Body integrity identity disorder (BIID)
Body Integrity Identity Disorder (BIID) is a rare psychological condition where individuals, despite being physically healthy, experience a profound belief that they should be disabled—often desiring amputation or other forms of body modification. Patients with BIID perceive their healthy limbs as foreign and unnecessary, leading them to seek drastic measures, including self-mutilation, when medical professionals are reluctant to perform elective surgeries. The condition was first clinically described in 1977 as apotemnophilia, a term used to highlight a sexual arousal associated with amputation. It wasn’t until the late 1990s that more structured research began, culminating in the term BIID introduced by Dr. Michael First in 2004.
The underlying causes of BIID remain poorly understood, with some theories suggesting a miscommunication in how the brain maps body identity. The condition raises complex ethical questions surrounding medical autonomy, as advocates for disability rights often oppose surgical interventions, arguing they undermine the lived experiences of those with real disabilities. Currently, BIID is not officially recognized by the American Psychiatric Association, leading to limited research funding and few treatment options. Most of the knowledge surrounding BIID is anecdotal, and individuals with this disorder frequently choose not to seek help, resulting in a lack of reliable data on its prevalence.
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Body integrity identity disorder (BIID)
Body integrity identity disorder (BIID) is an exceptionally rare psychological condition in which a person, despite being otherwise healthy and mentally fit, believes that nature intended him or her to be disabled—blind, paralyzed, or in many cases an amputee—and often seeks to realize that body modification through drastic elective surgery. Patients with BIID believe that living as anything other than a disabled person is a lie, and, because most doctors hesitate to perform what are essentially elective amputations, these individuals sometimes turn to self-mutilation in order to achieve their goal. Because the disorder is not officially recognized by the American Psychiatric Association (APA), there is little scientific research on the disorder, no protocols for therapy, and no drugs designated for handling the pressures people suffering from BIID feel every day to drastically change themselves physically.
Background
One of the first clinical descriptions of a form of BIID was published in 1977 by Dr. John Money of Johns Hopkins University. He referred to a condition, which he termed apotemnophilia, from the Greek combining "love" and "to cut off," in which patients became sexually aroused at the idea of having a limb amputated. Over the next decade, few doctors researched the condition further and little progress was made in its diagnosis or treatment.
In the late 1990s, however, Dr. Michael First, a professor of psychiatry at Columbia University, began to investigate elements common to those rare patients who expressed an almost compulsive desire to be disabled, who believed that their otherwise healthy bodies were in fact a mistake that needed to be corrected. These patients, Dr. First found, were so driven by this obsession that the thought of needing to be disabled impacted every other life decision and kept their lives in constant conflict. In more extreme cases, patients were driven to attempt amputations of their own with hacksaws or even shotguns in order to relieve themselves of the discomfort associated with an unwanted limb.
Dr. First argued that these patients did not suffer from more traditional mental disorders that involved a dysfunctional relationship with the body, such as body dysmorphic disorder, in which a patient obsesses over an imperfect body part. Additionally, these patients did not have the pathology of those who routinely sought cosmetic surgery to repair multiple areas of their physical appearance, and their desire for amputation was not necessarily sexual in nature. Rather, these patients did not recognize their healthy limbs as part of their bodies—they saw their own perfectly functioning legs, arms, or eyes as if they were somehow foreign to their bodies, unneeded and unwanted. They often mimicked the condition of being disabled—they walked with a cane or with the assistance of a wheelchair, purchasing prosthetic devices and attempting to wear them. In 2004, Dr. First named the condition body integrity identity disorder.
Overview
Dr. First, and others in the medical community who began to specifically study and try to understand the cause of disorder regarding BIID, initially suggested that a miscommunication in the brain renders patients unable to scan and map a healthy body successfully. Due to this confusion, the brain essentially rejects certain portions of the body as part of its identity. Many patients recalled having these thoughts and seeing a disabled person at a young age, usually when they were under the age of five; that image made a vivid impression that relayed to the brain that such a condition was normal and desirable. Other doctors have theorized that patients with BIID have a mindset that is somewhat comparable to those who undergo gender reassignment surgery.
Like gender reassignment and cosmetic surgery, BIID concerns the issue of what the medical community considers body autonomy—that is honoring a patient’s wishes when it comes to judging procedures, treatments, and therapies concerning the patient’s body in terms of doctors’ Hippocratic oath to first do no harm. Because people with BIID have healthy limbs, medical experts are inclined to find treatment options less invasive and permanent than surgery, such as medication or targeted psychotherapy; however, as so much remains unknown about the cause of the complicated disorder, a reliable form of therapy has not yet been discovered.
As the medical and psychiatric communities have begun to consider the implications of people who want to live as fully functioning disabled individuals, advocates for disabled rights and those who are actually living with disabilities denounce amputation as treatment, suggesting that such a voluntary decision would contradict the hardships associated with adjustment and possibly minimize crusades for accommodations in public facilities and equal opportunity in the job market for the disabled.
Without APA recognition of BIID as an official mental disorder, substantial funding for further research into the condition has been difficult to secure; thus, most of the information available is anecdotal and limited. There is no reliable data on how widespread the problem might be as those afflicted with BIID often prefer not to seek any help. In addition, without research data, the opportunities to develop treatment protocols are limited. Support groups sponsor websites that encourage sharing experiences, but for the most part, tested treatments for the disorder are restricted.
Bibliography
Barnes, Elizabeth. The Minority Body: A Theory of Disability. New York: Oxford UP, 2016. Print.
Bayne, Tim, and Neil Levy. "Amputees by Choice: Body Integrity Identity Disorder and the Ethics of Amputation." Journal of Applied Philosophy 22.1 (2005): 75–86. Print.
Elliott, Carl. "A New Way to Be Mad." Atlantic. Atlantic Monthly Group, Dec. 2000. Web. 4 Aug. 2016.
Henig, Robin Marantz. "At War with Their Bodies, They Seek to Sever Limbs." New York Times. New York Times, 22 Mar. 2005. Web. 4 Aug. 2016.
Hilti, Leonie Maria, et al. "The Desire for Healthy Limb Amputation: Structural Brain Correlates and Clinical Features of Xenomelia." Brain: A Journal of Neurology Jan. 2013: 318–29. Print.
Müller, Sabine. "Body Integrity Identity Disorder (BIID): Is the Amputation of Healthy Limbs Ethically Justified?" American Journal of Bioethics: Neuroscience 9.1 (2009): 36–43. Print.
Smith, Robert C. "Amputee Identity Disorder and Related Paraphilias." Psychiatry 3.8 (2004): 27–30. Print.
White, Amy. "Body Integrity Identity Disorder beyond Amputation: Consent and Liberty." HealthCare Ethics Committee Forum: An Interprofessional Journal on Healthcare Institutions’ Ethical and Legal Issues 26.3 (2014): 225–36. Print.