The Sleeping Beauties: And Other Stories of Mystery Illness by Suzanne O'Sullivan (2021)
The Sleeping Beauties: And Other Stories of Mystery Illness by Suzanne O'Sullivan (2021)
Preface: The Mystery Illness
Up to a third of people attending any neurology clinic have a medical complaint that is likely to be psychosomatic in nature-meaning real physical symptoms that are disabling, but which are not due to disease and are understood to have a psychological or behavioural cause. Paralysis, blindness, headache, dizziness, coma, tremor, or any other symptom or disability one can imagine, has the potential to be psychosomatic. And, of course, it’s not just a neurological phenomenon; any organ in the body can be affected and almost any symptom can be generated in this way-skin rashes, breathlessness, chest pain, palpitations, bladder problems, diarrhoea, stomach cramps, and on and on (2).
What was once called “hysteria” is now referred to by some as a conversion disorder, or, more recently and more aptly, as a functional neurological disorder (FND). In most medical specialties, the term “psychosomatic” is still used to indicate medical problems in which the bodily symptoms are thought to have a psychological cause. However, in neurology, the word “functional” has increasingly replaced “psychosomatic.” “Functional” is considered preferable because it indicates that there is a problem with how the nervous system is functioning, while disposing of the prefix “psych,” which is too often (wrongly) distilled to mental fragility, or even madness, in people’s interpretation. “Functional” implies a biological problem, but without the assumption of the presence of stress that has existed in all previous versions of these types of disorders. It leaves open the possibility that emotional trauma is not the only means by which psychological processes can affect the functioning of the brain to lead to disability.
Both psychosomatic disorders in the realms of general medicine and functional neurological disorders in neurology are incredibly common and have the potential to be very serious medical problems. Yet people aren’t always aware of that, because, in the public arena, they can be very hard to spot, hidden as they are behind euphemisms, clichés and misunderstanding. That is aptly demonstrated by FND’s media portrayal, where it is commonly referred to as a medical “mystery” (4).
There are a great many unanswered questions in the field of psychosomatic medicine, but just as many exist for hundreds of other neurological problems. Yet it is mainly FND, and psychosomatic disorders in general, that still have to fight to shake off centuries-old formulations in order to be seen as legitimate medical conditions (7).
In 1977, the US psychiatrist George Engel criticized the tendency for doctors to view illness in solely or predominantly biological terms. In a paper published in the medical journal Science, he reminded the medical profession that behaviour occurs in a context, and therefore people should never be viewed out of that context. He suggested a new medical model, which he called “biopsychosocial medicine.”
Every medical problem is a combination of the biological, the psychological and the social. It is only the weighting of each that changes (8).
1. The Sleeping Beauties
That’s how modern medicine works: disease impresses people; illness with no evidence of disease does not. Psychological illness, psychosomatic and functional symptoms are the least respected of medical problems (19).
Resignation syndrome is not indiscriminate. It is a disorder that exclusively affects children of asylum-seeking families. These children were traumatized long before they fell ill. Some were already showing very early signs of illness when they arrived in Sweden, but most only began to withdraw when their families were faced with the long process of asylum application (20).
2. Crazy
It was a medical problem, but not the same as asthma or cancer or diabetes. What was absolutely clear was their expectation that, if you took a person with grisi siknis to a hospital doctor, even in Nicaragua, they would say that it was a psychological problem, but wouldn’t offer any treatment. In the view of the people around the table, that made the doctor’s opinion useless. But the local healer’s treatment was curative, so, when someone succumbed to the condition, the family typically called the healer and the pastor.
Maria went to a cupboard and got a small plastic bottle filled with clear liquid. She opened it; it smelled of overripe fruit.
“Florida water-this is part of the treatment.” Florida water is a perfume that some say purifies the spirit.
She then went to the utility room and reappeared with a small plastic bag filled with a blue powder that she said could cleanse a person of the sickness. She also brought a container shaped like the Virgin Mary, full of holy water. When I was growing up, these featured in every Irish home I knew. My family had been given one by somebody who had been on pilgrimage to Lourdes, where the Virgin Mary was said to have appeared. Maria told me that holy water was mixed with Florida water, along with the blue powder, lemons, garlic and a variety of herbs. The grisi siknis sufferer was then doused in the concoction. Many get better very quickly with this treatment. Sometimes the illness lasts months, but the vast majority recover completely.
“The devil is looking to be warm, so he enters the girls,” Anthony explained (54-5).
During my trip to Port Arthur, Mario said to me, “Miskito-if they have four stories, they will only tell you three.” Somatic (bodily) symptoms that have a psychosocial cause have something in common with that description. There is a story being told by the symptoms, but, while the physical manifestations may be explicit, the complex factors that led to them are not so easy to see. The Miskito were warm and welcoming, and willing to be asked and to answer anything, but, to understand the disorder in a more academic way, I met a doctor of anthropology who had studied grisi siknis and had written a thesis about it (57).
“The Miskito’s classification of illness is very complex,” she told me from the outset. “Europeans who hear about demons and spirits sometimes assume that means that they are 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 exteriorize conflict” (58).
Grisi siknis is influenced by the stories told about it. During Madda’s stay with the Miskito community, she became part of the narrative. In the early days of interviewing people about the condition, she found some were reluctant to describe the experience in detail. She hit upon the idea of asking them to draw a picture representing their experience instead. They resisted at first; pictures of the duende are said to have magical properties and could make other people sick. However, some agreed, and one day a mother remarked that the picture had the effect of drawing the demon out of her child. This discovery moved Madda from the role of ethnographer to shaman-a role she was at first reluctant to accept.
“I told them I had no medical training. I couldn’t be responsible for that.”
But when some people were cured by the act of drawing, she continued with the practice. She showed me some of the pictures. Most were of strange, stick-thin, faceless figures, all wearing hats. Some had oddly shaped or absent thumbs. The duende wears a hat, has only four fingers, and his or her face cannot be shown because it is believed that puts those who see it at risk of catching grisi siknis. One picture showed an armadillo, an animal associated with the demon. Another displayed the spirit with a stomach swollen with blood. Stomach parasites are common in Nicaragua, and stomach complaints can be a trigger for grisi siknis: the sufferer catches the infection and mistakes it for the onset of grisi siknis, which can also begin with abdominal pains. The assumption that they had contracted grisi siknis could cause a person to anticipate seizures, and that could trigger dissociation, causing dizziness and ultimately fulfilling the person’s expectation. So a medical illness could also be the inciting incident for the syndrome; it does not require psychological distress or conflict to be present (63).
Illness is a socially patterned behaviour, far more than people realize. How a person interprets and reacts to bodily changes depends on trends within society, their knowledge, their education, their access to information and their past experience of disease. Personal and societal role models create expectations of health and ill health that are coded in neural substrates. Our brains are wired through experience to respond in a certain way to certain provocation. It is an unconscious process (66).
3. Paradise Lost
Interpreting a medical history through a translator is a frustrating process for a doctor. The nuance of the symptoms is lost, and I was struggling to understand exactly what had happened to Tamara. In psychosomatic illness, the devil lies in the small details, in the turn of a phrase. This sleeping sickness, like resignation syndrome, was also geographically contained, affecting only two neighbouring towns, Krasnogorsk and Kalachi. Culture-bound syndromes are often a metaphor for something that cannot be expressed in a more explicit way within a certain community. Grisi siknis allows girls to express themselves in a society that imposes conflicting values on them. Resignation syndrome gives a voice to the voiceless. If the sleeping sickness was psychosomatic, what was it about these two small towns that had created it (89)?
Frustrated, I asked Dinara to tell me precisely what words Tamara had used to describe how the illness felt. Dinara asked her to describe it again.
“She said it is like a person becomes a trained reflection of themselves. The body can be awake, but the brain is not, so the person’s understanding of the world is paralysed.”
Tamara had done her make-up and fixed her hair before she went to hospital-in that moment, she was an echo of herself (89).
It seemed the disorder had a very wide range of forms. Some people lost the ability to walk or talk, but didn’t sleep. Acting on automatic was a common manifestation. A person could appear to be asleep, but then they would wake, suddenly answer a question entirely appropriately, and then fall straight back to sleep again. The illness affected men, women and children. It could last a day or several weeks. Unlucky people had recurrent bouts (91).
Five years had only seen an evolution in symptoms. This is absolutely typical of a psychosomatic disorder: it evolves over time as its story is retold by each new person affected. I had seen that evolution in the stories of grisi siknis, where each generation added new elements and interpretations. In the case of Krasnogorsk’s sleeping sickness, different people experienced it differently, and in children it was wildly different from how it manifested in adults, almost as if they had another problem entirely. Doctors’ and scientists’ investigations into the matter had been fairly exhaustive, yet they found no objective proof of a toxin or a virus, and none of disease. Of course, Tamara might argue that the investigations were carried out by the government, and she didn’t trust them. I had already learned during my brief stay in Nur Sultan that there was some justification in her mistrust. Still, it seemed the government hadn’t used Krasnogorsk for anything after the people left, so it was hard to see what they had gained, if the accusations were true. A psychosomatic condition seemed inescapable, to me. The symptoms and disabilities made no anatomical or physiological sense. The outbreak was inconsistent with disease. I thought of the convulsing and hallucinating schoolchildren that Tamara had mentioned. In Nicaragua, they would have been told that they had grisi siknis, but, in ex-Soviet Kazakhstan, spiritual explanations didn’t exist, whereas toxic mines and devious governments did (97-8).
An alternative explanation to radon was carbon monoxide poisoning, which certainly causes drowsiness, dizziness and unsteadiness, and could lead to coma. Chronic low-level poisoning would also be hard to detect. But once in hospital, away from the source of the carbon monoxide, and treated with oxygen, the sufferers should have woken fairly quickly, unless they had significant brain damage, which they did not, as was proven by the normal scans and EEGs. Even when in hospital, some slept for days or weeks. What’s more, carbon monoxide collects in poorly ventilated spaces. It affects miners inside the narrow confines of working mines, not outside in the open air. And there would be no reason for carbon monoxide poison to have an increased chance of poisoning people at group events, which was a big feature of the sleeping sickness. Nor would it explain some of the odder features of the illness-acting on automatic pilot, crying uncontrollably, thrashing limbs. Also, where did the carbon monoxide suddenly come from in 2010, and where did it disappear to in 2015? Fear of a uranium mine was very legitimate, but that avenue had been investigated and thoroughly ruled out. Suspicion of a government that controls social media and serves its own purpose was also entirely reasonable, but still the conspiracy theory didn’t hang together (103-4).
While talking about all that Krasnogorsk had subsequently lost, Lyubov didn’t seem upset. She had weathered the downturn in fortune without complaint and it hadn’t dampened her love affair with the place. I wondered if it was because she thought the hard times were temporary. Maybe the people who stayed were waiting, expecting the mine to reopen, the water to be turned on, the shops to be restocked, for everything to go back to how it had been. The structure of the town still stood; nothing irrevocable had happened (112).
The worst outcome for many patients with a psychosomatic or functional disorder can arise when the doctor insists that a particular life event is the cause of the patient’s symptoms, and the patient insists it isn’t. The two are immediately at odds, with no chance of moving forward. Freud’s association between the development of conversion disorders (as functional neurological disorders used to be known) and a history of sexual abuse has been particularly problematic for patients, since it still lingers in the heads of many doctors, and patients can find themselves seemingly accused of denying abuse they know never happened. A proportion of people with functional neurological disorders like dissociative (psychosomatic) seizures have suffered abuse, but a larger proportion have not. Almost as bad is when there isn’t an immediately obvious stress-induced trigger, and doctor and patient respond by setting off on a futile hunt for something that either doesn’t exist or is too motley to be easily distilled into a simple case of cause and effect. For many people, the development of symptoms is not about a specific traumatic event, but rather is related to embodied expectations, beliefs and stories (114).
If one believes, as I do, that the Krasnogorsk sleeping sickness is a psychosomatic phenomenon, then there are a large range of both personal and societal influences that have come together to produce the disorder and propel the outbreak forward. Hardship was not irrelevant, but, as all the people pointed out, they had weathered that without difficulty for more than a decade. It was not the key driver of the illness outbreak. Much more important was the highly unusual town in which these people lived, and their deep-and perhaps surprising-love for that town. Also important was Krasnogorsk’s geopolitical position, first in the Soviet Union and later in independent Kazakhstan, as well as the political atmosphere of Kazakhstan and, finally, the media response to the reports of the sickness. Theirs was not a tale of people made unhappy by deprivation, but one about a group torn apart by the difficult realization that they would eventually need to abandon the homes they loved. The sleeping sickness helped them make a very difficult step.
There was no template in the Kazakh culture for sleeping sickness. It was a finite medical disorder, confined to a small close-knit community. In so-called “culture-bound syndromes” like grisi siknis, the ideas from which symptoms are drawn exist endemically in the population; in Krasnogorsk, it was created afresh. The scene was set by Lyubov. The first person to develop symptoms in a mass outbreak may have the same symptoms but a different final diagnosis from those who follow. I strongly suspect, based on her description, that all of Lyubov’s symptoms were psychosomatic from the outset, but it is possible that it could have been carbon monoxide poisoning, as others have suggested. The group of people who became drowsy and unsteady at the spring festival could have been poisoned. A bad batch of vodka would certainly explain their symptoms. The problem came when Lyubov’s illness was connected to the spring- festival incident, at which point a rich narrative began to develop around the illness. With anxiety planted in a community under pressure, others who noticed some bodily change unconsciously looked to Lyubov’s experience to know what symptoms to expect. They embodied those expectations (115).
4. Mind over Matter
Dr. Olssen asked the boy if he felt okay. He replied in Swedish and she translated, telling me that he was complaining of headaches and dizziness. She talked to him again and he said he was sleeping badly and having nightmares. I wanted to tell her to stop asking him about symptoms; he lived in a confined space with two chronically ill sisters and, since illness is passed on through proximity, expectation and embodiment, I was worried for him (130).
In the medical field, the term “organic” is generally used to refer to a pathological change in an organ, while “non-organic” refers to a disorder that has a psychological cause. I don’t have strong feelings of disagreement when those definitions are used as guidelines; however, I recognize they have become problematic because many people, both medical and non-medical, extrapolate the “organic” and “non-organic” division into meaning that symptoms are either “real” or “not real.” Therefore, someone who has a stroke is referred to as having an organic brain disease, and they are considered to be “really” paralyzed, whereas somebody who has a psychosomatic or functional disorder is considered to have a psychological problem, and so they are not “really” paralyzed. With that sort of interpretation of what it means to have a psychosomatic (functional) disorder, is it any wonder that people reject the diagnosis?
Whatever you call these disorders-functional, psychosomatic, biopsychosocial, conversion, non-organic-they all arise as a result of physiological mechanisms that go awry to produce genuine physical symptoms and disability. Although they are often explained by a simple cause-and-effect model between stress and physical symptoms, there are actually a multitude of mechanisms through which they can develop. They are a manifestation of the interplay between the body and the higher cognitive and social processes that create the “mind.” While there may be no disease present in terms of a pathological structural change, there are physiological abnormalities created by such brain and bodily functions as predictive coding, dissociation, stress hormones and the autonomic nervous system (141).
5. Horses Not Zebras
I can’t know for sure what caused patient zero’s acute onset of dizziness, hearing impairment, tinnitus, loss of balance and fatigue, but they did associate their symptoms with hearing a sound. From this, three possible scenarios can be postulated.
First, patient zero was actually attacked by a noxious agent and, whatever form the attack took, there was an associated sound. Attacks on agents and politicians are well attested, and, while the sound could not have been the medium for damage to the nervous system, it could have been a by-product of some other sort of attack. I don’t favour this explanation, but it is entirely within the bounds of possibility.
Second, patient zero could have developed an illness for any of a dozen other reasons, and, in searching for an explanation, they remembered having heard an odd sound. Our brains hate chaos; we always want to know why something happened, and it’s human nature to search recent experiences for that explanation. People with a newly diagnosed disease often hit on the memory of a recent minor injury or some kind of environmental exposure on which to pin the blame, when, really, many diseases occur just by chance. A person will hear a lot of unexplained sounds in their lifetime, but they are more likely to recall the odd sound they heard shortly before they developed a significant illness. This is called recall bias, in which small things that happen just before a major life event take on much greater significance than they deserve. In this scenario, the sound was a coincidence that took on prominence through recall bias.
The third possibility is that patient zero’s illness was functional from the start, created by the anxiety of a suspected attack. If that person was in a position to think they were at risk of attack, then hearing a sudden sound might have worried them enough to provoke them to search their body for injury. Bodily changes are always available to notice, if we look for them-it’s that white noise again, creating a constant pool of physical symptoms which we usually disregard. A sound would draw attention to the ears, making the head the focus of the symptom pool (162-3).
Between December 2016 and August 2017, the events in Cuba were kept out of the press, but there was considerable internal medical and political response. In February 2017, there were enough cases for it to be considered an outbreak, which is when Dr. Hoffer became involved. He was not only an ENT specialist, but was also ex-military, with expertise in blast injury. He flew to Cuba to examine the victims, and those most severely affected were later flown to Miami, where he investigated them further. It was his team that was first to suggest a diagnosis of traumatic brain injury. He found evidence of inner ear damage, but since that couldn’t account for all the symptoms, he suggested the embassy staff affected must also have brain damage. The team published their account of the phenomenon in a journal that Hoffer also edited, Laryngoscope Investigative Otolaryngology. As with the JAMA paper, this account took the “energy attack” as a truth, with the stated purpose of the academic paper being “to describe the acute presentation of individuals who experienced neurosensory symptoms after exposure to a unique sound/pressure phenomenon.” While advising caution in coming to any definitive conclusion, and agreeing that the cause of people’s symptoms was unknown, the authors also said, “It would be imprudent to exclude any potential directed or non-directed energy sources at this time.” They went on to speculate on a number of ways a sound weapon could have caused the symptoms and, while acknowledging that their publication served only as a description of the victims’ experience, they also stated that the symptoms were very like those caused by “traumatic brain injury following blast exposure or blunt trauma.” This paper was published two years into the outbreak, after the intelligence agencies had searched for and found no evidence to support an energy weapon. Diagnosis of blast injury requires that a person be in a blast, but even the fact that there was no proof of such a precipitant did not put anybody off the single-minded assumption that that was what had caused the victims’ symptoms (182).
6. A Question of Trust
People told her that she had convulsed, then she lay still for a while, as if asleep. When she woke up, she was crying. It is very common for people to cry in association with dissociative seizures. Like Lyubov, Juliet did not find it easy to connect this ordinary physical indicator of upset with its most common cause.
“Do the seizures have a pattern?” I asked.
She thought for a while before saying, “They happen when I think too much.”
So many of the girls associated their symptoms with anxious thoughts, but they then overlooked the importance of that and searched for alternative explanations (212).
The emphasis on poverty and potential abuse had irked everybody. The view that dissociative seizures are always due to abuse, psychological trauma or psychological suffering is limited and old-fashioned. Despite the fact that the illness was sweeping through the town, and not unique to Juliet, the psychologist had focused attention on her family and her personal life, which had alienated her. On the biopsychosocial spectrum, the outbreak in El Carmen was predominantly a social one. It was less about individuals and more about group dynamics. It was about a government that people didn’t trust, a flawed healthcare system and people’s isolation from the outside world. Rumours were spreading through the town and the families had no easy way to filter truth from lies. That Juliet had found discussions about her family unhelpful was not surprising.
The good news was that Juliet was better. She had managed to find ways to overcome her symptoms, teaching herself techniques to stop the seizures, such as by closing her eyes and telling herself to calm down when she felt the warning signs. Although this worked, Juliet was scared that it wouldn’t work forever, echoing Frida’s concerns that the illness lay dormant inside her.
We talked for a while about dissociative seizures. In a third of cases, they get better just through having an open discussion about how and why they manifest. Mechanisms like predictive coding and the embodiment of illness templates create disability through expectations, but they can also heal. Juliet had found ways to manage her seizures, and positive expectations could help her to sustain that (214-6).
What was odd was that Marcela, Yesmid’s mother, had started to have seizures too. “I was overwhelmed. I still am,” she told me, when I asked why she thought it happened to her. She blamed stress for her seizures.
I blundered in, as usual: “But if your illness was triggered by stress, don’t you think that could also apply to your daughters?”
“No,” Marcela said, looking perplexed. “Why would a child have stress (217)?”
Later, I asked Catalina why she thought the families were so unanimous that stress was destroying the parents’ health, but they didn’t acknowledge the psychological impact of the circumstances on the children.
“Maybe they think they’ve protected the children, shielded them more than was ever really possible?”
We agreed they did not seem to accept the maturity and independent inner lives of the girls (217).
There is absolutely no doubt that psychosomatic disorders are more common in women, even allowing for bias. I think that is precisely why the medical community has found the disorder so easy to neglect. For centuries, women’s place in society was such that it made it easy for their complaints to be trivialized or dismissed. Attitudes like that still linger today. In the same way that careers, sports and pastimes that are favoured by women are less respected and less well rewarded than their male equivalents, this illness has been regarded as relatively unimportant. 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. It is not that the disorder is a judgemental label given to women-it is that, as a predominantly female condition, it was easy for a predominantly male profession to think it trifling.
It is worth comparing the way the El Carmen girls were discussed with how people talked about the sonic-weapon victims in Cuba. In El Carmen, the girls were accused either of being sexually frustrated or the subjects of abuse, then they were told that they needed husbands. It was suggested that they had been damaged by violence that had taken place before some of them were born (223-4).
Truthfully, nobody really knows why young women are more likely to be affected by these disorders. There are many factors, but I am convinced that their 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. The girls of the Miskito Coast were expected to live traditional, conservative lives, while also finding themselves sexualized by older men. Their choices in life were limited. Young women everywhere are told they are equal, but are held back when they try to assert that equality. Colombia has strong legislation that has attempted to give women equality, but what happens in practice is often very different.
There may also be something in young women’s physiology that makes them more vulnerable to functional disorders, which is nothing to do with stress, psychology or society. The frequent bodily changes that come with cyclical hormones might create more abundant white noise, which young women have to learn how to decipher. A tendency to lower blood pressure and thus to fainting would certainly act as a trigger for dissociative seizures. Women may be physiologically more vulnerable in a healthcare system with a tendency to view the physiological differences of women as weakness rather than biology. The fainting and swooning of women in the 1800s probably had more to do with tight corsets, inactivity and innate low blood pressure than with psychological frailty, as was sometimes implied. Similar judgements still exist when it comes to period pains, the menopause and other female-only medical problems (224-6).
A simple mass fainting episode had been turned into a protracted medical and social problem by fear-mongering and disinformation. It had also been stoked by poor communication of the diagnosis. They had been given the correct diagnosis, but had not understood it. How could the girls get better if they believed they had been poisoned? How could they accept a functional cause for their symptoms if that was taken to mean they were crazy? I didn’t think the girls had psychological problems. It seemed to me that the solution lay with the parents and the community, not the girls (228).
7. The Witches of Le Roy
More than most medical problems, this one seems unable to escape being weighed down by cliché and long-ago debunked theories. A particular issue is that the disorder is inevitably seen as arising from inside the person as a result of some fragility belonging to them, when actually that is not typically the case. In fact, a true mass-hysteria outbreak says much more about the society in which it occurs than it does about the individuals affected (237).
The press furore around Le Roy lasted weeks, but in the end this town and these girls turned out to be much luckier than the people of El Carmen, because their story did have an ending. After an intense period of escalating symptoms, the total number of victims stopped at around eighteen, following which the severity of the tics and convulsions began to recede. However, the whole event had gone on for far longer than mass hysteria outbreaks usually do, and the reason for that, and for the ultimate resolution, was, to my mind, sociocultural, not personal. The media frenzy, the misrepresentation of conversion disorder, the public stigma associated with biopsychosocial illness and, more than anything else, the atmosphere in which opinion was given the same weighting as fact-all these factors had stoked the worst of the hysteria in Le Roy. And yet, the story of the town was steadfastly presented as a psychological problem belonging to the girls, as if all those outside elements didn’t exist. Only passing recognition was given to the reality of what a media- and celebrity-driven culture might have done to them. Ultimately, it was the withdrawal of the families from the many malign external influences, and the doctors’ strong stance in presenting conversion disorder as a valid and positive diagnosis, that brought the outbreak to a close (249).
Mass illness outbreaks in schools aren’t oddities or things of the past. They are not unique to any particular type of society, nor do they require a history of violence, poverty or hardship to occur. They can happen anywhere, to any sort of community, and do so on a regular basis.
Experts divide mass hysteria into two types. First, there is mass anxiety hysteria which occurs out of the blue, without any preceding stressors needing to be present. It usually affects young people and happens in contained environments, like schools. It spreads through direct contact and comes and goes in a flash (255).
The second type is mass motor hysteria, which can affect people of any age, is more insidious in onset and lasts much longer. Unlike mass anxiety hysteria it typically occurs where there is a background of chronic tensions within a close-knit community. For example, in a struggling small town in the middle of the vast Kazakhstani steppe, in a time of political uncertainty and lack of control. Or in a US embassy under pressure, among people who have a reason to be fearful.
The big problem with mass hysteria, in any of its forms, is how it is perceived and understood publicly. There is a disconnect between the way mass psychogenic illness is defined and discussed by the small number of experts who study it and how it is understood outside those circles. In the medical field, it is regarded as a disorder that arises from group interaction and, as such, is sometimes, perhaps more appropriately, referred to as mass sociogenic illness. That makes it a social phenomenon rather than a truly psychiatric disorder. Unfortunately, in less expert hands, it is largely presented as a psychological problem, with all the focus on the individuals affected, and the essential role played by the community is almost entirely ignored. In its public persona, mass hysteria has become so attached to old-fashioned stereotypes, one-dimensional hypotheses of psychological trauma and clichés about young girls that portrayals of it have almost entered the arena of parody (256-7).
Aside from the fact that the clichés associated with mass hysteria are very demeaning to young women, they have the added effect of making the diagnosis untenable for social groups that do not fit easily into them. In both Cuba and Krasnogorsk, where the victims were older and some were male, the doctors rejected an MPI diagnosis outright and strongly supported the people’s own formulation of what was causing their illness. They simply could not reconcile an MPI diagnosis with the type of people involved in those outbreaks because they were nothing like “hysterical” young women. There is an irony in the way the people involved in the Cuba and Krasnogorsk events were portrayed, as opposed to the people in the school outbreaks: their stories actually fitted best with mass motor hysteria. Since that form of the condition is more likely to occur in individuals who are under psychological strain-as opposed to mass anxiety hysteria, which does not-one might argue that it was the two older, mixed-gender groups who would more accurately have been referred to as “stressed.” And yet, the doctors and authority figures involved in those cases refused to acknowledge such a thing. It was only the schoolgirls-not the older people, not the men-who found themselves minutely examined for signs of being psychologically disturbed and who were repeatedly referred to as “stressed.” If it was necessary at all, the opposite would have been more appropriate (257).
The conflation of the medical disorder with frenzied, panic-stricken, emotional behaviour makes the medical diagnosis even harder to relate to for those affected- because, while they are aware of anxiety, it is the physical symptoms that dominate their experience. The El Carmen de Bolívar girls lost consciousness and had seizures. The people of Krasnogorsk fell asleep. Neither group felt especially emotionally overwrought.
It is also important to note that mass anxiety hysteria doesn’t only happen in schools and doesn’t only affect teenagers. It’s likely that schools are particularly vulnerable to this disorder because they group people very closely, restricting their rights and limiting their autonomy. Young people’s brains are still developing and the adolescent years are those in which peer pressure is felt most keenly, making schoolchildren at higher risk of social contagion. In the past, convents were also common sites for mass hysteria for the same sorts of reasons. Young women were isolated and subjected to extremely restricted lives, which is the atmosphere which fosters MPI (259).
It is likely that, at the beginning of the outbreak, one of the girls began to genuinely suffer from a disorder like Tourette’s, and that the social contagion to which teenagers are vulnerable created the spread of tics within a friendship group. Responsibility for the subsequent evolution of the crisis, however, lies firmly at the feet of the media. In fact, it was withdrawing the girls from the media spotlight that finally saved them and the town. The authority figures in the USA ultimately proved to hold more sway than those in Colombia could hope to. The neurologists looking after the girls took a firm stance and avoided being pressurized into pursuing an alternative diagnosis that they knew didn’t exist. They condemned the media intervention and did their best to dispel the toxin theory and support the diagnosis of conversion disorder. The girls and their families were strongly encouraged to step back from the publicity and to eschew the involvement of outsiders. As soon as they did, the symptoms began to disappear and the residents of Le Roy, unlike El Carmen, could consign this story to their past (262-3).
“The sickness” in Sand Creek probably arose out of deep spiritual beliefs and social factors specific to the region, with the triggering event being the disruption created by the change in the educational system. When the outbreak began, the village created a narrative to explain it that fitted their belief system. Living in Sand Creek, Courtney gained an appreciation for the community’s way of life and learned to see their story in an informed way. Mass hysteria was a diagnosis that could only have come from someone who didn’t speak the social language of the Wapishana.
“The sickness” could not be unravelled without understanding the traditional ways of the region. Kinship structure, relationships, learning and spiritual beliefs for the Wapishana differ in vital ways from those of the West. To the Wapishana, family is created by proximity. Sharing space and food brings people together, and living with somebody makes them kin. Courtney became a daughter to the family with whom she lived, just by being in their home and taking part in family life. Since actual physical closeness is so integral to kinship, it follows that prolonged separation from biological family threatens kinship. Western cultures place value on independence, but the Wapishana are seen through the prism of their social relationships. It is through someone’s personal relationships that they come to know themselves, and that they are known by others. For this reason, people very actively circumvent interpersonal conflict to protect their relationships (263-4).
By Western medical classification, Krasnogorsk’s sleeping sickness, El Carmen’s seizures, Le Roy’s tics, Cuba’s Havana syndrome and Sand Creek’s sickness all amount to more or less the same medical problem: mass hysteria. A complex, tangled web of social, environmental, medical and psychological factors created the specific symptom trajectory for each group, but this web was reduced by many to contagious panic, fear, anxiety and psychological fragility. As such, the diagnosis was rejected. The characteristics that made each outbreak a distinct entity were lost by this classification. The greatest difference between these mass events was not in the people affected, it was in the society in which they lived. It is the social differences that are key to understanding the cause of and suggesting a solution to mass sociogenic illness.
Mass hysteria is a magnified version of all that is wrong in the way we perceive and discuss psychosomatic and functional disorders. Stereotypically, the condition is rejected as a diagnosis for men and caricatured for young women (271).
8. Normal Behaviour
Hwa-byung has cultural meaning to Korean people that a Western doctor would have difficulty appreciating. It affects middle-aged women in particular, and is associated with the stress induced by marital conflict and infidelity. Like grisi siknis, hwa-byung is a language of distress, understood by the community that speaks that language. The specific symptoms are not meant to be taken literally; they are a metaphor for a particular type of psychological suffering. Hwa-byung is an acceptable way of asking for support.
The DSM-V, the psychiatry bible that catalogues mental disorders, only specifically names culture-bound syndromes belonging to communities that do not have English as their first language-susto, shenjing shuairuo, khyal cap, nervios, dhat. Cultural concepts of distress are defined as the ways that cultural groups experience, understand and communicate suffering, behavioural problems or troubling thoughts and emotions. So, if the DSM-V does not specifically name any culturally defined disorders that originate in English-speaking, industrialized, Western communities, does that mean we don’t have culturally shaped illness? Are we so open about our suffering that we have no need of metaphors?
Some Western cultures do have medical complaints that are unique to them. In France, there is a condition referred to as les jambes lourdes- meaning “heavy legs”-that is not commonly seen in other countries. The medical literature for this condition is almost exclusively in French. It is attributed to venous insufficiency, which is believed to lead to fluid pooling in the legs, resulting in heaviness and swelling. Apparently, if a person goes to a pharmacy in France and reports having heavy legs, they will be directed to a shelf loaded with products said to alleviate the symptoms. One commercial website selling a variety of creams and gels for les jambes lourdes says it affects up to one in three women. And yet, “heavy legs” does not exist as a disease category in the UK.
Les jambes lourdes would not be referred to as a folk illness or culture-bound syndrome in France, because these are terms more often used to label people outside of one’s own cultural community. It is very difficult to either spot or talk openly about the cultural idioms within one’s own society, partially because they are not recognized as such, but also because they are presented as biomechanical illnesses and to say otherwise risks forcing something that is being hidden for a purpose into the open (273-4).
I described dissociation and explained it as something to which we are all prone, especially when overloaded or distracted by life’s problems. It’s the moment you can’t take in anything your partner is saying because your head is too full of other thoughts. It’s forgetfulness on a bad day. It’s dizziness in a stressful situation. It’s the time you couldn’t concentrate enough to follow a simple instruction. I explained that normal psychological processes like dissociation serve a vital purpose in life: they stop us from becoming overwhelmed and, in some people, protect against painful thoughts. However, dissociation, like every other bodily function, can go wrong, and, when it does, it can stop being normal and become a problem (284).
She had only come to me to discuss the possibility of epilepsy, but if she could accept the blank spells were a manifestation of dissociation, perhaps she could see that at least some of her other medical complaints might have a similar cause. Dizziness is a very common symptom of dissociation, and her experience of poor sleep had been objectively contradicted by the tests (285).
It was becoming clear that many of Sienna’s medical complaints had a functional (psychosomatic), rather than pathological, cause-the tests had supported a functional diagnosis for her blank spells and for her inability to stand in the morning. The normal polysomnography, which contradicted her experience of her own sleep quality, suggested that hypervigilance to small arousals had led her to develop undue concern about her sleep. It made sense that these problems were related. They gave a single unifying diagnosis, rather than lots of unconnected diseases. I feared that, if her tendency to develop functional neurological problems and accumulate disease labels was not adequately addressed, it could be progressive. I have seen many people with a story that started out like Sienna’s ultimately develop serious long-term disability (287-8).
Over thirty years of working in Western medicine, I had learned to comply with the increasing need to label everything as if it was an illness, but deep down I believed that this did many patients a disservice. If I had been more truthful with Sienna, I would have said I thought her symptoms indicated a difficulty coping with escalating academic pressures. I would have said they were not an illness, but a sign that the life she had chosen was impacting negatively on her. If she was struggling to achieve her goals, maybe they were the wrong goals. But, in Western society, when things are going badly for a person, medical explanations are often sought because they are found to be more palatable than psychosocial explanations. Western medicine has, in a sense, learned to comply with the needs of the people. Thus, the lines between behaviour and illness, normal and abnormal-even the demarcation between disease and health-have become so blurred that it is possible to give an illness category to almost any person. Once that is done, a person becomes a patient (290).
I had concerns about Sienna’s diagnosis of PoTS and joint hypermobility, since both diagnoses are open to potential over-diagnosis and neither had helped alleviate Sienna’s symptoms-the opposite, in fact: she had embodied the labels and her symptoms had increased.
PoTS is a disorder that rarely has objective pathology to prove it exists. In its severe form-in those patients well outside the normal range and therefore unequivocally sick-it has been attributed to a fault in the autonomic nervous system or connective tissue. However, it is the grey zone of the milder form that concerns me here, because those cases have no proven pathology (299).
Knowing she had PoTS brought Sienna’s body into her awareness. She looked up the common manifestations of her new medical problem and unconsciously enacted them. She noticed dizziness to a much greater degree and became aware of her heart rate. She began to pick symptoms out of the white noise and to worry about them. A template in her brain told her that standing could lead to collapse. Predictive coding and prediction errors began to confuse her nervous system. She began to avoid standing because of how unpleasant it felt. As internal and external feedback loops combined, her body became deconditioned, increasing her symptoms. She inadvertently trained her body into coping less well with standing. In return, the increased symptoms increased her fear, and so the cycle went on.
The concept of PoTS was first described many decades ago, but the diagnosis only entered mainstream medicine in the 1990s. It is now an incredibly common diagnosis in young women. A condition that didn’t exist thirty years ago is now said by some to affect one in a hundred people in the US. What happened to those people before the PoTS diagnosis existed? I strongly suspect that, thirty years ago, Sienna would simply have been told she had a tendency to faint. She would have been given exactly the same treatment advice that she was given for the treatment of PoTS-stay hydrated, eat a high-salt diet and stand up slowly-but without the label. Not offering a diagnostic label does not mean inaction or dismissal. When you avoid a label, you avoid offering somebody a sick role, with all the negative consequences that can come with it. I suspect that-for Sienna-this strategy would have been considerably more successful (300-1).
The diagnoses are not a problem for those who respond to them by making positive changes that lead to an improved quality of life. But they could be a big problem for many young people with a tendency to embody medical concepts in a way that promotes disability instead of alleviating it (302).
Western medicine’s love of drawing people into diagnostic categories and applying disease names to small differences and minor bodily changes is not specific to functional disorders-it is a general trend. Pre-diabetes, polycystic ovaries, some cancers and many more conditions have all been subject to the problem of over-inclusive diagnosis. My biggest concern in this regard is the degree to which many people are wholly unaware of the subjective nature of the medical classification of disease. If a person is told they have this or that disorder, they assume it must be right. The Latin names we give to things and the shiny scanning machines make it look as if there is more authority than actually exists. To a certain extent, Sienna pursued each diagnosis she was given, but other people have diagnoses thrust upon them, having no idea that there might be anything controversial about it-and having no idea that they have a choice (305).
Sometimes, illness is a sign that the life we have chosen for ourselves is not the right one, but Western culture doesn’t make it easy to acknowledge that. There is an increasing tendency for people to seek a medical reason to explain why things are not working out. I suspected that Sienna’s dissociation was her body’s way of telling her that her life choices were not suited to her. Westernized values put people at risk of judging themselves to be failures if they do not meet society’s measure of success. More and more people are seen to lack-or believe they lack-what they perceive to be the right personal characteristics, and they then seek medical explanations to account for it (310-11).
Specialist doctors in Western medicine also take symptoms very literally. Family and community doctors are better at seeing the whole picture, but hospital-based doctors can investigate single symptoms in an entirely non-holistic way, and then discharge their patient without help, if their tests are normal. Hwa-byung, grisi siknis and resignation syndrome are culturally specific languages of distress. The symptoms have meaning beyond the organs involved. A chest pain doesn’t necessarily mean a heart problem. Western doctors have trouble tuning in, or at least in knowing how to respond, when something in the picture doesn’t fit the disease pattern they are trained to treat.
We in the West also live in a culture that prizes happiness so highly that anything less risks being classed as abnormal. We medicalize and commercialize human suffering. Anglo- American cultures tend to conceptualize depression as physiological and psychological, whereas other cultures regard it as situational (312).
In writing about the cultural variation in the clinical presentation of anxiety and depression, the psychiatrist Laurence Kirmayer points out that the vast majority of people in the world do not consider depression to be psychiatric, and therefore conventional psychiatric approaches cannot possibly help them. In the UK, I have often heard people refer to their own low mood in terms of low serotonin levels, but evidence shows that ethnic minorities are more likely to regard the same sort of feelings as a consequence of life events, rather than being physiological or related to their mental health. Medical papers suggest a keenness on the part of Western medicine to draw people into our classification system, referring to mental-health issues as under-recognized in minority groups. The DSM is a culture-bound document, but the medical establishment is keen to apply our rules to other people because we assume our evidence-based, scientific approach to be superior. The problem is that the evidence base does not represent the majority of the world’s population. The bulk of mental-health research is done on white, educated people, living in industrialized, wealthy countries. The groups on which we are keen to impress our system of medicalization are not represented (313-4).
In describing cultural differences in the approach to grief, Laurence Kirmayer gives an example from Latvian culture in which the grieving person is advised to “bury their suffering under a stone and step over it singing.” Australian Aboriginal people feel a deep connection to the land. They cannot be healthy unless the land is healthy. Western medicine doesn’t care about the Latvian or Aboriginal perspective. It may work for us, or maybe it won’t, but it shouldn’t be assumed to be appropriate for everybody (316).
Epilogue
For many of the people I met, psychosomatic illness served a vital purpose. Seizures solved a sociocultural problem for the Miskito and Wapishana people. In Krasnogorsk, a sleeping sickness did the same. Psychosomatic and functional disorders break the rules of every other medical problem because, for all the harm they do, they are sometimes indispensable.
There are simply not enough words to express everything a person feels. The complexity of human emotions cannot be distilled into something rational and well thought-out for every person in every situation. Cognitive dissonance exists, as do moral dilemmas, inconceivable choices, inequality and despair. Life will always find a way to set traps that seem impossible to escape. People are not machines, making decisions from algorithms, logical and free of emotion, so perhaps we need release valves and coping mechanisms, face-saving ways of addressing conflict and grappling with ambivalence. Sometimes, embodying and enacting conflict is either more manageable or more practical than articulating it (320-1).
As with any other medical disorder, psychosomatic and functional disorders arise through physiological changes and that should never be underestimated. In the face of an onslaught of information, the brain is in a constant state of predicting, discarding, assessing and reassessing, drawing inferences and learning. Like cells that grow too fast and become cancerous, or organs that produce too many hormones, unconscious psychological processes are fallible and they get things wrong-all the time. Functional neurological disorders are the brain’s coding errors. They are the neural circuits’ dysfunctional response to a change in behaviour. They have numerous triggers, only some of which are related to psychological distress. They can be a response to injury, disease, false medical beliefs, hardship, conflict, contagious anxiety. Disability develops through a process akin to learning. But brains that have been programmed can be unprogrammed, so that should never be an irreversible process (323).
Preface: The Mystery Illness
Up to a third of people attending any neurology clinic have a medical complaint that is likely to be psychosomatic in nature-meaning real physical symptoms that are disabling, but which are not due to disease and are understood to have a psychological or behavioural cause. Paralysis, blindness, headache, dizziness, coma, tremor, or any other symptom or disability one can imagine, has the potential to be psychosomatic. And, of course, it’s not just a neurological phenomenon; any organ in the body can be affected and almost any symptom can be generated in this way-skin rashes, breathlessness, chest pain, palpitations, bladder problems, diarrhoea, stomach cramps, and on and on (2).
What was once called “hysteria” is now referred to by some as a conversion disorder, or, more recently and more aptly, as a functional neurological disorder (FND). In most medical specialties, the term “psychosomatic” is still used to indicate medical problems in which the bodily symptoms are thought to have a psychological cause. However, in neurology, the word “functional” has increasingly replaced “psychosomatic.” “Functional” is considered preferable because it indicates that there is a problem with how the nervous system is functioning, while disposing of the prefix “psych,” which is too often (wrongly) distilled to mental fragility, or even madness, in people’s interpretation. “Functional” implies a biological problem, but without the assumption of the presence of stress that has existed in all previous versions of these types of disorders. It leaves open the possibility that emotional trauma is not the only means by which psychological processes can affect the functioning of the brain to lead to disability.
Both psychosomatic disorders in the realms of general medicine and functional neurological disorders in neurology are incredibly common and have the potential to be very serious medical problems. Yet people aren’t always aware of that, because, in the public arena, they can be very hard to spot, hidden as they are behind euphemisms, clichés and misunderstanding. That is aptly demonstrated by FND’s media portrayal, where it is commonly referred to as a medical “mystery” (4).
There are a great many unanswered questions in the field of psychosomatic medicine, but just as many exist for hundreds of other neurological problems. Yet it is mainly FND, and psychosomatic disorders in general, that still have to fight to shake off centuries-old formulations in order to be seen as legitimate medical conditions (7).
In 1977, the US psychiatrist George Engel criticized the tendency for doctors to view illness in solely or predominantly biological terms. In a paper published in the medical journal Science, he reminded the medical profession that behaviour occurs in a context, and therefore people should never be viewed out of that context. He suggested a new medical model, which he called “biopsychosocial medicine.”
Every medical problem is a combination of the biological, the psychological and the social. It is only the weighting of each that changes (8).
1. The Sleeping Beauties
That’s how modern medicine works: disease impresses people; illness with no evidence of disease does not. Psychological illness, psychosomatic and functional symptoms are the least respected of medical problems (19).
Resignation syndrome is not indiscriminate. It is a disorder that exclusively affects children of asylum-seeking families. These children were traumatized long before they fell ill. Some were already showing very early signs of illness when they arrived in Sweden, but most only began to withdraw when their families were faced with the long process of asylum application (20).
2. Crazy
It was a medical problem, but not the same as asthma or cancer or diabetes. What was absolutely clear was their expectation that, if you took a person with grisi siknis to a hospital doctor, even in Nicaragua, they would say that it was a psychological problem, but wouldn’t offer any treatment. In the view of the people around the table, that made the doctor’s opinion useless. But the local healer’s treatment was curative, so, when someone succumbed to the condition, the family typically called the healer and the pastor.
Maria went to a cupboard and got a small plastic bottle filled with clear liquid. She opened it; it smelled of overripe fruit.
“Florida water-this is part of the treatment.” Florida water is a perfume that some say purifies the spirit.
She then went to the utility room and reappeared with a small plastic bag filled with a blue powder that she said could cleanse a person of the sickness. She also brought a container shaped like the Virgin Mary, full of holy water. When I was growing up, these featured in every Irish home I knew. My family had been given one by somebody who had been on pilgrimage to Lourdes, where the Virgin Mary was said to have appeared. Maria told me that holy water was mixed with Florida water, along with the blue powder, lemons, garlic and a variety of herbs. The grisi siknis sufferer was then doused in the concoction. Many get better very quickly with this treatment. Sometimes the illness lasts months, but the vast majority recover completely.
“The devil is looking to be warm, so he enters the girls,” Anthony explained (54-5).
During my trip to Port Arthur, Mario said to me, “Miskito-if they have four stories, they will only tell you three.” Somatic (bodily) symptoms that have a psychosocial cause have something in common with that description. There is a story being told by the symptoms, but, while the physical manifestations may be explicit, the complex factors that led to them are not so easy to see. The Miskito were warm and welcoming, and willing to be asked and to answer anything, but, to understand the disorder in a more academic way, I met a doctor of anthropology who had studied grisi siknis and had written a thesis about it (57).
“The Miskito’s classification of illness is very complex,” she told me from the outset. “Europeans who hear about demons and spirits sometimes assume that means that they are 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 exteriorize conflict” (58).
Grisi siknis is influenced by the stories told about it. During Madda’s stay with the Miskito community, she became part of the narrative. In the early days of interviewing people about the condition, she found some were reluctant to describe the experience in detail. She hit upon the idea of asking them to draw a picture representing their experience instead. They resisted at first; pictures of the duende are said to have magical properties and could make other people sick. However, some agreed, and one day a mother remarked that the picture had the effect of drawing the demon out of her child. This discovery moved Madda from the role of ethnographer to shaman-a role she was at first reluctant to accept.
“I told them I had no medical training. I couldn’t be responsible for that.”
But when some people were cured by the act of drawing, she continued with the practice. She showed me some of the pictures. Most were of strange, stick-thin, faceless figures, all wearing hats. Some had oddly shaped or absent thumbs. The duende wears a hat, has only four fingers, and his or her face cannot be shown because it is believed that puts those who see it at risk of catching grisi siknis. One picture showed an armadillo, an animal associated with the demon. Another displayed the spirit with a stomach swollen with blood. Stomach parasites are common in Nicaragua, and stomach complaints can be a trigger for grisi siknis: the sufferer catches the infection and mistakes it for the onset of grisi siknis, which can also begin with abdominal pains. The assumption that they had contracted grisi siknis could cause a person to anticipate seizures, and that could trigger dissociation, causing dizziness and ultimately fulfilling the person’s expectation. So a medical illness could also be the inciting incident for the syndrome; it does not require psychological distress or conflict to be present (63).
Illness is a socially patterned behaviour, far more than people realize. How a person interprets and reacts to bodily changes depends on trends within society, their knowledge, their education, their access to information and their past experience of disease. Personal and societal role models create expectations of health and ill health that are coded in neural substrates. Our brains are wired through experience to respond in a certain way to certain provocation. It is an unconscious process (66).
3. Paradise Lost
Interpreting a medical history through a translator is a frustrating process for a doctor. The nuance of the symptoms is lost, and I was struggling to understand exactly what had happened to Tamara. In psychosomatic illness, the devil lies in the small details, in the turn of a phrase. This sleeping sickness, like resignation syndrome, was also geographically contained, affecting only two neighbouring towns, Krasnogorsk and Kalachi. Culture-bound syndromes are often a metaphor for something that cannot be expressed in a more explicit way within a certain community. Grisi siknis allows girls to express themselves in a society that imposes conflicting values on them. Resignation syndrome gives a voice to the voiceless. If the sleeping sickness was psychosomatic, what was it about these two small towns that had created it (89)?
Frustrated, I asked Dinara to tell me precisely what words Tamara had used to describe how the illness felt. Dinara asked her to describe it again.
“She said it is like a person becomes a trained reflection of themselves. The body can be awake, but the brain is not, so the person’s understanding of the world is paralysed.”
Tamara had done her make-up and fixed her hair before she went to hospital-in that moment, she was an echo of herself (89).
It seemed the disorder had a very wide range of forms. Some people lost the ability to walk or talk, but didn’t sleep. Acting on automatic was a common manifestation. A person could appear to be asleep, but then they would wake, suddenly answer a question entirely appropriately, and then fall straight back to sleep again. The illness affected men, women and children. It could last a day or several weeks. Unlucky people had recurrent bouts (91).
Five years had only seen an evolution in symptoms. This is absolutely typical of a psychosomatic disorder: it evolves over time as its story is retold by each new person affected. I had seen that evolution in the stories of grisi siknis, where each generation added new elements and interpretations. In the case of Krasnogorsk’s sleeping sickness, different people experienced it differently, and in children it was wildly different from how it manifested in adults, almost as if they had another problem entirely. Doctors’ and scientists’ investigations into the matter had been fairly exhaustive, yet they found no objective proof of a toxin or a virus, and none of disease. Of course, Tamara might argue that the investigations were carried out by the government, and she didn’t trust them. I had already learned during my brief stay in Nur Sultan that there was some justification in her mistrust. Still, it seemed the government hadn’t used Krasnogorsk for anything after the people left, so it was hard to see what they had gained, if the accusations were true. A psychosomatic condition seemed inescapable, to me. The symptoms and disabilities made no anatomical or physiological sense. The outbreak was inconsistent with disease. I thought of the convulsing and hallucinating schoolchildren that Tamara had mentioned. In Nicaragua, they would have been told that they had grisi siknis, but, in ex-Soviet Kazakhstan, spiritual explanations didn’t exist, whereas toxic mines and devious governments did (97-8).
An alternative explanation to radon was carbon monoxide poisoning, which certainly causes drowsiness, dizziness and unsteadiness, and could lead to coma. Chronic low-level poisoning would also be hard to detect. But once in hospital, away from the source of the carbon monoxide, and treated with oxygen, the sufferers should have woken fairly quickly, unless they had significant brain damage, which they did not, as was proven by the normal scans and EEGs. Even when in hospital, some slept for days or weeks. What’s more, carbon monoxide collects in poorly ventilated spaces. It affects miners inside the narrow confines of working mines, not outside in the open air. And there would be no reason for carbon monoxide poison to have an increased chance of poisoning people at group events, which was a big feature of the sleeping sickness. Nor would it explain some of the odder features of the illness-acting on automatic pilot, crying uncontrollably, thrashing limbs. Also, where did the carbon monoxide suddenly come from in 2010, and where did it disappear to in 2015? Fear of a uranium mine was very legitimate, but that avenue had been investigated and thoroughly ruled out. Suspicion of a government that controls social media and serves its own purpose was also entirely reasonable, but still the conspiracy theory didn’t hang together (103-4).
While talking about all that Krasnogorsk had subsequently lost, Lyubov didn’t seem upset. She had weathered the downturn in fortune without complaint and it hadn’t dampened her love affair with the place. I wondered if it was because she thought the hard times were temporary. Maybe the people who stayed were waiting, expecting the mine to reopen, the water to be turned on, the shops to be restocked, for everything to go back to how it had been. The structure of the town still stood; nothing irrevocable had happened (112).
The worst outcome for many patients with a psychosomatic or functional disorder can arise when the doctor insists that a particular life event is the cause of the patient’s symptoms, and the patient insists it isn’t. The two are immediately at odds, with no chance of moving forward. Freud’s association between the development of conversion disorders (as functional neurological disorders used to be known) and a history of sexual abuse has been particularly problematic for patients, since it still lingers in the heads of many doctors, and patients can find themselves seemingly accused of denying abuse they know never happened. A proportion of people with functional neurological disorders like dissociative (psychosomatic) seizures have suffered abuse, but a larger proportion have not. Almost as bad is when there isn’t an immediately obvious stress-induced trigger, and doctor and patient respond by setting off on a futile hunt for something that either doesn’t exist or is too motley to be easily distilled into a simple case of cause and effect. For many people, the development of symptoms is not about a specific traumatic event, but rather is related to embodied expectations, beliefs and stories (114).
If one believes, as I do, that the Krasnogorsk sleeping sickness is a psychosomatic phenomenon, then there are a large range of both personal and societal influences that have come together to produce the disorder and propel the outbreak forward. Hardship was not irrelevant, but, as all the people pointed out, they had weathered that without difficulty for more than a decade. It was not the key driver of the illness outbreak. Much more important was the highly unusual town in which these people lived, and their deep-and perhaps surprising-love for that town. Also important was Krasnogorsk’s geopolitical position, first in the Soviet Union and later in independent Kazakhstan, as well as the political atmosphere of Kazakhstan and, finally, the media response to the reports of the sickness. Theirs was not a tale of people made unhappy by deprivation, but one about a group torn apart by the difficult realization that they would eventually need to abandon the homes they loved. The sleeping sickness helped them make a very difficult step.
There was no template in the Kazakh culture for sleeping sickness. It was a finite medical disorder, confined to a small close-knit community. In so-called “culture-bound syndromes” like grisi siknis, the ideas from which symptoms are drawn exist endemically in the population; in Krasnogorsk, it was created afresh. The scene was set by Lyubov. The first person to develop symptoms in a mass outbreak may have the same symptoms but a different final diagnosis from those who follow. I strongly suspect, based on her description, that all of Lyubov’s symptoms were psychosomatic from the outset, but it is possible that it could have been carbon monoxide poisoning, as others have suggested. The group of people who became drowsy and unsteady at the spring festival could have been poisoned. A bad batch of vodka would certainly explain their symptoms. The problem came when Lyubov’s illness was connected to the spring- festival incident, at which point a rich narrative began to develop around the illness. With anxiety planted in a community under pressure, others who noticed some bodily change unconsciously looked to Lyubov’s experience to know what symptoms to expect. They embodied those expectations (115).
4. Mind over Matter
Dr. Olssen asked the boy if he felt okay. He replied in Swedish and she translated, telling me that he was complaining of headaches and dizziness. She talked to him again and he said he was sleeping badly and having nightmares. I wanted to tell her to stop asking him about symptoms; he lived in a confined space with two chronically ill sisters and, since illness is passed on through proximity, expectation and embodiment, I was worried for him (130).
In the medical field, the term “organic” is generally used to refer to a pathological change in an organ, while “non-organic” refers to a disorder that has a psychological cause. I don’t have strong feelings of disagreement when those definitions are used as guidelines; however, I recognize they have become problematic because many people, both medical and non-medical, extrapolate the “organic” and “non-organic” division into meaning that symptoms are either “real” or “not real.” Therefore, someone who has a stroke is referred to as having an organic brain disease, and they are considered to be “really” paralyzed, whereas somebody who has a psychosomatic or functional disorder is considered to have a psychological problem, and so they are not “really” paralyzed. With that sort of interpretation of what it means to have a psychosomatic (functional) disorder, is it any wonder that people reject the diagnosis?
Whatever you call these disorders-functional, psychosomatic, biopsychosocial, conversion, non-organic-they all arise as a result of physiological mechanisms that go awry to produce genuine physical symptoms and disability. Although they are often explained by a simple cause-and-effect model between stress and physical symptoms, there are actually a multitude of mechanisms through which they can develop. They are a manifestation of the interplay between the body and the higher cognitive and social processes that create the “mind.” While there may be no disease present in terms of a pathological structural change, there are physiological abnormalities created by such brain and bodily functions as predictive coding, dissociation, stress hormones and the autonomic nervous system (141).
5. Horses Not Zebras
I can’t know for sure what caused patient zero’s acute onset of dizziness, hearing impairment, tinnitus, loss of balance and fatigue, but they did associate their symptoms with hearing a sound. From this, three possible scenarios can be postulated.
First, patient zero was actually attacked by a noxious agent and, whatever form the attack took, there was an associated sound. Attacks on agents and politicians are well attested, and, while the sound could not have been the medium for damage to the nervous system, it could have been a by-product of some other sort of attack. I don’t favour this explanation, but it is entirely within the bounds of possibility.
Second, patient zero could have developed an illness for any of a dozen other reasons, and, in searching for an explanation, they remembered having heard an odd sound. Our brains hate chaos; we always want to know why something happened, and it’s human nature to search recent experiences for that explanation. People with a newly diagnosed disease often hit on the memory of a recent minor injury or some kind of environmental exposure on which to pin the blame, when, really, many diseases occur just by chance. A person will hear a lot of unexplained sounds in their lifetime, but they are more likely to recall the odd sound they heard shortly before they developed a significant illness. This is called recall bias, in which small things that happen just before a major life event take on much greater significance than they deserve. In this scenario, the sound was a coincidence that took on prominence through recall bias.
The third possibility is that patient zero’s illness was functional from the start, created by the anxiety of a suspected attack. If that person was in a position to think they were at risk of attack, then hearing a sudden sound might have worried them enough to provoke them to search their body for injury. Bodily changes are always available to notice, if we look for them-it’s that white noise again, creating a constant pool of physical symptoms which we usually disregard. A sound would draw attention to the ears, making the head the focus of the symptom pool (162-3).
Between December 2016 and August 2017, the events in Cuba were kept out of the press, but there was considerable internal medical and political response. In February 2017, there were enough cases for it to be considered an outbreak, which is when Dr. Hoffer became involved. He was not only an ENT specialist, but was also ex-military, with expertise in blast injury. He flew to Cuba to examine the victims, and those most severely affected were later flown to Miami, where he investigated them further. It was his team that was first to suggest a diagnosis of traumatic brain injury. He found evidence of inner ear damage, but since that couldn’t account for all the symptoms, he suggested the embassy staff affected must also have brain damage. The team published their account of the phenomenon in a journal that Hoffer also edited, Laryngoscope Investigative Otolaryngology. As with the JAMA paper, this account took the “energy attack” as a truth, with the stated purpose of the academic paper being “to describe the acute presentation of individuals who experienced neurosensory symptoms after exposure to a unique sound/pressure phenomenon.” While advising caution in coming to any definitive conclusion, and agreeing that the cause of people’s symptoms was unknown, the authors also said, “It would be imprudent to exclude any potential directed or non-directed energy sources at this time.” They went on to speculate on a number of ways a sound weapon could have caused the symptoms and, while acknowledging that their publication served only as a description of the victims’ experience, they also stated that the symptoms were very like those caused by “traumatic brain injury following blast exposure or blunt trauma.” This paper was published two years into the outbreak, after the intelligence agencies had searched for and found no evidence to support an energy weapon. Diagnosis of blast injury requires that a person be in a blast, but even the fact that there was no proof of such a precipitant did not put anybody off the single-minded assumption that that was what had caused the victims’ symptoms (182).
6. A Question of Trust
People told her that she had convulsed, then she lay still for a while, as if asleep. When she woke up, she was crying. It is very common for people to cry in association with dissociative seizures. Like Lyubov, Juliet did not find it easy to connect this ordinary physical indicator of upset with its most common cause.
“Do the seizures have a pattern?” I asked.
She thought for a while before saying, “They happen when I think too much.”
So many of the girls associated their symptoms with anxious thoughts, but they then overlooked the importance of that and searched for alternative explanations (212).
The emphasis on poverty and potential abuse had irked everybody. The view that dissociative seizures are always due to abuse, psychological trauma or psychological suffering is limited and old-fashioned. Despite the fact that the illness was sweeping through the town, and not unique to Juliet, the psychologist had focused attention on her family and her personal life, which had alienated her. On the biopsychosocial spectrum, the outbreak in El Carmen was predominantly a social one. It was less about individuals and more about group dynamics. It was about a government that people didn’t trust, a flawed healthcare system and people’s isolation from the outside world. Rumours were spreading through the town and the families had no easy way to filter truth from lies. That Juliet had found discussions about her family unhelpful was not surprising.
The good news was that Juliet was better. She had managed to find ways to overcome her symptoms, teaching herself techniques to stop the seizures, such as by closing her eyes and telling herself to calm down when she felt the warning signs. Although this worked, Juliet was scared that it wouldn’t work forever, echoing Frida’s concerns that the illness lay dormant inside her.
We talked for a while about dissociative seizures. In a third of cases, they get better just through having an open discussion about how and why they manifest. Mechanisms like predictive coding and the embodiment of illness templates create disability through expectations, but they can also heal. Juliet had found ways to manage her seizures, and positive expectations could help her to sustain that (214-6).
What was odd was that Marcela, Yesmid’s mother, had started to have seizures too. “I was overwhelmed. I still am,” she told me, when I asked why she thought it happened to her. She blamed stress for her seizures.
I blundered in, as usual: “But if your illness was triggered by stress, don’t you think that could also apply to your daughters?”
“No,” Marcela said, looking perplexed. “Why would a child have stress (217)?”
Later, I asked Catalina why she thought the families were so unanimous that stress was destroying the parents’ health, but they didn’t acknowledge the psychological impact of the circumstances on the children.
“Maybe they think they’ve protected the children, shielded them more than was ever really possible?”
We agreed they did not seem to accept the maturity and independent inner lives of the girls (217).
There is absolutely no doubt that psychosomatic disorders are more common in women, even allowing for bias. I think that is precisely why the medical community has found the disorder so easy to neglect. For centuries, women’s place in society was such that it made it easy for their complaints to be trivialized or dismissed. Attitudes like that still linger today. In the same way that careers, sports and pastimes that are favoured by women are less respected and less well rewarded than their male equivalents, this illness has been regarded as relatively unimportant. 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. It is not that the disorder is a judgemental label given to women-it is that, as a predominantly female condition, it was easy for a predominantly male profession to think it trifling.
It is worth comparing the way the El Carmen girls were discussed with how people talked about the sonic-weapon victims in Cuba. In El Carmen, the girls were accused either of being sexually frustrated or the subjects of abuse, then they were told that they needed husbands. It was suggested that they had been damaged by violence that had taken place before some of them were born (223-4).
Truthfully, nobody really knows why young women are more likely to be affected by these disorders. There are many factors, but I am convinced that their 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. The girls of the Miskito Coast were expected to live traditional, conservative lives, while also finding themselves sexualized by older men. Their choices in life were limited. Young women everywhere are told they are equal, but are held back when they try to assert that equality. Colombia has strong legislation that has attempted to give women equality, but what happens in practice is often very different.
There may also be something in young women’s physiology that makes them more vulnerable to functional disorders, which is nothing to do with stress, psychology or society. The frequent bodily changes that come with cyclical hormones might create more abundant white noise, which young women have to learn how to decipher. A tendency to lower blood pressure and thus to fainting would certainly act as a trigger for dissociative seizures. Women may be physiologically more vulnerable in a healthcare system with a tendency to view the physiological differences of women as weakness rather than biology. The fainting and swooning of women in the 1800s probably had more to do with tight corsets, inactivity and innate low blood pressure than with psychological frailty, as was sometimes implied. Similar judgements still exist when it comes to period pains, the menopause and other female-only medical problems (224-6).
A simple mass fainting episode had been turned into a protracted medical and social problem by fear-mongering and disinformation. It had also been stoked by poor communication of the diagnosis. They had been given the correct diagnosis, but had not understood it. How could the girls get better if they believed they had been poisoned? How could they accept a functional cause for their symptoms if that was taken to mean they were crazy? I didn’t think the girls had psychological problems. It seemed to me that the solution lay with the parents and the community, not the girls (228).
7. The Witches of Le Roy
More than most medical problems, this one seems unable to escape being weighed down by cliché and long-ago debunked theories. A particular issue is that the disorder is inevitably seen as arising from inside the person as a result of some fragility belonging to them, when actually that is not typically the case. In fact, a true mass-hysteria outbreak says much more about the society in which it occurs than it does about the individuals affected (237).
The press furore around Le Roy lasted weeks, but in the end this town and these girls turned out to be much luckier than the people of El Carmen, because their story did have an ending. After an intense period of escalating symptoms, the total number of victims stopped at around eighteen, following which the severity of the tics and convulsions began to recede. However, the whole event had gone on for far longer than mass hysteria outbreaks usually do, and the reason for that, and for the ultimate resolution, was, to my mind, sociocultural, not personal. The media frenzy, the misrepresentation of conversion disorder, the public stigma associated with biopsychosocial illness and, more than anything else, the atmosphere in which opinion was given the same weighting as fact-all these factors had stoked the worst of the hysteria in Le Roy. And yet, the story of the town was steadfastly presented as a psychological problem belonging to the girls, as if all those outside elements didn’t exist. Only passing recognition was given to the reality of what a media- and celebrity-driven culture might have done to them. Ultimately, it was the withdrawal of the families from the many malign external influences, and the doctors’ strong stance in presenting conversion disorder as a valid and positive diagnosis, that brought the outbreak to a close (249).
Mass illness outbreaks in schools aren’t oddities or things of the past. They are not unique to any particular type of society, nor do they require a history of violence, poverty or hardship to occur. They can happen anywhere, to any sort of community, and do so on a regular basis.
Experts divide mass hysteria into two types. First, there is mass anxiety hysteria which occurs out of the blue, without any preceding stressors needing to be present. It usually affects young people and happens in contained environments, like schools. It spreads through direct contact and comes and goes in a flash (255).
The second type is mass motor hysteria, which can affect people of any age, is more insidious in onset and lasts much longer. Unlike mass anxiety hysteria it typically occurs where there is a background of chronic tensions within a close-knit community. For example, in a struggling small town in the middle of the vast Kazakhstani steppe, in a time of political uncertainty and lack of control. Or in a US embassy under pressure, among people who have a reason to be fearful.
The big problem with mass hysteria, in any of its forms, is how it is perceived and understood publicly. There is a disconnect between the way mass psychogenic illness is defined and discussed by the small number of experts who study it and how it is understood outside those circles. In the medical field, it is regarded as a disorder that arises from group interaction and, as such, is sometimes, perhaps more appropriately, referred to as mass sociogenic illness. That makes it a social phenomenon rather than a truly psychiatric disorder. Unfortunately, in less expert hands, it is largely presented as a psychological problem, with all the focus on the individuals affected, and the essential role played by the community is almost entirely ignored. In its public persona, mass hysteria has become so attached to old-fashioned stereotypes, one-dimensional hypotheses of psychological trauma and clichés about young girls that portrayals of it have almost entered the arena of parody (256-7).
Aside from the fact that the clichés associated with mass hysteria are very demeaning to young women, they have the added effect of making the diagnosis untenable for social groups that do not fit easily into them. In both Cuba and Krasnogorsk, where the victims were older and some were male, the doctors rejected an MPI diagnosis outright and strongly supported the people’s own formulation of what was causing their illness. They simply could not reconcile an MPI diagnosis with the type of people involved in those outbreaks because they were nothing like “hysterical” young women. There is an irony in the way the people involved in the Cuba and Krasnogorsk events were portrayed, as opposed to the people in the school outbreaks: their stories actually fitted best with mass motor hysteria. Since that form of the condition is more likely to occur in individuals who are under psychological strain-as opposed to mass anxiety hysteria, which does not-one might argue that it was the two older, mixed-gender groups who would more accurately have been referred to as “stressed.” And yet, the doctors and authority figures involved in those cases refused to acknowledge such a thing. It was only the schoolgirls-not the older people, not the men-who found themselves minutely examined for signs of being psychologically disturbed and who were repeatedly referred to as “stressed.” If it was necessary at all, the opposite would have been more appropriate (257).
The conflation of the medical disorder with frenzied, panic-stricken, emotional behaviour makes the medical diagnosis even harder to relate to for those affected- because, while they are aware of anxiety, it is the physical symptoms that dominate their experience. The El Carmen de Bolívar girls lost consciousness and had seizures. The people of Krasnogorsk fell asleep. Neither group felt especially emotionally overwrought.
It is also important to note that mass anxiety hysteria doesn’t only happen in schools and doesn’t only affect teenagers. It’s likely that schools are particularly vulnerable to this disorder because they group people very closely, restricting their rights and limiting their autonomy. Young people’s brains are still developing and the adolescent years are those in which peer pressure is felt most keenly, making schoolchildren at higher risk of social contagion. In the past, convents were also common sites for mass hysteria for the same sorts of reasons. Young women were isolated and subjected to extremely restricted lives, which is the atmosphere which fosters MPI (259).
It is likely that, at the beginning of the outbreak, one of the girls began to genuinely suffer from a disorder like Tourette’s, and that the social contagion to which teenagers are vulnerable created the spread of tics within a friendship group. Responsibility for the subsequent evolution of the crisis, however, lies firmly at the feet of the media. In fact, it was withdrawing the girls from the media spotlight that finally saved them and the town. The authority figures in the USA ultimately proved to hold more sway than those in Colombia could hope to. The neurologists looking after the girls took a firm stance and avoided being pressurized into pursuing an alternative diagnosis that they knew didn’t exist. They condemned the media intervention and did their best to dispel the toxin theory and support the diagnosis of conversion disorder. The girls and their families were strongly encouraged to step back from the publicity and to eschew the involvement of outsiders. As soon as they did, the symptoms began to disappear and the residents of Le Roy, unlike El Carmen, could consign this story to their past (262-3).
“The sickness” in Sand Creek probably arose out of deep spiritual beliefs and social factors specific to the region, with the triggering event being the disruption created by the change in the educational system. When the outbreak began, the village created a narrative to explain it that fitted their belief system. Living in Sand Creek, Courtney gained an appreciation for the community’s way of life and learned to see their story in an informed way. Mass hysteria was a diagnosis that could only have come from someone who didn’t speak the social language of the Wapishana.
“The sickness” could not be unravelled without understanding the traditional ways of the region. Kinship structure, relationships, learning and spiritual beliefs for the Wapishana differ in vital ways from those of the West. To the Wapishana, family is created by proximity. Sharing space and food brings people together, and living with somebody makes them kin. Courtney became a daughter to the family with whom she lived, just by being in their home and taking part in family life. Since actual physical closeness is so integral to kinship, it follows that prolonged separation from biological family threatens kinship. Western cultures place value on independence, but the Wapishana are seen through the prism of their social relationships. It is through someone’s personal relationships that they come to know themselves, and that they are known by others. For this reason, people very actively circumvent interpersonal conflict to protect their relationships (263-4).
By Western medical classification, Krasnogorsk’s sleeping sickness, El Carmen’s seizures, Le Roy’s tics, Cuba’s Havana syndrome and Sand Creek’s sickness all amount to more or less the same medical problem: mass hysteria. A complex, tangled web of social, environmental, medical and psychological factors created the specific symptom trajectory for each group, but this web was reduced by many to contagious panic, fear, anxiety and psychological fragility. As such, the diagnosis was rejected. The characteristics that made each outbreak a distinct entity were lost by this classification. The greatest difference between these mass events was not in the people affected, it was in the society in which they lived. It is the social differences that are key to understanding the cause of and suggesting a solution to mass sociogenic illness.
Mass hysteria is a magnified version of all that is wrong in the way we perceive and discuss psychosomatic and functional disorders. Stereotypically, the condition is rejected as a diagnosis for men and caricatured for young women (271).
8. Normal Behaviour
Hwa-byung has cultural meaning to Korean people that a Western doctor would have difficulty appreciating. It affects middle-aged women in particular, and is associated with the stress induced by marital conflict and infidelity. Like grisi siknis, hwa-byung is a language of distress, understood by the community that speaks that language. The specific symptoms are not meant to be taken literally; they are a metaphor for a particular type of psychological suffering. Hwa-byung is an acceptable way of asking for support.
The DSM-V, the psychiatry bible that catalogues mental disorders, only specifically names culture-bound syndromes belonging to communities that do not have English as their first language-susto, shenjing shuairuo, khyal cap, nervios, dhat. Cultural concepts of distress are defined as the ways that cultural groups experience, understand and communicate suffering, behavioural problems or troubling thoughts and emotions. So, if the DSM-V does not specifically name any culturally defined disorders that originate in English-speaking, industrialized, Western communities, does that mean we don’t have culturally shaped illness? Are we so open about our suffering that we have no need of metaphors?
Some Western cultures do have medical complaints that are unique to them. In France, there is a condition referred to as les jambes lourdes- meaning “heavy legs”-that is not commonly seen in other countries. The medical literature for this condition is almost exclusively in French. It is attributed to venous insufficiency, which is believed to lead to fluid pooling in the legs, resulting in heaviness and swelling. Apparently, if a person goes to a pharmacy in France and reports having heavy legs, they will be directed to a shelf loaded with products said to alleviate the symptoms. One commercial website selling a variety of creams and gels for les jambes lourdes says it affects up to one in three women. And yet, “heavy legs” does not exist as a disease category in the UK.
Les jambes lourdes would not be referred to as a folk illness or culture-bound syndrome in France, because these are terms more often used to label people outside of one’s own cultural community. It is very difficult to either spot or talk openly about the cultural idioms within one’s own society, partially because they are not recognized as such, but also because they are presented as biomechanical illnesses and to say otherwise risks forcing something that is being hidden for a purpose into the open (273-4).
I described dissociation and explained it as something to which we are all prone, especially when overloaded or distracted by life’s problems. It’s the moment you can’t take in anything your partner is saying because your head is too full of other thoughts. It’s forgetfulness on a bad day. It’s dizziness in a stressful situation. It’s the time you couldn’t concentrate enough to follow a simple instruction. I explained that normal psychological processes like dissociation serve a vital purpose in life: they stop us from becoming overwhelmed and, in some people, protect against painful thoughts. However, dissociation, like every other bodily function, can go wrong, and, when it does, it can stop being normal and become a problem (284).
She had only come to me to discuss the possibility of epilepsy, but if she could accept the blank spells were a manifestation of dissociation, perhaps she could see that at least some of her other medical complaints might have a similar cause. Dizziness is a very common symptom of dissociation, and her experience of poor sleep had been objectively contradicted by the tests (285).
It was becoming clear that many of Sienna’s medical complaints had a functional (psychosomatic), rather than pathological, cause-the tests had supported a functional diagnosis for her blank spells and for her inability to stand in the morning. The normal polysomnography, which contradicted her experience of her own sleep quality, suggested that hypervigilance to small arousals had led her to develop undue concern about her sleep. It made sense that these problems were related. They gave a single unifying diagnosis, rather than lots of unconnected diseases. I feared that, if her tendency to develop functional neurological problems and accumulate disease labels was not adequately addressed, it could be progressive. I have seen many people with a story that started out like Sienna’s ultimately develop serious long-term disability (287-8).
Over thirty years of working in Western medicine, I had learned to comply with the increasing need to label everything as if it was an illness, but deep down I believed that this did many patients a disservice. If I had been more truthful with Sienna, I would have said I thought her symptoms indicated a difficulty coping with escalating academic pressures. I would have said they were not an illness, but a sign that the life she had chosen was impacting negatively on her. If she was struggling to achieve her goals, maybe they were the wrong goals. But, in Western society, when things are going badly for a person, medical explanations are often sought because they are found to be more palatable than psychosocial explanations. Western medicine has, in a sense, learned to comply with the needs of the people. Thus, the lines between behaviour and illness, normal and abnormal-even the demarcation between disease and health-have become so blurred that it is possible to give an illness category to almost any person. Once that is done, a person becomes a patient (290).
I had concerns about Sienna’s diagnosis of PoTS and joint hypermobility, since both diagnoses are open to potential over-diagnosis and neither had helped alleviate Sienna’s symptoms-the opposite, in fact: she had embodied the labels and her symptoms had increased.
PoTS is a disorder that rarely has objective pathology to prove it exists. In its severe form-in those patients well outside the normal range and therefore unequivocally sick-it has been attributed to a fault in the autonomic nervous system or connective tissue. However, it is the grey zone of the milder form that concerns me here, because those cases have no proven pathology (299).
Knowing she had PoTS brought Sienna’s body into her awareness. She looked up the common manifestations of her new medical problem and unconsciously enacted them. She noticed dizziness to a much greater degree and became aware of her heart rate. She began to pick symptoms out of the white noise and to worry about them. A template in her brain told her that standing could lead to collapse. Predictive coding and prediction errors began to confuse her nervous system. She began to avoid standing because of how unpleasant it felt. As internal and external feedback loops combined, her body became deconditioned, increasing her symptoms. She inadvertently trained her body into coping less well with standing. In return, the increased symptoms increased her fear, and so the cycle went on.
The concept of PoTS was first described many decades ago, but the diagnosis only entered mainstream medicine in the 1990s. It is now an incredibly common diagnosis in young women. A condition that didn’t exist thirty years ago is now said by some to affect one in a hundred people in the US. What happened to those people before the PoTS diagnosis existed? I strongly suspect that, thirty years ago, Sienna would simply have been told she had a tendency to faint. She would have been given exactly the same treatment advice that she was given for the treatment of PoTS-stay hydrated, eat a high-salt diet and stand up slowly-but without the label. Not offering a diagnostic label does not mean inaction or dismissal. When you avoid a label, you avoid offering somebody a sick role, with all the negative consequences that can come with it. I suspect that-for Sienna-this strategy would have been considerably more successful (300-1).
The diagnoses are not a problem for those who respond to them by making positive changes that lead to an improved quality of life. But they could be a big problem for many young people with a tendency to embody medical concepts in a way that promotes disability instead of alleviating it (302).
Western medicine’s love of drawing people into diagnostic categories and applying disease names to small differences and minor bodily changes is not specific to functional disorders-it is a general trend. Pre-diabetes, polycystic ovaries, some cancers and many more conditions have all been subject to the problem of over-inclusive diagnosis. My biggest concern in this regard is the degree to which many people are wholly unaware of the subjective nature of the medical classification of disease. If a person is told they have this or that disorder, they assume it must be right. The Latin names we give to things and the shiny scanning machines make it look as if there is more authority than actually exists. To a certain extent, Sienna pursued each diagnosis she was given, but other people have diagnoses thrust upon them, having no idea that there might be anything controversial about it-and having no idea that they have a choice (305).
Sometimes, illness is a sign that the life we have chosen for ourselves is not the right one, but Western culture doesn’t make it easy to acknowledge that. There is an increasing tendency for people to seek a medical reason to explain why things are not working out. I suspected that Sienna’s dissociation was her body’s way of telling her that her life choices were not suited to her. Westernized values put people at risk of judging themselves to be failures if they do not meet society’s measure of success. More and more people are seen to lack-or believe they lack-what they perceive to be the right personal characteristics, and they then seek medical explanations to account for it (310-11).
Specialist doctors in Western medicine also take symptoms very literally. Family and community doctors are better at seeing the whole picture, but hospital-based doctors can investigate single symptoms in an entirely non-holistic way, and then discharge their patient without help, if their tests are normal. Hwa-byung, grisi siknis and resignation syndrome are culturally specific languages of distress. The symptoms have meaning beyond the organs involved. A chest pain doesn’t necessarily mean a heart problem. Western doctors have trouble tuning in, or at least in knowing how to respond, when something in the picture doesn’t fit the disease pattern they are trained to treat.
We in the West also live in a culture that prizes happiness so highly that anything less risks being classed as abnormal. We medicalize and commercialize human suffering. Anglo- American cultures tend to conceptualize depression as physiological and psychological, whereas other cultures regard it as situational (312).
In writing about the cultural variation in the clinical presentation of anxiety and depression, the psychiatrist Laurence Kirmayer points out that the vast majority of people in the world do not consider depression to be psychiatric, and therefore conventional psychiatric approaches cannot possibly help them. In the UK, I have often heard people refer to their own low mood in terms of low serotonin levels, but evidence shows that ethnic minorities are more likely to regard the same sort of feelings as a consequence of life events, rather than being physiological or related to their mental health. Medical papers suggest a keenness on the part of Western medicine to draw people into our classification system, referring to mental-health issues as under-recognized in minority groups. The DSM is a culture-bound document, but the medical establishment is keen to apply our rules to other people because we assume our evidence-based, scientific approach to be superior. The problem is that the evidence base does not represent the majority of the world’s population. The bulk of mental-health research is done on white, educated people, living in industrialized, wealthy countries. The groups on which we are keen to impress our system of medicalization are not represented (313-4).
In describing cultural differences in the approach to grief, Laurence Kirmayer gives an example from Latvian culture in which the grieving person is advised to “bury their suffering under a stone and step over it singing.” Australian Aboriginal people feel a deep connection to the land. They cannot be healthy unless the land is healthy. Western medicine doesn’t care about the Latvian or Aboriginal perspective. It may work for us, or maybe it won’t, but it shouldn’t be assumed to be appropriate for everybody (316).
Epilogue
For many of the people I met, psychosomatic illness served a vital purpose. Seizures solved a sociocultural problem for the Miskito and Wapishana people. In Krasnogorsk, a sleeping sickness did the same. Psychosomatic and functional disorders break the rules of every other medical problem because, for all the harm they do, they are sometimes indispensable.
There are simply not enough words to express everything a person feels. The complexity of human emotions cannot be distilled into something rational and well thought-out for every person in every situation. Cognitive dissonance exists, as do moral dilemmas, inconceivable choices, inequality and despair. Life will always find a way to set traps that seem impossible to escape. People are not machines, making decisions from algorithms, logical and free of emotion, so perhaps we need release valves and coping mechanisms, face-saving ways of addressing conflict and grappling with ambivalence. Sometimes, embodying and enacting conflict is either more manageable or more practical than articulating it (320-1).
As with any other medical disorder, psychosomatic and functional disorders arise through physiological changes and that should never be underestimated. In the face of an onslaught of information, the brain is in a constant state of predicting, discarding, assessing and reassessing, drawing inferences and learning. Like cells that grow too fast and become cancerous, or organs that produce too many hormones, unconscious psychological processes are fallible and they get things wrong-all the time. Functional neurological disorders are the brain’s coding errors. They are the neural circuits’ dysfunctional response to a change in behaviour. They have numerous triggers, only some of which are related to psychological distress. They can be a response to injury, disease, false medical beliefs, hardship, conflict, contagious anxiety. Disability develops through a process akin to learning. But brains that have been programmed can be unprogrammed, so that should never be an irreversible process (323).