Out on a Limb

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

Posted May 11, 2014

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”).

“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.

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.

References and 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 Transabled.org. American Behavioral Scientist, 56, 596-617. 

Ellison, J. (2011). Cutting desire. Newsweek, October 28. Located at: http://www.thedailybeast.com/newsweek/2008/05/28/cutting-desire.html

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: http://en.wikipedia.org/wiki/Body_integrity_identity_disorder

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.