Living with Body Integrity Identity Disorder: A condition that convinces sufferers to amputate their own limbs

Living with Body Integrity Identity Disorder: A condition that convinces sufferers to amputate their own limbs

Waking up from surgery, John* was surrounded by doctors.

He looked down and his left leg had been amputated below the knee.

But rather than fear and sadness, John was happy.

This is what he had wanted for most of his life.


That is the reality of living with Body Integrity Identity Disorder (BIID) – a psychological condition where sufferers believe that they have been born with a part of their body that should not be there.

They usually have an overwhelming desire to have one of their limbs amputated but others have reported wanting to be in a wheelchair or to be blind, even though they are physically healthy.



Like someone with Gender Dysphoria, they believe the body they are born with does not match their identity.

It’s not that they believe the limb is ugly or they don’t like the look of it but they feel that it is an additional and unnecessary part of their body.

Dr Mark Salter, a spokesperson for the Royal Society of Psychiatrists, explains that the condition is very rare and is still poorly understood but it is thought to be connected to the right hemisphere of the brain.

He says: ‘This condition is a part of body identity disorders. People with these conditions can become relentlessly fixed on appearance, for example, with anorexia or body dysmorphia.

‘But for some people, they are focused on the idea, often from childhood, that part of their body doesn’t belong to them. In the case of BIID, that is usually a limb.

‘If they really believe that their limb isn’t part of their body, that is BIID.’

(Picture: Ella Byworth for Metro.co.uk)

John has memories of experiencing BIID when he was a child but says that when he turned 13, he started to have strong thoughts about becoming an amputee.

‘I’d had an interest in disabilities before by early teens, but it was about then that the desire to become an amputee myself became strong and ever-present,’ he tells Metro.co.uk. ‘It happened quite quickly.’

But it wasn’t until his final year of university that John felt able to talk to someone about his feelings.

‘I told a friend in my final year at university. Even so I was very nervous about their reaction and it took hours of me wanting to say something but not being able to before I finally blurted it out.

I spent about ten hours freezing my foot to be sure there was no chance of it being saved, then got myself to hospital.

‘Their reaction was sympathetic and accepting. It wasn’t the big deal that I believed it would be.’

In 2001, John was officially diagnosed with the condition by a professor at Columbia University, a leading researcher in BIID.

John had been connected with others with the condition for a few years and was certain he had BIID but a phone call with the professor confirmed this.

(Picture: Phébe Lou Morson for Metro.co.uk)

Although he now knew why he was having these thoughts, he struggled to control them, which led him to take drastic action.



He says: ‘Originally, it was very distracting and hard to keep thoughts off of my leg. Just the fact it was still attached to me made me feel wrong.

‘In 2005 I froze my foot in dry ice and became an left leg, below the knee amputee, which was how I had always seen myself.

‘I spent about ten hours freezing my foot to be sure there was no chance of it being saved, then got myself to hospital.

It was very distracting and hard to keep thoughts off of my leg. Just the fact it was still attached to me made me feel wrong.

‘I’d been in contact with a number of other people who’d also done it, so had a lot of information on the process and things to watch out for.

‘I’d done a lot of homework and preparation, and putting the plan in motion felt more like a case of just ticking all the boxes in order: do this, then the next thing, then the next, now sit and wait for ten hours.

‘Thinking about it now, and having heard of people who weren’t so lucky as me, there are things that could have gone wrong, but at the time I didn’t even think of them.

‘Since then I’ve just been getting on with life without the distracting thoughts, though unlike many people who succeed I’ve chosen to remain in the BIID community.’

(Picture: Ella Byworth for Metro.co.uk)

Though John told his wife about his condition, he does not openly discuss how he became an amputee with other people as he worries about their reactions.

‘My wife has been very supportive about this. I told her about BIID before we were married, as I felt it was too big a part of me to hide.


‘I keep it fairly quiet otherwise, but not completely. I have told a few close friends the truth, but most people and those at work think it was a car accident.

‘My family found out the truth the week it happened because back then I was using my real name on online support groups.

‘I worry that people will judge me for it and not want anything to do with me. I have a lot of self-esteem issues anyway, and this feels like something that would drive people away.

‘I have had a few negative responses and also from people in the disabled community. It would be nice if BIID could be universally accepted as a disability in itself, but I’m not holding my breath.’

I remember having a neighbour who was a girl who was pretty and she was also a finger amputee. I remember being enamored with her stumps and at her beauty and I wished that I could be like that.

Anna* has BIID but also has Gender Dysphoria (GD) and lives as a transgender woman. She believes that both conditions are connected.

She says: ‘I knew I wanted to be female probably when I was five or six, slightly before I had any signs of BIID.

‘I was approximately six years old when I had some of my first desires to be an amputee. I don’t remember any one moment that stood out for me but a conglomeration of memories noticing others without certain body parts.

‘I realised the feelings connected in my early teens. I remember having a neighbour who was a girl who was pretty and she was also a finger amputee.

‘I remember being enamored with her stumps and at her beauty and I wished that I could be like that.


‘I might have thought both BIID and GD thoughts before then but it wasn’t until then that I really noticed the some of the connection without having a name for it.

‘It was really during my research in about 2009 or 2010 that I was noticed it was pointing to a commonality between those with BIID often having GD as well.’

It wasn’t until two years ago that she started to accept both conditions while she was in a behavioural health inpatient unit.

(Picture: Ella Byworth for Metro.co.uk)

She explains: ‘I was really taking some honest assessment of who I am and realised yes I want to be a female, am a female inside and yes I want to be an amputee, and I am an amputee.

‘It was about two years ago when I came to the official realisation. Before that I had always been so judgmental of everyone thinking to be female because I was in the church and it’s just plain wrong. I was afraid to admit that I had that struggle.’

After explaining both conditions to her now ex-wife, Anna felt more comfortable talking to other people and now openly talks to others about BIID and GD.

‘In terms of BIID, I have support from my ex-wife and my friends. They just want to see me healthy and not hurting myself.

It has been misery though to feel like I am living in a way that isn’t accurate to what I’ve perceived of myself for all of these years.

‘I have been getting onto online groups to connect with others struggling with BIID as well. Some great forum conversations have come out of that. It is just nice not to feel completely alone out there.

‘In terms of being transgender, I started speaking pretty openly about that. I have shared regularly with coworkers, bosses, folks at karaoke and landlords.

‘I have only lived as transgender part-time and so sometimes people may see me in a different form one day and then a different form the next. I am still the same person inside.

‘I am trying to speak to others about it to really prep them and myself for when I go full-time. It seems easier to swallow for people.’

(Picture: Ella Byworth for Metro.co.uk)

Although Anna is supported by friends and family, she still struggles to live with both conditions.

‘The effects are tremendous and heavy. You would never know the internal struggle I had and how I wish I could get rid of those thoughts. Outside you would see such a fun loving, musical, joyous hard-worker who seemed to really love life.

‘I do and always have. It has been misery though to feel like I am living in a way that isn’t accurate to what I’ve perceived of myself for all of these years.

‘Everyday I desire this thing and identify with this picture that isn’t a reality. I know it could be a reality. Until I can be in that identity I am left in mystery and a mind that is constantly sensing different in the every day because I have both legs.

I have told a few close friends the truth, but most people and those at work think it was a car accident.

‘Living as a woman has tremendously helped me abate BIID feelings or distract from them but lately it seems as if they are coming back with a vengeance.’

Bobbie* says he believed he was supposed to be an amputee since he was three years old but felt unable to talk about it.

He says: ‘I guess you could say that I diagnosed myself. After having been ladened with this thing that I could not figure out and having been born to parents who didn’t like people that were different, I learned, very quickly, not to bring it up with them.

‘I vowed that they should never know about it. It would bring shame upon us all if anyone knew.’

(Picture: Ella Byworth for Metro.co.uk)

Bobbie read up about the condition, the cause of which is still unknown, and believed his thoughts fitted with BIID.

He says: ‘When I began talking to my psychologists and my psychiatrist I was able to educate them all on the condition of body integrity identity disorder.

‘From then on, they took what I said as truth. They even went so far as doing a great deal of research into it

‘I have spent years kicking myself for being the way I am. I have tried to deny it with no success. I have come up with dozens and dozens of schemes to become minus one of my legs.

‘Some of them were dumb. Some of them were pretty ingenious. All of them involved a great deal of pain and all of them had a great risk to my life.’

What is BIID? ‘This is a condition is a part of body identity disorders. People with these conditions can become relentlessly fixed on appearance, for example, with anorexia or body dysmorphia. ‘But for some people, they are focused on the idea, often from childhood that part of their body doesn’t belong to them. In the case of BIID, that is usually a limb. ‘If they really believe that their limb isn’t part of their body, that is BIID.’ Dr Mark Salter

Dr Mark Salter added that diagnosing the condition is not always straightforward and unfortunately, it is difficult to treat.

He says: ‘When you don’t have hard science, your diagnosis is based on what the person is telling you and the persistence of belief.

‘People with BIID have a pattern of thought that is increasingly intrusive and disrupts their way of life.

‘For some people those thoughts become so severe, they attempt to do something to remove the limb. That is very dangerous and can be fatal for some.

‘There is no specific treatment for BIID. Medication does not seem to work and treatments such as cognitive behavioural therapy looks at the lifestyle and motives rather than the disorder itself.

‘Hopefully in the years to come when we understand how we store a picture of the body in the right hemisphere of the brain, we will be able to explain what causes this condition and how to treat it.’

*All names have been changed.

Top picture: Phébe Lou Morson for Metro.co.uk

Need support? Contact the Samaritans For emotional support you can call the Samaritans 24-hour helpline on 116 123, email jo@samaritans.org, visit a Samaritans branch in person or go to the Samaritans website.

MORE: The World Mental Health Day 2018 theme puts the focus on young people

MORE: An open letter to the lost and lonely teenager struggling with their mental health

MORE: Children are facing catastrophically long waits for mental health support

Advertisement Advertisement