Body integrity identity disorder (BIID) tests the tolerance of even the most open-minded people. Those afflicted with BIID feel one or more of their limbs do not belong on their body. Sometimes the feeling is so overwhelming sufferers want doctors to amputate or paralyse their otherwise healthy limbs.
Dr Christopher Ryan is a psychiatrist at the University of Sydney. He has experience treating sufferers of the condition. Dr Ryan spoke to DiVine about BIID which he says is a
really nasty illness to live with.
A mysterious illness
Doctor's aren't sure what causes BIID.
Researchers think part of the brain that controls body image is abnormal in people with BIID. The research is only preliminary but this could be a cause of the condition, he says.
People with BIID often don't tell their family and friends about it. They fear no-one will understand how they feel. Dr Ryan says,
BIID is probably fairly rare. But it's hard to estimate the number of sufferers because many keep it a secret.
Sean O'Connor runs the website transabled.org. It's an online forum where people discuss their experiences of living with BIID.
O'Connor has felt an intense need to become a paraplegic since he was a child. He uses a wheelchair to relieve his BIID though he is not paralysed.
He understands why people find it difficult to accept BIID.
Many people think that BIID is easy to control, or that we can just choose to ignore it, he says.
I honestly don't think BIID can be accepted by society at large until the stigmas attached to disabilities are gone.
After years of living in anguish some sufferers resort to dangerous self-amputations. As a life-saving measure Dr Ryan believes it may be ethical to provide surgery options for people with BIID. But he says surgery would be considered
only after careful assessment and as a last resort.
In January 2000 U.K surgeon Dr Robert Smith removed two healthy limbs from BIID patients. The patients said they could find no other way to relieve the intense distress caused by their BIID. An outcry erupted after the operations became public knowledge. Dr Smith argued the patients were so tormented by their alien limbs they might take action that endangered their lives. He was banned from performing similar surgery.
In desperation sufferers have frozen their limbs or deliberately injured them in the hope doctors will amputate. In 1998, Philip Bondy of New York had his left leg amputated by an unlicensed surgeon in Tijuana Mexico. Two days later Bondy died from gangrene while recovering in a motel room.
People with BIID consider the problems they will face if they were to become an amputee.
Sufferers don't want to be disabled or dependent on others, Dr Ryan says.
In my experience when someone with BIID does acquire the disability they want they generally adapt well and feel their life is better.
Medication and counselling are commonly used to help treat BIID.
Sufferers seek other avenues besides amputation to relieve their BIID, Dr Ryan says.
Medication and counselling are commonly used alternatives. Unfortunately there is no evidence either are effective.
O'Connor has found these alternatives haven't worked for him.
If it were possible to do so, I would hope that in nearly 20 years of attempting various courses of therapy, I would have managed to get a handle on it, he says.
Experts believe people with BIID are neither psychotic nor delusional. It's reasonable to expect sufferers could dismiss their BIID by using logic. But BIID defies logic.
understanding that our need to have an impairment is abnormal doesn't make it any easier to cure.
BIID is a condition that doesn't attract much empathy. Hopefully future research will unlock its secrets leading to treatment that lets sufferers live in peace with their bodies.