilia for some (unusual sex interst about amputation or paralysis)? I don't mean to make this thread adult-only, but I know you won't.
Thank you!
----
BF here! I want to talk to him about the thread - he will say "
but may have better understanding of these ideas than me. He always says I am naeve (AD - we need a spellcheck!) - may he knows BIID before.It is an easy assumption to make, and to be fair, there is an obssessive element to BIID, but it is not OCD. Drugs and OCD treatments tried on people with BIID have not worked. Again, this is not just me saying so, but professionals in the field of psychology and psychiatry.
Sorry
Yes, it seems hard, and for a parent, it would be a struggle. The thing is, you have to ask yourself: Is living life as an amputee, or as a paraplegic, or blind, such a disaster? Is it not just another way of being? Just like being deaf?
Many of my friends who have physical mobility disabilities have heard it said often: people say "I'd rather be dead than disabled". Is it not a nice change for us to say "I'd rather be dead than NOT disabled"??
I always think a kid should decide on CIs, not parents because CI destroys hearing. Should a kid decide on BIID? I don't know.
BIID destroys lives. My life has been pure hell for as long as I can remember. I could have avoided a LOT of pain and anguish had I been able to become paraplegic earlier in my life.
Should kids decide on BIID? Well, the question is a bit different. Kids (or anyone) don't decide to have BIID, we just do. The question should be "should kids be able to decide to go for surgery?". That is a very tricky question. I do think that children should be forced to wait, at least until their late teens or early twenties. I also think that therapy should be mandatory before surgery. To make sure people understand why they feel the way they do, as much as possible. To ensure that the request for amputation/spinal cord transection/whatever is not a result of something other than BIID (like Munchausen or other disorder). I also think that where possible, a "real life test" should be given. I talk more about treatment protocols here:
Treatment Protocol - BIID-Info.org
Wannabes is the name that was used to describe people who have BIID, before the term Body Integrity Identity Disorder was suggested by Dr. First. I have never liked that word, as it seems somewhat pejorative, and doesn't describe it well. But it is still in usage a lot. I personally prefer the term "transabled" to describe someone with BIID, like transsexual describes someone with GID.
Both, in some cases
You're welcome, and no, you aren't asking too many questions.Thank you for replies. I know I am asking too many questions!
You're welcome. Please don't hesitate to contact me directly through the contact form on Contact » transabled.org » Blogging about BIID
No fair to keep answering questions after I said I was leaving!
Just kidding, I'm happy to answer questions, I just feel silly now. Somatoparaphrenia is caused by a stroke and patients deny that certain body parts belong to them. Somatoparaphrenia - Wikipedia, the free encyclopedia
The "monothematic delusion" part is quite interesting. It means that the patient is otherwise perfectly intelligent and rational.
Ramachandran is hypothesizing that BIID would be a kind of congenital somatoparaphrenia. I say "congenital" because (also in answer to another question of yours) people with BIID have memories of their desires going back to very early childhood. That indicates that it's not brain damage but more of an irregularity of the circuitry of the brain. As for me, it started when I was about 5 years old (or at least, my first memory of it dates back to that time). I used to pretend I was "crippled" all the time. When I played house with my friends I always wanted to be in a wheelchair and they would get exasperated with me because we didn't HAVE a wheelchair to play with, and besides, they didn't see what was so fun about that. lol
The VCS didn't last for 24 hours, just the effects of it did. For 24 hours I experienced a marked lessening in the desire to be paraplegic. Someone with somatoparaphrenia will actually admit that they "own" their disowned body parts for about 24 hours after VCS and then they will revert to denying it. So, basically the VCS is not used to actually cure the condition but to verify the location and nature of the irregularity. I am not quite ready to say that it "worked", because I was extremely ill for much of that time, and one could guess that I was simply too ill to think much about anything else. But if Ramachandran's research finds that the vast majority of BIID sufferers also experience what I experienced that could be proof that his hypothesis is correct. We'll have to wait and see on that one, as the study is ongoing.
FWIW, I was forewarned of the effects of VCS and I went willingly to this study, spending a great deal of money to get myself to California, and ended up retching miserably into a bucket in the lab and feeling just about as awful as I ever have in my life. If that's not proof of a desire and willingness to find treatment for this condition, then I don't know what is. *shrug*
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jillio
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Hi, Jillio: For you: "dominant index with fist closed and index finger up - moves hand to forehead - bends index finger"
Jillio, do you think that BIID is obsessive compulsive disorder? Or what other "diagnosable disorder"?
I think it is a four or five pronged diagnosis, Presonality Disorder with obsessive compulsive features, body dysmorphic disoder, probably depressive symptoms, and adjustment issues as well. These are all easliy diagnosed within DSM IV TR criterion, and the symptomology described by these indiviudals fits within the parameters needed for diagnosis.
jillio
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No fair to keep answering questions after I said I was leaving!
Somatoparaphrenia is caused by a stroke and patients deny that certain body parts belong to them. Somatoparaphrenia - Wikipedia, the free encyclopedia
The "monothematic delusion" part is quite interesting. It means that the patient is otherwise perfectly intelligent and rational.
Ramachandran is hypothesizing that BIID would be a kind of congenital somatoparaphrenia. I say "congenital" because (also in answer to another question of yours) people with BIID have memories of their desires going back to very early childhood. That indicates that it's not brain damage but more of an irregularity of the circuitry of the brain. As for me, it started when I was about 5 years old (or at least, my first memory of it dates back to that time). I used to pretend I was "crippled" all the time. When I played house with my friends I always wanted to be in a wheelchair and they would get exasperated with me because we didn't HAVE a wheelchair to play with, and besides, they didn't see what was so fun about that. lol
The VCS didn't last for 24 hours, just the effects of it did. For 24 hours I experienced a marked lessening in the desire to be paraplegic. Someone with somatoparaphrenia will actually admit that they "own" their disowned body parts for about 24 hours after VCS and then they will revert to denying it. So, basically the VCS is not used to actually cure the condition but to verify the location and nature of the irregularity. I am not quite ready to say that it "worked", because I was extremely ill for much of that time, and one could guess that I was simply too ill to think much about anything else. But if Ramachandran's research finds that the vast majority of BIID sufferers also experience what I experienced that could be proof that his hypothesis is correct. We'll have to wait and see on that one, as the study is ongoing.
FWIW, I was forewarned of the effects of VCS and I went willingly to this study, spending a great deal of money to get myself to California, and ended up retching miserably into a bucket in the lab and feeling just about as awful as I ever have in my life. If that's not proof of a desire and willingness to find treatment for this condition, then I don't know what is. *shrug*
Its a willingness to continue to undergo medical treatment in order to receive attention. Your childhood behavior indicates that these problems are by now deeply seated. Perhaps they should ahve been addressed when you were engaging in abnormal behaviors as a child rather than being ignored.
And once again, what you claim is no more than hypothesis. In other words.....a great big maybe. The diagnosis still does not exist.
Are you going to share with us what your official diagnosis is?
I thought that question was in response to wylz. I'm not sure what the point is since whatever I say, you won't believe me. But you have successfully goaded me into answering, the more fool me.
So fwiw: My psychologist concurs that I have BIID as she did research once I came to her with it, and it fit what she read on the subject. Not being in the DSM was not an issue for her as she knows that the DSM is a guide and not the infallible divinely inspired repository of all there is to know about the human condition. The neurologist that I have seen also concurred that I had BIID and wrote a letter to my GP to explain the situation. My GP took it at face value and says she will do her own research and talk to my psy, but I haven't seen her since then.
The two other mental health professionals that I saw did not diagnose me as they had never heard of the condition/symptoms. They referred me on twice to someone else better qualified to treat a rare condition (and may I add, someone open minded enough to accept the fact that it's possible that they don't know everything and there there is something still yet to learn in this field).
I will answer no further questions from you until you show a willingness to open up your mind or at the very least show a little humanity.
You could start by posting the URLs of the scholarly and research documents that you have read to back up your claims that BIID does not exist and is merely a conglomeration of several concurrent conditions.
jillio
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I see......so you sought out a psychologist that would validate your self diagnosis. And my point stands....you cannot be diagnosed with a disorder that for all practical purposes does not exist. There are psychologists out there that will validate a patients claim that they have been absucted by aliens,as well, but not ethical ones. Perhaps if you found a psychologist who treated your primary disorder, rather than the one with which you have diagnosed yourself you would be much more successful in treatment.
I have already posted reference to the DSM IV TR, the manual used by professionals in the field to diagnose mental illness. This is the accepted standard of practice for psycholgists, psychiatrists, and clinical counselors. It is compiled by the top practitioners within the field and is based on the most current research.
If you are looking for support for your disorder, I suggest you return to the websites that are designed to help you continue in your illness.
I am *so* glad you are not my mental health professional.
Before the DSM IV TR came out, there was the DSM IV, and before that, there was the DSM III, and before that? DSM II. This means that they are continually adding things to the DSM, and continually taking things out. A condition may exist before it goes in the DSM, or it may exist after it's taken out of the DSM. Being in the DSM does not mean it doesn't exist.
Exactly.
Oh but you are an arrogant so and so! You have the response for everything, you are *so* right and we are *so* wrong.
BIID exists. Again, it's not because it's not in the DSM that it does not exist.
many psychologists have treated many people with BIID for "primary disorders", from borderline personality disorder to OCD, to BDD, and many other things. And guess what? To a person, they ALL report that these things don't work, that at the end, BIID is still present.
It's not *me* saying this, although I agree with it. But when the majority of professionals who have written about BIID state that 1)it exists, and 2)there are no form of treatment short of surgery that touches it, I tend to believe them. I'm sorry Jillio, but your credentials just don't match.
Yes, and we have already pointed out that the DSM is not the be all and end all. But that said, I'll emphasise what you wrote: It is compiled by the top practitioners within the field and is based on the most current research. We've already mentionned Doctor Michael First. Several times. Did you chose to ignore it? He's a top practitioner in his field. He also happens to be an editor of the DSM IV TR and of the upcoming DSM V. I think we also mentionned that he is the one who put forward the term Body Integrity Identity Disorder.
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This may seem irrevalent - but this is my opinion:
Claire, it more or less sounds like your only looking for a therapist that can justify your behavior. Problem is the only therapist would justify it is one that is unethical.
Ana has nothing to with BIID. Anas and Mias want more to do with PERFECT BODIES rather than a debilitated body that is useless or obessed with a body that is ineffective to do what it was intended to do. BIID has alot more to do with self-pity. I would be very pizzed to find out that the woman in the wheelchair that I held the door was only faking it. Get out of the wormhole, get up, walk, hold your head high. You dont need to fake a disability to find a comfort within yourself.
Claire, it more or less sounds like your only looking for a therapist that can justify your behavior. Problem is the only therapist would justify it is one that is unethical.
Ana has nothing to with BIID. Anas and Mias want more to do with PERFECT BODIES rather than a debilitated body that is useless or obessed with a body that is ineffective to do what it was intended to do. BIID has alot more to do with self-pity. I would be very pizzed to find out that the woman in the wheelchair that I held the door was only faking it. Get out of the wormhole, get up, walk, hold your head high. You dont need to fake a disability to find a comfort within yourself.
SnAzZyStyLe2002
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.... ick. That's all I'm gonna say.
Liza
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What happened to agreeing to disagree?
I feel so bad from looking at some of the posts.
I think everyone who has posted here seems pretty sound of mind, just pretty strong willed.
I, for one thing, am giving benefit of the doubt about the transabled (nice on that benefit of doubt, gives a lot of room and tolerance) - there is a lot I don't know and understand about how the universe works so it would be indeed arrogant of me to say this does not exist simply because someone has not covered it
Dixie, and all who made comments like this....
ah, guys, that was pretty harsh, because you do not take WHY and how a human being may choose to be in a wheelchair or want to be Deaf. I still don't fully understand either, but that is no way to discuss with another who has taken the time to explain despite the strong feelings in here.
I am utterly ashamed that we would treat others arrogantly like this when we have that same problem of being treated by others about being Deaf! We are acting just like those who prejudge peeps on color of skin, deafness, etc etc. How dare y'all be so prejudiced? I can't stand this anymore, so I must make this clear that there are other opinions like mine
So, no matter what you may believe of BIID or anything like that, compassion is always the higher road.. and scorn is the lowest road anyone can travel on
I feel so bad from looking at some of the posts.
I think everyone who has posted here seems pretty sound of mind, just pretty strong willed.
I, for one thing, am giving benefit of the doubt about the transabled (nice on that benefit of doubt, gives a lot of room and tolerance) - there is a lot I don't know and understand about how the universe works so it would be indeed arrogant of me to say this does not exist simply because someone has not covered it
Dixie, and all who made comments like this....
ah, guys, that was pretty harsh, because you do not take WHY and how a human being may choose to be in a wheelchair or want to be Deaf. I still don't fully understand either, but that is no way to discuss with another who has taken the time to explain despite the strong feelings in here.
I am utterly ashamed that we would treat others arrogantly like this when we have that same problem of being treated by others about being Deaf! We are acting just like those who prejudge peeps on color of skin, deafness, etc etc. How dare y'all be so prejudiced? I can't stand this anymore, so I must make this clear that there are other opinions like mine
So, no matter what you may believe of BIID or anything like that, compassion is always the higher road.. and scorn is the lowest road anyone can travel on
jillio
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The term Body Integrity Disorder has been in use in the field for quite sometime, and in fact was recognized as a disorder going back to the neo-Freudians. The term used to describe it may change, the disorder does not.
And yes, Michael First is ONE of the editors of the DSM IV TR. And BIID still is not included. And chances are great that it won't be included in the newer revision when it comes out, either.
I'm very gald I am not your therapist, as well. Clients who refuse to take an active role in treatment, ande constantly attempt to point out their uniqueness, and claim that effective treatments don't work for them are a waste of the threapist's time. You are what is commonly referred to inthe field as a "Yes, but." If you are having difficulty in finding a competent therapist totreat you, this is probably the reason. After an initial interview, they simply realize that you are untreatable, not becauseof your disorder, but because of desire to continue in the behavior you claim to want to correct.
If you don't like what is said to you on this forum, then perhaps you would be better off sticking to those forums that support you. After all, this forum is AllDeaf, and we are here to discuss issues regarding deafness. Obviously, that is not your motivation for being here. Youa re simply here to attempt to garner suppport for your, as yet, nonexistent diagnosis.
jillio
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You hit that one dead on, Dixie.
webexplorer
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This reminded me of a student in my class at college a couple of years ago. He pretended to be deaf and knows sign language. I caught him after class talking a teacher some questions without sign language. His teacher had to help and teach him in the class because her boss informed about him that he needed to catch up his skills.
A few months later, I finally asked him whether he is really hearing. He said yes. He told me that he has a learning disability. He never revealed to anyone expect me and his teacher. He had a drug problem in the past that screwed him up. He is better since then. So far, I haven't heard from him for years so I hope that he is doing okay. I have to accept who he is. Now, some people are pretending to be handicapped seem getting worse and they are about disadvantaging us nowadays. (Sight)
A few months later, I finally asked him whether he is really hearing. He said yes. He told me that he has a learning disability. He never revealed to anyone expect me and his teacher. He had a drug problem in the past that screwed him up. He is better since then. So far, I haven't heard from him for years so I hope that he is doing okay. I have to accept who he is. Now, some people are pretending to be handicapped seem getting worse and they are about disadvantaging us nowadays. (Sight)
Kaitin
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I understand nothing......what are "anas" and "mias"?