Stumped? A beginner’s guide to xenomelia and body integrity and identity disorder

In a previous blog, I overviewed apotemnophilia, a sexual paraphilia in which individuals derive sexual pleasure and arousal from wanting to be an amputee. There are many case studies in the psychological literature where the individuals want to be an amputee but has no sexual motivation whatsoever. All of these published cases (irrespective of sexual or non-sexual motivation) are examples of what is often referred to as Body Integrity Identity Disorder [BIID]. Some psychologists – such as Dr. Robert Smith in a 2004 issue of the journal Psychiatry – also refer to BIID as ‘amputee identity disorder’.

A recent paper by Dr. Leoni Hiltie and her colleagues in the journal Brain, also reported a similar related condition that they call ‘xenomelia’ that is defined as “the oppressive feeling that one or more limbs of one’s body do not belong to one’s self”. (Having said that, it was actually Dr. Paul McGeoch and his colleagues who coined the term ‘xenomelia’ in a 2011 issue of Journal of Neurology, Neurosurgery and Psychiatry, where they reported four cases of individuals who wanted healthy limbs amputated – see below for more details of their study). However, just to confuse things further, another recent paper by Dr. Peter Brugger and his colleagues in the journal Frontiers in Psychology reports that xenomelia is the ‘foreign limb syndrome’ and is the new name of BIID characterized by the non-acceptance of one or more of one’s own extremities and the resulting desire for elective limb amputation or paralysis”. In yet another paper in a 2012 issue of American Behavioral Scientist, Dr. Jenny Davis refers to such individuals as being born ‘incorrectly-able bodied’ and thus defines the condition as ‘transableism’.

(I ought to add that I emailed Dr. Brugger to try and clarify the different defintions. He very helpfully replied that the “[Frontiers in Psychology paper] has a broader focus that the Brain paper. I more and more think that the social-psychological component of BIID [being equal to] xenomelia is larger than we assume. The many names (Jenny Davis used ‘transableism’) tell us that we are still in kind of pre-scientific state of research into the disorder. I prefer ‘xenomelia’ because it is neutral as to any interpretation”).

There are no estimates in the academic literature of the incidence or prevalence of BIID and related disorders. The website claims it has 1,500 visitors per day while another (unnamed) Yahoo! web group mentioned in a 2011 Newsweek article claims to have 1,700 members. Most academic papers on BIID report that those who suffer the disorder have a fixated desire to amputate one or more healthy limbs and often ask medical surgeons to amputate the limb(s) as a way to restore their psychological stability because they feel an “incomplete” person with four healthy limbs. Obviously this is very controversial but there is little evidence that medication and/or psychotherapy can successfully treat such individuals. The thinking of BIID sufferers is that an amputation would totally relieve their suffering. According the Wikipedia entry in BIID:

“The sufferer has intense feelings of envy toward amputees. They often pretend, both in private and in public, that they are an amputee. The sufferer recognizes the above symptoms as being strange and unnatural. They feel alone in having these thoughts, and don’t believe anyone could ever understand their urges. They may try to injure themselves to require the amputation of that limb. They generally are ashamed of their thoughts and try to hide them from others, including therapists and health care professionals. The majority of BIID sufferers are white middle-aged males, although this discrepancy may not be nearly as large as previously thought. The most common request is an above-the-knee amputation of the left leg”.

As I pointed out in my previous blog on apotemnophilia, many individuals who want to have a healthy limb amputated often pretend to be amputees and utilize prosthetics and assistive devices (e.g., crutches, wheelchairs, etc.) so that they can temporarily feel as if they are actually disabled and an amputee. Some psychologists, such as Dr. Robert Bruno (writing in a 1997 issue of the Journal of Sexuality and Disability, argue that those wanting to amputate a healthy limb are suffering from a Factitious Disability Disorder (FDD) and is akin to Munchausen’s Syndrome.

FDDs are conditions in which disability – real or pretended – provide an opportunity for the sufferer to be loved and attended to where no such opportunity has otherwise existed. The commonality between both conditions is they engage in the behaviour “for the sake of being a patient” (to receive the care and attention that would otherwise not be obtainable). Bruno argues that those with BIID need only one – albeit very extreme – medical intervention that leaves them with a lasting and obvious stigma of disability that they believe will permanently satisfy their need for love and attention.

However, other authors (such as Jenny Davis) point out that many such individuals simply believe they were born with an incorrectly-able body and that the desire for amputation has little to do with wanting to be a patient but want to have a healthy limb amputated just to feel normal and complete. Other similar conditions also exist such as those individuals who desire to become paralyzed, blind, deaf, etc. In a 2011 article in Newsweek by Jesse Ellison, it was reported that for some BIID sufferers, the compulsion is so strong that they successfully amputate their own limbs. The article reported the case of one man who had made many attempts to sever his left hand but finally managed to cut it off using a power saw (and told his family he had done it accidentally). Another man froze his own leg so that it had to be medically amputated.

One theory on the origin of BIID is that it is a neurological failing of the brain’s inner body mapping function (located in the right parietal lobe). The four individuals in the paper by Dr. McGeoch and colleagues underwent a magneto-encephalography (MEG) scan during tactile stimulation of sites above and below the desired amputation line. The authors reported that their findings revealed:

“Significantly reduced activation only in the [right parietal lobe] of the subjects’ affected legs when compared with both subjects’ unaffected legs and that of controls…[We] propose that inadequate activation of the [right parietal lobe] leads to the unnatural situation in which the sufferers can feel the limb in question being touched without it actually incorporating into their body image, with a resulting desire for amputation”.

Such findings suggest that the condition is more biologically than psychologically based and suggests why such people appear to be resistant to psychological treatments and interventions. This also leads to some interesting ethical questions about whether someone who is physically healthy should have a medical intervention (i.e., an amputation) to become psychologically healthy. An interesting paper by Dr. Tim Bayne and Dr. Neil Levy in a 2005 issue of the Journal of Applied Philosophy reported that:

“In 1997, a Scottish surgeon by the name of Robert Smith was approached by a man with an unusual request: he wanted his apparently healthy lower left leg amputated. Although details about the case are sketchy, the would-be amputee appears to have desired the amputation on the grounds that his left foot wasn’t part of him – it felt alien. After consultation with psychiatrists, Smith performed the amputation. Two and a half years later, the patient reported that his life had been transformed for the better by the operation. A second patient was also reported as having been satisfied with his amputation. Smith was scheduled to perform further amputations of healthy limbs when the story broke in the media. Predictably, there was a public outcry, and Smith’s hospital instructed him to cease performing such operations”.

Bayne and Levy argued that in the case of some people with BIID, the ‘healthy limb’ is not as healthy as it might appear mainly because the sufferer perceives the limb not to be their own. In essence, they argue that the disorder is one of depersonalization and that such disorders are “invisible to the outside world”. They conclude (and I have to admit that I am persuaded by their arguments) that just because we can’t see the problem doesn’t mean we should dismiss the suffering that the condition might cause. They acknowledge that question of whether amputation is an appropriate response to this suffering is a difficult, but believe that in some cases it might be justifiable to amputate a physically healthy limb.

Dr Mark Griffiths, Professor of Gambling Studies, International Gaming Research Unit, Nottingham Trent University, Nottingham, UK

Further reading

Bayne, T. & Levy, N. (2005). Amputees by choice: Body Integrity Identity Disorder and the ethics of amputation. Journal of Applied Philosophy, 22, 75-86.

Bruno, R.L. (1997). Devotees, pretenders and wannabes: Two cases of Factitious Disability Disorder. Journal of Sexuality and Disability, 15, 243-260.

Davis, J. (2012). Prosuming identity: The production and consumption of transableism on American Behavioral Scientist, 56, 596-617.

Ellison, J. (2011). Cutting desire. Newsweek, October 28. Located at:

Hilti, L.M., Hanggi, J., Vitacco, D.A., Kraemer, B., Palla, A., Luechinger, R., Jancke, L., & Brugger, P. (2012). The desire for healthy limb amputation: Structural brain correlates and clinical features of xenomelia. Brain, 136, 318-329.

Large, M.M. (2007). Body identity disorder. Psychological Medicine, 37, 1513-1514.

Smith, R.C. (2004). Amputee identity disorder and related paraphilias. Psychiatry, 3, 27-30.

Wikipedia (2013). Body integrity identity disorder. Located at:

McGeoch, P.D., Brang, D., Song, T., Lee, R.R., Huang, M. & Ramachandran, V.S. (2011). Xenomelia: A new right parietal lobe syndrome. Journal of Neurology, Neurosurgery and Psychiatry, 82, 1314-1319.

About drmarkgriffiths

Professor MARK GRIFFITHS, BSc, PhD, CPsychol, PGDipHE, FBPsS, FRSA, AcSS. Dr. Mark Griffiths is a Chartered Psychologist and Distinguished Professor of Behavioural Addiction at the Nottingham Trent University, and Director of the International Gaming Research Unit. He is internationally known for his work into gambling and gaming addictions and has won many awards including the American 1994 John Rosecrance Research Prize for “outstanding scholarly contributions to the field of gambling research”, the 1998 European CELEJ Prize for best paper on gambling, the 2003 Canadian International Excellence Award for “outstanding contributions to the prevention of problem gambling and the practice of responsible gambling” and a North American 2006 Lifetime Achievement Award For Contributions To The Field Of Youth Gambling “in recognition of his dedication, leadership, and pioneering contributions to the field of youth gambling”. In 2013, he was given the Lifetime Research Award from the US National Council on Problem Gambling. He has published over 800 research papers, five books, over 150 book chapters, and over 1500 other articles. He has served on numerous national and international committees (e.g. BPS Council, BPS Social Psychology Section, Society for the Study of Gambling, Gamblers Anonymous General Services Board, National Council on Gambling etc.) and is a former National Chair of Gamcare. He also does a lot of freelance journalism and has appeared on over 3500 radio and television programmes since 1988. In 2004 he was awarded the Joseph Lister Prize for Social Sciences by the British Association for the Advancement of Science for being one of the UK’s “outstanding scientific communicators”. His awards also include the 2006 Excellence in the Teaching of Psychology Award by the British Psychological Society and the British Psychological Society Fellowship Award for “exceptional contributions to psychology”.

Posted on July 19, 2013, in Case Studies, Compulsion, Mania, Obsession, Pain, Paraphilia, Psychiatry, Psychological disorders, Psychology, Sex and tagged , , , , , , , . Bookmark the permalink. 6 Comments.

  1. First, I am not a neuroscientist or an M.D. so I do not consider myself an expert on this subject. You state that “One theory on the origin of BIID is that it is a neurological failing of the brain’s inner body mapping function (located in the right parietal lobe)” This notion has been repeated in papers and talks by V.S. Ramachandran who is a co-author of McGeoch’s 2011 paper. There is no credible evidence to support this idea –that there is body image map in the right parietal lobe.

    In addition, Ramachandran has provided a spectrum of curious ideas about approaches to treating apotemnophilia. These include treating it with cold water irrigation of the ear and the use of mirrors to simulate amputation. (Medical Hypotheses, 2007). There was, at one point, a gentleman who claimed (blog site account) that he was subjected to both cold water vestibular irrigation and the presentation of mirrors to simulate amputation by McGeoch and Ramachandran. According to his account the the cold water irrigation produced extreme nausea. I would use considerable caution when evaluating research claims arriving from Ramachandran’s lab.

  2. Alistair Edevane

    Hello again Dr Griffiths! This article on xenomelia actually reminded me of a Jerry Springer clip that I saw a few years ago about a transsexual named Sandra who decided that because she no longer wanted her legs, she would perform a self-amputation surgery with a circular saw. Before that, she had made several endeavours using a variety of tools (and apparently 120cc of liquefied human excrement injected into her trochlear groove) to remove the limbs. While the clip was interesting to watch, I still can’t help but question the veracity of the story considering that it was on a television programme. If you wish to view the clip, you can click on the link or watch it on YouTube by typing in “I’m Happy I Cut Off My Legs”.

  3. Stumped? LOL! This title is really cutting-edge. 🙂

    I suspect that the issue may originate in the limb-ic system.

  4. Hi there, your article was helpful. I myself am just starting to allow myself to research this subject. I don’t know what catagory I fall into. I find photos o mastectomy and and amputation beautiful but I don’t know if I’m attracted to it sexually or if I just desire it for myself, which I do. I’ve always felt that my left arm and leg don’t belong. Do you know of any place where there is group discussion on the subject?

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