Very often it starts in the childhood. Dad had broken his leg and had to walk on crutches for weeks. Those crutches! For whatever reason they were strangely fascinating, catching the eye and not letting go of the mind any more. To borrow the crutches – more than just a child’s fun: An incredible feeling of completeness even though the walking aids were way too large with the handles reaching under the arm pits of the child since the kid is so small. That’s how I want to be – that’s who I will be like.
Similar memories is what patients share who decades later want nothing more than having their leg chopped off. Who is helping me to get paraplegia to justify the purchase of the wheelchair I already have bought? But alongside the growing desire, the bad conscience is growing as well.
A disease which isn’t a disease
Body Integrity Identity Disorder (BIID) is the medical name of a disease without ICD-number or entry in the DSM-directory. The patients are fully aware of their bizarre desire. And they meet with a wide range of emotions and reactions when seeking help from any healthy person or also from many physicians. But incomprehension, condemnation and not being taken seriously can lead to dramatic consequences. The patient lays down on rail road tracks, jumps out of a window or achieves with household tools what he cannot get officially: The feeling of wholeness.
This intensive feeling that the body would – after the amputation of a limb or after procurement of a tetraplegia – more “complete“ should not be misinterpreted as lunacy, schizophrenia or neurological disease says the neuropsychologist Erich Kasten at the University of Lübeck. He is one of the few researchers dealing intensively with this clinical picture where every imaginable therapy failed so far. In nine case studies he examined correlating personality traits and motives of affected people (Fortschr Neurol Psychiatr 2009; 77: 16-24).
There were only few parallels to Body Dysmorphic Disorders (BDD), fetishism or mania. In about a third of the examined people, sexual motives played a role. Wishes for amputation could change from one side of the body to the other but remained despite all medical and psychotherapeutic interventions. And thus the disease cannot be explained with a CNS lesion.
Questions about law and ethics
Not only does the legal side bother all parties but also ethic concerns probably come up in everybody who targets to preserve health and physical integrity. Since the disease is not officially a disease there is no approved therapy. A deliberately made amputation has to fulfil a therapeutic purpose and is only acceptable if this is the case.
Michael First, Professor of Clinical Psychiatry at Columbia University in New York demands help for patients. He examined 52 persons desiring an amputation of a limb. These desires for amputation had their roots already in childhood or youth. None of the patients were psychotic. Prejudices and blocking a treatment would not be the solution. Prerequisite for a potential therapy is knowledge and devotion to the clinical picture. He draws parallels to transsexual persons. For a long time, sex aligning surgeries were considered as ethically reprehensible.
Pro and con surgery
The Australian Christopher James Ryan finds pros for an amputation (Neuroethics 2009; 2:21-33). He reviewed medical and philosophical literature on the topic. His result: After clarification of the diagnosis and confirmation of the disease in addition to a treatment with antidepressants he considers amputation of a healthy limb as an ethically defensible treatment option.
In First’s survey, six patients had their desire fulfilled. All patients felt better than ever before. And there was no desire for any further amputations.