Rare Body Integrity Identity Disorder Strikes Patients with Desire for Amputation

Imagine you wake up one morning and as you get out of bed you notice something strange—your left leg. It looks totally normal, like a mirror image of your right leg. But something is different, wrong about it. You see it attached to your body, but, inexplicably, you know that your left leg is not yours. It’s not a part of you.

As you continue through your day, the feeling persists. Every time the foot attached to your left leg hits the ground, it seems like someone is trying to trick you into believing it’s your foot when you know it isn’t. Just looking at the leg sends a wave of cold discomfort washing across your spine.

Years pass. You get up every morning with a leg that is not yours, that you can’t get rid of. You dream of sticking it in ice until it dies and falls off, or taking a chainsaw to it, or shooting it off with a shotgun. You imagine how happy you would be without that leg. But you do so in silence, because only a crazy person would cut off a healthy leg, right?

Finally, you work up the courage to ask a surgeon to remove it. You simply can’t continue dragging around a foreign limb, and you’re prepared to cut it off yourself if you can’t be helped.

Now, imagine you’re that surgeon. What would you do? Your patient is completely convinced he needs his leg removed, and yet medical practice would say you must, above all, do no harm. The problem with doing nothing, however, is that the patient has vowed to do it himself―without the help of a surgeon or anesthetics.

Amazingly, real doctors have actually been put in this position. In 1997, a surgeon named Robert Smith was contacted by such a patient. The patient’s name was Kevin Wright, and he claimed to have known since he was eight that his left leg was not a part of him, that it was “alien.” After much deliberation, Smith performed the surgery, and the patient reported having his life “transformed for the better” by the amputation.

Wright was neither the first nor the last person to experience the phenomenon of desperately wanting an amputation. The first known case was reported in 1977 as apotemnophilia, in which patients have a sexual obsession with becoming an amputee. After it was realized that most cases of desiring amputation have no sexual basis, as with Wright, the syndrome was more broadly defined as “body integrity identity disorder,” or BIID.

A wealth of theories have been published as to the biological basis of BIID, but it’s such a rare disorder that there aren’t many subjects to study and learn from. One hypothesis posits that the disorder results from structural changes in the sensory cortex devoted to the lower body, which processes tactile information from the trunk and legs, and the anterior insula, which mediates sexual arousal that does not involve touch. Changes to brain regions may explain why 80 percent of BIID sufferers want amputations of their legs and why BIID sometimes has a component of sexual fetishism.

Despite a general agreement on how to characterize the disorder and some hypotheses as to its cause, the medical community still hasn’t determined how to treat BIID. On one hand, some doctors and bioethicists argue that amputating a healthy limb in a hospital upholds the “do no harm” oath since it prevents patients from attempting amputation themselves, a real concern. Additionally, BIID appears to share similarities with gender identity disorder, in which patients feel like they are trapped by the gender assigned to them at birth. A person’s body does not correspond to their sense of self. In those cases, an acceptable treatment is elective gender reassignment surgery.

Surgery is not considered acceptable for BIID patients by many psychiatric professionals, who see amputation as giving in to the syndrome instead of treating it, which is not standard operating procedure in psychiatric wards. For example, for schizophrenia patients who have delusions of wealth or fame, the accepted medical practice is not to fulfill those delusions but instead to eradicate them.

Even more intriguing than the complications arising from BIID may be what it can teach us about our construction of ourselves in our own mind. The famed neuroscientist Antonio Damasio at the University of Southern California has hypothesized that our understanding of ourselves is rooted in our body identity―when we wake up in the morning with the same body as we went to sleep with, we remember the same story about ourselves from the day before. This allows us to maintain a consistent understanding of who we are. Indeed, it seems as if sufferers of BIID find intense psychological distress in having bodies that do not correspond to their story about themselves.

“With BIID, the numbness goes beyond the legs. It seeps into my emotions,” wrote one man with a wish for amputation. Another said, “The soul feels as though it belongs to a body with only one leg. The body does not correspond to this inner reality.”

It appears that BIID patients are paradoxically missing a part of themselves because their body contains something extra. Though the medical community has yet to understand and treat this rare disorder, people continue to live in a hellish state of incompleteness, discontent, and disillusionment. As psychologist Gregg Furth, who suffered from BIID starting around the age of five, puts it, BIID is “about becoming whole, not becoming disabled.” Hopefully, modern medicine can soon begin making these people whole again.

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