Body Integrity Identity Disorder (BIID)
Body integrity identity disorder (BIID) is a rare condition in which one’s ideal body image contrasts sharply with actual physical appearance. Thought to potentially be a neurological condition rather than a psychological one, BIID causes those experiencing it to believe a part of the body does not actually belong to them. This belief often leads to a desire to amputate the offending limb.
Although many people experience frustration or disappointment with their physical appearance at one time or another, the dissatisfaction felt by an individual with BIID goes much deeper. This condition often leads those who have it to feel as if one of their limbs is extraneous. They may feel incomplete or disconnected from the rest of the body.
Individuals with BIID might feel, for example, feel as if an arm or leg does not belong to them and may refuse to use the limb or desire to have it amputated. People with this condition often feel anxious or depressed due to the presence of the limb considered to be unnecessary and generally believe eliminating the offending limb will remedy the problem.
What Causes BIID?
The causes of BIID are not well understood. Some researchers speculate early childhood trauma, obsessive-compulsive tendencies, or an over-identification with amputees may contribute to the development of BIID, but due to the rarity of the condition, there is not yet enough research to determine its cause. BIID is not caused by actual physical injuries to the limb, and it is not a paraphilia, as it was once considered to be. With this condition, there is no sexual motivation for the desire to have a limb amputated.brain has not mapped the body correctly. Because this condition is so rare, little information is available, but case reports showing a common low age of onset and exposure to amputees at a young age support this idea, as body mapping occurs early in youth. Individuals who have BIID often report a childhood awareness of the condition, which may lend further support to the theory. Some researchers consider BIID to be a result of the circumstances originally leading to the brain’s incorrect mapping of the body, rather than one single condition.
Some association between personality conditions and BIID has also been noted, and some doctors have compared it to body dysmorphia, a condition that causes individuals to think constantly, in a negative manner, about what they consider to be flaws in their appearance. These so-called flaws, which may be either insignificant or entirely imagined, often cause an individual with body dysmorphia to experience emotional distress and difficulty in daily life, and that person may both attempt to hide the offending body part or seek surgery to correct it. Some similarities between BIID and anorexia nervosa have also been noted.
How Is BIID Treated?
This condition is troubling partially because there is little information about it and no cure. Treatments such as cognitive behavioral therapy and selective serotonin reuptake inhibitors (SSRIs) can often reduce the distress and depression associated with BIID, and some clinicians find treating the symptoms exhibited by those with obsessions and compulsions can help reduce symptoms. Some people with BIID experience an unrelenting desire to become an amputee even after years of psychological treatment, which leads some doctors to wonder if perhaps treatments are not effective because they are not specifically meant to treat this particular condition. Still, debates about effective treatment, as well as the ethics of amputating healthy limbs, continue.
Most surgeons will not perform a medically unnecessary amputation, so while some individuals are able to able to alleviate their desire for amputation to some degree—often using canes and prosthetics to simulate an amputated limb—other individuals may attempt self-amputation or damage the limb they wish removed until amputation becomes necessary.
Further, amputation has only been shown to have a 70% success rate of resolving the symptoms of BIID. Thus, when surgeons do agree to amputate, they do not often do so until all other treatments have failed. Increased awareness of this condition is needed, both to support those who have been diagnosed and so that more effective treatments, and possibly a cure, may be developed.
Ethical Concerns Surrounding BIID
BIID generates important ethical questions. People with the condition may desperately want to have a limb amputated, raising issues of personal autonomy and informed consent. Amputating a perfectly functioning limb is a troubling proposition to many medical professionals, but some have questioned whether it is in fact harmful to refuse a person a potentially helpful treatment that may lead to an increased quality of life.
Another concern is that those who undertake to amputate their own limbs or attempt to find someone who will perform the procedure for them may face serious complications, even death, due to unsafe and unlicensed surgeries. A man died in 1998 of complications following surgery, after the desire to remove his leg led him to allow a surgeon who had lost his license to perform the amputation.
Some doctors are working to add BIID to the Diagnostic and Statistical Manual (DSM), but others are unsure. Those who support its inclusion argue including it may lead to further interest in the condition, facilitating research and possibly leading to further treatment options.
- Blom, R., Hennekam, R., & Denys, D. (2012, April 13). Body Integrity Identity Disorder. Retrieved from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3326051.
- Body Dysmorphic Disorder (BDD). (n.d.). Retrieved from http://www.adaa.org/understanding-anxiety/related-illnesses/other-related-conditions/body-dysmorphic-disorder-bdd.
- Henig, R. (2005, March 22). At War With Their Bodies, They Seek to Sever Limbs. The New York Times. Retrieved from http://www.nytimes.com/2005/03/22/health/psychology/22ampu.html?pagewanted=1&_r=3&oref=slogin
- Muller, S. (2009). Body Integrity Identity Disorder (BIID)—Is the Amputation of Healthy Limbs Ethically Justified? The American Journal of Bioethics, 9(1), 36-43. doi: 10.1080/15265160802588194.
- Novella, S. (2013, April 16). Body Integrity Identity Disorder. Retrieved from http://theness.com/neurologicablog/index.php/body-integrity-identity-disorder.
Last Updated: 01-8-2016
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DavidApril 1st, 2015 at 4:10 PM
I am a 43 year old man who lives in the North of England. I have suffered from the desire to be an amputee for as long as I can remember. I dream about being an amputee every waking hour of every day. It has greatly affected my lifestyle. I strongly believe if I had put my leg under a train when I was a teenager, my life now would be a lot better than it is. Although I would have to live with the physical difficulties of being an amputee, I think it would be less detrimental to my life than living with the mental issues of BIID every day. Rather than spending my life dreaming of being an amputee, I would be able to build relationships, a family and a career as an amputee. I have tried to seek help from several mental heath charities, but have received no help. I am affraid to discuss this with my freinds and family because it would upset them. I think if I became an amputee through illness or accident it would be easier for them to accept than my BIID. I do try to ‘pretend’ to be an amputee when I am alone. I often tie my leg off restricting the circulation in an attempt to kill my leg. I know this can be very dangerous. I have no desire to die but sometimes think it may be easier than having to live with these feelings. I would be willing to give more details if you are interested. Thank you.
JeromeNovember 1st, 2016 at 9:21 PM
Has anyone considered in past life you lost a limb and this is why it feels wrong for you? Try a Hypnotist to find out about a past life.
DavidNovember 8th, 2016 at 2:29 PM
Thanks for your interest. I have tried seeing a hypnotist. He did help me, he put me under and I thought I had a prosthetic leg. I cant remember much but it was a fantastic feeling, however he wouldnt let me stay like that outside of his control. I never thought of the past life transgression, so it might give me some sort of answer. Thank you for your suggestion.
KendraNovember 18th, 2016 at 12:34 PM
Hello David and anyone else who is interested,
I am a student of disability Studies and am writing my thesis on Biid. Would you be willing to answer a few questions to help me with my research? I am focusing on how society marginalizes people with Biid and how true autonomy is refused to those living with Biid.
Thanks for your time and hope to hear from anyone who is willing to speak to me.
DianaNovember 18th, 2016 at 3:14 PM
Good luck with you thesis. If you would like to reach more people with BIID, consider trying a couple of BIID online forums. For best results, contact the moderator(s) first and include as much academic information (your institution, thesis advisor, scope of planned work, any IRB approval sought or given, etc) as you can as well as your plans for ensuring anonymity and privacy of any participants.
Here is a link to an English speaking one:
Here is a German-speaking one (which is more active than the English-speaking one, so worth it if you speak/read German):
All the best,
DavidNovember 27th, 2016 at 3:22 PM
I would be willing to discuss any part of this with you. If you could leave some way of getting in touch please. I relise the moderator of this site has to consider their responsibilities, but any conversation about this terrible condition helps in a small way.
JordanDecember 14th, 2016 at 5:31 PM
I am willing to help you. I have this disorder. It is so devastating..
VanchhaJuly 3rd, 2017 at 1:58 PM
I’m a journalist and writer. When I read about this disorder for the first time it was so hard for me to accept this. Ive done some researches and now I can understand your suffering. I want to raise awareness related to this topic.
Anyone who is interested to share there details and experience with me may respond.
Your help will be really appreciated.I believe that this disorder is not as rare as it appear. There is lack of awareness which can help others to understand your pain and can be helpful for others also.
AMJanuary 4th, 2018 at 7:42 PM
I have to admit, I initially felt this was more attention seeking behavior than an actual disorder when I first started reading abou BIID. However, after reading some of the comments from folks suffering with this ailment… this might sound insane, but could you all have a parasitic infection? Sometimes, parasites can impact brain and nerve endings. For me, I had pain and tingling in my limbs. Thankfully, I only had this issue for a year and was treated. However, if it went on for years, I might want to cut it off, too. I hope you find a solution to your ailment. It must be awful to have this feeling.
JamesMarch 2nd, 2016 at 8:15 AM
I’m an MA Journalism student in London doing a documentary on (BIID). Myself and a colleague are looking to explore the condition in a sensitive and respectful way, while raising public awareness.
If you are willing to be interviewed then please get in contact (you can remain anonymous if you’d like).
Thanks in advance!
DavidMarch 23rd, 2016 at 2:38 PM
I would be willing to speak to you, but I would like to stay anonymous if possible.
JamesMarch 24th, 2016 at 6:27 AM
We’d be delighted to talk to you – and we’d happy to do it anonymously.
Looking forward to hearing from you.
James WMarch 26th, 2016 at 3:17 PM
We would be delighted to speak to you and of course we can do so anonymously.
DavidApril 3rd, 2016 at 2:52 PM
Good evening James.
I have been in contact with Alex from Blink films. Thank you for your interest I hope your project goes well.
Keeley LMarch 31st, 2016 at 8:45 AM
My name is Keeley, I work for Blink Films. We are researching BIID for our documentary. Our documentary will be a sensitive exploration of this little known condition. We are speaking to leading experts in the field to gain their steers on how to deal with the subject and to gain a full understanding of the condition. This will not be an inflammatory piece, it will raise awareness and explore a range of iterations of BIID as well as possible treatments.
I imagine its going to be very difficult to get people to come forward and talk to us but if we do I think it will be a very important documentary that will hopefully lead to understanding, compassion and more importantly more research being done by medical experts in the field to help people with BIID.
If you have any steers on where I might be able to find communities more likely to have BIID people in the do let me know.
DavidApril 3rd, 2016 at 2:50 PM
Good evening Keeley.
I have been in contact with Alex from Blink films. Thank you for your interest I hope your project goes well.
JordanDecember 14th, 2016 at 5:33 PM
Dear Keeley i would love to give my contribution for the documentary. I live in Portugal. Is there any problem?
JohnOctober 29th, 2017 at 5:51 AM
My novel, An Imperfect Man, published in Canada, in French and in English, narrates the fictitious life of a main character with BIID
JohnMay 13th, 2016 at 1:35 AM
Hi… i need help on my BiiD. Need some one to get me (Biid Fix). Can some one serious help me get a solution to my problem… fast pls. ??
May 13th, 2016 at
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MeganJune 10th, 2016 at 9:07 AM
Hello David (and any others who might be interested). I’m a writer, and doing some research for a novel I’m writing. I would really like to get a better understanding of BIID by speaking to some people first hand. If you would have any interest or time to speak to me over email I would be so grateful.
All my best,
johnJune 12th, 2016 at 9:09 AM
hi… how can i reach you?
MeganJune 13th, 2016 at 1:32 AM
Hi John, thank you for the response.
The GoodTherapy.org TeamJune 13th, 2016 at 4:31 PM
Personal contact information has been redacted from this comment. We apologize for any inconvenience!
The GoodTherapy.org Team
DavidJune 21st, 2016 at 3:32 PM
I would be happy to help you any way I could.
ANDREDecember 30th, 2016 at 5:53 PM
Yes hi Megan, I hope I’m not too late but I am interested, I as well have BIID
JeffJuly 4th, 2016 at 2:58 PM
I have a problem with all this. I felt for quite some time that my arm is not mine. It is half way up my forearm, which is the part I don’t feel is mine. There is a distinct line, diagonally across my forearm and I have thoughts about cutting it off with a saw. I feel that people will think that I am trying to get sympathy. I wouldn’t cut my arm off, but I do think about it and my forearm on my left arm feels very different to the right. I told my psychiatrist about this and I worry that she just thinks I am attention seeking. I have read that some people think that there is a sexual desire to loose a limb or that people want to be an amputee. I don’t want to be an amputee, but I don’t feel this arm is mine. it feels different, even though I am typing with it. I have no sexual desire or curiosity to satisfy. It just does not feel as though it ought to be there. It feels too secret and embarrassing to talk to any one else, I have never told my wife. I told my psychiatrist, because I was hoping that there may be a reason for it, but she has not told me why. I wonder if she feels to awkward to say that I am a weird person who thinks of cutting off his arm. Sad but true.
DavidNovember 8th, 2016 at 2:39 PM
Have you ever researched alien hand syndrome. This may be something for you. I suffer with BIID, I think. Most BIID sufferers I have come across have been very specific about their amputations. Mine are mainly right leg above the knee, but I do have times when I desrire an arm amputation, usually right below elbow. I hope you find an answer.
RayaSeptember 13th, 2016 at 3:59 AM
I’ve been living most of my life feeling like I need to go blind, but, like Jeff, have been too embarrassed to tell anyone. I am unsure whether the need to go blind counts as BIID, but it has caused extreme depression on my part. I have tried in the past to make my eyesight worse (ex. Bleach), but I’ve always had a low pain tolerance so I didn’t go through with it.
DianaSeptember 15th, 2016 at 8:26 AM
Yes, the need to be blind does count as BIID. I am in a German and an English speaking BIID forum. There are at least 4 people with blind BIID in the German forum and 2 in the English forum. (There is also the much publicized case of Jewel Shuping. ) From what I know, many people with blind BIID find some relief by pretending to be blind – privately and/or publicly – aka blind simming. There is also a blind simming forum out there somewhere. You are not alone . . . .
DavidNovember 8th, 2016 at 2:32 PM
Could you help me find one of your English speaking forums. I would love to know someone else has these feelings. Thank you.
DianaNovember 18th, 2016 at 3:01 PM
I am just seeing your message now. Here is a link to the English-speaking BIID forum I spoke of:
That link looks awfully long – here’s another shorter version:
Hopefully at least one of those will work – hope to see you in there soon.
There was another English speaking forum in the past which has since closed down, but you can still see some of it here via the Wayback Machine:
Other less straightforward places to meet people with BIID online include DeviantART and Second Life.
Good luck – you are not alone!
JordanDecember 14th, 2016 at 5:40 PM
Please does anybody can help me? I am struggling and suffering so deep inside with my BIID disorder. I already tried to contact more than 100 medical tourism agency world wide, so far i am just getting no, after no. I need a surgeron to perform my leg amputation, to regain my confidence and keep living my life. My daily routine basically consists on waking up every day and send at least 15 emails for surgerons trying any positive feedback. If anybody has ANY light please contact me i will be very discreet. I can no longer living suffering in a such way. Thank you for your attention.
DanijelaFebruary 6th, 2017 at 3:27 AM
I just stumbled across this article and comments and I just had to contribute even though its extremely hard for me to even write it down, For as long as I can remember I had thoughts and fantasies about not having both of my legs. I remember that when I was only 4 or 5, during the summer holiday with my parents in Greece, I used to play a “game” all by myself in the shallow water – I imagined that I had no legs and I kept myself on the surface just with my arms – I could spent hours in the water not moving my legs at all – I tried to forget that they are there. The thing that is confusing to me is the fact that I don’t have that feeling of “foreign element” that does not belong to me… I am fine with them and I feel them as mine. I just feel that I should live without them and that I should look that way – legless. Also – I don’t want to be disabled “per se” but I am fine with the fact that being without both legs implies severe disability and I am ready to someday live like that. I have seen the therapist on this and received no help so far. I am not close to planing how to execute this but I can feel that over years my desire have just grown and I also I feel that I am being more and more sad, depressed even, because of the fact that I might be “sentenced” to life with legs and no opportunity to ever get rid of them… On the other hand I am very specific about my desired look (which is typical for BIID) – it’s very, very high amputation of both legs with extremely short stumps. Just like someone stated in his comments above – I spend every awake moment thinking about it. And when I look down to my legs I can almost “see” that invisible line where I want them amputated… This affected my whole life and I even though I can see myself struggling against this for the rest of my life I would love to “find the cure”…. So far I found nothing,
JoyFebruary 6th, 2017 at 1:34 PM
Hey Danijela. Where r u from? I know people that can really help you regarding the amputation if you want.
RobSeptember 18th, 2017 at 2:00 PM
I have the same problem too
Gabrielle PFebruary 15th, 2017 at 2:10 PM
I had a partner from germany and he had BIID. Is there a cure from this disorder. I am always worried to him.
What should I do?
JodanFebruary 15th, 2017 at 3:47 PM
There are two options either undergo psychiatric treatment or the amputation surgery. I know a good contact for the surgery. They are a company based in Europe, that provides this kknd of treatment.
ResFebruary 17th, 2017 at 1:25 AM
What’s the name of this company?
DaveJune 17th, 2017 at 6:14 AM
Yes, any information about doctors who are willing to perform amputation surgery would be much appreciated.
RemyAugust 30th, 2017 at 3:34 PM
I’m pretty sure I actually have BIID, which explains so, so much about feelings thoughts I’ve had for as long as I can remember about how one or both of my arms should be broken or disabled. I even used to make fake slings as a kid. I never really acted on my feelings though and I’ve never even broken a bone before, but I’ve always been made uncomfortable by these thoughts and never understood why I had, and continue to have them. They’ve just kind of always been present and I had no explanation for them, but now I actually get it. It also kind of makes sense for me to have this since my mom was disabled and couldn’t move one of her arms, which I know being close to someone who is disabled or an amputee can cause BIID in some cases. It all really clicks together for me and I’m really, really happy I’ve found out why I’m like this!
Although the problem is that while researching it there’s a lot of people calling it weird or how it just makes no sense, which yeah it’s an uncommon disorder, but I can’t control this. I can’t do anything about it. Researching this hasn’t been the most comfortable for me. Hell, I actually found out about this through some people criticizing people with BIID for glorifying disability.
Sorry for rambling ;.;
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