The Sleeping Beauties - and other stories of mystery illness by Suzanne O'Sullivan (Picador, 2021)
[The author is a medical neurologist. Her other works on this topic are: It's all in your head: true stories of imaginary illness and Brainstorm: detective stories from the world of neurology.]
The mind has a lot of power over the body. People can lose consciousness or have seizures through a psychological mechanism as well as part of a disease process. At least a quarter of neurology referrals believe they have epilepsy but instead have dis-associative or psychosomatic seizures. Up to one third of referrals attending a neurology clinic are likely to have a psychosomatic complaint - real physical symptoms from psychological or behavioural causes. The presenting symptoms can also be skin rashes, breathlessness, chest pain, bladder problems, diarrhoea, stomach cramps, and more. While these are symptoms of real problems, when scans and tests fail to reveal a physical cause, many still doubt psychological causes. With no single diagnosis or set criteria for conditions like autism and ADHD, there is a risk of interpretation by the user. Sometimes illness is a sign that the life we have chosen for ourselves is not the right one. Anglo-American cultures tend to consider depression as physiological and psychological, where other cultures regard it as situational.
For most of the 20th century psychosomatic disorders have been labelled 'hysteria' and 'conversion disorder' and viewed from Freud's theories, with hidden psychological trauma converted into physical symptoms. Many people, including doctors, still regard repressed trauma and denied abuse as the full explanation for all psychosomatic disease, even when the patient refuses this diagnosis.
Hysteria (and conversion disorder) are more aptly termed 'functional neurological disorders' (FND). In neurology the term 'functional' has replaced 'psychosomatic'; 'functional' indicates a problem with how the nervous system is working and implies a biological cause, not a mental one. The term 'mass psychogenic illness (MPI) has replaced 'mass hysteria'. A true MPI outbreak actually says more about the society in which it occurs, than it does about the individuals affected.
- Mass anxiety disorder occurs out of the blue, without any preceding stresses needing to be present. It usually affects young people and happens in contained environments, such as schools. It spreads by direct contact and comes and goes quickly.
- Mass motor hysteria can affect people of any age, is more insidious in onset and lasts longer. Typically occurs where there is a background of chronic tensions within a close-knit community.
The big problem with any MPI is how it is perceived and understood publicly. The way such illness is defined and discussed by the small number of experts who study it is often different to how it is understood outside those circles. In the medical field it is a disorder that arises from group interaction, and is sometimes referred to as a mass sociogenic illness - a social phenomenon rather than a truly psychiatric disorder. By others it is largely presented as a psychological problem, focusing on the individual and ignoring the role of the community. The cliches associated with it are very demeaning to young women, and can make the diagnosis unacceptable for social groups that do not easily fit that category, such as older people and males, or even to conflate it with 'faking' illness.
The media do not help with reports of 'mystery illness', even when a diagnosis of 'non-epileptic seizures' has been given. Reporters often state that 'medical tests have not been able to provide any answers, when they do not recognize the diagnosis is a legitimate medical condition. Publicity can even cause further cases in some circumstances.
Western doctors are trained to interpret symptoms in a literal way and treat as personal, but every medical problem is a combination of the biological, the psychological and the social. Positive blood tests or scan results provide evidence that allows others to believe in the suffering.
People find it hard to accept a psychosomatic disorder diagnosis. There is no correlation between severity or chronicity of disability and the disease process. 'Psychosomatic' and'functional' do not imply less severe or less disabling symptoms, nor are they imaginary; they are not self-limiting and can cause sustained disability. For many, they are a self-perpetuating phenomenon. Some get better, but for others the symptoms are intensified by the experience of being sick. Social and medical interventions affect the way a patient feels about the problem, and can even make things worse. More tests and less understanding of doctors' explanations leave people more confused and worried, leading to further searches for symptoms and possible external causes.
Functional neurological disorders are usually anatomically and biologically impossible. Symptoms come from the unconscious plus an inaccurate understanding of how the body works. Reading descriptions of psychosomatic disorders, people typically relate to some part of the illness described and hope to get a formal diagnosis. If a doctor is sure that a positive asylum decision is the only cure for resignation syndrome, people get to know this, and subconsciously further spread the outbreak. And sadly, many people still struggle to accept a diagnosis of of psychosomatic or functional illness and cannot let go of the idea that there is another explanation - a virus, a toxin or an unknown illness. Despite public perception, epileptic seizures are generally brief, while dis-associative seizures last a long time. FND disorders are not imaginary, but even medical practitioners have been know to dismiss them as malingering, while the public view is that it happens to damaged people.
It is not known why young women are more likely to be affected by these disorders, but theirs is typically a voiceless position in society, a strange and impossible position that women are supposed to occupy. Young women are told they are equal, but held back if they try to assert their equality. Also physical changes - cyclical hormones and tendencies to low blood pressure and fainting - can lead to dis-associative seizures. They can be expected to live traditional conservative lives while finding themselves sexualised by older men.
The book includes chapters on specific psychosomatic outbreaks in various countries.
Sweden: From 2005, some Yazidi refugee children, boys and girls, became anxious and depressed, withdrew into themselves, soon couldn't go to school, spoke less or not at all and eventually appeared to be in a coma, had to be fed by nasogastric tube and could not open their eyes. Between 2015 and 2016, 169 Yazidi refugee children in various towns were affected. Medical tests showed no disease so doctors diagnosed 'resignation syndrome', which exclusively affects children of asylum seeking families (who have usually suffered persecution in their homeland). The asylum process is slow, and might initially be refused. During this period children integrate in school and area, and since they speak and write Swedish, they often translate any letters sent to their parents. Medical assessment of age is fraught with error due to the effects of chronic deprivation, abuse and malnutrition that caused their flight. When granted residency, children usually 'woke up' though not overnight. Yazidi children arriving in other countries do not suffer from this syndrome. Why? Until recently in Sweden, families with children with resignation syndrome were automatically granted automatic asylum, but with record numbers arriving in 2014, emerging hostility to immigrants led to this being dropped.
Texas USA: This state has a population of ethnic Miskito originally from Nicaragua. They have had outbreaks of 'grisi siknis', that were first reported in the 1970s but actually started earlier in Nicaragua. Symptoms include tremors, difficulty breathing, trance-like states and convulsions and begin with sufferers having a visual hallucination of being visited by a frightening stranger of the opposite sex who comes to lure the victim away. In Nicaragua, to escape they run into the jungle, the community find them and a local healer (shaman) will say ritual prayers. In Texas, typically the outbreaks occur in schools (mostly girls but sometimes boys) and when they attempt to run away they are restrained by family despite resisting strongly. In the Miskito community, young girls are subject to a lot of attention from (often older) men trying to pressure them into a relationship. Sometimes the interest is welcome and exciting for a girl but it conflicts with the moral standards of a conservative Christian church they follow. Being afflicted also means you are attractive. Grisi siknis is now part of Miskito culture.
Khazakhstan: The mining town of Krasnagorsk did well for many years with a population of c.6,500 in the 1960s, and was well resourced. When the mine shut in the 1990s, almost the whole of the town became unemployed overnight. As people left for jobs elsewhere, numbers dropped to c.300 in 2010 and just 30 in 2017. From 2010 people reported a wide range of symptoms, but generally older people tended to have long periods sleeping and children to be hyperactive. Cases often occurred in clusters following social gatherings at which happier times were recalled. People did not want to move, but sickness gave a reason why they had to go, and then environmental poison was suggested as a cause for the sickness. Fears about poisoning from the mine were not put to rest despite negative soil and water tests but the government resettlement offer of a move to Esil was not popular. Unhappy that often smaller accommodation was offered, people felt there was official pressure to move.
Asia: The Hmong are an ethnic minority in Vietnam. Originally from China, which they had fled at the end of the 19th century to escape persecution, they were then recruited by the US for the Vietnam war; when the US abandoned Vietnam, many Hmong fled to the US as refugees. Within a year there was a high incidence of men dying overnight with no known cause. As illiterate immigrants, used to mountain life and polygamous kinship structure, they found it difficult to live in confined spaces, or to use modern appliances. Their belief systems already included death caused by evil spirits, as do other non-western cultures; but even in the west it is common for people to know of someone who has died within hours or days of a beloved life partner.
Cuba: In 2017 at a time when relations between Cuba and the US were still starting to settle, a group of recently deployed US State Department employees developed serious but unexplained medical problems: headaches, earaches, hearing impairment, dizziness, tinnitis, unsteadyness, visual disturbances, memory problems, difficulty concentrating and fatigue. Despite intensive investigations, no cause was established. All brain scans were normal. Experts were clear that a sonic weapon that could such symptoms did not exist, medical experts were clear that sound did not cause brain damage, but media interest prolonged the investigations. At the time, relations between the countries were still strained and there was concern over spying, though no physical evidence was ever found.
Columbia: In 2014 a group of schoolgirls had faintings and convulsions that were diagnosed as 'mass hysteria'. Such outbreaks are typically gone in a day but this was still ongoing five years later. Blood tests, brain scans and EEG tests were all negative, but parents felt that some results were held back. Initially media publicity led to public labelling of the girls as 'crazy', but the community view now is that the HPV vaccine caused it, and referring to supposed incidents in Japan and Italy. This is despite the vaccination being a second dose, the first being given a month previously and having caused no symptoms.
Korea: There is an illness called hwa-byung, meaning fire illness. The condition is referred to as a culture-bound syndrome or folk illness. While the main symptom is a sense of heat or burning all over the body, it also has a cultural meaning. Associated with stress caused by infidelity, it is an acceptable way of asking for support.
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