Imagine living your whole life in a body that feels wrong.
We’re all familiar with transgender individuals: those whose gender does not match their sex. I can only imagine the pain and frustration they go through. But Body Integrity Identity Disorder takes it one step further: it causes its sufferers to feel they should have been born as amputees, leading some to cut their own limbs off.
I came across the subject when I caught a showing of Armless, an indie comedy. At the time I thought it was a quirky idea for a film. I didn’t realize there were real people who felt this way.
Unlike people with gender concerns, the ethics involved in helping these patients are complex. The medical community tends to turn away when you ask that a perfectly healthy limb be chopped off. Patients are then left to their own devices to see the limb come off. Some sufferers “have used chain saws and homemade guillotines” to fix what they feel Nature messed up. Others try to mutilate a limb to the point that physicians have no choice but to remove it.
I’m not judging the people with the disorder. It’s the condition itself I find haunting. Imagine if the only way to feel whole was to cut part of yourself away.
Learn more about the condition on Slate, Wikipedia, and in the documentary Whole.
August 28th, 2012 at 6:53 pm
Sounds like an episode of “Criminal Minds” or “Law and Order – Special Victims”.
August 30th, 2012 at 7:10 pm
I don’t know if you signed up to follow comments, but if not: a man suffering from the condition commented on the post, if you want to read his perspective
August 30th, 2012 at 6:45 pm
I can say that it is very real to have this and no where to turn for help. I have been struggling with BIID for al long as I can remember, although it wasn’t until a few years ago I learned the name. I feel as though I should be an amputee and or paraplegic. my legs and left arm do not belong to me. I can not explain how this actually feels except to sort of compare it to Transgender. Feeling as though you were born in the wrong body and needing to fix it. Whats more frustrating is that there is very little help out there currently and I end up dealing with it alone. What people do not understand they call crazy or weird, granted to someone without this disorder I can only imagine what your thoughts are. But, what I know is that I need this to feel whole and be able to see myself as I really am. I would never go to the extreme and hurt myself, although the thought is almost always there. I can say that if there ever is an opportunity to make this happen, I will be in line waiting.
August 30th, 2012 at 7:08 pm
Wow, Mike, thank you for sharing
As I said in the post, I don’t blame or judge those such as yourself who are experiencing the frustrations of the condition. It’s the potential for harm that scares me…that someone may feel desperate enough to mutilate themselves in order to escape the feeling. Being haunted day and night by something that you can’t control must be terrifying.
My “Real Life Horror” posts are not meant to belittle or to cause a spectacle. Rather they’re meant as introductions to some of the “strangeness” of life; strange being used here in the sense of outside most people’s experiences. I hope the post provided that in a non-offensive manner.
I appreciate your input, and hope you find (safe) relief, in whatever way is best for you.
September 3rd, 2012 at 8:36 pm
I am trying to get my voice heard about this condition as many people still have yet to determine what needs to be done for people like me. I am glad that you are speaking up about this and that you understand in a way rather than just say its sick and move on. If you ever want to write a story about this issue in depth I would be more than happy to participate. I just want to get help and especially for those who do feel the need to mutilate themselves because that is the only way they feel they can be cured. I do feel that way sometimes but I also know that I do not want to risk dying.
January 20th, 2013 at 3:35 am
Not sure what makes you qualified to decide that BIID is worse than GID. They are dissociated from parts of their body and want them remove, so do we. Unless we’re naturally lucky, or are taking hormones for the rest of our lives, every time we go out of the house we’re reminded of how we were born. There might not be doctors willing to surgically remove bits of you, but in many countries there isn’t for trans people either, or nit without jumping through risky hoops (Sweden and sterilisation anyone?)
January 20th, 2013 at 10:46 am
I’m not saying that one condition is “worse” than another. What scares me, and the reason I posted this entry in the first place, is that there is virtually no help for people with BIID. It worries me, especially given the risks should someone decide to amputate their own limb(s), which seems to be just about the only way for many people with BIID to achieve their wholeness.
I agree with you that it’s not easy for people with GID, either, especially with the hoops people must jump through, but at the same time there are entire practices devoted to treating trans individuals. There’s at least hope that people will find a resource to reach out to, even if it means reaching far beyond their local medical system. I don’t think the same can be said about BIID.
Maybe my post wasn’t as clear as I meant it to be, and if so I apologize. I don’t have either condition myself, so I did my best to present information from an outsider’s perspective. Either way, your comment made me think; thank you for that.