| 1.8°C Dublin

The bizarre world of body Identity Disorder

In 1997, a Scottish surgeon, Robert Smith, was approached by a man wanting the amputation of his healthy lower left leg, apparently because he believed that it wasn't part of him, but was alien to his body and to his personal identity.

The operation was performed and the patient reported a few years later that his life had been transformed for the better. A second patient also reported being happy with the outcome of his similar surgery. Smith wrote a book about it with Dr Gregg Furth, a child psychologist from New York, with a professional and personal interest in the condition.

Furth had sought out Smith to perform the above-knee amputation that he desired, for reasons similar to Smith's other patients. He never did have the surgery as Smith was prohibited by his hospital from carrying out these procedures when the story hit the headlines and there was a massive public outcry.

Now, according to reports, a doctor somewhere in Asia performs these clandestine operations for those experiencing similar symptoms to those operated on by Smith. Go-betweens arrange the procedures; the meetings between the patients (called "wannabees") and the doctor in question are held in secret locations.

The condition for which these are carried out is called body identity integrity disorder (BIID). It is a newly emergent disorder, with probably no more than a few thousand cases existing worldwide but, in truth, nobody knows for certain.

This is not yet a fully recognised psychiatric disorder but it is being written about in the psychiatric literature and will probably be recognised as such in the next few years. In this condition, the individual feels the structure of certain body parts and how they are experienced are incongruent.

Most commonly, limbs seem alien. As a consequence the person wishes to be an amputee, convinced that this is the means by which they will achieve their true identity. While, for most, the focus is on limbs, there are reports of the sense of incongruity with other parts of the body also. Some resort to self-amputation using tourniquets to cut off the blood supply or by artificially inducing frostbite so as to cause gangrene.

Chloe Jennings, who lives in Salt Lake City, believes she should be wheelchair bound. Even though she can walk and even ski, she wears leg braces and spends most of her life in a wheelchair. She has unsuccessfully sought surgery to sever the nerves to her lower limbs so that she can correct what she feels is an aberration - ie that she is not confined to a wheelchair. She writes for the BIID support group 'Transabled'.

The condition was initially called apotemnophilia when first described by psychologist Gregg Money in 1977. He believed it was a type of sexual abnormality (paraphilia). The name was changed to BIID in 2004 based on the work of Dr Michael First, from Columbia University, New York. He saw it, not as a paraphilia, but as partly resembling gender identity disorder since the person's sense of themselves was laid bare by their bodily concerns.

Dr First carried out interviews with 52 such cases and published the results in 2005. A few had their wishes for surgery acceded to, most had not and longed for it. He found that over half had met with amputees as children and thereafter became fixated on having their limbs removed. According to him, they are very specific in their request and could pin-point to exact amount of limb they wanted removed.

Some reported that they enjoyed playing with crutches as children and pretending to be amputees. Most hold down jobs and have spouses/partners and children.

Some see this as a psychiatric disorder because of the bizarre nature of the symptoms. Some psychiatrists have recommended surgery, although this is a minority.

Reading the scientific literature, caution seems to be the overriding approach. Now, it is suggested that it is a neurological condition. There is a representation of our body in the brain, like a map. Every sensation that we experience is mapped onto this image, called the homunculus. The map can be disrupted, it is believed, due to a congenitally dysfunctional right superior parietal lobule, resulting in failure to form a total and unified body image.

Recent MRI evidence shows that people with BIID have decreased activity in this site of the brain when the "alien" part is touched. I have never seen a case of BIID and I would be deeply concerned by the ethical issues that it throws up.

Deliberately inducing a disability in somebody because they desire it, is, in my estimation, a step too far. It is clear from reading the scientific literature that even the most open-minded of psychiatrists are troubled by surgical interventions, notwithstanding the failure of psychological or pharmacological treatments to help.

It remains to be seen how the portrait of our body that lies in our brain can be corrected in order to alleviate BIID. But with our knowledge of the brain and its working expanding, that may not be as remote as we fear.

Health & Living