Body integrity dysphoria

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Body integrity dysphoria
Other namesBody integrity identity disorder
Specialty Psychiatry, Clinical Psychology
Symptoms Desire to have a sensory or physical disability, discomfort with being able-bodied
Complications Self-amputation
Usual onset8–12 years old
Risk factors Knowing an amputee as a child
Treatment Cognitive behavioral therapy
Medication Antidepressants

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. [1] BID appears to be related to somatoparaphrenia. [2] People with this condition may refer to themselves as transabled. [3] [4] [5]

Contents

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 become somewhat more comfortable with their own bodies by pretending they are amputees using prostheses and other tools to help their dysphoria, by 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 [6] [7] apart from that of cricket historian Rowland Bowen, who self-amputated one of his legs below the knee in 1968. [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 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

Related Research Articles

<span class="mw-page-title-main">Amputation</span> Medical procedure that removes a part of the body

Amputation is the removal of a limb by trauma, medical illness, or surgery. As a surgical measure, it is used to control pain or a disease process in the affected limb, such as malignancy or gangrene. In some cases, it is carried out on individuals as a preventive surgery for such problems. A special case is that of congenital amputation, a congenital disorder, where fetal limbs have been cut off by constrictive bands. In some countries, judicial amputation is currently used to punish people who commit crimes. Amputation has also been used as a tactic in war and acts of terrorism; it may also occur as a war injury. In some cultures and religions, minor amputations or mutilations are considered a ritual accomplishment. When done by a person, the person executing the amputation is an amputator. The oldest evidence of this practice comes from a skeleton found buried in Liang Tebo cave, East Kalimantan, Indonesian Borneo dating back to at least 31,000 years ago, where it was done when the amputee was a young child.

Gender dysphoria (GD) is the distress a person experiences due to a mismatch between their gender identity—their personal sense of their own gender—and their sex assigned at birth. The term replaced the previous diagnostic label of gender identity disorder (GID) in 2013 with the release of the diagnostic manual DSM-5. The condition was renamed to remove the stigma associated with the term disorder. The International Classification of Diseases uses the term gender incongruence instead of gender dysphoria, defined as a marked and persistent mismatch between gender identity and assigned gender, regardless of distress or impairment.

In medicine, a prosthesis, or a prosthetic implant, is an artificial device that replaces a missing body part, which may be lost through physical trauma, disease, or a condition present at birth. Prostheses are intended to restore the normal functions of the missing body part. A person who has undergone an amputation is sometimes referred to as an amputee, however, this term may be offensive. Rehabilitation for someone with an amputation is primarily coordinated by a physiatrist as part of an inter-disciplinary team consisting of physiatrists, prosthetists, nurses, physical therapists, and occupational therapists. Prostheses can be created by hand or with computer-aided design (CAD), a software interface that helps creators design and analyze the creation with computer-generated 2-D and 3-D graphics as well as analysis and optimization tools.

<span class="mw-page-title-main">Sexual fetishism</span> Sexual arousal a person receives from an object or situation

Sexual fetishism or erotic fetishism is a sexual fixation on a nonliving object or body part. The object of interest is called the fetish; the person who has a fetish for that object is a fetishist. A sexual fetish may be regarded as a mental disorder if it causes significant psychosocial distress for the person or has detrimental effects on important areas of their life. Sexual arousal from a particular body part can be further classified as partialism.

<span class="mw-page-title-main">V. S. Ramachandran</span> Indian-American neuroscientist

Vilayanur Subramanian Ramachandran is an Indian-American neuroscientist. He is known for his wide-ranging experiments and theories in behavioral neurology, including the invention of the mirror box. Ramachandran is a distinguished professor in UCSD's Department of Psychology, where he is the director of the Center for Brain and Cognition.

Dysphoria is a profound state of unease or dissatisfaction. It is the semantic opposite of euphoria. In a psychiatric context, dysphoria may accompany depression, anxiety, or agitation.

Acrotomophilia is a paraphilia in which an individual expresses strong sexual interest in amputees. It is a counterpart to apotemnophilia, the desire to be an amputee.

Whole is a documentary about people with body integrity identity disorder, a rare condition which causes a desire to become an amputee. It first was broadcast on the Sundance Channel in 2004.

Attraction to disability is a sexualised interest in the appearance, sensation and experience of disability. It may extend from normal human sexuality into a type of sexual fetishism. Sexologically, the pathological end of the attraction tends to be classified as a paraphilia. Other researchers have approached it as a form of identity disorder. The most common interests are towards amputations, prosthesis, and crutches. As a sexual fetish, attraction to disability is known as devotism, and those with the fetish are known as devotees.

Gender dysphoria in children (GD), also known as gender incongruence of childhood, is a formal diagnosis for distress caused by incongruence between assigned sex and gender identity in some pre-pubescent transgender and gender diverse children.

A disability pretender is a subculture term meaning a person who behaves as if they were disabled. It may be classified as a type of factitious disorder or as a medical fetishism.

<span class="mw-page-title-main">Supernumerary body part</span> Growth of an additional part of the body and a deviation from the body plan

Supernumerary body parts are most commonly a congenital disorder involving the growth of an additional part of the body and a deviation from the body plan. Body parts may be easily visible or hidden away, such as internal organs.

<span class="mw-page-title-main">Sexuality and disability</span>

Sexuality and disability is a topic regarding the sexual behavior and practices of people with disabilities. Like the general population, these individuals exhibit a wide range of sexual desires and adopt diverse methods of expressing their sexuality. It is a widespread concern, however, that many people with disabilities do not receive comprehensive sex education, which could otherwise positively contribute to their sexual lives. This stems from the idea that people with disabilities are asexual in nature and are not sexually active. Although some people with disabilities identify as asexual, generalizing this label to all such individuals is a misconception. Many people with disabilities lack rights and privileges that would enable them to have intimacy and relationships. When it comes to sexuality and disability there is a sexual discourse that surrounds it. The intersection of sexuality and disability is often associated with victimization, abuse, and purity, although having a disability does not change someone's sexuality, nor does it change their desire to express it.

Supernumerary phantom limb is a condition where the affected individual believes they are receiving sensory information from limbs of the body that do not actually exist, and never have existed, in contradistinction to phantom limbs, which appear after an individual has had a limb removed from the body and still receives input from it.

Erotic target location error (ETLE) is a hypothesized dimension for paraphilias, defined by having a sexual preference or strong sexual interest in features that are somewhere other than on one's sexual partners. When one's sexual arousal is based on imagining oneself in another physical form the erotic target is said to be one's self, or erotic target identity inversion (ETII).

Amputee sports classification is a disability specific sport classification used for disability sports to facilitate fair competition among people with different types of amputations. This classification was set up by International Sports Organization for the Disabled (ISOD), and is currently managed by IWAS who ISOD merged with in 2005. Several sports have sport specific governing bodies managing classification for amputee sportspeople.

<span class="mw-page-title-main">Gait deviations</span> Medical condition

Gait deviations are nominally referred to as any variation of standard human gait, typically manifesting as a coping mechanism in response to an anatomical impairment. Lower-limb amputees are unable to maintain the characteristic walking patterns of an able-bodied individual due to the removal of some portion of the impaired leg. Without the anatomical structure and neuromechanical control of the removed leg segment, amputees must use alternative compensatory strategies to walk efficiently. Prosthetic limbs provide support to the user and more advanced models attempt to mimic the function of the missing anatomy, including biomechanically controlled ankle and knee joints. However, amputees still display quantifiable differences in many measures of ambulation when compared to able-bodied individuals. Several common observations are whole-body movements, slower and wider steps, shorter strides, and increased sway.

Paul McGeoch is an American neuroscientist, known primarily for his work in apotemnophilia and neuro-based weight loss.

References

  1. 1 2 "ICD-11 – Mortality and Morbidity Statistics". icd.who.int. Archived from the original on 1 August 2018. Retrieved 6 July 2018.
  2. 1 2 3 4 5 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 . Open Access logo PLoS transparent.svg
  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. 1 2 Levy, Neil (2007). Neuroethics — Challenges for the 21st Century. Cambridge University Press. pp.  3–5. ISBN   978-0-521-68726-3.
  7. 1 2 3 4 5 6 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. Archived from the original on 29 December 2021. Retrieved 29 December 2021.
  9. 1 2 3 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.
  11. ↑ "ICD-11 for Mortality and Morbidity Statistics". icd.who.int. Archived from the original on 1 August 2018. 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. 1 2 3 4 5 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. Archived (PDF) from the original on 9 October 2018. Retrieved 24 September 2019.
  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.

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