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My Coachella Backpack — Must have items for a blogger in the desert

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.