11 ms·

Body integrity identity disorder patient satisfaction after surgery (2014) [pdf]

51 points by freemint 4y ago

freemint 4y ago
Trigger warning: Contains references to voluntary disfigurement and mental health.
- political12345 4y ago
recuter 4y ago
3.2. Erotic Component Several, but not all subjects wrote they feel an erotic component as e.g.: “In puberty there came an additional sexual component of about 50% weight.”; “In addition the stump is erotic.”; “When my first wife suffered from an osteo-sarcoma and lost her left leg, my life was perfect. The stump became part of our sexual satisfaction.”; “There is an aesthetic sexual complex, in addition I find the kind of walking very erotic.”; “The otherness, the stump stimulated me. Pretending always resulted in masturbation”
- techdragon 4y ago
  I’ll be brutally honest, I’m no longer shocked by this sort of thing. I personally don’t get it, but I get how it’s their thing. It took just a few years exposure to the internet of the late 90s and early 00s to open my eyes to the simple psychological truth that the parts of our brain wired up to pass on our genes are some of the most powerful and fascinatingly flexible. The ample documentation on the development of so many different fetishes all following similar phases from expose through formative experiences to focus and on to full blown fetishisation. It’s the sort of thing that made me consider psychology as a career. The human mind is fascinating. When I read accounts like this it’s like watching a remake of a classic movie or a cover of a song, there’s always new bits, but you can see the classic parts like landmarks along a trail.
  - recuter 4y ago
    - mercer 4y ago
      It comes across more like mocking something that probably shouldn't be mocked
drummer 4y ago
amin 4y ago
Fascinating. This is about people who have a strong desire to have a their own (perfecly functioning) limb amputated. It concludes: “None of the patients regretted the surgery and a change for the better was seen in almost all areas of life”.
- lin83 4y ago
  The survey was just 21 people "exclusively contacted in BIID internet forums". How many people who cut off a limb and regretted it would stick around the forum that fed their compulsion to do it?
  - freemint 4y ago
    > How many people who cut off a limb and regretted it would stick around the forum that fed their compulsion to do it? Maybe many more then you would think. First of all of there are others with regrets they are most likely also found there. Second to warn others. Thirdly to vent. I agree that the evidence is not the highest quality but i have a hard time imagining a more involved study design that would pass by any ethic board.
    - shanusmagnus 4y ago
      I wonder if it's similar to Amazon ratings, where review distributions seem to skew toward people who either love the thing, or hate it? Presumably there's actual research on this. ... Okay here's something about the J-shaped distribution (mostly 5 stars, some 1 stars, little in between) in reviews [1]. (Edit: here's another, more recent summary [2] of polarity in reviews.) Would we expect the same in something as intimate as amputating pieces of your own body? Hmmm. [1] https://dl.acm.org/doi/abs/10.1145/1562764.1562800 https://dl.acm.org/doi/abs/10.1145/1562764.1562800 [2] https://journals.sagepub.com/doi/abs/10.1177/0022243720941832 https://journals.sagepub.com/doi/abs/10.1177/002224372094183...
      - t-3 4y ago
        Off-topic, but I think the effect is even more pronounced with a binary rating (thumb up/thumb down) vs a 1-5 star rating. I've noticed that really bad or mediocre games will take advantage of the upvote tendency by advertising "90% positive reviews" in an attempt to trick people into thinking they're good.
mgsk 4y ago
There’s a great long-form article about this: https://medium.com/matter/8476df17bddf https://medium.com/matter/8476df17bddf
- implements 4y ago
  > “The tension that had lined his face was gone. I sensed relief, happiness. David’s leg had plagued him for much of his life. He was free of it, and now he seemed whole.” This type of ‘cure’ for dysmorphia is not something to be celebrated.
  - GavinMcG 4y ago
    …why not? Italicizing “not” isn’t much of an argument.
    - implements 4y ago
      His fixation with amputating his leg started at four years old, it has an admitted sexual element, and now he has a permanent life-altering disability - all this for the want of proper psychological treatment.
      - fzeroracer 4y ago
        The study deals with this though. The people that have BIID do go through psychological treatment, seek therapy, medication etc which don't seem to blunt the issue. But ultimately the end result seems to be that they will eventually, one way or another, find a way to get the surgery they desire. I don't know what your solution would be in that scenario other than to criminalize it and even then, there's reports of people doing home made amputations by sitting on rail tracks or whatever else you can think of.
      - bastawhiz 4y ago
        > proper psychological treatment And that is....? There is no psychological treatment that cures BIID and the patient here seems very happy. Is it really better and "proper" to give someone treatment that doesn't solve their problem and leaves them upset?
jasonhansel 4y ago
If I'm reading this right: one of the subjects (#18) is 27 years old now, and had a "friend" perform an amputation on him in 2008...when he was about 13. Yikes.
- throwaway89201 4y ago
  No, it's a 2014 study. So he was 21.
curious-im 4y ago
Ive read stories from people with BIID and in many ways it's similar to gender dysphoria. The way they feel it, all the things around it, fantasies, dreams, etc. Gender affirming surgeries have success rate of 95%+. No surprise that BIID people have no regrets after all.
poszlem 4y ago
This type of "treatment" is an utter failure and surrender of the fields of psychology, psychiatry, and neurology. The way we used to think was - a sex change surgery used to only be performed because we could not fix the mental problem (patient being unhappy with their body). Now the whole script has flipped and we are talking about how a "transwoman has always been a women" and a "transman has always been a man", which is the newest version of "if theory conflicts with the facts, so much the worse for the facts". Now we actually ponder cutting off people's arms and legs, which is so incredibly bizarre. Not to mention how this opens a huge pandora's box of "recognising" "transabled" people, "transracial" people (see Oli London, Rachel Dolezal, or Martina Big) as, for the lack of a better word - "healthy". As a bisexual dude I suspect a lot of that has to do with the stigma around "conversion therapies", but I worry that term suffered from some really heavy "scope" creep.
- deleted 4y ago
  [deleted]
- JumpCrisscross 4y ago
  > type of "treatment" is an utter failure and surrender of the fields of psychology and psychiatry I, too, have an emotional response. But let’s be scientific. If the counselling shows middling success, and the amputation 90%+, why do our feelings, as third parties, overrule the person whose body it is?
  - poszlem 4y ago
    I don't say this should be forbidden for consenting adults. I am saying that it should not be sold as "the treatment" but as "we don't have anything better for now, we are working on it, if you can't wait, you can do it".
    - JumpCrisscross 4y ago
      > it should not be sold as "the treatment" but as "we don't have anything better for now, we are working on it, if you can't wait, you can do it" Isn’t this true of all treatments? It’s the best we’ve got. It seems to work. It has downsides. We’re looking for better options. We start with the least invasive option. But we don’t stop midway because something better might one day turn up.
at_a_remove 4y ago
I wonder if these folks are then eligible for disability. This never seems to be addressed in any of the breathless articles around this phenomenon.
- bastawhiz 4y ago
  It's extremely hard to imagine a meager disability benefit (if any) outweighs the surgery and recover and then living without the limb indefinitely. If you were really in it for the money, would you then hang out on a forum talking about the surgery and not the money? Why would you have a whole arm or leg removed when you could simply have a hand or some fingers removed? Even if they were eligible for the disability, the implication that this isn't a real disorder ignores almost every aspect of its reality.
  - ncmncm 4y ago
    Thinking of the healed leper in "Life of Brian".
  - at_a_remove 4y ago
    Nowhere did I imply that this isn't a real disorder. Go on, look for it. Additionally, maybe this is a disorder where the current solution is really crappy. I just want to know if they go on disability after. It's a question. Trying to distract from it is ... odd.
nonrandomstring 4y ago
There's a story from Oliver Sacks (Maybe in TMWMHWFAH [1]) where a patient wakes up after a head trauma or stroke and screams at his leg - "Get rid of it! Cut it off". IIRC, the dysphoria was acute or somehow treated, so that might suggest there's a good prognosis with neurological intervention. [1] "The Man Who Mistook Hos Wife For A Hat" https://en.wikipedia.org/wiki/The_Man_Who_Mistook_His_Wife_for_a_Hat https://en.wikipedia.org/wiki/The_Man_Who_Mistook_His_Wife_f...
- throwaway4bid 4y ago
  That actually wasn't BID, it was another condition called somatoparaphrenia. They might be linked, but no treatment short of surgery for BID has ever demonstrated efficacy.
bradwood 4y ago
Since when was "wannabes" a medical/academic term?
- throwaway4bid 4y ago
  "wannabe" was the in-group term used inside the BID community, back in the '00s. It's fallen out of favor as a pejorative lately.
throwaway4bid 4y ago
I have this condition (Body Integrity Dysphoria), along with a fairly intense physical disability that I did not choose (genetic disorder), and along with being trans, so I can answer any questions you'd like to ask. I became aware of my BID at age 6. I specifically want paralysis, which is ironic now that I'm showing neurological symptoms from the genetic condition. There is a sexual component for me, but it's not my main motivation, and the sexual aspect has reduced as the pure dysphoria intensifies. The physical dysphoria is fairly similar to the gender dysphoria I've experienced, but the social aspects, identity and tradeoffs are completely different. I've tried antidepressants, therapy including traditional psychoanalysis, IFS, CBT, ACT, etc. Nothing has put a dent in the dysphoria, only helped me move on despite it. I know two people who've successfully achieved their disability, and they're much happier now. I would if I were not so terrified of the risks of DIY.
- shrubble 4y ago
  Was treatment with pimozide ever attempted?
- freemint 4y ago
  I am aware that hypnosis can be used to induce temporary paralysis in targeted body regions. Have you experimented with that and does it offer a temporary reprieve from at least one of your sources of disphoria?
- krispyfi 4y ago
  Have you tried psychedelics? (This isn't a suggestion. I'm just wondering.)
  - throwaway4bid 4y ago
    I've done psychedelics before, but never with the idea of treating BID, and I've never noticed changes in my BID from psychedelics. I've been waiting for psychedelic psychotherapy to be legalized so I can make a good effort at it with a therapist. as for hypnosis and temporary paralysis, that's interesting as well. I've never been hypnotized, but I'd certainly give it a shot. I have induced numbness temporarily by stretching my spinal cord - I have a spinal defect from my genetic disorder, so bending forward yanks where it's snagged. it's extremely painful, though. I've also never used antipsychotics, though I know they've been tried unsuccessfully in others.
mdrzn 4y ago
"Operation from: self-induced" means.. they self-removed a limb?
- deleted 4y ago
  [deleted]

51 points by freemint 4y ago

freemint 4y ago

Trigger warning: Contains references to voluntary disfigurement and mental health.

political12345 4y ago

recuter 4y ago

3.2. Erotic Component Several, but not all subjects wrote they feel an erotic component as e.g.: “In puberty there came an additional sexual component of about 50% weight.”; “In addition the stump is erotic.”; “When my first wife suffered from an osteo-sarcoma and lost her left leg, my life was perfect. The stump became part of our sexual satisfaction.”; “There is an aesthetic sexual complex, in addition I find the kind of walking very erotic.”; “The otherness, the stump stimulated me. Pretending always resulted in masturbation”

techdragon 4y ago
I’ll be brutally honest, I’m no longer shocked by this sort of thing. I personally don’t get it, but I get how it’s their thing. It took just a few years exposure to the internet of the late 90s and early 00s to open my eyes to the simple psychological truth that the parts of our brain wired up to pass on our genes are some of the most powerful and fascinatingly flexible. The ample documentation on the development of so many different fetishes all following similar phases from expose through formative experiences to focus and on to full blown fetishisation. It’s the sort of thing that made me consider psychology as a career. The human mind is fascinating. When I read accounts like this it’s like watching a remake of a classic movie or a cover of a song, there’s always new bits, but you can see the classic parts like landmarks along a trail.
- recuter 4y ago
  - mercer 4y ago
    It comes across more like mocking something that probably shouldn't be mocked

drummer 4y ago

amin 4y ago

Fascinating. This is about people who have a strong desire to have a their own (perfecly functioning) limb amputated. It concludes: “None of the patients regretted the surgery and a change for the better was seen in almost all areas of life”.

lin83 4y ago
The survey was just 21 people "exclusively contacted in BIID internet forums". How many people who cut off a limb and regretted it would stick around the forum that fed their compulsion to do it?
- freemint 4y ago
  > How many people who cut off a limb and regretted it would stick around the forum that fed their compulsion to do it? Maybe many more then you would think. First of all of there are others with regrets they are most likely also found there. Second to warn others. Thirdly to vent. I agree that the evidence is not the highest quality but i have a hard time imagining a more involved study design that would pass by any ethic board.
  - shanusmagnus 4y ago
    I wonder if it's similar to Amazon ratings, where review distributions seem to skew toward people who either love the thing, or hate it? Presumably there's actual research on this. ... Okay here's something about the J-shaped distribution (mostly 5 stars, some 1 stars, little in between) in reviews [1]. (Edit: here's another, more recent summary [2] of polarity in reviews.) Would we expect the same in something as intimate as amputating pieces of your own body? Hmmm. [1] https://dl.acm.org/doi/abs/10.1145/1562764.1562800 https://dl.acm.org/doi/abs/10.1145/1562764.1562800 [2] https://journals.sagepub.com/doi/abs/10.1177/0022243720941832 https://journals.sagepub.com/doi/abs/10.1177/002224372094183...
    - t-3 4y ago
      Off-topic, but I think the effect is even more pronounced with a binary rating (thumb up/thumb down) vs a 1-5 star rating. I've noticed that really bad or mediocre games will take advantage of the upvote tendency by advertising "90% positive reviews" in an attempt to trick people into thinking they're good.

mgsk 4y ago

There’s a great long-form article about this: https://medium.com/matter/8476df17bddf https://medium.com/matter/8476df17bddf

implements 4y ago
> “The tension that had lined his face was gone. I sensed relief, happiness. David’s leg had plagued him for much of his life. He was free of it, and now he seemed whole.” This type of ‘cure’ for dysmorphia is not something to be celebrated.
- GavinMcG 4y ago
  …why not? Italicizing “not” isn’t much of an argument.
  - implements 4y ago
    His fixation with amputating his leg started at four years old, it has an admitted sexual element, and now he has a permanent life-altering disability - all this for the want of proper psychological treatment.
    - fzeroracer 4y ago
      The study deals with this though. The people that have BIID do go through psychological treatment, seek therapy, medication etc which don't seem to blunt the issue. But ultimately the end result seems to be that they will eventually, one way or another, find a way to get the surgery they desire. I don't know what your solution would be in that scenario other than to criminalize it and even then, there's reports of people doing home made amputations by sitting on rail tracks or whatever else you can think of.
    - bastawhiz 4y ago
      > proper psychological treatment And that is....? There is no psychological treatment that cures BIID and the patient here seems very happy. Is it really better and "proper" to give someone treatment that doesn't solve their problem and leaves them upset?

jasonhansel 4y ago

If I'm reading this right: one of the subjects (#18) is 27 years old now, and had a "friend" perform an amputation on him in 2008...when he was about 13. Yikes.

throwaway89201 4y ago
No, it's a 2014 study. So he was 21.

curious-im 4y ago

Ive read stories from people with BIID and in many ways it's similar to gender dysphoria. The way they feel it, all the things around it, fantasies, dreams, etc. Gender affirming surgeries have success rate of 95%+. No surprise that BIID people have no regrets after all.

poszlem 4y ago

This type of "treatment" is an utter failure and surrender of the fields of psychology, psychiatry, and neurology. The way we used to think was - a sex change surgery used to only be performed because we could not fix the mental problem (patient being unhappy with their body). Now the whole script has flipped and we are talking about how a "transwoman has always been a women" and a "transman has always been a man", which is the newest version of "if theory conflicts with the facts, so much the worse for the facts". Now we actually ponder cutting off people's arms and legs, which is so incredibly bizarre. Not to mention how this opens a huge pandora's box of "recognising" "transabled" people, "transracial" people (see Oli London, Rachel Dolezal, or Martina Big) as, for the lack of a better word - "healthy". As a bisexual dude I suspect a lot of that has to do with the stigma around "conversion therapies", but I worry that term suffered from some really heavy "scope" creep.

deleted 4y ago
[deleted]
JumpCrisscross 4y ago
> type of "treatment" is an utter failure and surrender of the fields of psychology and psychiatry I, too, have an emotional response. But let’s be scientific. If the counselling shows middling success, and the amputation 90%+, why do our feelings, as third parties, overrule the person whose body it is?
- poszlem 4y ago
  I don't say this should be forbidden for consenting adults. I am saying that it should not be sold as "the treatment" but as "we don't have anything better for now, we are working on it, if you can't wait, you can do it".
  - JumpCrisscross 4y ago
    > it should not be sold as "the treatment" but as "we don't have anything better for now, we are working on it, if you can't wait, you can do it" Isn’t this true of all treatments? It’s the best we’ve got. It seems to work. It has downsides. We’re looking for better options. We start with the least invasive option. But we don’t stop midway because something better might one day turn up.

at_a_remove 4y ago

I wonder if these folks are then eligible for disability. This never seems to be addressed in any of the breathless articles around this phenomenon.

bastawhiz 4y ago
It's extremely hard to imagine a meager disability benefit (if any) outweighs the surgery and recover and then living without the limb indefinitely. If you were really in it for the money, would you then hang out on a forum talking about the surgery and not the money? Why would you have a whole arm or leg removed when you could simply have a hand or some fingers removed? Even if they were eligible for the disability, the implication that this isn't a real disorder ignores almost every aspect of its reality.
- ncmncm 4y ago
  Thinking of the healed leper in "Life of Brian".
- at_a_remove 4y ago
  Nowhere did I imply that this isn't a real disorder. Go on, look for it. Additionally, maybe this is a disorder where the current solution is really crappy. I just want to know if they go on disability after. It's a question. Trying to distract from it is ... odd.

nonrandomstring 4y ago

There's a story from Oliver Sacks (Maybe in TMWMHWFAH [1]) where a patient wakes up after a head trauma or stroke and screams at his leg - "Get rid of it! Cut it off". IIRC, the dysphoria was acute or somehow treated, so that might suggest there's a good prognosis with neurological intervention. [1] "The Man Who Mistook Hos Wife For A Hat" https://en.wikipedia.org/wiki/The_Man_Who_Mistook_His_Wife_for_a_Hat https://en.wikipedia.org/wiki/The_Man_Who_Mistook_His_Wife_f...

throwaway4bid 4y ago
That actually wasn't BID, it was another condition called somatoparaphrenia. They might be linked, but no treatment short of surgery for BID has ever demonstrated efficacy.

bradwood 4y ago

Since when was "wannabes" a medical/academic term?

throwaway4bid 4y ago
"wannabe" was the in-group term used inside the BID community, back in the '00s. It's fallen out of favor as a pejorative lately.

throwaway4bid 4y ago

I have this condition (Body Integrity Dysphoria), along with a fairly intense physical disability that I did not choose (genetic disorder), and along with being trans, so I can answer any questions you'd like to ask. I became aware of my BID at age 6. I specifically want paralysis, which is ironic now that I'm showing neurological symptoms from the genetic condition. There is a sexual component for me, but it's not my main motivation, and the sexual aspect has reduced as the pure dysphoria intensifies. The physical dysphoria is fairly similar to the gender dysphoria I've experienced, but the social aspects, identity and tradeoffs are completely different. I've tried antidepressants, therapy including traditional psychoanalysis, IFS, CBT, ACT, etc. Nothing has put a dent in the dysphoria, only helped me move on despite it. I know two people who've successfully achieved their disability, and they're much happier now. I would if I were not so terrified of the risks of DIY.

shrubble 4y ago
Was treatment with pimozide ever attempted?
freemint 4y ago
I am aware that hypnosis can be used to induce temporary paralysis in targeted body regions. Have you experimented with that and does it offer a temporary reprieve from at least one of your sources of disphoria?
krispyfi 4y ago
Have you tried psychedelics? (This isn't a suggestion. I'm just wondering.)
- throwaway4bid 4y ago
  I've done psychedelics before, but never with the idea of treating BID, and I've never noticed changes in my BID from psychedelics. I've been waiting for psychedelic psychotherapy to be legalized so I can make a good effort at it with a therapist. as for hypnosis and temporary paralysis, that's interesting as well. I've never been hypnotized, but I'd certainly give it a shot. I have induced numbness temporarily by stretching my spinal cord - I have a spinal defect from my genetic disorder, so bending forward yanks where it's snagged. it's extremely painful, though. I've also never used antipsychotics, though I know they've been tried unsuccessfully in others.

mdrzn 4y ago

"Operation from: self-induced" means.. they self-removed a limb?

deleted 4y ago
[deleted]