“Once I’ve got the money and the appointment is scheduled?” he went on. “That’s the only time in my life I feel anything close to happiness. That’s like . . .” He paused. “That’s like my one little bit of peace.”
It seemed to me that what Eddie was really talking about was hope. He had been in some form of psychiatric treatment for years, and although his symptoms improved somewhat when he was on the class of antidepressants known as serotonin reuptake inhibitors (SRIs), they didn’t fully subside. As he spoke, I realized that the reason the useless surgeries were so reinforcing had nothing to do with their outcomes. They were addictive because they promised relief, and living with the promise provided a respite from the torture of feeling as if he would always be hideously ugly.
Of course, the promise didn’t ever last. “Right after the procedures, I still feel pretty excited, but I guess that’s when the first worries start to creep back in,” Eddie explained. “What if this last-ditch new laser didn’t do what it was supposed to? What if my skin is exactly the same? Or, Jesus Christ, what if it actually looks worse instead of better? For the first couple of days, I can hold on to what the doctor told me: that there’ll be redness, or swelling, or whatever. But still I start to see that nothing’s really changed. Then . . .” And here Eddie’s voice trailed off. He shrugged.
“Then what?” I pressed him.
“Then . . . God. Then it’s . . . it’s an absolute pit of despair, you know?”
I nodded.
“The money’s gone, the excitement is gone . . .”
“The hope?” I asked.
“Yeah,” he said softly. “Whatever shred of that there was, that’s totally blown out of the water. Those are the days, after the procedures don’t work like they’re supposed to, that I find myself thinking, ‘You know what? I just need to die.’”
Eddie laid out this course as a true expert, familiar with every inch of its terrain. His fluid navigation of it was heartbreaking. That he would subject himself to it over and over again, despite an ability to map it out with utter precision, spoke to . . . what? Some way in which he had been failed by psychiatric treatment? A resistance to healing buried deep within his own mind? My inability to steer him toward safety, toward sanity? The brutality of this disease that would not release its bitter hold?
In writing about what might cause BDD, Dr. Phillips gives an explanation that is as maddeningly inexact as my own questions about why Eddie is trapped in its horrible lockstep. Her explanation feels like grasping. It also is almost certainly true. “You probably first need to inherit a genetic predisposition to BDD,” she writes. “This may consist of a vulnerability or susceptibility to developing the disorder BDD specifically or a more general genetic predisposition to worry and obsess—or both. This tendency may involve the brain chemical serotonin and other neurotransmitters, as well as certain areas of the brain. Let’s say you’re also born with a tendency to have a shy and self-conscious personality; if this temperament is combined with a tendency to obsess and worry, it may further increase your chance of getting BDD. Environmental factors may further increase this biologically based risk; for example, if you’re teased a lot as a child or experience lots of rejection, this may further funnel your genetically based worrying tendency and self-consciousness toward BDD symptoms. And if you’re already predisposed in these ways to develop BDD, you may be hyperalert to media images of perfection (such as flawless skin) and buy into them more than the average person does. Then, if your boyfriend breaks up with you, that may trigger feelings of inferiority and full-fledged BDD.”
While the consequences of BDD can be grave for patients, the consequences can also be grave for those who treat them. When patients like Eddie have put all their hope and all their money into surgical procedures that do little or nothing to alleviate their symptoms, they conclude that the procedures have failed. Some, like Eddie, internalize that disappointment. Others may hold their physicians accountable for these perceived failures. Sometimes the blaming takes the form of litigiousness. Occasionally it turns violent. A 1996 paper in the medical journal Dermatologic Clinics cautions physicians that BDD patients’ anger “may be directed at the attending physician with vitriolic letters, death threats, and even physical violence. In recent times in the United Kingdom,” the paper continues, “one dermatologist and two plastic surgeons have been murdered, and practitioners working in this field should know that there is a small but definite risk of assault when managing these patients. The long and arduous consultations, repeated telephone calls, and constant need for reassurance can put a significant strain on the medical practitioners involved.”
Selma, my patient who sought a dentist to pull all her teeth and “start over,” had not been violent, but she had been threatening. Selma attributed her perceived problems with the appearance of her teeth to the first dental procedure she’d ever had. “That woman destroyed the alignment of my whole jaw, my bite, everything,” she told me, referring to the technician who had applied a whitening solution to Selma’s teeth. That had been more than a decade ago. First, in the months following the procedure, Selma began going to the office to try to confront the technician. She sent letters to the office and to the dentist, threatening lawsuits and blaming the technician for “ruining” her appearance. Eventually she moved to another part of the country but returned three years later. She immediately went back to the dentist’s office, “to tell that woman what she had put me through since I had seen her last.” When she found that the technician no longer worked there, Selma found her home address and began stalking her, leaving her threatening letters and phone messages. Finally the technician informed the police and got a restraining order against Selma. She complied with the restraining order, but in each of our sessions ten years later she spent at least part of the time ranting about how angry she remained at the woman she blamed for all her unhappiness.
Eddie demonstrated that same persistent adherence to his delusional belief. During the year that I treated him, the frequency of our visits varied dramatically. We were initially scheduled to meet every month, to check in on Eddie’s symptoms, to see how the SRI that I had prescribed for him was working. When Eddie admitted he wasn’t taking the medicine reliably (“What’s the use?” he would say. “Prozac’s not gonna help my acne.”) and he found himself thinking more often that he would be better off dead, I saw him on a weekly basis. No matter how frequently or infrequently our appointments were scheduled, Eddie canceled half of them.
When we did meet, I tried every way I could think of to convince him of the potential benefits of cognitive behavioral therapy (CBT), a kind of psychotherapy proven to reduce BDD symptoms, sometimes dramatically. I showed him data about the treatment’s efficacy. I told him stories of patients very much like him whom I had treated with SRIs and CBT, and I told him that those patients had escaped the mirror’s hold, that they had entered into happier, fuller lives, without surgeries, without suffering.
Eddie remained absolutely certain that I had it all wrong. He believed I saw the same flaws on his body that he did but that I was pretending not to notice and trying to convince him otherwise. His delusion was so deeply entrenched that he knew the hideousness of his appearance to be true, as surely as he knew his own name, or his occupation, or his current state of despair.
“I’m not saying that it’s not great that those people got better, Dr. Montross, it is,” Eddie would say to me. “It’s just that they don’t have the skin I have. They don’t look like I do.” I tried to talk with Eddie about his reluctance to participate fully in treatment. I tried to cajole him into giving CBT a try. He could see no use in it. “The problem isn’t my thinking, it’s my skin,” Eddie would say to me over and over. “Why would I spend time and money on that therapy when I could be working during those extra hours and saving up for the new procedures that will target my real problem?”
Eddie believed so strongly that his problem w
as dermatologic, not psychiatric, that he saw my treatment—indeed any psychiatric treatment—as misguided at best and deceptive at worst.
He eventually capitulated after I challenged him yet again about his resistance to treatment. “Maybe your medicines and therapy could make me feel better about the way I look,” he allowed. “But I’d still look the way I do, so I’d be in some medicated state of denial, walking around. Even if I didn’t realize it because of the meds or whatever, I’d still be disgusting people with my ugly face.” Eddie was so convinced about his appearance that he feared that medicine or therapy would somehow make him blind to the horrors the rest of the world would see.
When I finished my outpatient year, another psychiatric resident took over the care of all my patients. I recently ran into that psychiatrist, and I asked about Eddie. It seemed that hardly anything about his condition had changed, that he remained plagued by his bodily concerns.
“He’s really struggling,” the doctor said. “There’s some new procedure . . . subcision? They put a needle under acne scars to try to break up the connective tissue making the scar, or something. Anyway, he’s gotten it done a bunch, even though he’s never had any acne scars that I can see.”
I remembered how hard it was to sit with Eddie and manage not to either argue with him about his symptoms or reassure him about them. Dr. Phillips repeatedly advised me how little there was to be gained by those actions, so I had always tried to meet him at the level of his sadness, his life losses, his suffering. But it wasn’t easy.
“Is he any happier?” I asked his new doctor hopefully.
“I wouldn’t say I’ve ever seen him happy,” the doctor replied. “I’d say he’s absolutely miserable.”
• • •
It is a windless morning in late April, and the sun is shining brightly on Rhode Island’s Narragansett Bay. Our friend Welly is staying with us. Deborah has written a play that is up at our regional theater, and Welly has sweetly made the trip from California to see it the night before. I’ve recently taken up running—about a year in, after two decades of saying I ran only if chased—and Welly and I had planned to go for a jog along the town beach and through the quiet of the neighborhood after I dropped the kids off at school. But sometimes the ocean changes things. En route home from the school, there is a rise in the road that dead-ends in a panoramic view of the bay. Lighthouse on the right, bridges to the left, little clam boats anchored in the shallows between on a calm day like this one. The water glimmers sharply in the April light. When I get home, I propose to Welly that we forgo the run and paddle instead. Deborah and I house a borrowed plastic kayak in our garage, and my family members all pitched in at Christmas to give me a stand-up paddleboard, which I have used only once in the cold spring since. When I ask if she’d want to kayak beside me as I paddle, Welly does not hesitate: Yes.
The water is frigid, and my body braces as I clamber onto my board, remembering my first outing, during which I fell three times and plunged up to my neck in the freezing bay. But soon I am steady and sure. My legs relax. My arms dip the paddle beneath the surface and, with a satisfying pull, propel me forward. Without discussing it we instinctively head toward the lighthouse. Welly is a sculptor, and as we glide, we chat about her work. She is, it turns out, thinking about the body. How we inhabit the architecture of the bodies we are given. How our bodies can be powerful and how they can be encumbrances. How they can feel inextricably linked to our identities yet how they can also misrepresent and betray us. I am making up some of this in retrospect, as I too often do about the jobs of my friends, falling captive to their ideas and suddenly following those ideas into thoughts that are more mine than theirs. Still, I think this is the gist of what we said to each other: The body is so innately known and yet still such a mystery. We talk about fidelity, and sex, and superpowers, and Underoos. We cover some territory.
As we’re paddling, I bring up BDD: how the mind can believe that the body betrays, when in fact it’s the mind that is the guilty party. We head deeper into the bay. It seems fitting that the water grows murkier beneath us. I tell her that I’ve been doing some thinking about another condition, too. This one has been called apotemnophilia—a not-altogether-accurate term for a condition in which otherwise-sane people want their healthy limbs cut off. From the Greek: apo-, “away from”; temno-, “to cut, hew, maim, wound, or sacrifice”; -philia, “amity, affection, friendship, fondness, liking.” Having a fondness for cutting away.
I first became aware of people seeking elective amputations not in my clinical practice but when my friend Jay Baruch, an ER doc and fiction writer, sent me an article that the philosopher and bioethicist Carl Elliott had written on the subject in the Atlantic. “You will want to read this,” Jay wrote in the attached message. He knows me.
I say that the term “apotemnophilia” is not entirely accurate because the suffix “-philia” places these people within a diagnostic classification—the paraphilias—that by definition involves sexual attraction. The OED defines a paraphilia as a “sexual desire regarded as perverted or irregular, specifically attraction to unusual or abnormal sexual objects or practices.” As it turns out, few patients who seek amputations do so for sexual reasons, and even those who acknowledge a sexual component to their desire to become amputees tend to cite another, nonsexual reason as the primary motivating factor. Therefore a new nomenclature has emerged for this condition. A less lovely term, but probably more diagnostically accurate and certainly less potentially pejorative: body integrity identity disorder (BIID).
A person with BIID knows that his limbs are healthy, but he is plagued by the persistent feeling that he is meant to be an amputee. He is also not psychotic or hearing voices telling him to cut off his limbs, like the young man winter camping who severed his hand with his hatchet.
In a BBC documentary on the subject entitled Complete Obsession, the people seeking amputation do not simply want surgery to remove a body part. They each have a highly specific sense as to where the cut should occur. They describe a sense of their bodies extending beyond where they feel they should. “It seems that my body stops midthigh on my right leg,” Gregg Furth, a strikingly ordinary-seeming New York psychoanalyst explains. “The desire that I have,” he says matter-of-factly, “is for an amputation above the knee on the right leg.”
A woman named Corinne in the film repeatedly draws a line with her hands at the crease between her pelvis and her thighs as she tries to explain where she feels her body naturally ends. “I feel that my legs don’t belong to me and they shouldn’t be there,” she says, expressing a longing to have them both cut off, “fairly high” up the thigh.
BIID is not yet included in the Diagnostic and Statistical Manual of Mental Disorders (DSM), though it was suggested for review and consideration for the most recent revision, DSM-5. The syndrome is not well understood and is probably quite rare. Yet, as a group, people with these urges are beginning to be studied, and occasionally descriptions appear of patients who may well have suffered from these symptoms in the past. In his meticulously researched book From Paralysis to Fatigue: A History of Psychosomatic Illness in the Modern Era, Edward Shorter recounts an incident in 1818 in which “Benjamin Brodie was invited to consult a ‘lady in the country on account of a disease of the knee.’ There were no obvious local findings,” Shorter writes. Brodie “recommended a course of treatment that failed, and the symptoms became aggravated. ‘She suffered more than ever, so that she became anxious to undergo the amputation of the limb.’ Brodie advised against it. ‘However, her wishes remained unaltered; and two surgeons of eminence in the country, yielding to her entreaties, performed the operation.’ On completion of the amputation they were surprised to see that they had removed a normal joint.”
Unlike Eddie, and other patients who suffer from body dysmorphic disorder, people with BIID do not want to be rid of their limbs because they perceive them to be hideous, diseased, or faulty in any wa
y. Rather, the limbs feel alien, as if they don’t belong. With intact bodies the patients, paradoxically, do not feel whole.
The way in which personal identity seems inextricably linked to the desire for amputation has led to comparisons between BIID and gender dysphoria. In gender dysphoria (previously classified psychiatrically as gender identity disorder and in lay terminology as transsexualism), people experience their gender as different from the one that their physical sex characteristics typically indicate. These syndromes share a disconnect between the fundamental way in which a person feels his identity ought to be and the way that his body is. Similarly, people in both groups are subjected to an intense degree of discomfort in their bodies, which may drive them to consider extreme measures to rectify this incongruity.
Gregg Furth and Corinne, like others with BIID, sought out surgeons willing to amputate their healthy legs. Dr. Robert Smith, in Scotland, had performed two such procedures in 2000, after which his hospital intervened and forbade him to do any others. In a news conference, Smith told reporters that the elective amputation was “the most satisfying operation I have ever performed.” Having met with the patients and having determined they were both sane and tormented, he insisted, “I have no doubt that what I was doing was the correct thing for those patients.” No hospital now permits the elective amputation of healthy limbs.
As a result, people with BIID have turned to their own desperate attempts to become amputees. In 1999 a seventy-nine-year-old man named Philip Bondy paid ten thousand dollars to John Ronald Brown, a surgeon who went to Mexico after he’d had his medical license revoked in the United States for performing black-market sex-change operations in hotel rooms and garages. In return for the money, the surgeon cut off Bondy’s healthy leg. Following the surgery Bondy was sent to his hotel room, where he died of gangrene.
Falling Into the Fire: A Psychiatrist's Encounters with the Mind in Crisis Page 9
