Is gender dysphoria a Culture Bound Syndrome?

The social environment plays a large role in how people interpret physical and mental experiences. Culture bound syndromes, such as ‘resignation syndrome’ in the children of asylum seekers in Sweden (O’Sullivan, 2021a), are frequently psychosomatic. This means that psychic distress is experienced in the body, as well as in the mind. The symptoms are real (in other words, the patient is not making up their ailments or putting them on); they can frequently be disabling and can significantly affect day-to-day functioning. Physical symptoms experienced in these conditions are not due to disease as such, but instead are often understood to have a social/psychological cause. Sometimes the patient has clearly experienced trauma or an event that has led to the symptoms, but at other times it is not straightforward or even possible to ascertain an exact trigger or cause. Understandably, it can be very hard, if not impossible, for patients to accept a psychological explanation or ‘formulation’ for their difficulties. They can feel ‘dismissed’ or that their stories are not believed. They can remain anxious that doctors are missing the ‘real’ cause of their bodily distress and that medical tests or interventions are required. 

When Lisa Littman published her study of parents’ descriptions of what they experienced was going on with their children’s declarations of gender identity incongruence in 2018, she named the phenomenon that they had observed ‘Rapid Onset Gender Dysphoria’ or ROGD (Littman, 2018). In her research, Littman found that among the young people reported on — 83% of whom were observed female at birth—more than one-third had friendship groups in which 50% or more of the youths began to identify as transgender during the same period of time. She wrote:

‘Emerging hypotheses include the possibility of a potential new subcategory of gender dysphoria (referred to as rapid-onset gender dysphoria) that has not yet been clinically validated and the possibility of social influences and maladaptive coping mechanisms. Parent-child conflict may also explain some of the findings. 

More research that includes data collection from AYAs (adolescents and young adults), parents, clinicians and third-party informants is needed to further explore the roles of social influence, maladaptive coping mechanisms, parental approaches, and family dynamics in the development and duration of gender dysphoria in adolescents and young adults’. (Littman, 2018)

This new descriptive label was contentious. Littman received a great deal of criticism. Brown University deleted its initial promotional reference to her work from the university’s website—then replaced it with a note explaining how Littman’s work might harm members of the transgender community. Her paper was temporarily withdrawn by the peer-reviewed journal that had accepted and published it. It was subjected to a second peer review, following which it was re-published with slight, but no significant, changes. 

An increase in gender dysphoria amongst adolescents has been observed across the Western world. As yet there have not been any studies to elucidate its aetiology, whether it requires a different medical approach or has implications for prognosis. The World Professional Association for Transgender Health issued a statement that the ROGD descriptor was ‘premature and inappropriate’ (WPATH, 2018). The main competing hypothesis for why there has been a rapid rise in the number of young people seeking treatment for their gender identity is that this is due to increased acceptance and awareness of transgender people.  At the other end of explanations of possible aetiology, dramatic changes in prevalence of a condition could be considered biologically. Little to nothing has been done in this regard. If it were hypothesised that gender identity has a neurological basis, then an increased rate of gender dysphoria in the population might be worth investigating via possible influences during early brain development. For example, a case-control study might examine progesterone use to prevent miscarriage or premature labour in the mothers of children who develop gender dysphoria. 

Littman suggested that the phenomenon parents had observed (and she named ROGD) was different from previous cases of gender dysphoria, and that social influences had an important role to play. This would make some forms of gender dysphoria, at least to a certain extent, a ‘culture-bound syndrome.’ Littman wrote: 

In developmental psychology research, impacts of peers and other social influences on an individual’s development are sometimes described using the terms peer contagion and social contagion, respectively. The use of “contagion” in this context is distinct from the term’s use in the study of infectious disease, and furthermore its use as an established academic concept throughout this article is not meant in any way to characterize the developmental process, outcome, or behavior as a disease or disease-like state, or to convey any value judgement. Social contagion is the spread of affect or behaviors through a population. Peer contagion, in particular, is the process where an individual and peer mutually influence each other in a way that promotes emotions and behaviors that can potentially have negative effects on their development. Peer contagion has been associated with depressive symptoms, disordered eating, aggression, bullying, and drug use. Internalizing symptoms such as depression can be spread via the mechanisms of co-rumination, which entails the repetitive discussion of problems, excessive reassurance seeking (ERS), and negative feedback. (Littman, 2018)

‘The body is the mouthpiece of the mind’ (Freud)

The medically trained ‘father’ of psychoanalysis, Sigmund Freud coined the term ‘hysteria’ for a psychological disorder characterized by conversion of psychological stress into physical symptoms, although this syndrome is only rarely seen in the same form today as he saw it. The historical idea of a wayward uterus causing women to behave ‘erratically’ is loaded with sexism (McVean, 2017), also showing how vulnerable doctors too can be to the culture from which they emanate. 

Terms used to describe the bodily enactment of psychic distress include conversion disorder, functional neurological disorder, psychosomatic disorder and medically unexplained symptoms. Freud initially believed that every symptom could be tracked back to some form of psychological torment or conflict. He proposed that as patients repressed the trauma (ie the memory of the trauma was stored in the subconscious and so not consciously accessible to them), they would inevitably deny they had suffered from any trauma. He later revised this view, noting that there was an association between adult disorders and childhood adversity but it was not universally applicable. Nowadays therapists understand that patients’ distress can come about from many roots. 

‘We embody cultural models of illness; A story is being told by the symptoms’.

Dr. Suzanne O’Sullivan (consultant neurologist) (O’Sullivan, 2021b) 

Culture bound syndromes

Culture has a powerful part to play on how psychic distress, especially in adolescents, is expressed. This is why clinicians note ‘outbreaks’ of anorexia in schools, or, for a more recent example, a sudden increase of non-Tourette’s tics (‘Functional Tics’) during the COVID-19 pandemic, thought to be linked to social media use (Heyman, Liang and Hedderly, 2021).

Culture bound syndromes are most commonly noted in adolescent girls, typically during the teen years to adulthood. The symptoms are ‘contagious’ and can spread rapidly; clusters will appear in concentrated areas such as schools or the workplace. It is highly likely that the Internet, including video sharing apps like Tik Tok, has a major role to play. These disorders are shaped by suggestion and expectation. Although all people are susceptible to some degree, the extent of suggestibility varies considerably.

There are many examples of Culture Bound Syndromes:   

• ‘Havana Syndrome’ – in 2017, a cluster of Americans in the embassy in Cuba fell ill with what experts described as ‘complex brain network disorder’ but which most now think was mass psychogenic illness (Baloh and Bartholomew, 2020).
• ‘Resignation Syndrome’ – where asylum-seeking girls in Sweden fell into an extended and unrousable sleeping state, lasting many months (von Knorring and Hultcrantz, 2020). 
• ‘Grisi Siknis’ – a well recognised condition in Nicaragua and Honduras, where members of the Miskito tribes experienced trance-like states, convulsions, hallucinations and irrational behaviour (Dennis, 1981).
• ‘Koro’ – in which male individuals have an overpowering belief that their penis is retracting and will disappear, despite the lack of any changes to the genitals. (Chowdhury, 1998).

How people experience illness is always subject to context. How someone interprets and reacts to bodily symptoms depends on their cultural context – both wider societal and family culture, their education and access to information, as well as past experiences of disease and help. During development, the brain becomes wired to respond in set ways to ‘illness stimuli’, and so patterns or programmes of responses emerge in a way that is largely unconscious. 

Some children grow up in families where every physical symptom experienced leads to a high level of concern and care by a parent with bed rest, or special treats, or a prompt visit to the doctor. However, if the same child does not garner much response from that caregiver when they express a social or emotional complaint (a fear, worry or friendship upset), then it is easy to see how this child may develop physical symptoms as a way of expressing psychological distress. The child’s brain/mind has learnt that such experiences precipitate loving care. Human brains are constantly learning – yet only a small proportion of this learning is conscious. All our ideas, perceptions and experiences of our bodies, in health and illness, are woven into our mind/brain to create a type of template where experiences then get registered and responded to.

Today, when a new diagnosis or explanation emerges for bodily symptoms, it can more rapidly be disseminated through the Internet/social media. Young people looking for a cause of their suffering, or feelings of ‘mis-fitting’, may become convinced that this explanation is right for them. As new cultural influences become apparent, individuals adapt to accommodate them. Responses that were once rare become more common, to the point that they are normalised. This embodiment of cultural models of illnesses is a powerful, yet rarely discussed, occurrence. 

Alongside physical sensations, cognitions (thoughts and beliefs) also play a role. Explanations about origins of distress are quickly absorbed and fundamentally alter the ways in which individuals conceive of disturbing feelings and sensations. The sentiment ‘I feel like I was born in the wrong body’ could be understood as an example of these processes. A girl feeling extreme distress about her sexed body, perhaps exacerbated by the changes of puberty, may latch onto being ‘transgender’ as an explanation.  If she sees videos or photographs presenting smiling young people who have had ‘top-surgery’ (double mastectomy), she might understandably hope, and become rapidly convinced, that this treatment would be a solution for her own inner physical and mental experiences of discomfort or distress. Her focus may turn to obtaining that medical intervention. 

Adolescents’ main psychological task is identity formation. Individuation (creating a separate sense of the self) is critical to this process. Identity formation and individuation are two sides of the same coin.  Although this is a major part of adolescent development, the process continues throughout life – every new experience brings challenges that can promote or reverse individuation. Parents will be familiar with the typical adolescent’s powerful sense of what is right: an excessive certainty that is often necessary for individuation. This is the time when the angry, separating, rejecting adolescent just says, so to speak, “I am right, and you are wrong”!

Communication between adolescents and adults can be challenging, with difficulty in understanding one another. Adults grew up in an entirely different era, although they too went through a time of sensitivity, exploration, risk taking, turning over the mores about how they were brought up, to some degree or other. Adolescents can find explanations more believable if they come from peers or from people they feel they can relate to, rather than parents. Yet, at the same time, adolescents are also watching their parents’ reactions very carefully, as caregivers’ love and approval are still vital concerns (although this fact is often hotly denied in the moment or arguments). How far is it safe to push, or prove your parents will abreact, disapprove or hate you? 

These considerations of culture-bound syndromes are relevant to the recent ‘transgender phenomenon’. Unprecedented numbers of young people are interpreting (or, some would say, recognising) their inner sense of bodily discomfort as being related to their gender identity. The term ‘gender identity’ was rarely heard and so not available as an explanation for distress in previous adolescent cohorts. Adolescent years are rocky – and for some people they are incredibly painful. Feminist theorists such as Heather Brunskell-Evans argue that cultural dissemination of concepts to do with gender identity theory have constructed a widely-perpetuated social template that encourages young people to interpret symptoms and experiences occurring in puberty as issues to be solved through medicine (Brunskell-Evans, 2019). In this social context, a young person’s desire for the clinical interventions that adults and institutions confidently say will relieve their distress is understandable. 

It is important for clinicians to consider why an explanation of ‘transgender’ or other gender identity may feel easier for young people to turn to, rather than feeling overwhelmed by more amorphous, unexplained fears and anxieties that might feel boundary-less. Naming an emotion may reduce its intensity. If a young person comes to believe they are transgender, then that individual might feel some relief at discovering the ‘root cause’ of their distress. They may thus feel satisfied, or relieved that they do not have to explore or express their inner turmoil, angst, depression or self-hatred any further. These difficult feelings are encapsulated, projected into the body, and equated to ‘being transgender’. The label may also serve to manage the inevitable feelings of shame and inferiority that come with recognition of psychological disturbance. 

Transgender identities are increasingly socially accepted – even celebrated in some areas – and children and young people who declare themselves as “transgender’ may receive support from many quarters. If this identity simply came with acceptance of ‘being different, rather than a ‘medicalising label’, it might be unexceptional, or even liberating. Some children who have been struggling at school might, through declaring themselves as ‘transgender,’ be looked after in a way they hadn’t experienced before. For example, they may gain acceptance and positive reactions from online communities, teachers, peers and LGBTQ+ groups. This experience of support can be powerful at ‘affirming’ their uniqueness, but also may reinforce the new explanation as to what is ‘the matter’ with them, and what help they need next. This in turn would act as a powerful force to maintain their beliefs that ‘transgender’ is the correct explanation. If the child were to have later doubts about their identity (for example should they wish to return to how they were known originally after an announcement in their school class of a new name and pronouns), they are then faced with many hurdles. Not least would be the difficult prospect of expressing a change of heart to the many people the child already invested an enormous amount of emotion, time and energy explaining their prior transgender identity to: “fear of teasing and feeling ashamed resulted in a prolonged period of stress” (Gender Identity Development Service, no date). It is for this reason that experienced clinicians have long discouraged changing how a young child is known socially (ie teachers and social workers reinforcing a state of mind, an exploration for other distresses, and a ‘medical diagnosis’ before it has even been made). Discontinuing from a transgender identity is covered in the FAQ “What do detransition and desistance mean?”

References:

Baloh, R. W. and Bartholomew, R. E. (2020) Havana Syndrome. Cham: Springer International Publishing. doi: 10.1007/978-3-030-40746-9.

Brunskell-Evans, H. (2019) ‘The Medico-Legal “Making” of “The Transgender Child”’, Medical Law Review, 27(4), pp. 640–657. doi: 10.1093/medlaw/fwz013.

Chowdhury, A. N. (1998) ‘Hundred Years of Koro the History of a Culture-Bound Syndrome’, International Journal of Social Psychiatry, 44(3), pp. 181–188. doi: 10.1177/002076409804400304.

Dennis, P. A. (1981) ‘Part three: Grisi Siknis Among the Miskito’, Medical Anthropology, 5(4), pp. 445–505. doi: 10.1080/01459740.1981.9986998.

Gender Identity Development Service (no date) Evidence Base, GIDS. Available at: https://gids.nhs.uk/evidence-base.

Heyman, I., Liang, H. and Hedderly, T. (2021) ‘COVID-19 related increase in childhood tics and tic-like attacks’, Archives of Disease in Childhood, 106(5), pp. 420–421. doi: 10.1136/archdischild-2021-321748.

von Knorring, A.-L. and Hultcrantz, E. (2020) ‘Asylum-seeking children with resignation syndrome: catatonia or traumatic withdrawal syndrome?’, European Child & Adolescent Psychiatry, 29(8), pp. 1103–1109. doi: 10.1007/s00787-019-01427-0.

Littman, L. (2018) ‘Parent reports of adolescents and young adults perceived to show signs of a rapid onset of gender dysphoria’, PLOS ONE. Edited by D. Romer, 13(8), p. e0202330. doi: 10.1371/journal.pone.0202330.

McVean, A. (2017) The History of Hysteria, McGill Office for Science and Society. Available at: https://www.mcgill.ca/oss/article/history-quackery/history-hysteria

O’Sullivan, S. (2021a) ‘The healthy child who wouldn’t wake up: the strange truth of “mystery illnesses”’, The Guardian, 12 April.

O’Sullivan, S. (2021b) The Sleeping Beauties: And Other Stories of Mystery Illness. New York: Pantheon.

WPATH (2018) WPATH POSITION ON “Rapid-Onset Gender Dysphoria (ROGD)”, World Professional Association for Transgender Health. Available at: https://www.wpath.org/media/cms/Documents/Public Policies/2018/9_Sept/WPATH Position on Rapid-Onset Gender Dysphoria_9-4-2018.pdf.