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A Life For A Limb
Body Integrity Identity Disorder
It's not about experiencing the pain or self-mutilation, so why do people with Body Integrity Identity Disorder need to have certain appendages cut off in order to feel whole again?By Francie Horn, LCSW, CCBT, CRAT, BCD
Reproduced here with kind permission of the author and the editors: Social Work Today @ Great Valley Publishing, Co.
Original date of publication: February 24, 2003
It was a typical warm, sunny September day in Florida. Sitting cross-legged on the lawn, the eloquent, retired New York architect and entrepreneur rested the shotgun on his right tigh and slowly cocked the trigger. The explosion almost blew his leg off. "This is good," he thought. There was no pain. He made sure of that by aiming the barrel at a preselected spot on his knee. He had done his research well. He had tied the tourniquet tightly around his upper leg to lessen the amount of blood; but now, there was blood and muscle everywhere and his lower leg was just barely hanging on by a threads of muscle and tissue. He reached for the cordless phone that he had placed carefully beside him earlier and dialed 911 (G. Boyer, personal Communication).
This is George Boyer's story. He suffers from a little-known condition called Body Integrity Identity Disorder (BIID).
What is BIID?
BIID is a disorder in which a person has the obsessive need to have a healthy limb amputated in order to feel "normal," "whole;" and able-bodied. The original name of this disorder was coined apotemnophilia (A'- po'- 'TEM- nah 'FEELee- ah) by Dr. John Money, Dr. Russell Jobaris, and Dr. Gregg Furth (1977); however, it has never been included in the Diagnostic and Statistical Manual of Mental Disorders (DSM). I came to know George in early November 2001 while he was a patient at Orlando Regional Medical Center in Florida. He was having difficulty coping with a severe exacerbation of congestive heart failure and was experiencing significant anxiety and depressive symptoms. My job at the hospital is to provide brief counseling and psychotherapy to patients and families who are distressed or having difficulty coping with any issue that is affecting their recovery rate. George was admitted several times to our hospital over a two-month period; it took him several counseling sessions before he opened up to me and disclosed that he had BIID. Many people with BIID are too ashamed to admit it to their spouses or families - much less therapists or physicians - for fear of being harshly judged or ostracized. Because most surgeons refuse to amputate a healthy limb, some people with BIID have tried to induce the need for amputation by damaging the limb they want removed to ensure amputation (M. First, personal communication, May 24-25, 2002; Furth & Smith, 2000; Gregson, 2002). Although to some clinicians this may sound like body dysmorphic disorder, factitious disorder, malingering, or any number of other somatoform disorders, it is quite different (First, 2000). The person with BIID is not seeking attention, nor does he or she want the amputation because the limb "feels" defective. Instead, people with BIID are uncomfortable in their own "skin" until the limb they are fixated on is gone. There is an enormous amount of controversy over BIID, as it has been gaining increased media attention and recognition over the past couple of years. Most laypeople and many clinicians find the whole idea of self-demand (voluntary) amputation absurd and repugnant - "Why would anyone want the amputation of a perfectly healthy limb or to be an amputee?" Clinicians who have a grasp of BIID have equated the psychoemotional distress experienced by these patients with that experienced by those who have gender identity disorder or transgenderism. People with BIID experience the same obsessive and intrusive thinking that disrupts every aspect of their lives. They experience significant feelings of anxiety, shame, guilt, and preoccupation. This persistent discomfort and obsessiveness to have a limb amputated can become almost unbearable to someone who suffers from this disorder (Furth & Smith, 2000). For George, decades of agony, torment, and obsessiveness plagued him - he yearned to have his leg amputated. At age 11, George says that he realized "something enormously powerful" was enveloping him - "something that was savagely forbidden [by society]." His first recollection of attempting amputation was in 1968. He was experiencing a tumultuous time in his life. After accidentally injuring his leg while renovating an apartment, he decided to "exploit this injury" by driving a metal spike into the tibia of his leg. He felt little pain, so he kept driving the spike deeper and deeper into his leg. "The whole idea," George says, "was that I would contract osteomyelitis and that my leg would have to be amputated. "I introduced all kinds of foreign material [into the wound] hoping for that." To his utter dismay, after an extended hospitalization and recuperation, the osteomyelitis healed. The cause of the injury was listed as an accident in his hospital record (G. Boyer, personal communication).
Characteristics of subtypes
People with BIID describe themselves as fitting into three basic categories: "the wannabe," "the devotee," and "the pretender." The wannabe describes a nondisabled person who has an obsessive desire to have an amputation and may go to great lengths to have that limb amputated. It is the person's internal self-perception and identity without that limb that drives his or her actions. The devotee is a nondisabled person who is intensely drawn to people who have had amputations or can no longer use their limbs. A devotee can also be a wannabe. The pretender describes a nondisabled person who lives as if he or she has a disability, using medical equipment or paraphernalia (i.e., wheelchairs, crutches, braces, taping limbs together) in order to feign amputation. This type often feels frustrated that the "amputation" is not real but feels a sense of wholeness when pretending (Bruno, 1997; Furth & Smith, 2000).
The research into this disorder is in its infancy, even though it has theoretically existed for decades. One fact that is certain is theres no single causal factor in the development of BIID. What is unclear at this time is whether this is a neuro-psychological disorder with biological roots or a psychosexual disorder (Carl, 2000). It is also unclear whether there is a single, precipitating traumatic event and if the parent(s) psychopathology predisposes the child to the development of BIID. What is known is that the person with BIID was exposed to an amputee at a critical early age and that the disorder manifested itself by age 6 or 7 (M. First, personal communication, May 24-25, 2002).
The case of "Butcher Brown" and other short stories
In May 1998, Phillip Bondy, 80, traveled from New York to a Tijuana, Mexico, clinic because a surgeon named John Ronald Brown, 75, of San Ysidro, California, was willing to perform his amputation for $10,000. Brown was known in the San Diego area as "Butcher Brown" for botching transsexual operations, which he had performed in garages and hotels. Brown had even spent time in prison for performing surgery without a license. He cut off Bondy's legs; one week later, Bondy was found dead in his hotel room from a resulting gangrenous infection and other medical complications. Brown was eventually convicted of second-degree murder and sentenced to 15 years to life for Bondy's death (Associated Press, 1998; Callahan, 1998; Cuen & Benkoil, 2000; Dotinga, 2000; G. Furth, personal communication, 2001).
Some patients with BIID will go to extreme lengths to alleviate their emotional pain. In 1999, a Milwaukee man severed his own arm with a homemade guillotine. That same year, a California attorney tied her legs up with tourniquets and packed them with dry ice in hopes of inducing a bilateral amputation. Another man used an electric saw; he lost his life. One person used a log splitter, while another deliberately laid down on railroad tracks and woke up in the hospital as a bilateral above-the-knee amputee. BIID sufferers extensively research the route of amputation that will elicit the least amount of pain, bleeding, and damage (Elliot, 2000; Furth & Smith, 2000; G. Furth, personal communication, 2001; Money, Jobaris, & Furth, 1977). As one BIID sufferer, Roger K., a multiple finger and toe amputee, wrote to me in a recent e-mail: "I am not a pain person. I numbed my fingers and toes before I did any amputation." For him, the ideal would be to live his life as a bilateral below-the-knee amputee (Roger K, personal communication, 2000). While these seem like extreme cases, similar stories are being told in whispers across the country. BIID sufferers deliberately surround themselves with such a strong veil of secrecy that even spouses and close family members rarely know they have the disorder. It becomes their own private hell. No one really knows, at this time, how prevalent the disorder is, but if the available information on the Internet is any indicator of how farreaching BIID may be, it is safe to say that it is more prevalent than what we have identified in the medical or psychiatric arenas. There are dozens of Web sites with new ones popping up all the time. One site boasts a membership of at least 1,400 subscribers (Furth & Smith, 2000; M. First, personal communication, May 24-25, 2002).
Depending on whom you talk to, the estimated prevalence rate ranges from 1% to 3% of the clinical population. But no one knows for sure. In May 2002, because of George, I was invited to a closed symposium on BIID at Columbia University in New York. Dr. Michael First, the editor of the DSM IV TR, discussed his current research data. What he has found, in short, is that most BIID sufferers are white males with college degrees, currently working or retired from white-collar jobs. Most have no alcohol or substance abuse problems; however, approximately one-half of the respondents did have a comorbid diagnosis of anxiety, depression, or obsessive-compulsive disorder. First also found that a high majority of sufferers had no desire for self-mutilation. The site of the amputation seems to be extremely important as well, according to the current research. Nearly one-half of the respondents preferred a left above-the-knee amputation (M. First, personal communication, May 24-25, 2002). One of the biggest problems that researchers are encountering is that many of the people with BIID who were successful in having their amputation do not want to be bothered now. They feel that since having had their limb(s) amputated, the anxiety and distress are gone. They have been able to put it behind them and continue with their lives. Many amputees return to their lives rejuvenated, energetic, and feeling able-bodied. Many go on to accomplish fantastic feats such as skiing, mountain climbing, racing cars, entrepreneurship-activities that the obsessiveness of the disorder squashed prior to their amputation (G. Furth, personal communication, 2001; M. First, personal communication,2oo2).
Criteria for inclusion in the DSM
So, how does a diagnosis become included in the DSM? It is not an easy task. The following diagnostic criteria and features need to be present: 1) A diagnosis must have "clinical relevance" with enough people suffering from the condition, 2) A new diagnostic category must not be covered by existing categories, 3) The disorder must be a legitimate "mental disorder" (e.g., until the 1970s, homosexuality was included in the DSM as being a psychiatric disorder), 4) The disability must not merely be a desire for any perceived cultural advantages (e.g., for thousands of years, Chinese mothers fractured their daughters feet so that they grew crooked because Chinese men found it erotic), 5) There must be evidence of clinically persistent and significant discomfort, distress, and preoccupation resulting in impairment in social, occupational, or other important areas of functioning (First, 2000; Furth & Smith, 2000; M. First, personal communication, May 24-25, 2002).
The hope is that BIID will be included in the DSM V, which is slated for publication in 2010, according to First (2002).
What has been the reaction of most mental health professionals? From personal observation, the reaction has generally been one of disgust. Dr. Gregg Furth, in several of my conversations with him, has told me that he has encountered similar reactions within his own psychiatric community (2001-2002). There are conflicting views of what intervention(s), if any, are useful in resolving or at least reducing the distress associated with BIID. Some believe that surgery is the only answer (Elliot, 2000). Others believe that psychotherapy in conjunction with the use of psychotropic medications useful in treating obsessive-compulsive disorders is the answer (Dotinga, 2000). There was a woman at the symposium who stated that she was in remission from the disorder through ongoing psychotherapy (Stephanie, personal communication, November-December 2002). Another BIID sufferer, Dan c., has been in Jungian Psychoanalysis for nearly one year now. He wrote me, saying: "I have made a great deal of progress in understanding why I wish to be an amputee and have made some significant progress in other areas of my life. This has not, so far, made a dent in the intensity of the desire" (Dan c., personal communications). Other therapeutic approaches have included the use of Aversion Therapy and Cognitive-Behavioral Therapy; however, as Roger K. stated, although he was in cognitive therapy for some time, it did not lessen the obsessiveness of his desire (Roger K., personal communication, 2000).
In an article published in Salon magazine, Stacy Running, a San Diego prosecutor, stated that she knows of no laws in the United States that prohibit the amputation of a healthy limb (Dotinga, 2000). So, why do surgeons refuse to amputate healthy limbs at the request of their patients? What makes this different from someone who has cosmetic or body-altering surgery (i.e., breast augmentation, nose jobs, penile lengthening, implanting silicone horns, and screws in the skull)? The answer lies with the physician's own ethics, the "Hippocratic Oath," and perceived legal liabilities. Dr. Robert Smith is a surgeon from Scotland who has successfully amputated the healthy limbs of two men but has since been forbidden by the British Medical Council from performing any more voluntary amputations (Beckford-Ball, 2000; Cuen & Benkoil, 2000).
So whatever happened to George?
That warm September day in 1992, George thought he had everything planned thoroughly, but he had not counted on his new cordless phone not working out on the lawn. If it hadn't been for his landlady, George would have died. George finally got his wish, after an agonizing 10 days in the hospital where the doctors - expressly against George's wishes - tried fervently to save his leg. He won, though, and finally left the hospital with one less leg but also less the anxiety and obsession he had carried with him for so long. George now describes his life as full and rewarding. He enjoys retired life, making wonderful breads and jams and being involved in local activities. George says that the amputation was the best decision he had ever made in his life. His only regret is that he had not done it earlier. For others like him who have not had an amputation, they continue to struggle with the constant internal emotional torment this disorder causes, hoping for an answer and a cure.
Francie Horn, LCSW, CCBT, CRAT, BCD, performs short-term psychotherapy and counseling to inpatients in the behavioral health department of Orlando Regional Medical Center and has her own private practice.
This author gratefully acknowledges the following: The use of research information performed by Dr. Michael First; the efforts of George Boyer and other BIID sufferers who opened up their worlds to me and allowed me to tell their stories here; and the undying support from and conceptual discussions with Dr. Gregg Furth; without all of whom this article would not have been possible.
© 2003 Social Work Today.
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