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What is body integrity dysphoria? Why a man amputated 2 good fingers

A 20-year-old man recently had two of his healthy fingers amputated to resolve his persisting distress that they didn't belong on his body.
Doctors look at an X-ray of a hand.
Posted at 8:47 PM, Apr 09, 2024

A 20-year-old Canadian man no longer has two of his healthy fingers after deciding to get them amputated, and body integrity identity disorder is why doctors agreed to it.

The extremely rare mental health condition — also known as body integrity dysphoria — describes a disconnect between a person's mental image of themselves and their physical self that manifests in believing a healthy body part doesn't belong, according to Cleveland Clinic. A desire to amputate that body part may make the patient feel more complete, but there's no way to know whether the procedure will achieve that goal, the medical center says. 

In this recent case, the ambidextrous male had been experiencing "profound distress" over his left hand's fourth and fifth fingers. After they were amputated, he experienced "immediate relief," highlighting the "unique challenges" people with BIID face and the importance of understanding the condition, Dr. Nadia Nadeau wrote in a clinical case report.

"Despite ethical concerns and limited literature on BIID, the decision to proceed with elective surgery was based on the patient's sustained desire, potential risks of self-harm and the distinct presentation involving two fingers rather than a complete limb," Nadeau said. 

The male patient reported that since childhood, he felt his fingers were "intrusive, foreign, unwanted" and didn't belong to him, "even if he knew they were indeed his own," the report says. This caused him to hide and keep them flexed, causing dexterity issues, pain and anger. Meanwhile, his traumatizing "incessant" thoughts that the fingers "encroached" upon his being caused nightmares, including that the fingers were rotting or burning.

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Like many others with BIID, the patient was hesitant to seek help and had never told his family about his overwhelming distress due to embarrassment about its "unusual nature," Nadeau wrote. These feelings can often result in self-amputation and self-harm to resolve the feelings, including for the patient.

"Working in a sawmill, he considered building a small guillotine to cut his fingers," the report states. "He was aware self-harm wasn't a safe solution and could have repercussions on his relationships, reputation and health. He couldn't imagine himself living for the years to come with those fingers."

After his brain imaging came back clear, Nadeau said the patient was first prescribed non-invasive treatments — including antidepressants, antipsychotics and therapy — for seven months to help his BIID symptoms, but his distress increased. 

Six months later, an orthopedic surgeon amputated the two fingers, and his emotional distress stopped immediately, per the report. Notably, Nadeau said the patient reported he could use his hand more effectively, as the two amputated fingers would often "catch onto everything" because he kept them flexed.

"He won arm-wrestling games, was able to drive his four wheels, kept working with his hands without any problem. He had constructive life plans, reduced anger, and improved well-being with family and at work," the report states. "He is now living a life free from distressing preoccupations about his fingers, with all his symptoms related to BID resolved. The amputation enabled him to live in alignment with his perceived identity."

Despite the success, Nadeau states BIID is still too under-studied to make amputation a "first-line treatment" option. 

For example, many other patients with BIID desire entire healthy limbs to be removed instead of just digits, and the doctor said that difference here made their decision to amputate easier, which could indicate selection bias. 

It's also still unclear what the exact cause of the disorder is, though some research suggests it could involve structural abnormalities in the areas of the brain that affect body perception, according to Cleveland Clinic. 

Nadeau says in any case, a successful study of amputation or treatment for BIID can help both patients and health care professionals.

"Disseminating knowledge about BID … gives an opportunity to evolve and make the healthcare system more inclusive with this type of presentations by broadening the definition of health through various models," she wrote. "Recognizing and addressing the unique needs of those patients can lead to a future where they can live with more dignity, respect and optimal well-being."