Do No Harm: The People Who Amputate Their Perfectly Healthy Limbs, and the Doctors Who Help Them

by Anil Ananthaswamy

It's been called a psychological disorder. Sufferers have been ridiculed and labelled perverts. Yet the compulsion to be free of a limb is no imaginary illness. The feelings the condition generates are extraordinarily powerful — so strong that sufferers often seek out the most radical of treatments, and a few unorthodox surgeons risk their reputations to assist.

Now we may know why: the condition's deep neurological roots are being unearthed, with startling implications for sufferers, the medical profession and our own understanding of ourselves.

In this disturbing story from new science and technology publisher MATTER, acclaimed writer Anil Ananthaswamy delves into the science and accompanies an underground group of sufferers who travel across the world to get the illicit surgery they crave. Join him on a journey that reveals what it's like to be at war with your own body.

Genres: Nonfiction, Medicine, Psychology, Health, Medical

28 pages, Kindle Edition

First published January 1, 2012

About the author

ANIL ANANTHASWAMY is former deputy news editor and current consultant for New Scientist. He is a guest editor at UC Santa Cruz’s renowned science-writing program and teaches an annual science journalism workshop at the National Centre for Biological Sciences in Bangalore, India. He is a freelance feature editor for the Proceedings of the National Academy of Science’s “Front Matter” and has written for National Geographic News, Discover, and Matter. He has been a columnist for PBS NOVA’s The Nature of Reality blog. He won the UK Institute of Physics’ Physics Journalism award and the British Association of Science Writers’ award for Best Investigative Journalism. His first book, The Edge of Physics, was voted book of the year in 2010 by Physics World. He lives in Bangalore, India, and Berkeley, California.

Reviews

[Petra X · Rating 4 out of 5]

We've all heard of phantom limb syndrome where someone who has had a limb amputated still feels it, and often painfully. It isn't a psychological problem as much as a neurological one - the area of the brain that 'controlled' the limb is still operating. The opposite problem is having a limb that feels alien, Body Integrity Identity Disorder and that is psychological and not neurological in origin.

The person who has BIID feels that the limb doesn't belong to them, is alien and shouldn't be there and all their problems would be solved if they could only lose the limb and live life with crutches, or if it is both legs, a wheelchair. Most people's first reaction would be that these people really need help. But why? Why shouldn't they get limbs hacked off if they want to? People get penises and breasts hacked off all the time because they feel they are really of the other sex.

But they can't. They have to live with their alien appendage unless they do something really terrible to themselves, like take painkillers and put the limb in dry ice for say 9 hours then it would be so damaged, surgeons would have to remove it. Some have practiced hacking it off themselves by starting with a finger.

There are though surgeons who, for a large fee, are happy to hack the limb off, and there are clandestine groups of people who are vetted by gatekeepers as suitable for treatment ie. can pay, are otherwise healthy especially mentally and presumably don't have relatives who will report the doctor. If approved, the gatekeeper will them where to buy their plane ticket to, and they are on their way to being one limb lighter.

(What's a bit creepy is that these groups of BIID sufferers have followers who have infiltrated the forums in order to be able to fulfil their sexual fantasies, sex with amputees).

Just as in gender reassignment surgery, these people are much happier when they feel all their body is their own and the limb that never, ever felt like it belonged to them has gone. I personally believe that people who believe they have the wrong gendered body and those who have alien limbs are suffering from psychological misadjustments but if the cure for one is considered surgery then why not for the other?

[Simon Sweetman · Rating 5 out of 5]

A really amazing piece of writing, sympathetic, compassionate and manages to say a lot in a small space of time about a strange, intriguing condition. Cheap to buy too, won't cost you an arm and a leg.

[Rachel · Rating 3 out of 5]

This was a book I grabbed on a whim when it was free for Kindle on Amazon. It was short but fascinating. I had no idea of the existence of this disorder. The book starts by explaining what little psychology is known about people who desire a limb amputation, then narrates one man's journey to find happiness. Written for the layperson, the book nicely covers our current knowledge and studies done without using technical terms.

[JHM · Rating 4 out of 5]

Before I read this Kindle single I had never heard of Body Integrity Identity Disorder -- which causes people to believe that one of their limbs is not *really* their own, but somehow an alien appendage. This cause such profound psychological distress that many sufferers try to amputate the offending limb by themselves. When they seek medical help, most doctors refuse to help, since they do not see a medical reason to remove a health limb. But within the community of BIID sufferers, there are "gatekeepers" who screen for those who truly want the operation, and connect them with doctors who are willing to help them.

This is an amazing, thought-provoking read, definitely something which challenges the common assumptions of medical ethics.

[Betsy · Rating 3 out of 5]

This long article (28 pages) is about people who suffer from body integrity identity disorder (BIID), in which they feel very strongly that one or more body part does not belong to them. It impacts their very identity of self negatively, and they very often seek to have the offending part removed.

The article was very interesting and well written, with sympathy for the sufferers, but I felt it was a little one-sided. Although the author made it clear that the medical establishment does not view amputation as a valid treatment for the disorder, there wasn't much detail about why they object to it.

[Daniel · Rating 5 out of 5]

This is certainly a new one on me: Body Integrity Identity Disorder, or BIID, a psychological condition in which the sufferer feels compelled to remove one or more healthy limbs from his body. It sounds crazy, but there are people out there who feel that a part of their body is completely alien to them and, as such, desperately long for it to be removed. There's no question about their sincerity, as some go so far as to attempt self-amputation. Anil Ananthaswamy does a wonderful job of describing this condition with both scientific objectivity and sincere compassion for those with this strange condition. It should be noted that this is not a book; it's a Kindle single - and the first publication of "serious, in-depth, long-form online journalism" from the publisher Matter. I'm not sure how well this approach to publishing will succeed in the future, but Do No Harm certainly gets things off to a rousing start.

While BIID is not a medically recognized disorder - not yet anyway - the author makes a compelling case for its consideration. The fact that the right superior parietal lobe is thinner than normal in those with BIID suggests something medical rather than psychological is going on here - even though it's unclear if this is a cause or effect of the condition. As Ananthaswamy describes it, BIID is sort of the flip side of phantom limb sensations - in this case, something has caused the brain's internal map of the body to exclude a part that really is there.

The author doesn't delve too deeply into the ethics of doctors removing healthy limbs for those with BIID, but he does discuss an underground network linking patients with an Asian doctor willing to perform such surgeries - under false pretenses, of course. The most interesting thing to me, though, is the fact that those who do have the amputation - usually a leg - have no regrets after the fact. They happily don crutches, finally feeling as if their bodies are whole.

Exceedingly well-written, Do No Harm: The People Who Amputate Their Perfectly Healthy Limbs, and the Doctors Who Help Them proves just as fascinating as the title suggests.

[Jamie Rose · Rating 3 out of 5]

Well written article on a largely unheard of condition, BIID, similar to BDD, where the individual doesn't recognise their limbs as part if their body . The story follows one man seeking amputation of a healthy limb and the people who help and support those who this are afflicted by this psychiatric condition. Interesting subject, I did find myself sympathetic to David and Patrick's cause, however it's not something that I could personally relate to and some readers may find the subject upsetting.

[Manda · Rating 4 out of 5]

A short and easy to read but nonetheless fascinating look into Body Integrity Identity Disorder, where people feel so strongly that certain limbs do not belong on them that they actively seek amputation in order to gain freedom from the part of themselves that was holding them back.

[Sherri · Rating 2 out of 5]

I had never heard of BIID until I read this book.why anyone would feel that one or more of their appendages is not their own is beyond anything I could image. Why anyone would go to such lengths to rid themselves of an arm, leg, or a digit, well, I can't even imagine.

[Meli Lew · Rating 4 out of 5]

You learn something new everyday, and with this essay I learned something that I couldn't stop reading. The disorder is heartbreaking, but you can't help but feel relief for those who were able to find peace. Even if I don't understand it myself...
Great read, really!

[Atila Iamarino · Rating 4 out of 5]

Gostei dessa linha de leituras longas, quase um livro, mais denso do que cabe em uma revista ou jornal e barato. E a história das pessoas que querem amputar membros próprios dá uma aflição e uma pena profunda.

[Natalia · Rating 3 out of 5]

Interesting, but short and very fluffy. It read like a mid-length magazine article. I hope Matter has some longer meatier articles in the works.

[Aron]

A well written piece of journalism on a topic that I had very little prior knowledge of. The author gives a chilling insight into what it is to suffer from Body Integrity Identity Disorder.

[Jolie · Rating 4 out of 5]

A fascinating and insightful read. I look forward to reading more from Matter

[D. · Rating 2 out of 5]

it's more of a long article rather than a book. wasn't too impressed

[Rebecca · Rating 3 out of 5]

I recently watched a Law & Order episode on a very similar topic so when I came across this I just had to read it. Informative and disturbing, totally worth the $0.99

[Derrick Schultz]

Another great MATTER article. Sure to raise a huge number of questions for any reader.

[Kathy Boehm · Rating 3 out of 5]

A 28-page essay on a disturbing yet apparently real disorder. Eye opening and more than a tad creepy. Kindle single.

[Dorianna · Rating 3 out of 5]

A decent introduction to BIID. The writing could have been better and I thought it ended very abruptly with no real conclusion, but the subject is very interesting.

[Jamie · Rating 4 out of 5]

FYI, this is a long article, not really a book. I downloaded without knowing that and was disappointed at the length.