Body integrity dysphoria
{{short description|Mental disorder characterized by a desire to be physically disabled}}
{{hatnote|"Self-amputation" redirects here. See also Autotomy and {{Section link|Amputation|Self-amputation}}.}}
{{Redirect|BIID|the organisation|British Institute of Interior Design}}
{{Use dmy dates|date=March 2020}}
{{Infobox medical condition (new)
| name = Body integrity dysphoria
| image =
| image_size =
| synonyms = Body integrity identity disorder
| caption =
| pronounce =
| specialty = Psychiatry, Clinical Psychology
| symptoms = Desire to have a sensory or physical disability, discomfort with being able-bodied
| complications = Self-amputation
| onset = 8–12 years old
| duration =
| types =
| causes =
| risks = Knowing an amputee as a child
| diagnosis =
| differential =
| prevention =
| treatment = Cognitive behavioral therapy
| medication = Antidepressants
| prognosis =
| frequency =
| deaths =
}}
Body integrity dysphoria (BID), also referred to as body integrity identity disorder (BIID), amputee identity disorder or xenomelia, and formerly called apotemnophilia, is a rare mental disorder characterized by a desire to have a sensory or physical disability or feeling discomfort with being able-bodied, beginning in early adolescence and resulting in harmful consequences.{{Cite web|url=https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/256572629|title=ICD-11 – Mortality and Morbidity Statistics|website=icd.who.int|language=en|access-date=2018-07-06|archive-url=https://archive.today/20180801205234/https://icd.who.int/browse11/l-m/en%23/http://id.who.int/icd/entity/294762853#/http://id.who.int/icd/entity/256572629|archive-date=1 August 2018|url-status=live|df=dmy-all}} BID appears to be related to somatoparaphrenia.{{cite journal|last1=Brugger|first1=P|last2=Lenggenhager|first2=B|title=The bodily self and its disorders: neurological, psychological and social aspects.|journal=Current Opinion in Neurology|date=December 2014|volume=27|issue=6|pages=644–52|doi=10.1097/WCO.0000000000000151|pmid=25333602|s2cid=3335803|url=http://www.zora.uzh.ch/id/eprint/100466/|access-date=13 January 2018|archive-url=https://web.archive.org/web/20180114073735/http://www.zora.uzh.ch/id/eprint/100466/|archive-date=14 January 2018|url-status=live|df=dmy-all}} People with this condition may refer to themselves as transabled,{{cite journal|last1=Baril|first1=Alexandre|last2=Trevenen|first2=Kathryn|title=Transabled women lost in translation? An introduction to: '"Extreme" transformations: (Re)Thinking solidarities among social movements through the case of voluntary disability acquisition'|journal=Medicine Anthropology Theory|date=14 April 2016|volume=3|issue=1|pages=136|doi=10.17157/mat.3.1.388|doi-access=free}} {{open access}}{{cite web|last=Shad|title=Desiring disability: What does it mean to be transabled?|url=http://www.cbc.ca/radio/q/schedule-for-wednesday-june-10-2015-1.3107352/desiring-disability-what-does-it-mean-to-be-transabled-1.3107353|publisher=CBC Radio|access-date=11 June 2015|date=11 June 2015|archive-url=https://web.archive.org/web/20150611130438/http://www.cbc.ca/radio/q/schedule-for-wednesday-june-10-2015-1.3107352/desiring-disability-what-does-it-mean-to-be-transabled-1.3107353|archive-date=11 June 2015|url-status=live|df=dmy-all}}{{cite journal|last1=Davis|first1=Jenny L.|title=Morality Work among the Transabled|journal=Deviant Behavior|date=1 June 2014|volume=35|issue=6|pages=433–455|doi=10.1080/01639625.2014.855103|s2cid=144412724|issn=0163-9625}} but the term is controversial.
Signs and symptoms
BID is a rare, infrequently studied condition in which there is a mismatch between the mental body image and the physical body, characterized by an intense desire for amputation or paralysis of a limb, usually a leg, or to become blind or deaf. A 2017 survey by researchers at the University of Amsterdam of 80 individuals with BID found that 71.3% experienced sexual arousal related to their condition, with this group more likely to be male, religious, homosexual, and to have pursued self-amputation compared to those without such arousal.{{Cite journal |last1=Blom |first1=Rianne M. |last2=van der Wal |first2=Sija J. |last3=Vulink |first3=Nienke C. |last4=Denys |first4=Damiaan |title=Role of Sexuality in Body Integrity Identity Disorder (BIID): A Cross-Sectional Internet-Based Survey Study |journal=The Journal of Sexual Medicine |volume=14 |issue=8 |date=2017-08-01 |pages=1028–1035 |issn=1743-6095 |doi=10.1016/j.jsxm.2017.06.004 |pmid=28781216 |url=https://www.sciencedirect.com/science/article/pii/S1743609517312894}}
Some become somewhat more comfortable with their own bodies by using prostheses and other tools to help their dysphoria, such as using a wheelchair or by blocking their vision or hearing. Some people with BID have reported to the media or by interview with researchers that they have resorted to self-amputation of a "superfluous" limb by, for example, allowing a train to run over it or otherwise damaging it so severely that surgeons will have to amputate it. However, the medical literature records few cases of self-amputation{{cite book |author=Levy, Neil |title=Neuroethics — Challenges for the 21st Century |publisher=Cambridge University Press |pages=[https://books.google.com/books?id=GIIj-hNhZrcC&pg=PA3 3–5] |year=2007 |isbn=978-0-521-68726-3}} apart from that of cricket historian Rowland Bowen, who self-amputated one of his legs below the knee in 1968.{{Cite web|date=2017-07-21|title=Cricket historian, writer, surgeon, spy: the mad world of Major Rowland Bowen|url=http://www.theguardian.com/sport/2017/jul/22/cricket-historian-writer-surgeon-spy-the-mad-world-of-major-rowland-bowen|access-date=2021-12-29|website=the Guardian|language=en|archive-date=29 December 2021|archive-url=https://web.archive.org/web/20211229194259/https://www.theguardian.com/sport/2017/jul/22/cricket-historian-writer-surgeon-spy-the-mad-world-of-major-rowland-bowen|url-status=live}}
To the extent that generalizations can be made, people with BID appear to start to wish for amputation when they are young, between eight and twelve years of age, and often knew a person with an amputated limb when they were children; however, people with BID tend to seek treatment only when they are much older. People with BID seem to be predominantly male, and while there is no evidence that sexual preference is relevant, there does seem to be a correlation with BID and a person having a paraphilia; there appears to be a weak correlation with personality disorders. Family psychiatric history does not appear to be relevant, and there does not appear to be any strong correlation with the site of the limb or limbs that the person wishes they did not have, nor with any past trauma to the undesired limb.
Causes
As of 2014 the cause was not clear and was a subject of ongoing research.
However a small sample of people with body integrity dysphoria connected to their left leg have had MRI scans that showed less gray matter in the right side of their superior parietal lobule. The amount of gray matter missing was correlated to the strength of the patients' desire to remove their leg.{{cite journal |last1=Longo |first1=Matthew |title=Body Image: Neural Basis of 'Negative' Phantom Limbs |journal=Current Biology |date=June 2020 |volume=30 |issue=11 |pages=2191–2195 |doi=10.1016/j.cub.2020.04.006 |pmid=32516613 |s2cid=219544915 |doi-access=free }}
Diagnosis
In the ICD-11, BID is included under the category "Disorders of bodily distress or bodily experience". It is "characterised by an intense and persistent desire to become physically disabled in a significant way (e.g. major limb amputee, paraplegic, blind), with onset by early adolescence accompanied by persistent discomfort, or intense feelings of inappropriateness concerning current non-disabled body configuration. The desire to become physically disabled results in harmful consequences, as manifested by either the preoccupation with the desire (including time spent pretending to be disabled) significantly interfering with productivity, with leisure activities, or with social functioning (e.g. person is unwilling to have close relationships because it would make it difficult to pretend) or by attempts to actually become disabled have resulted in the person putting their health or life in significant jeopardy. The disturbance is not better accounted for by another mental, behavioural or neurodevelopmental disorder, by a Disease of the Nervous System or by another medical condition, or by Malingering." A diagnosis of gender dysphoria must be ruled out.{{Cite web|title=ICD-11 for Mortality and Morbidity Statistics|url=https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/256572629|access-date=2021-12-19|website=icd.who.int|archive-date=1 August 2018|archive-url=https://archive.today/20180801205234/https://icd.who.int/browse11/l-m/en%23/http://id.who.int/icd/entity/294762853#/http://id.who.int/icd/entity/256572629|url-status=live}}
=Classification=
Prior to the release of the ICD-11, the diagnosis of BID as a mental disorder was controversial. There was debate about including it in the DSM-5, and it was not included; it was also not included in the ICD-10. It has been included in the ICD-11, which reached a stable version in June 2018, as 'Body integrity dysphoria' with code 6C21.
Treatment & Prognosis
There is no evidence-based treatment for BID; there are reports of the use of cognitive behavioral therapy and antidepressants.{{cite journal|last1=Bou Khalil|first1=R|last2=Richa|first2=S|title=Apotemnophilia or body integrity identity disorder: a case report review.|journal=The International Journal of Lower Extremity Wounds|date=December 2012|volume=11|issue=4|pages=313–9|doi=10.1177/1534734612464714|pmid=23089967|s2cid=30991969}}
The ethics of surgically amputating the undesired limb of a person with BID are difficult and controversial.{{cite news|last1=Costandi|first1=Mo|title=The science and ethics of voluntary amputation {{!}} Mo Costandi|url=https://www.theguardian.com/science/neurophilosophy/2012/may/30/1|work=The Guardian|date=30 May 2012|access-date=13 January 2018|archive-url=https://web.archive.org/web/20180102160903/https://www.theguardian.com/science/neurophilosophy/2012/may/30/1|archive-date=2 January 2018|url-status=live|df=dmy-all}}{{cite journal|last1=Dua|first1=A|title=Apotemnophilia: ethical considerations of amputating a healthy limb.|journal=Journal of Medical Ethics|date=February 2010|volume=36|issue=2|pages=75–8|doi=10.1136/jme.2009.031070|pmid=20133399|s2cid=23988376}}
There are numerous case reports that amputation permanently resolves the desire in affected individuals.{{cite journal |last1=Blom |first1=RM |last2=Hennekam |first2=RC |last3=Denys |first3=D |title=Body integrity identity disorder |journal=PLOS ONE |date=2012 |volume=7 |issue=4 |pages=e34702 |doi=10.1371/journal.pone.0034702 |pmid=22514657|pmc=3326051 |bibcode=2012PLoSO...734702B |doi-access=free }}
It is noteworthy that a 2024 case report described a patient diagnosed with BID whose distress persisted despite antidepressant treatment and cognitive-behavioral therapy; elective amputation of two fingers resolved all symptoms, with immediate relief and improved functionality.{{Cite journal |last=Nadeau |first=Nadia |title=Successful treatment of body integrity dysphoria with amputation: A case report |journal=Clinical Case Reports |volume=12 |issue=4 |pages=e8720 |year=2024 |doi=10.1002/ccr3.8720 |issn=2050-0904 |url=https://doi.org/10.1002/ccr3.8720|pmc=10966911 }} A one-year follow-up confirmed sustained remission, with the patient reporting enhanced quality of life, full social and occupational adaptation, and no regrets.{{cite journal
| last = Nadeau | first = Nadia | title = Successful treatment of body integrity dysphoria with amputation: A case report | journal = Clinical Case Reports | volume = 12
| issue = 4 | year = 2024 | page = e8720 | doi = 10.1002/ccr3.8720}}
Longterm outcomes of treated and untreated BID are not known.
History
Apotemnophilia was first described in a 1977 article by psychologists Gregg Furth and John Money as primarily sexually oriented. In 1986 Money described a similar condition he called acrotomophilia; namely, sexual arousal in response to a partner's amputation. Publications before 2004 were generally case studies. The condition received public attention in the late 1990s after Scottish surgeon Robert Smith amputated limbs of two otherwise healthy people who were desperate to have this done.{{cite journal|last1=De Preester|first1=H|title=Merleau-Ponty's sexual schema and the sexual component of body integrity identity disorder.|journal=Medicine, Health Care and Philosophy|date=May 2013|volume=16|issue=2|pages=171–84|doi=10.1007/s11019-011-9367-3|pmid=22139385|s2cid=144072976}}
In 2004 Michael First published the first clinical research in which he surveyed fifty-two people with the condition, a quarter of whom had undergone an amputation. Based on that work, First coined the term "body integrity identity disorder" to express what he saw as more of an identity disorder than a paraphilia.{{cite journal|last1=Sedda|first1=A|last2=Bottini|first2=G|title=Apotemnophilia, body integrity identity disorder or xenomelia? Psychiatric and neurologic etiologies face each other.|journal=Neuropsychiatric Disease and Treatment|date=2014|volume=10|pages=1255–65|doi=10.2147/NDT.S53385|pmid=25045269|pmc=4094630|doi-access=free}}{{Cite journal |last=First |first=Michael B. |date=June 2005 |title=Desire for amputation of a limb: paraphilia, psychosis, or a new type of identity disorder |url=https://www.cambridge.org/core/journals/psychological-medicine/article/abs/desire-for-amputation-of-a-limb-paraphilia-psychosis-or-a-new-type-of-identity-disorder/3E6CA6332CB01EFD75E72CEB393C6FAE |journal=Psychological Medicine |language=en |volume=35 |issue=6 |pages=919–928 |doi=10.1017/S0033291704003320 |issn=1469-8978}} After First's work, efforts to study BID as a neurological condition looked for possible causes in the brains of people with BID using neuroimaging and other techniques. Research provisionally found that people with BID were more likely to want removal of a left limb than right, consistent with damage to the right parietal lobe; in addition, skin conductance response is significantly different above and below the line of desired amputation, and the line of desired amputation remains stable over time, with the desire often beginning in early childhood. This work did not completely explain the condition, and psychosexual research has been ongoing as well.{{cite journal |doi=10.1007/s10508-006-9026-6 |last1=Lawrence |first1=A. A. |year=2006 |title=Clinical and theoretical parallels between desire for limb amputation and gender identity disorder |url=http://ai.eecs.umich.edu/people/conway/TS/Bailey/BIID/Lawrence%20article%20-%20June%202006.pdf |journal=Archives of Sexual Behavior |volume=35 |issue=3 |pages=263–278 |pmid=16799838 |s2cid=17528273 |access-date=24 September 2019 |archive-date=9 October 2018 |archive-url=https://web.archive.org/web/20181009211134/http://ai.eecs.umich.edu/people/conway/TS/Bailey/BIID/Lawrence%20article%20-%20June%202006.pdf |url-status=live }}{{cite journal |last1=Lawrence |first1=A. A. |year=2009 |title=Erotic target location errors: An underappreciated paraphilic dimension |journal=Journal of Sex Research |volume=46 |issue=2–3| pages=194–215 |pmid=19308843 |doi=10.1080/00224490902747727|s2cid=10105602 }}
Society and Culture
BID has been portrayed in various media formats. Representations in literature, film, and television. The following sections describe notable appearances of BID across different media.
=Literature=
Fictional literature specifically focusing on BID is rare. Career of Evil by Robert Galbraith (pseudonym of J.K. Rowling) references BID{{cite news |last=Walters |first=Lucy |title=Career of Evil by Robert Galbraith, review: 'superb' |url=https://www.telegraph.co.uk/books/what-to-read/career-of-evil-robert-galbraith-review/ |work=The Telegraph |date=20 October 2015 |access-date=22 April 2025}}{{cite news |last=Moore |first=Michael |title=J.K. Rowling shines in new detective novel ‘Career of Evil’ |url=https://www.chicagotribune.com/2015/10/19/jk-rowling-shines-in-new-detective-novel-career-of-evil/ |work=Chicago Tribune |date=19 October 2015 |access-date=22 April 2025}}. Headcheese (2018) by Jess Hagemann includes themes related to BID and voluntary amputation.{{cite book |last=Hagemann |first=Jess |title=Headcheese |publisher=Indy Pub |year=2022 |oclc=1453425891 |url=https://www.worldcat.org/oclc/1453425891}}{{cite web |last=Guillen |first=Tiffany |title=PopHorror Interviews ‘Headcheese’ Author Jess Hagemann |url=https://pophorror.com/pophorror-interviews-headcheese-author-jess-hagemann/ |website=PopHorror |date=2019-02-02 |access-date=2025-04-22}}
=Film=
The documentary Whole, directed by Melody Gilbert, follows individuals with BID, offering insight into their coping mechanisms and societal reactions. The comedy film Armless, directed by Habib Azar, follows John, a man with BID who leaves his wife and travels to New York City in search of a doctor willing to amputate his arms.
=Television=
BID has been featured in fictional series on television. CSI: NY (Season 1, Episode 6, "Outside Man", 2004) featured an investigation about the death of a man who had his physically healthy leg amputated. Nip/Tuck (Season 3, Episode 7, "Ben White", 2005) included a character with BID who requests the amputation of his healthy leg. Casualty (Season 22, Episode 21, 2008) portrayed a woman who intentionally had her leg amputated by a train and was diagnosed with BID. Similarly, Mental (Season 1, Episode 12, "Life and Limb," 2009) depicts a factory worker who chopped off his fingers and refused reattachment surgery.
See also
References
{{reflist}}
Further reading
- {{cite journal |last=Davis|first=Jenny L.|date=2012|title=Narrative Construction of a Ruptured Self: Stories of Transability on Transabled.org|journal=Sociological Perspectives|volume=55|number=2|pages=319–340|jstor=10.1525/sop.2012.55.2.319|doi=10.1525/sop.2012.55.2.319|s2cid=145521213}}
- {{cite journal |last1=First|first1=MB|last2=Fisher|first2=CE|title=Body integrity identity disorder: the persistent desire to acquire a physical disability.|journal=Psychopathology|date=2012|volume=45|issue=1|pages=3–14|doi=10.1159/000330503|pmid=22123511|s2cid=19615762}}
- {{cite book|last1=Furth|first1=Gregg M.|last2=Smith|first2=Robert|title=Apotemnophilia : information, questions, answers, and recommendations about self-demand amputation|date=2000|publisher=1stBooks|location=Bloomington, IN|isbn=978-1588203908|edition=Rev. (05/15/2002).}}
- {{cite book
| last = Loriga
| first = Leandro
| title = Body Integrity Dysphoria and the Ethical Dilemma of On-Demand Amputation
| publisher = Springer
| year = 2025
| isbn = 978-3-031-82443-2
| doi = 10.1007/978-3-031-82443-2
| url = https://link.springer.com/book/10.1007/978-3-031-82443-2
}}
- {{cite book |author=Sacks, Oliver W. | author-link = Oliver Sacks |title=A Leg To Stand On |publisher=Touchstone Books |year=1998 |isbn=978-0-684-85395-6 }}
- {{cite book |author1=Stirn, A. |author2=Thiel, A. |author3=Oddo, S. |title=Body Integrity Identity Disorder: Psychological, Neurobiological, Ethical and Legal Aspects |publisher=Pabst Science Publishers |year=2009 |isbn=978-3-89967-592-4 }}
External links
- [http://www.bbc.co.uk/science/horizon/1999/obsession.shtml Complete Obsession], a Horizon episode on BIID ([http://www.bbc.co.uk/science/horizon/1999/obsession_script.shtml transcript])
- https://www.okwhatever.org/topics/selfie/biid
- https://www.bodyintegritydysphoria.com/