Body Integrity Identity Disorder (BIID)

Hand on wheel of wheelchairBody 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.

Understanding BIID

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.

One major theory among psychologists and neurologists is that BIID occurs when the 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.

References:

  1. Blom, R., Hennekam, R., & Denys, D. (2012, April 13). Body Integrity Identity Disorder. Retrieved from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3326051.
  2. Body Dysmorphic Disorder (BDD). (n.d.). Retrieved from http://www.adaa.org/understanding-anxiety/related-illnesses/other-related-conditions/body-dysmorphic-disorder-bdd.
  3. 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
  4. 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.
  5. 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