Body integrity dysphoria

Body integrity dysphoria (BID, also referred to as body integrity identity disorder, amputee identity disorder and xenomelia, formerly called apotemnophilia) is a mental disorder characterized by a desire to have a sensory or physical disability or having discomfort with being able-bodied beginning in early adolescence and resulting in harmful consequences.[1] BID appears to be related to somatoparaphrenia.[2] People with this condition may refer to themselves as "transabled".[3][4][5]

"Self-amputation" redirects here. See also Autotomy and Amputation § Self-amputation.

Body integrity dysphoria
Other namesBody integrity identity disorder
SpecialtyPsychiatry, Clinical Psychology
SymptomsDesire to have a sensory or physical disability, discomfort with being able-bodied
ComplicationsSelf-amputation
Usual onset8–12 years old
Risk factorsKnowing an amputee as a child
TreatmentCognitive behavioral therapy
MedicationAntidepressants

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.[2] The person sometimes has a sense of sexual arousal connected with the desire for loss of a limb, movement, or sense.[2]

Some act out their desires, by pretending they are amputees using prostheses and other tools to ease their desire to be one, by using a wheelchair or by pretending they are blind or deaf. 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, if any, cases of self-amputation.[6][7] There has been, however, at least one apparently well-documented example.[8]

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.[7] 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.[7] 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.[7]

Causes

As of 2014 the cause was not clear and was a subject of ongoing research.[9] 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.[10]

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 a close relationships because it would make it difficult to pretend) or by attempts to actually become disabled have resulted in the person putting his or her 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.[11]

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.[2][9] It has been included in the ICD-11, which reached a stable version in June 2018, as 'Body integrity dysphoria' with code 6C21.[1]

Treatment

There is no evidence-based treatment for BID; there are reports of the use of cognitive behavioral therapy and antidepressants.[7]

The ethics of surgically amputating the undesired limb of a person with BID are difficult and controversial.[6][12][13]

Prognosis

Outcomes of treated and untreated BID are not known; there are numerous case reports that amputation permanently resolves the desire in affected individuals.[7][14]

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.[15] 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.[15]

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.[9] 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.[2][15] 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.[15] This work did not completely explain the condition, and psychosexual research has been ongoing as well.[15][16][17]

See also

References
  1. "ICD-11 – Mortality and Morbidity Statistics". icd.who.int. Archived from the original on 1 August 2018. Retrieved 6 July 2018.
  2. Brugger, P; Lenggenhager, B (December 2014). "The bodily self and its disorders: neurological, psychological and social aspects". Current Opinion in Neurology. 27 (6): 644–52. doi:10.1097/WCO.0000000000000151. PMID 25333602. S2CID 3335803. Archived from the original on 14 January 2018. Retrieved 13 January 2018.
  3. Baril, Alexandre; Trevenen, Kathryn (14 April 2016). "Transabled women lost in translation? An introduction to: '"Extreme" transformations: (Re)Thinking solidarities among social movements through the case of voluntary disability acquisition'". Medicine Anthropology Theory. 3 (1): 136. doi:10.17157/mat.3.1.388.
  4. Shad (11 June 2015). "Desiring disability: What does it mean to be transabled?". CBC Radio. Archived from the original on 11 June 2015. Retrieved 11 June 2015.
  5. Davis, Jenny L. (1 June 2014). "Morality Work among the Transabled". Deviant Behavior. 35 (6): 433–455. doi:10.1080/01639625.2014.855103. ISSN 0163-9625. S2CID 144412724.
  6. Levy, Neil (2007). Neuroethics — Challenges for the 21st Century. Cambridge University Press. pp. 3–5. ISBN 978-0-521-68726-3.
  7. Bou Khalil, R; Richa, S (December 2012). "Apotemnophilia or body integrity identity disorder: a case report review". The International Journal of Lower Extremity Wounds. 11 (4): 313–9. doi:10.1177/1534734612464714. PMID 23089967. S2CID 30991969.
  8. "Cricket historian, writer, surgeon, spy: the mad world of Major Rowland Bowen". the Guardian. 21 July 2017. Retrieved 29 December 2021.
  9. Sedda, A; Bottini, G (2014). "Apotemnophilia, body integrity identity disorder or xenomelia? Psychiatric and neurologic etiologies face each other". Neuropsychiatric Disease and Treatment. 10: 1255–65. doi:10.2147/NDT.S53385. PMC 4094630. PMID 25045269.
  10. Longo, Matthew (June 2020). "Body Image: Neural Basis of 'Negative' Phantom Limbs". Current Biology. 30 (11): 2191–2195. doi:10.1016/j.cub.2020.04.006. PMID 32516613. S2CID 219544915. Retrieved 23 December 2020.
  11. "ICD-11 for Mortality and Morbidity Statistics". icd.who.int. Retrieved 19 December 2021.
  12. Costandi, Mo (30 May 2012). "The science and ethics of voluntary amputation | Mo Costandi". The Guardian. Archived from the original on 2 January 2018. Retrieved 13 January 2018.
  13. Dua, A (February 2010). "Apotemnophilia: ethical considerations of amputating a healthy limb". Journal of Medical Ethics. 36 (2): 75–8. doi:10.1136/jme.2009.031070. PMID 20133399. S2CID 23988376.
  14. Blom, RM; Hennekam, RC; Denys, D (2012). "Body integrity identity disorder". PLOS ONE. 7 (4): e34702. Bibcode:2012PLoSO...734702B. doi:10.1371/journal.pone.0034702. PMC 3326051. PMID 22514657.
  15. De Preester, H (May 2013). "Merleau-Ponty's sexual schema and the sexual component of body integrity identity disorder". Medicine, Health Care and Philosophy. 16 (2): 171–84. doi:10.1007/s11019-011-9367-3. PMID 22139385. S2CID 144072976.
  16. Lawrence, A. A. (2006). "Clinical and theoretical parallels between desire for limb amputation and gender identity disorder" (PDF). Archives of Sexual Behavior. 35 (3): 263–278. doi:10.1007/s10508-006-9026-6. PMID 16799838. S2CID 17528273.
  17. Lawrence, A. A. (2009). "Erotic target location errors: An underappreciated paraphilic dimension". Journal of Sex Research. 46 (2–3): 194–215. doi:10.1080/00224490902747727. PMID 19308843. S2CID 10105602.

Further reading
  • Davis, Jenny L. (2012). "Narrative Construction of a Ruptured Self: Stories of Transability on Transabled.org". Sociological Perspectives. 55 (2): 319–340. doi:10.1525/sop.2012.55.2.319. JSTOR 10.1525/sop.2012.55.2.319. S2CID 145521213.
  • First, MB; Fisher, CE (2012). "Body integrity identity disorder: the persistent desire to acquire a physical disability". Psychopathology. 45 (1): 3–14. doi:10.1159/000330503. PMID 22123511. S2CID 19615762.
  • Furth, Gregg M.; Smith, Robert (2000). Apotemnophilia : information, questions, answers, and recommendations about self-demand amputation (Rev. (05/15/2002). ed.). Bloomington, IN: 1stBooks. ISBN 978-1588203908.
  • Sacks, Oliver W. (1998). A Leg To Stand On. Touchstone Books. ISBN 978-0-684-85395-6.
  • Stirn, A.; Thiel, A.; Oddo, S. (2009). Body Integrity Identity Disorder: Psychological, Neurobiological, Ethical and Legal Aspects. Pabst Science Publishers. ISBN 978-3-89967-592-4.
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