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Lose a leg, find yourself The lives of Russia's ‘voluntary amputees’ — people who want to remove their own limbs

Источник: Meduza
Ksenia Shishkova for Meduza

In Western medicine there is a psychological affliction known as “Body Integrity Identity Disorder,” or BIID. The condition causes otherwise healthy people to view one or more of their own limbs as a foreign object, and is often accompanied by the urge to amputate these limbs in order to feel “whole.” People with BIID often intentionally harm themselves out of the desire to lose unwanted arms and legs. Scientists only started studying BIID in the last 15 years, and all research so far has occurred exclusively in Western countries. There are, however, people living with BIID in Russia, where medical researchers have ignored the disorder entirely. Meduza correspondent Sasha Sulim learned about the lives of Russia’s “voluntary amputees.”

When Denis (whose name has been changed to protect his identity) was four years old, he had a nightmare that he remembers to this day: Dressed in black leather, he saw himself kneeling before some strange woman, and she was whipping him with all her strength. But the main thing about Denis’ dream was that he had no legs. That night, the pain of the beating and the powerful excitement of seeing his legs as stumps awoke the boy. It wasn’t until many years later that Denis understood the vision’s sexual nature.

As a teenager, while his parents were away at work, Denis loved to roleplay as disabled person: he’d tie his leg up, slip on a homemade prosthesis, and limp around his family’s St. Petersburg apartment on crutches, fantasizing about the circumstances in which he could lose a limb. This game sexually aroused Denis, mixing his attraction to people without legs and the pleasure he derived from contemplating his own paralysis. It was then when he first started thinking seriously about removing his limbs for real.

Another man named Igor (whose name has also been changed) says he realized his unusual desires as a child, as well. Igor is 45 years old today, and he grew up in an ordinary Soviet family. “If my wife found out about this, I don’t know what I’d do with myself. I don’t think I’d survive it,” he told Meduza. He calls his fantasies a “demonic stigma” that he can’t shake. He fights the condition by focusing on work (his shoe-repair business) or retreating to his favorite hobby: hunting. Igor says just looking at animals helps distract him from obsessive thoughts. “Some [people] can sit for hours, waiting for ducks or boars. I can’t do that. I need things to be changing. I can’t sit in one place,” he says. “Succumbing to the temptation to lose my legs would mean losing the chance to do my favorite thing, and it would be turn me into a burden for my own family.”

Obstacles in the path to happiness

Neuropsychiatrist Richard von Krafft-Ebing, one of the founding fathers of sexology, was one of the first physicians to write about a disorder that caused people to want to amputate their own limbs. His 1906 book, “Psycopathia Sexualis,” described three cases of what appear to be BIID, though the medical terminology wouldn’t appear for almost another century. The first doctor to use the term was Michael First, a clinical psychology professor at Columbia University. His 2004 article in Psychological Medicine was titled “Desire for Amputation of a Limb: Paraphilia, Psychosis, or a New Type of Identity Disorder.”

Eight years later, First and a colleague named Carl Fisher published another paper studying the rare disorder. “Most BIID sufferers experience a chronic and dysphoric sense of inappropriateness regarding their being able-bodied,” the two researchers concluded, “and many have been driven to actualize their desired disability through surreptitious surgical or other more dangerous methods.”

Speaking to Meduza, Dr. First said BIID is an extremely rare medical condition, though it occurs widely enough to confirm that it exists. “The whole time I’ve been studying this disorder, I’ve talked to roughly 150 patients suffering from BIID. But I’m sure that there are thousands and thousands of such people throughout the world,” First said, adding that the spread of the Internet and social networks has greatly simplified his research and the lives of his patients. “Before, people suffering from BIID thought they were alone in the world. They were very lonely, and they suffered terribly because of their dissimilarity to everyone around them. In some situations, realizing that you’re not alone can even save your life.”

Ksenia Shishkova for Meduza

For his 2004 study on BIID, First spoke to 52 people who admitted to dreaming about amputating one or more of their limbs. He found these individuals on Internet forums dedicated to the subject, and he carried out the interviews over the phone on the condition of anonymity. Men made up the overwhelming majority of the group (there were only four women and one transgender individual). Nine people said they’d already amputated a leg or an arm. Six of these patients said they forced the amputations by inflicting life-threatening injuries on themselves (using electric saws or dry ice, causing irreparable tissue damage), and three people said they’d managed to convince a doctor to remove a healthy limb. Some of these patients told First that they felt great relief after the amputations, and even rid themselves of the urge to remove further limbs. Not one of the 52 patients in the group suffered from other psychiatric disorders (though, as First points out, being diagnosed with the condition can cause severe depression). All 52 people told First that the goal of voluntary amputation was the desire to find their own identity.

First says he believes a more accurate quantitative study of BIID won’t likely be possible in the near future. “You can’t just go around to 20 or 200,000 people and ask them, ‘Is there anything on your body you’d like to amputate?’” he explains.

Three specialists at the University of Amsterdam published another study on “voluntary amputees“ in 2012. The scholars spoke to 54 people who claimed to fantasize about amputating or paralyzing their own limbs in order to feel “more complete” and gain “inner body harmony.”

The scholars conducted their survey mostly anonymously and online, collecting data using a detailed questionnaire. Only five patients agreed to meet in person. The three scholars concluded that maximizing the number of subjects available for study required abandoning ideas about conducting “offline” interviews, including even phone calls. The article’s authors found that people living with this rare condition have great difficulty contacting others about it, fearing that their identity could be revealed. One way or another, all the patients in the study (who were, as with First’s research, overwhelmingly men) said their first amputation fantasies dated back to early childhood. Roughly half the subjects said these fantasies arouse them sexually. The University of Amsterdam refused to speak to Meduza, citing intense media interest and a busy work schedule.

One of the Dutch researchers’ main goals was getting the medical community to recognize the disorder and include it in the International Classification of Diseases (ICD). For the past several years, Michael First proposed including BIID in the list of psychological and behavioral disorders in the next version of the ICD, now being revised by the World Health Organization. Work on the new edition is expected to finish next year, and its draft version does mention a condition similar to BIID. As of January 2017, medical scholars had proposed 7,186 revisions to the ICD, including two changes concerning psychological disorders. Researchers have already tried to introduce BIID into the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders — so far without success.

Psychotherapist Lev Perezhogin, the head researcher at the Serbsky Center in Moscow, points out that the existing International Classification of Diseases includes a section on “unspecified impulse disorders” (ICD-10 F63.9) that in part describes “psychiatric disorders whose essential features are the failure to resist an impulse to perform an act that is harmful to the individual or to others.” “Show me a man and I’ll find the right charges to bring against him,” Perezhogin jokes, acknowledging that such cases have been studied very little, and so they’re described in these very general terms.

In the 2000s, journalists started taking an interest in BIID. In 2003, Melody Gilbert’s documentary film “Whole” premiered at the Los Angeles Film Festival. In the film, BIID patients describe how and why they tried to lose their own limbs. Three years later, ABC News published an article titled “What Drives People to Want to Be Amputees?” telling the story of three “voluntary amputees.” One of these people sat in his car for six hours with his legs submerged in dry ice. He then drove himself to a hospital emergency room, using manual pedal controls (the kind used by paraplegics) that he pre-installed on his steering wheel. Doctors amputated both his legs, and the man says his limb obsession disappeared, though he told journalists that not a day passes when he doesn’t regret what he did to himself. ABC News also presented a woman who tried and failed twice to amputate her own legs, and a third patient who nearly decided to undergo an illegal amputation operation in the Philippines, where local doctors had agreed to cut off one of his healthy legs for $10,000.

In recent years, similar reports have appeared on Fox News and in the tabloids Mirror, The Daily Mail, The Daily Star, and The New York Post. All these stories featured individuals who dreamed about severing their limbs and people who felt relief when they’d succeeded. The New York Post even dug up a case study from the 18th century, when an Englishman reportedly forced a French surgeon at gunpoint to amputate one of his legs. After the operation, the doctor received a thank-you note (along with payment), where the Englishman described his leg as an “invisible obstacle” to his happiness.

Meduza could find no record of a BIID study ever conducted in Russia. The phrase sindrom narusheniya tselnosti vospriyatiya sobstvennogo tela (“Body Integrity Identity Disorder”) appears in Russian almost exclusively in translated articles (with rare exceptions), and neither Russian scholars nor doctors use the term.

Amputees, devotees, and wannabes

Russian “voluntary amputees” find each other online using forums and closed groups, and their communications are full of slang borrowed from English. They talk about amputi (“amputees”), vannabi (“wannabes” who dream about removing their limbs), and devoti (“devotees” who are sexually attracted to amputees). To compile this report, Meduza spoke to several dozen Vkontakte users subscribed to groups that are connected one way or another to the topic of amputations.

As with the anonymous scientific studies conducted on this subject, it’s often impossible to verify how serious these individuals are when they talk about the desire to amputate their limbs. Activists in these communities, who routinely add the word “Wannabe” to their displayed surnames on Vkontakte, sometimes seem to write about amputations in over-the-top ways. Their profile pages are plastered with (often pornographic) photographs of nude and half-naked people missing arms and legs. Speaking to Meduza, most of these individuals stopped talking altogether, when we suggested another form of communication (such as a phone call). Denis and Igor, however, agreed to speak over the telephone and Skype, which is how Meduza learned their stories.

Now over the age of 40, Denis attributes his childhood feelings to the strong impression an unusual meeting left on him: once when he was just a small boy, a man with a wooden leg visited his family’s apartment in Leningrad. “The sight of this man frightened and fascinated me at the same time. Later came the eroticization of disabled people. It’s one of the defense mechanisms of our psychosis,” the man explained. “Ever since, I’ve dreamed of having my leg amputated. Or both.” Denis got so interested in psychology that he studied it in college, and later moved to the U.S., where he’s spent the past 15 years working in this field.

“A strong reaction to meeting a person without a leg could become a decisive factor in the formation of sexual deviation in a child below the age of six,” says psychoanalyst Nadezhda Kuzmina, the co-author of the Modern Psychoanalysis online portal. “At this age, it’s very difficult for children to distinguish fantasy from simple games, which is why it’s practically impossible to detect the early onset of the disorder in most cases.” Michael First’s findings confirm this, showing that BIID most commonly starts with a childhood experience and one cause of the disorder is often a meeting with an amputee.

Denis says he spent years wondering if he was crazy. In the end, he came to the conclusion that he is not. Today, he calls his disorder a “personal quirk,” saying, “Wannabes don’t need psychotherapy. And if a psychotherapist feels he can break a person’s desire to get amputated, then he’s not a professional and he doesn’t know what he’s talking about. It would be like convincing a black person that they’re actually white. Maybe it’s possible to do, but what we should be asking is how healthy is an approach like that?”

Ksenia Shishkova for Meduza

Denis says therapy is necessary to learn to live with BIID, but it’s nonetheless like living in a prison. Amputation would offer liberation from the disorder, but Denis says he’s not prepared to part with his limbs. “There are, of course, certain constraints — my parents, foremost,” he says. “They know nothing of my wishes. I’m protecting them from this.”

Other obstacles are purely technical. “If my health insurance provider finds out that an amputation was carried out on my own wishes without medical necessity, they’d sue me, and I’d be doomed to poverty and ruin,” Denis explains. “The chances of finding a doctor who would agree to carry out the procedure are also zero.”

A few years ago, Denis visited Europe, hoping to find the right specialist. At that moment, it seemed to him that he was on the cusp of realizing his dream. “It was a terrible period in my life. I really hoped that they would help me, but it didn’t happen,” he remembers. “After all this, I was even ready to build a guillotine. If anyone had helped me with this back then, I’d be missing a leg today.” Denis says he instinct for self-preservation is what stopped him from following through with it. “I’m used to it. I’ve learned to live with this,” he says, calling himself “a slave of his own desire.”

The dream operation

“Surgical intervention is a radical measure,” Michael First says. “Of course, the question of ethics arises immediately.” At the same time, amputations are the only effective treatment for this condition so far observed by researchers. First himself supports this method only in the most extreme cases, when nothing else helps, and when it’s been reliably established that the patient understands their own actions. The psychology professor points out, however, that it’s impossible to rule out that a patient might regret a voluntary amputation after the procedure has been carried out.

Seven participants in the University of Amsterdam’s 2012 study claimed they had undergone amputations, reporting that their BIID symptoms vanished after the operations, and they at last felt like “whole people.”

Under Russian law, amputation without medical grounds can lead to charges of deliberate infliction of harm, which carries an eight-year prison sentence. In online groups dedicated to amputations, however, you’ll sometimes find offers of the following kind: “A full set of service. Expensive, but reliable, legal, and confidential.” The authors of one of these announcements — a man who identified himself as Viktor from Rostov — told Meduza that he doesn’t plan to carry out any amputations himself, but he is capable of providing detailed consultations for money regarding all issues related to such operations. Viktor says he studied psychology in college and wrote his thesis on attraction to “non-standard girls.” “It’s easy to write [about it] when you’re a patient yourself,” he explains. It was around this time that he met his first “wannabe” amputee, and he realized that he could make some money in this sphere.

Viktor says there are many fraudsters working in his business. “I advise [my clients] immediately not to respond, if they see here [on Vkontakte] an announcement saying, ‘Pay us money, and we’ll lop off your leg.’ These men are either crooks or criminals.” Viktor says that more realistic options are to fake terrible leg pain or — better yet — inflict a minor injury on one’s own limbs. “The most effective scheme is to find a surgeon and reach an agreement with him (for cash or a bottle of cognac), that you’ll come to him on a certain day with a potentially fatal leg injury, and he’ll amputate it at the predetermined place,” Viktor says, adding that “wannabes” usually know exactly where the incisions should be made. “But the person nevertheless has to come in with an injury. Doctors risk not just their medical licenses, but also their freedom.”

Meduza spoke to a woman who says she did what Viktor describes. Five years ago, Tamara (whose name has been changed) had her left left amputated. Now 35 years old and working as a hair stylist, she says she dreamed about the operation for two decades. First, she removed the bones in her toes. Later, she inflicted a small injury on her leg, and then exposed it to infection, letting it fester in order to produce the medical grounds for amputation. Asked about the procedure today, Tamara says she experienced “relief” afterwards and finally “found herself.” She still works as a hairdresser (now from home), while raising her 12-year-old daughter. Her husband left her after the amputation. She says she’s acclimated to getting around on crutches, even describing it as “very comfortable.”

The only two known cases of a doctor amputating a healthy limb in order to treat a patient with BIID have occurred in Great Britain, performed by Robert Smith, a Scottish surgeon at the Falkirk Royal Infirmary. The first of these operations took place in September 1997, seven years before Michael First’s article in Psychological Medicine. In 2000, Smith and two colleagues published a short book titled “Apotemnophilia: Information, Questions, Answers, and Recommendations About Self-Demand Amputation,” where he stated that he’s performed amputations of healthy limbs on two of his patients. The surgeon says he resorted to these extreme measures because of the risk that the patients might try to harm themselves. Smith also noted that he preliminarily evaluated both patients’ mental health and concluded that neither patient was motivated by sexual fetish. He refused to operate on patients who wanted limbs amputated exclusively because of sexual impulses. Smith claims that both patients experienced enormous relief after the operations, though he had to stop his work when the public learned about the irregular procedure, despite what he said was a strong demand for similar surgical interventions.

Psychoanalyst Nadezhda Kuzmina says the medical consensus today regarding voluntary amputations could change, noting that it wasn’t long ago when doctors “were skeptical” about plastic surgery. “People in the 21st century have extremely complex relationships with their bodies, and fantasies about amputation could be one form of rejecting one’s own corporeality,” she theorizes.

Coming out from the shadows

A few years ago, in a scientific internship at a European research center, Denis helped run a study of the medical histories of 150 transgender people. “No matter how strange it sounds now, I’ll tell you that these transgender people disgusted me and made me feel sick. And this really troubled me,” he says. “But I’d developed feelings of admiration and profound respect for them, by the time I’d finished the internship. These people really are strong individuals, whose lives are a real tragedy. ‘Wannabes’ experience the same thing. I think we deserve the same level of understanding that transgender people get.”

Psychotherapist Lev Perezhogin thinks Denis’ comparison is inappropriate, pointing out that far from all transgender people pursue surgical intervention, more often limiting themselves to changes in their identification documents. And even if patients opt for sex reassignment surgery, he argues, the operation doesn’t inflict any injuries so devastating as amputation. “With transgender people in Russia, a medical commission is required in order to determine that the patient can adapt in society in a new capacity, if they change their sex,” Perezhogin explains. “And what are the adaptive effects of performing an amputation on a ‘wannabe’? Their lives wouldn’t change in any way, except that they’d need a prosthesis to walk.”

Michael First, however, agrees with Denis’ analogy. “In both cases, the individual feels very uncomfortable in their own body: some are troubled by their own genitals and secondary sexual characteristics, and others are troubled by four healthy limbs. Both transsexualism and BIID manifest in early childhood or adolescence, when individuals begin mirroring a desired ideal, dressing as the opposite sex or tying up their limbs,” First explains. “To achieve their ideals, both groups require surgical intervention that isn’t an end in itself, but medicine against an irresistible desire to change their sex or remove a limb.”

For Denis, the first step to accepting his own identity was beginning to talk about it with others. The first to learn that he is a “wannabe” was his good friend, who immediately shared the information with her husband. “I was in shock, of course,” Denis told Meduza. “But this helped me realize that it’s impossible to live forever being so afraid.” He says he no longer hides his desires from his boyfriends.

Ksenia Shishkova for Meduza

Unlike Denis, Igor hasn’t discussed his impulse to amputate his limbs with anyone close. He says he’s only talked about it online with strangers who share similar afflictions. “I’m afraid that a doctor will think that I’m nuts,” Igor explains. “I even turned to God, prayed, and swore an oath. But I only managed to stay away from those websites or forums for three weeks, before coming back with even stronger urges.” When he told a priest about his problem, hinting that he was experiencing unusual sexual impulses, Igor says the priest asked him if he had Udmurt blood (Igor’s father was Udmurt), and said, “the Udmurts have strong pagan roots and they’re punished for it.”

Before speaking to Meduza, psychoanalyst Kuzmina says she phoned a dozen other doctors and asked them if they’d ever encountered a patient with any condition resembling BIID. “Even with my colleagues, their first reaction was denial and reluctance to talk about it,” she admits, arguing that it’s unlikely specialists will be able to offer patients much help, so long as there’s no medical consensus about “voluntary amputees.” “It’s very difficult to bear this pain alone. Talking to people on the Internet is at least one way to manage it,” Kuzmina says, adding that she believes “wannabes” will have to “come out from the shadows,” sooner or later.

According to Michael First, most of his American patients also keep their condition a secret. A few individuals have opened up to friends and family, he says, but even fewer of these people have found support and understanding. “One of my patients in New York has dreamed for many years of becoming paralyzed. At some point, he decided that he would confine himself to a wheelchair. The patient is a sales consultant at a store,” First explains. “And one day he simply came into work in a wheelchair, and announced to everyone that he has BIID. But his case is an exception. Usually people are very scared of other people’s negative reactions.“

Before ending his conversation with Meduza, Igor again emphasized his wish to rid himself of his “shameful” fantasies. “I really want to repent,” he said. “Only I don’t want to do it routinely like in church. I want to have a heart-to-heart with someone. It feels like things would be easier for me in an instant, if I could just tell someone everything and they’d listen to me and understand.”

Story in Russian by Sasha Sulim, translation by Kevin Rothrock