Tie Up Your Teenagers

Functional​ disorders are conditions in which the body’s normal processes are disrupted, but for which no organic cause can be determined. They do, though, have characteristics evident to a trained eye, since the sufferers experience sensations or disabilities that don’t make anatomical sense. This doesn’t mean that the symptoms are in any way less real or debilitating. Functional seizures are often more dramatic, and can last much longer, than epileptic seizures, for instance, and the apparent absence of a biological cause can make functional illnesses all the more distressing.

Freud continued the Hippocratic and early modern habit of referring to functional disorders as a form of ‘hysteria’ – a calamitously poor and sexist misnomer – but he was on the money when he said that ‘in its paralyses and other manifestations, hysteria behaves as though anatomy did not exist or as though it had no knowledge of it.’ Such conditions as multiple sclerosis, poisoning or tumours nearly always follow anatomy’s rulebook; faced with symptoms that have no plausible anatomical basis, specialists like Suzanne O’Sullivan, a consultant neurologist based in London, usually identify functional illness on the basis of history alone.

The trouble is that if an illness doesn’t leave some signature on our physical make-up then society assigns it less importance. O’Sullivan spends much of her time as a clinician trying to unpick not just her patients’ culturally acquired insistence on mind-body dualism, but their horror of being diagnosed with a condition caused not by some biochemical or anatomical phenomenon, but by the complex interplay between their beliefs and their perceptions. Patients often resist a diagnosis of functional illness even if it carries a better prognosis; functional paralyses, for example, are potentially reversible in a way that paralyses caused by a stroke or the destruction of a nerve are not. To confirm her diagnostic hunches, O’Sullivan has access to resources a GP like me can only dream of: an array of scanners, EEGs, lab tests and sleep studies with which she can test to destruction her patients’ conviction that their illness has a discrete biological or anatomical origin.

O’Sullivan is reliably calm, fair-minded and candid. In her first book, It’s All in Your Head, she traced the cultural and historical baggage of terms such as ‘hysteria’ and ‘psychosomatic illness’, arguing that the very real and disabling conditions they mislabel should be accorded greater respect, not just in medicine but in society at large. Her second book, Brainstorm, was about neurological diagnosis and the fabulous, unexpected ways in which brain disorders manifest themselves. In The Sleeping Beauties, she returns to the terrain of functional illness, this time to consider suggestibility and the ways in which our existence as social beings can make these conditions contagious. Outbreaks of contagious functional illness have had many names; ‘mass psychogenic illness’ is one of them, ‘mass sociogenic illness’ another. They are far from uncommon. O’Sullivan lists well-known instances such as the dancing plague of 16th-century Strasbourg, the ‘jumping’ lumberjacks of 19th-century Maine and the laughter epidemic of Tanganyika in 1962, but there is no shortage of contemporary examples, including an outbreak of vomiting and breathing problems at an e-cigarette factory in Salem, New York in 2018 that turned out to have been triggered by the smell of new carpets.

Many of O’Sullivan’s investigations begin with her reading a news report, then buying a plane ticket. ‘Mass Hysteria Breaks Out in Central America’ alerts her to the Miskito people of Nicaragua, who experience periodic outbreaks of grisi siknis (or ‘crazy sickness’). The report described 43 people from three different communities, most of them young women, who were ‘struck down’ and left in a trance-like state, struggling to breathe, shaking and convulsing. O’Sullivan watched videos of these attacks and thought they resembled the functional seizures seen in her London clinic, usually on the smartphones of her patients’ frantic relatives. If patients are taken to hospital and given injections of sedatives they tend to get worse (an Italian anthropologist, Maddalena Canna, tells O’Sullivan that, as with Sleeping Beauty’s spindle, ‘injection is seen as penetration and is associated with a sexual act’). But recovery can be quick if the victim is treated by the community, even when the treatments themselves appear problematic. The Miskito, O’Sullivan writes, ‘tied up the teenagers and pinned them down. They threw buckets of the healing potion over them and prayed for them.’ A shamanistic ritual involving chanting, prayer and touch succeeded where Western medicine had failed. One of Sullivan’s interviewees describes what it feels like to fall victim to an attack: ‘Grisi siknis is like a dream that cleans from the inside.’

Talk of demons and spirits causes Westerners to assume that the Miskito are, in Canna’s words, ‘a naive people’: ‘That is not how it is at all. Often they have insight. They are in control of it, to a degree. Grisi siknis is a way to exteriorise conflict.’ Canna sees the illness as a sophisticated response to a culture that sexualises young women but expects their chastity as well as their subordination. (It seems to me that I see comparable conflicts in my adolescent female patients in Edinburgh, which occasionally lead to localised outbreaks of self-cutting, bulimia or anorexia.) O’Sullivan asks a young Nicaraguan man why women are so often the victims, not men: ‘I don’t know,’ he says, ‘but I think maybe the girls are weak and grisi siknis makes them strong.’ O’Sullivan agrees, and notes the usefulness of a biopsychosocial understanding of medicine which recognises that someone may act out a conflict in such a way as to alert others to it, while at the same time summoning the community to their aid.

O’Sullivan also discusses a condition that affects children in Sweden whose families are caught up in protracted asylum applications. ‘Resignation syndrome’ (Uppgivenhetssyndrom) is characterised by withdrawal, inactivity and mutism; many of the sufferers are reduced to being tube-fed and wearing nappies. These are the ‘sleeping beauties’ of O’Sullivan’s title: they aren’t comatose or sleeping, but, as the book makes clear, the sexist stereotypes of functional illness persist. Most children with resignation syndrome belong to families seeking asylum from countries in the Middle East, the Balkans and Eastern Europe – families of African or Asian origin seem not to be so badly affected, though rates among Uyghur families may yet disprove this. There has been some shrill commentary in the right-wing press, but these children aren’t putting it on: some of them are as young as seven, and when (on a very small number of occasions) children have been coerced by their parents into faking it, the condition has proved very difficult to mimic.

One of the most effective treatments for resignation syndrome is to grant the family asylum, but even then recovery is slow – as would be expected of a body subject to such prolonged inactivity. That the condition can be cured by a positive asylum decision leads some to dismiss it as malingering. O’Sullivan’s defence against that charge is succinct: ‘Given that resignation syndrome is considered by many to be caused by hopelessness, [it] can therefore be treated by the restoration of hope.’ As with the Nicaraguans, she asks her interviewees what it’s like to experience the illness. One child described it as ‘being in a dream that I didn’t want to wake up from’.

Because functional illness in general, and sociogenic illness in particular, is so poorly understood, it is essential that the diagnosis is conveyed sensitively, and at first only to the families affected. When these principles aren’t followed the outcome can be catastrophic. One day eight years ago in El Carmen, Colombia, a classroom of young women began fainting, some of them suffering convulsions. By the end of the day the same thing had started happening in several other classes in the school. ‘Convulsing schoolgirls are a key part of the … story that people associate with the acute form of mass hysteria,’ O’Sullivan writes. ‘Typically, one or two girls faint, possibly in the heat, and the rest are triggered to collapse through fright or hyperventilation, or pure expectation. Usually the phenomenon is gone in a day.’ Yawns, coughs, blinks and itches are contagious: why not convulsions?

When the girls of El Carmen were transferred to the local hospital extensive tests were run and, as with most functional disorders, the doctors reached a diagnosis very quickly: mass psychological illness. We don’t know exactly what was said to the families, but people who only hours before had feared their daughters were dying heard instead that they weren’t right in the head. One of the parents tells O’Sullivan: ‘People in the street shouted after our daughters, “There go the crazies!”’ The insults targeted at the girls often had sexist or prurient overtones. Unsurprisingly, the local community rejected the diagnosis and cast about for an alternative explanation. Soon the event was connected by many to the girls’ recent vaccination against HPV, a sexually-transmitted virus that predisposes women to cervical cancer. Then their problems really began.

One of the girls described to O’Sullivan what it felt like to be in that classroom in 2014: ‘It was very frightening … If you saw somebody collapse, you felt you would too. It spread like that.’ Yet there was pressure on the El Carmen girls to deny this aspect of the symptoms because their parents and other members of the community, as well as malevolent anti-vax campaigners who flew in to take advantage of the situation, told them instead that it must have been the HPV vaccine – a story which effectively closed off the possibility of recovery (as well as preventing other girls from receiving the vaccine). ‘I feel well,’ one of the girls tells O’Sullivan, ‘but I know I’m not well. I know it’s still inside me.’ It didn’t help that some in the community were uneasy about the morality of a vaccine that anticipated their daughters’ future sexual activity. ‘Conspiracy is more compelling than normal life,’ O’Sullivan writes. ‘External causes for illness are more attractive than psychological mechanisms.’

O’Sullivan compares El Carmen’s mass psychological illness with a similar outbreak in 2011 in Le Roy, New York where several girls and one boy experienced Tourette-like tics as well as tremors. Again the local physicians correctly diagnosed the illness, and again, mistakes were made in the way the diagnosis was delivered. The outbreak seemed to be under control and even receding once the families of the affected children had been given an explanation, but then, at a health department press conference, the illness was described as a ‘stress response’. The emphasis on stress as the origin of functional disorders is outdated and unhelpful (though it dominated my own medical training 25 years ago). ‘It is in the gap,’ O’Sullivan writes, ‘between the diagnosis of … functional neurological disorder and the understanding of what that diagnosis means that there is space for harmful things to grow.’

Journalists closed in on the town; the American Spectator reported the story under the headline ‘The Witches of Le Roy’. There was speculation that the children’s condition was the result of poisoning from a toxic waste spill that occurred in a place some miles away, forty years earlier. Erin Brockovich got involved, going on the news – though she’d never visited Le Roy or interviewed anyone involved – to express the conviction that the town’s health officials clearly had something to hide. The children relapsed, but were in the end more fortunate than those in El Carmen. The doctors in the town held their line, the journalists moved on and, crucially, the diagnosis of sociogenic illness made sense to the sufferers, and stuck. Local health officials encouraged the families affected to refuse media interviews, and in time, the children all recovered.

It’s worth quoting O’Sullivan at length on the still unresolved question of why young women seem to experience sociogenic and functional illness more frequently than their male peers.

Some people have tried to explain the female preponderance by saying that doctors are more likely to ‘dismiss’ women’s symptoms as psychological and are less inclined to pursue an alternative explanation, thus implying it is a diagnosis of neglect rather than a significant medical disorder in itself. I certainly agree anecdotally that women are more likely to be dismissed by doctors as ‘complainers’ and that men are more willing to diagnose functional disorders in women than men … It is the way the diagnosis is portrayed as a ‘dismissal’ that I think illustrates the real sexism at play here … Doctors make jokes about women who come to hospital because of dissociative seizures. They are referred to as time-wasters. If it were a disorder that stopped middle-aged, middle-class men in their tracks, it might have attracted a different response.

There are many factors involved, but, O’Sullivan writes, ‘I am convinced that [women’s] voiceless position in society is one of them. There is a strange, impossible place that women are supposed to occupy, which values a gentle, fragrant femininity that is far too quiet to be natural.’ Among other potential factors she includes the onset of hormone cycles that ‘create more abundant white noise’ from the body. Low blood pressure predisposes a person to fainting, particularly if there’s a degree of dehydration, and young women are more likely to have low blood pressure than young men. It’s a complex picture.

O’Sullivan describes just one outbreak of sociogenic illness in which men and women were equally affected; it may be relevant that it was attributed not to spirits, sexualised injections or asylum decisions, but to a high-tech sonic weapon. This was the ‘Havana Syndrome’ that afflicted diplomats in the US consulate in Cuba in 2016. They began to hear ‘grating noises’ and to suffer nausea, deafness, and failure of memory and concentration. The syndrome quickly spread, affecting US diplomats working at the Guangzhou consulate in China in 2018; since then, more than a hundred other attacks have been reported, most of them among people working for the US military, CIA or State Department. In the original case, the idea took hold that an as yet unseen weapon had been planted in the consulate building by Cuban or Russian intelligence agents. No such weapon was ever found, and no explanation given as to how it might work.

Functional illness ought long since to have been given the attention and understanding it is due. When I teach first-year medical students about community medicine I emphasise that no one’s suffering is experienced in isolation; it invariably has a social context. We fall ill in ways we have been led to expect, and though our suffering is always in some sense unique, it is also shaped by the roles we adopt and the meanings we ascribe to our experience. ‘For many of the people I met,’ O’Sullivan writes, ‘psychosomatic illness served a vital purpose. Seizures solved a sociocultural problem for the Miskito … Psychosomatic and functional disorders break the rules of every other medical problem because, for all the harm they do, they are sometimes indispensable.’ Of her own patients with functional neurological disorders, she says that ‘the best hope is for somebody to … give them a new narrative to embody.’ It’s through stories that we shape meaning, and we need to get better at explaining how pernicious and destructive the wrong stories can be.