Cutting Desire

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Ugh.

This creeped me out so fucking much, I had to punch out of even reading the article.

http://www.newsweek.com/id/138932

Cutting Desire
A rare condition compels its sufferers to want to amputate, or paralyze, their own healthy limbs. Inside the strange world of what sufferers call Body Integrity Identity Disorder.

"Josh" says he was fully prepared when he amputated his left hand with a power tool. He says he had tried to cut it off before—once putting it underneath a truck and trying to crush it (the jack didn't collapse right); once attempting to saw it off with a table saw (he lost his nerve). He even spent countless miles driving around with his hand dangling out the window, hoping to get side-swiped. But this time he was determined to succeed. Josh, who insisted on anonymity because his family thinks he lost his hand in an accident, says he practiced on animal legs he got from a butcher, and he was equipped with bandages to stop the bleeding and a charged cell phone in case he got dizzy. Now, years later, Josh says he feels wonderful without his hand, that his amputation finally ended a "torment" that had plagued him since middle school. "It is a tremendous relief," he told NEWSWEEK. "I feel like my body is right."

Surprising as it may seem, Josh is not alone. He has what some scientists are calling Body Integrity Identity Disorder (BIID), an exceedingly rare condition characterized by an overwhelming desire to amputate one or more healthy limbs or become paraplegic. The desire to be disabled seems so bizarre and contrary to basic human instincts that those who suffer from BIID have largely kept their compulsion a secret. But online communities of those with BIID have formed over the last decade, galvanizing a small movement to bring the disorder into the open.

They may soon be getting some support from the scientific community. BIID is attracting the attention of researchers who suspect that the condition may be related to other body image disorders—including anorexia, body dysmorphic disorder, and gender identity disorder—that at first glance may seem entirely psychological, but may be linked to physical differences in the brain. "In studying the hinterland between neurology and psychology, we can tell not just about people with conditions themselves, but how all our brains work," says Paul McGeoch, a neurologist at the University of San Diego who is currently doing brain scans on people with BIID. McGeoch's research may help answer the fundamental question: is BIID a mental illness or a hard-wired identity?

Those who congregate on the dozens of Web sites for people who identify themselves as having BIID say that safe and legal surgery, or a medically supervised way to become a paraplegic, is the only solution for their problem. (While researchers have interviewed dozens of BIID patients, there are no estimates of how many people are afflicted. However, transabled.org claims 1,500 visitors per day, while a Yahoo Web group of BIID suffers who say they are resisting the urge to amputate has 1,700 members.) They are most often white middle-aged males who refute the idea that the disorder can be treated like a mental illness with talk therapy and medication. They describe a persistent, torturous chasm between their mind's image of their own body, and the physical body they inhabit. They say their urge to "right" themselves is overwhelming. Controversially, some people who say they suffer from BIID draw parallels to the transgender community. They point out that it took years for people who felt they were born into the wrong gender to convince the medical and psychiatric professions to recognize their plight, and that transgender individuals are now protected by anti-discrimination laws in many cities and states.

"Nothing touches it, other than surgery," says Sean O'Connor, who runs the Web sites transabled.org and biid-info.org. "Psychotherapy doesn't work. Psychiatry doesn't work. Medication doesn't work. I'm a pretty typical example of someone who's attempted a [number] of ways to address the problem, done years of therapy of many types, including cognitive-behavioral therapy, and nothing helps." O'Connor says he identifies as someone with BIID, and uses a wheelchair, but has not taken the final step of finding a way to paralyze his legs.

While the idea of deliberately becoming disabled could seem offensive to disabled advocacy groups, the ones NEWSWEEK contacted were reluctant to pass judgment. "Certainly, there are some who would be repulsed by the idea that someone would intentionally disable themselves," says Nancy Starnes, senior vice president at the National Organization on Disability, noting that according to the Americans With Disabilities Act, anyone who appears to have a disability is protected. "But I think they would be treated the same way anybody with a mental health problem would be treated."

Dr. Michael First, a professor of clinical psychiatry at Columbia University in New York, has been trying to gain insight into the disorder and the question of how to treat it. In 2004, he conducted a study of 52 people who identified as amputee-wannabes. He found that they were far from psychotic. "You almost have to see it to believe it," First says. "These people say, 'Every minute of my life I feel like something is wrong.' But it doesn't impair their ability to relate to other people. They are completely in touch with reality."