Body integrity dysphoria


Body integrity dysphoria is a disorder characterized by a desire to be disabled or having discomfort with being able-bodied beginning in early adolescence and resulting in harmful consequences. BID appears to be related to somatoparaphrenia. People with this condition may refer to themselves as "transabled".

Signs and symptoms

BID is a rare, infrequently studied condition in which there is a mismatch between the mental body image and the physical body, characterized by an intense desire for amputation of a limb, usually a leg, or to become blind or deaf. The person sometimes has a sense of sexual arousal connected with the desire for loss of a limb or sense.
Some act out their desires, pretending they are amputees using prostheses and other tools to ease their desire to be one. Some people with BID have reported to the media or by interview over the telephone with researchers that they have resorted to self-amputation of a "superfluous" limb by, for example, allowing a train to run over it or otherwise damaging it so severely that surgeons will have to amputate it. However, the medical literature records few, if any, cases of actual self-amputation.
To the extent that generalizations can be made, people with BID appear to start to wish for amputation when they are young, between eight and twelve years of age, and often knew a person with an amputated limb when they were children; however, people with BID tend to seek treatment only when they are much older. People with BID seem to be predominantly male, and while there is no evidence that sexual preference is relevant, there does seem to be a correlation with BID and a person having a paraphilia; there appears to be a weak correlation with personality disorders. Family psychiatric history does not appear to be relevant, and there does not appear to be any strong correlation with the site of the limb or limbs that the person wishes they did not have, nor with any past trauma to the undesired limb.

Causes

As of 2014 the cause was not clear and was a subject of ongoing research.

Diagnosis

As of 2014 there were no formal diagnostic criteria.

Classification

As of 2014 it remained unclear whether BID is a form of human diversity or a mental disorder. There was debate about including it in the DSM-5 and it was not included; it was also not included in the ICD-10. It has been included in the ICD-11, which reached a stable version in June 2018, as 'Body integrity dysphoria' with code 6C21. The ethics of surgically amputating the undesired limb of a person with BID are difficult and controversial.

Treatment

There is no evidence-based treatment for BID; there are reports of the use of cognitive behavioral therapy and antidepressants.

Prognosis

Outcomes of treated and untreated BID are not known; there are numerous case reports that amputation permanently resolves the desire in affected individuals.

History

Apotemnophilia was first described in a 1977 article by psychologists Gregg Furth and John Money as primarily sexually oriented. In 1986 Money described a similar condition he called acromotophilia; namely, sexual arousal in response to a partner's amputation. Publications before 2004 were generally case studies. The condition received public attention in the late 1990s after Scottish surgeon Robert Smith amputated limbs of two otherwise healthy people who were desperate to have this done.
In 2004 Michael First published the first clinical research in which he surveyed fifty-two people with the condition, a quarter of whom had undergone an amputation. Based on that work, First coined the term "body integrity identity disorder" to express what he saw as more of an identity disorder than a paraphilia. After First's work, efforts to study BID as a neurological condition looked for possible causes in the brains of people with BID using neuroimaging and other techniques. Research provisionally found that people with BID were more likely to want removal of a left limb than right, consistent with damage to the right parietal lobe; in addition, skin conductance response is significantly different above and below the line of desired amputation, and the line of desired amputation remains stable over time, with the desire often beginning in early childhood. This work did not completely explain the condition, and psychosexual research has been ongoing as well.