Cutting Desire

First is campaigning for the disorder's inclusion in the next Diagnostic and Statistical Manual of Mental Disorders (DSM), the Bible of the psychiatric field, slated for publication in 2012. For sufferers, inclusion in the DSM would legitimize what they believe is a genuine identity trait. "The largest goal is to figure out the treatment for the people who have it," First says. He thinks that inclusion in the DSM could help pave the way. "Clearly, surgery has helped some people more than anything else. That's a fact."

As it currently stands, BIID sufferers have little option for treatment, and many of them take extreme and dangerous measures to amputate or paralyze themselves. One patient featured in Melody Gilbert's 2004 documentary "Whole," froze his leg off with dry ice. Another blew one off with a shotgun. In one case, a man traveled to Mexico and paid $10,000 for an illegal amputation, only to die of gangrene.

Perverse and gory stories like that have become fodder for television dramas including CSI and Grey's Anatomy. And a new independent feature film starring Nick Stahl, "Quid Pro Quo," tells the story of a paraplegic journalist who becomes involved with a shadowy world of disability "wannabes," who gather in a dim Manhattan basement in their wheelchairs and help each other track down people and methods to paralyze themselves. At the start of the film, set for June 13 release, Stahl's character gets a tip that a man has gone into a New York City hospital and offered a doctor $250,000 to amputate his leg.

In reality, there's only been one widely publicized case of a doctor performing amputations on healthy patients in modern times: Dr. Robert C. Smith, a surgeon at Scotland's Falkirk and District Royal Infirmary, who in January 2000, made headlines in the U.K. tabloids when it was revealed that he had amputated the legs of two patients with BIID. Dr. Smith argued that by preventing his patients from pursuing more life-threatening alternatives, he was following the Hippocratic oath to do no harm. But Dr. Smith's hospital disagreed. He was prevented from doing any further surgeries. (Other doctors in history have faced this same dilemma. In 1785, a man in France held a gun to the head of a surgeon, forcing him to amputate his leg, and later sending a thank-you note. "You have made me the happiest of all men by taking away from me a limb," he wrote.)

Surgeons who perform voluntary amputations today are understandably underground. Alex, a 60-year-old BIID sufferer, learned about a surgeon willing to amputate his leg five years ago and "jumped right on it," flying to Asia and paying $10,000 to have the limb removed. "The only regret I have is that I wasn't able to do it 30 years ago," Alex says. He calls himself "completed," and now works as a gatekeeper to the surgeon, who will not go public, operating a sort of ad hoc screening process, interviewing prospective amputees, and making sure they get psychological evaluations and complete physicals prior to the surgery. Alex, who also did not want his real name used, has even accompanied some patients to Asia; he would not reveal the exact location.

"There isn't a single one of us that enjoys having this," Alex says. "We're all trying to figure out how we got it and how to get rid of it. It's a mental torture. And the only way to get rid of it is by getting the surgery. Unfortunately, there's too many people that take it into their own hands and end up dying."

In his study, Dr. First saw some immediate parallels between BIID and gender identity disorder (GID) in which people feel that the gender they were physically born with is not their true gender. "[BIID] is not just about enhancing your appearance," he says. "This is much deeper. This is a sense of your core identity." Although many members of the transsexual community take issue with GID's inclusion in the DSM and its characterization as a mental illness, there is no question that gender reassignment surgery has become more acceptable in the last few decades, which has also paved the way for more funding and research into the disorder. (Advocacy groups for the transgendered contacted by NEWSWEEK were reluctant to comment without knowing about BIID.)