Bizarre Disorder Makes People Want to Sever Their Own Limbs

By Andrew Moseman | August 25, 2008 12:49 pm

amputeeWe’ve heard a lot about “cutters” and other people who feel compulsions to hurt themselves. But there’s an extra, extreme level above that: Body Integrity Identity Disorder.

BIID‘s somewhat cryptic name belies a strange affliction—its sufferers feel that their normal bodies are wrong, and that they were born to be paraplegic or handicapped. The compulsion is so strong that some with the disorder try—and succeed—at amputating their own limbs. Newsweek mentions one who, after many failed attempts to lose his left hand, cut it off with a power tool and then lied to his family that he lost it in an accident. Another man froze off his own leg.

Many doctors don’t even know how to classify such a strange phenomenon. Those lobbying for its inclusion as a mental disorder compare it to Gender Identity Disorder, in which people get sex changes because they feel out of place in their natural body. But performing a sex change operation is one thing, and amputating a healthy limb is quite another.

Indeed, how to treat BIID patients is a medical and ethical quandary. A Scottish doctor operated on two sufferers who wanted to lose their limbs, but when news of his actions broke, the hospital put a stop to it. His argument for amputating, oddly enough, was to cite his obligation under the Hippocratic Oath to do no harm—if he hadn’t amputated, the BIID sufferers would have been driven so crazy by their compulsion to lose a limb that they would’ve done it themselves or paid somebody else for some back alley operation.

Going through with the surgery is the only treatment that’s worked so far, but it seems unlikely that willing amputations will soon become common practice.

Image: iStockphoto

MORE ABOUT: mental health
  • http://transworkplace.blogspot.com Dr. Jillian T. Weiss

    There are significant differences between apotemnophilia (the erotic desire to lose a limb) and gender identity disorder, and comparisons between the two are invidious. Most significant is that, in the former, the desire for the surgical operation is primary., whereas in the latter, the desire is to live in a different gender role, and the surgery is a means to an end. In fact, most transgender people (those who live in a different gender role) do not have sex reassignment surgery, and the insistence on surgical intervention may be, in part, an artifact of the medical profession. For more information about transgender people and their issues, see http://transworkplace.blogspot.com

  • Leah Peters

    This is rediculous! First of all transsexualism (gender identity disorder in the article) is NOT a mental illness, it’s a naturally occurring birth condition. It may be in the DSM now, but we are starting the process of removing it. Second, you seem to be implying that transsexualism is an amputation fetish. That wrongheaded slam against transsexual people. Transsexualism isn’t about altering the body or clothes or about sex. It’s about IDENTITY!!! A primer:

    Transsexuality 101

    What is a transsexual?

    For simplicity, a transsexual is a person whose inner sense of gender identity and brain patterns are completely the opposite of what physical form they are born into. This is a recognized medical condition which is completely unrelated to sexuality or sexual preference at all, but unfortunately society sees only brazen gay and bisexual people out there using gender bending to express their sexuality and assumes this is what transsexuals are too. A real transsexual has no more in common with a drag queen, gay or bisexual person than they do with a chimpanzee! They have a deep basic incongruity between their inner identity and their physical form which can only best be expressed as something which is within their very soul. Transsexuality occurs in equal numbers across born male and born female people. Estimates are that approximately 1 in 30,000 people are born with the condition.

    How does this happen?

    There are many things known today through years of research, though no one single absolute cause has been quantified as of yet. It is almost universally believed that during the formation of the fetus in utero, a hormonal imbalance affects the development of the body sex characteristics in a way that is misaligned with the core gender brain wiring. The brain “gender identity” is determined very early on in the fetal growth process, though the messages of an incorrect hormone balance sent to the developing fetus? body, redirects the “intended” natural development to the wrong physical gender. Once born, while growing up the body?s own hormone generators then further the physical discrepancy – especially once puberty arrives. Unique chormosonal or genetic influences are also possible contributing factors that are being researched as additional contributing components to the phenomenon. It is very important to understand that no two things in nature are alike – there is no black and white bipolar scheme in life, and random types of birth development happen in all species, including transsexuality. Much more common birth development variations include Androgen Insensitivity Syndrome , Klinefelter Syndrome , being Intersexed , or Gender Mosaic.

    Transsexuality is not hereditary, and a person cannot not just “become” transsexual one day. As an extremely complex birth condition the situation is simply a variable in nature and there is nothing and no one to blame. It can actually be a very enlightening, even religious experience about the nature of the universe and humanity far beyond simple primative bi-polar sociological models. Most transsexuals are acutely aware of something feeling incorrect from a very early age but lack the ability to approach the issue. Transsexuality is not contagious, a “demon” or a cult into which someone can be enticed into – one cannot “catch” it, or turn into it…one is simply born transsexual. It occurs across all races, socioeconomic classes, religions, and childhood family upbringings, and has been documented throughout history for thousands of years…many cultures even have revered or worshipped them for having extraordinary vision and wisdom. Transsexuals are actually very good, intelligent, family loving people who are valuable, creative and productive members of society when given the opportunity to flourish without oppression.

    How could someone want “that” surgery?

    The person with transsexuality eventually must learn to accept their situation if they are to survive happily in self congruity, and not be rendered incapacitated by depression and other co-morbid mental health problems out of frustration and despair. They often have worked very hard at being everything they could for everyone else but no matter how hard they try, they always come up feeling empty and unfulfilled because they are still not whole. These feelings magnify over time until eventually the individual is overwhelmed in dysphoria. They may have tried to live in a role and style that is incongruous for a long, long time until it finally becomes unbearable? this can become a critical life threatening time for the transsexual. To simply try to even live in some sort of duality or “alternative lifestyle” without true physical and social alignment is to just continue the intolerable hypocrisy of a masquerade in a different form, still being something they are not. The ultimate goal is to be truthful and completely real unto themselves as their true gender identity dictates. The only real option left then becomes the social process of transitioning to their correct gender and also the medical process of hormone therapy and surgery. Physical pain and expenses become completely insignificant in comparison to the prospects of having to endure living life in a false way any longer.

    The Life Experience of a Transsexual.

    A person with transsexuality will almost always go through many devastating and long stages of fear, guilt, anger, shame, self loathing and emotional distress throughout their life as a result of the incongruity. They know that they will also likely face fear, hatred, prejudice, violence and rejection ? sometimes even from those they may love or respect most. No one wants or chooses to have this happen to them, so as a result transsexuals typically live seriously disrupted lives tangled in deep inner emotional conflict. They must go through a very long difficult process of getting beyond their internalized conflicts and societal pressures by learning to finally accept that this is just who they are, and these are the cards they have been dealt in life. It is then that they realize they must play it out to the best of their ability to achieve congruity, for their own health and well being.

    Often those with transsexuality will attempt almost anything in the world to avoid facing their fears and unavoidable situation, including super-human macho activities or careers, marriage, family, extreme creative endeavors or even turn to religion, drugs or alcohol to escape. Sooner or later though, if they have survived this far they will find that these things did not work and they must face yet another even greater battle with their transsexual “demon”. The fear of facing the issue can instill an emotional paralysis that can be difficult if not impossible to shake. It is then that they must seek professional assistance to gain some kind of movement in their situation. There is an immense amount of deep inner personal work ahead for someone who reaches this point, many unfortunately, never make it. If they do, they come to realize that the “demon” was an internally fabricated myth woven out of fear of change, emotion, insecurity and social pressure – It was never even really there at all. As US President F.D.Roosevelt. put it – “the only thing we have to fear is fear itself?nameless, unreasoning, unjustified terror which paralyzes needed efforts”

    The Final Freedom.

    Once the transsexual person has overcome their fears, guilt and shame and accepted themselves and learned to feel self worth, happiness and inner pride, with proper guidance they will move forward through transition and on to establish new lives in the properly aligned role. The period of time can be short sometimes for very young transsexuals who can’t find coping skills in life or are less affected by social “role” pressures to conform to – or it can take years, even decades to unfold. The path can be a treacherous, painful, expensive, lonely and emotional one but it can be done successfully with the highly rewarding end result of rising above the flames of their torment and dysphoria like a Phoenix from the ashes.

    To just feel “normal” is something almost everyone takes for granted in life – For the person afflicted with transsexuality, it is the Holy Grail. Once an individual passes through the processes involved, wholeness of being is achieved and the person can transcend their past medical condition and live a balanced, normal life.

    Source: http://dazzled.com/igirl/ts101.htm (link no longer active)

    Much more info can be found here:

    http://ai.eecs.umich.edu/people/conway/conway.html

    • Deaconblue9038

       Okay I understand that transsexuals ,gays and lesbians don’t like to hear that their feelings that they where born the wrong gender is a mental issue. But the fact of the matter is that a guy was born to be a guy,a human was meant to be born with ten fingers ten toes , lions where born to chase Gazelles, fish where born to swim. For anyone to believe in their heart of hearts any different means nature made a mistake or something is wrong with the brain! Because it’s a natural occurring thing doesn’t mean that nature didn’t make a mistake or there isn’t a need for a cure for the problem if a cure can be found .  It also doesn’t make the mistake made by nature “normal” !If that’s “normal” and no mistake was made by nature then people who are naturally compelled to abuse little children or women is “normal” . Alcoholism and drug addiction is “normal”, sex with the dead is “normal” and any other “emotional feeling” that is considered “abnormal” is realistically “normal” and any action,feeling or belief need not be oppressed. So where does that lead us as a society??  Just doing whatever weird sick perverted things we can come up with and calling it normal,no matter what destruction it causes. So,be careful when pointing a finger or classifying one abnormality as “normal” but shunning another as abnormal. You simply open them all up for judgment,there’s a reason why homosexuality and other natural occurring “mistakes” where hidden from society for so long by those stricken by the disorder. Even they knew……”something went wrong when nature made me!!!”, and there’s no denying that fact!! We can accept it, give them all the room in the world to live equally,give them all the rights in the world but it’s not “normal”. No more than being born blind or without feet or with no kidneys,it’s not the way nature intended it to be.

    • kerrigliesinger

      why are you so worked up about the whole transsexual thing. no one cares. it was one line in the whole article. we get it, your transsexual and its a sore spot. i really doubt anyone is searching this wierd information to find out about transsexuals. i didnt find it from that. Im not sure how i got to this, but it wasnt for that. geez, move on

  • nervavels

    And I’d like to point out that BIID is NOT apotemnophilia; it is not an erotic desire but a discrete and physically-felt compulsion that the body part in question is not natural and needs to be removed.

  • Anna Haynes

    Do people with BIID get phantom limb pain, after the limb is removed?

  • Joan

    Science has been finding consistent evidence, which suggests gender dysphoria (transsexualism) is due to a congenital condition. Differences in brain structure have been discovered, which strongly suggests the need for further research to verify the effect in a much larger sample. Animal research has shown that reversals in sexual behavior can be induced by imbalances in the hormonal environment in the womb. Androgen Insenstivity Syndrome has shown that a response to testosterone is required for a masculinization of behavior. That means:

    1. No testerone (when the brain is developing) means the brain will develop in a feminine pattern.

    2. If the brain is unable to respond to the testerone, the brain will also develop in a feminine pattern.

  • http://www2.uic.edu/~hfarme2 HFarmer

    I must object to equating transsexualism with any desire to cut off any part of the body. As another commentor has already said the real defining quality of transsexualism is wanting and needing to live as the gender opposite to one’s biological sex. Many many transsexuals do this without ever wanting or needing surgical intervention. Female to male transsexuals are often considered fully transitioned w/o having any genital surgery. Many many male to female transsexuals, especially now a days, opt to either not have or indefinately postpone genital surgery….feeling that the effects of hormones or other cosmetic surgery are quite enough to affirm that they are female.

    I personally am sure that their exist transsexuals for whom being transsexual is all about having SRS and they have an erotic fixation on the operation. That such people exist is a fact no one can deny. However to say that ALL transsexuals are so described is also wrong. No one not even Dr. Blanchard has said that ; for even his theory allows for another kind of transsexual. This article does not even admit that much!

  • http://biid-info.org Sean O’Connor

    The condition of apotmenophilia was relabelled body integrity identity disorder because people who have it are not primarily motivated by sexual compulsions. It is a question of body image.

    There are many more similarities in the experiences of transgendered individuals with those who have BIID than there are differences.

    Early research out of UCSD is pointing to an anomaly in the body schema area of the brain of people with BIID, so it is not “just” a mental thing.

    I am not sure why those who are transsexual are so adamant and afraid about being compared to those who have BIID.

  • Pingback: Trapped in a Functional Body? «

  • Steve

    I was born with Spina Bifida,which left me with a weakness in my left arm,which over the years has become worse,im now 38 yrs old and its too much to bear anymore,its like i know its there but i can’t feel texture at all and there is no chance i’ll get the feeling in my arm,im sooooo desperate to have it removed,its got no use and makes me feel sick at the thought of it been there,its not part of me and has to go.PLZZZ can anyone help???????

  • bryan

    if someone wants to amputate something, who is anyone to classify it as a mental disorder. people have to right, the complete right to do what they want to their bodies. even if that means removing limbs. it is not wrong or immoral for a doctor to perform any surgery that a patient wants. i hold that discussions about what people choose to do with their live or themselves is immoral. telling other people what they can or cannot do with their bodies and lives in is immoral. it illegal to commit suicide, and if that isnt the most immoral thing in the world, to put someone in jail or punish them for trying to leave this earth then what is. its all about control. control. control. to control you, your thoughts, feeling, and body. i say, f*** you. i will do what i want and if you judge me i dont give a s***. punish me and i will punish you.

    [Moderator's note: edited the cuss words.]

  • Diannalane37

    This is the most bizarre and disturbing thing I have every read on. But in my honest opinion, every human should have the right to have a limb surgically removed if they please. Not that I’m saying its right, but doesnt it seem easier and a hell of alot safer to have a doctor cut it off, then the person cutting it off their selves. I mean, you can put these people in therapy all you want, its not going to change anything.

  • http://injury-compensation-zone.co.uk/hand-arm-vibration-syndrome hand arm vibration syndrome

     Employer has a duty to protect you and should be working on measures to minimize  the risk by taking care of the levels of vibration.There are many different types of hand-held power tools and equipment which can maximize  ill health from vibration. If you have sustained a hand arm vibration syndrome injury and would like to know more then you are welcome to pursue a claim after  speaking to a solicitor…………

  • educated individual

    What a croc this article is, Transexualism is nothing like this disorder, do some research..unbelieavable….??????

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