Erich Kasten: Doctors don’t understand Body Integrity Identity Disorder

What do doctors typically say when confronted with someone who wishes to amputate a perfectly healthy limb? I have been studying people who have this desire, known as Body Integrity Identity Disorder (BIID) ,since 2006. Many of the patients I have met complained that they were misdiagnosed as psychotic or delusional when they reported their desire for amputation.

To asssess the scale of the problem, my colleague Dorothée Neff and I sent a description of a typical BIID patient to 83 doctors in Britain and Germany. As we expected, only around four in ten correctly diagnosed the condition. Almost 30% got it absolutely wrong.

Some misdiagnosed the malady as Body-Dysmorphic Disorder, which causes sufferers to believe that a part of their appearance is in some way defect. Others thought the patients had Somatisation Disorder, a condition associated with persistant feelings of internal pain that cannot be explained by a medical problem.

What’s more, only one of the doctors said they would support the patient’s desire for amputation. A handful said they would give qualified support, but the bulk — 91% — said they would deny the request.

That is concerning because amputation appears to be beneficial for BIID patients. Together with my colleagues Sarah Noll and Peter Brugger, I interviewed 21 BIID amputees. Some had paid a surgeon in Asia for the operation — perhaps the same surgeon who appears in Do No Harm, a recent MATTER story about BIID patients. Others had put a leg in dry ice, or shot themselves in the knee, so that they could then force a physician to cut off the damaged limb.

Psychological therapy, therapeutic drugs and relaxation techniques had done little to help these people, and had sometimes increased their desire for an amputation. By contrast, all of them told me that surgery had changed their lives for the better. None regretted the operation. They experienced several problems regarding the quality of life (e.g. swimming, riding a bicyle or walking in uneven terrain), but these were bearable in contrast to the happiness brought by having fulfilled their wish. And many had told close family members about the true reasons for their amputation. I believe that these results show that amputation is a possible treatment for BIID, at least when other therapies have shown no effect.

I’ll finish by sharing some of the things that the amputees told me:

“I’m still feeling this lightness. I recognize a total normality. At any time I would repeat this operation, only sometimes I regret I’ve not had it 10 years earlier.”
“After my stump had shrunk enough, I was able to put my stump through my crutch and rest it on my crutch handle. I knew then that I had finally arrived. I was a real amputee. I had to learn to do some things differently, especially while travelling, but it all worked out for the best. I wasn’t on an emotional roller coaster because I was past all the healing and issues I was concerned about.”
“More than happy. Since the first day I felt complete.”
“After more than 7 years as an LAK amputee, I’m still extremely happy and content with my amputation and my stump! I can’t imagine NOT being an amputee. I feel as though my body is now in tune with my mind! I do not regret my choice to get an amputation at all. Yes, there are times where it is and can be a challenge, it’s still better than all the suffering I lived through until I got my amputation. I love waking up and seeing my stump there. My stump is still very erotic and I do not suffer from any pain at all, including no phantom pains.”

Erich Kasten in a psychologist at the Medical School Hamburg in Germany.

To read more about the science behind BIID, and to hear the stories of other BIID patients, read Do No Harm, a story from the new digital publisher MATTER. The story is free to access, but we rely on paid members to support the in-depth journalism we produce — and we’d greatly appreciate your support. Membership costs just 99c per month.

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