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28 March 2021

When illness is invisible

Could a better understanding of how society affects sickness and the brain help us solve medical mysteries?

By Alice Robb

When the London-based neurologist Suzanne O’Sullivan flew to Sweden to visit a sick girl in a small town north-west of Stockholm, the child did not acknowledge her. Not when O’Sullivan entered her bedroom, or when she knelt down to introduce herself, or even when she examined her.

Nola (not her real name) wasn’t trying to be rude. It had been more than a year since she had got out of bed, opened her eyes or moved at all. A feeding tube, taped to her cheek, kept her alive.

Yet her vital signs were normal; medical tests found nothing amiss. Nola was suffering from a mystery illness known as “resignation syndrome” that afflicts hundreds of children in Sweden. The first cases were officially documented in the early 2000s: children were falling into a sleep so deep that – for days, weeks, even years – they could not be roused. Whatever their parents tried, they did not respond. If the children were pulled into an upright position, they fell back, limp, like rag dolls. The children were sent to the hospital, where doctors performed every test they could think of. Cat scans and blood tests came back normal. EEGs showed brainwaves that zigged and zagged in a healthy pattern. Blood and urine analyses ruled out the possibility that they had been poisoned.

The children’s physiology was normal, and their psychology was inaccessible; they were hardly able to fill out Rorschach tests or talk about their past. It was their unique social circumstances that gave clues into their condition. All of the children were refugees, and they had gone to bed during the long process of applying for asylum. When they fell asleep, they were facing deportation to countries they scarcely remembered, where their families had suffered severe trauma.

Nola and her family were members of the persecuted Yazidi minority. When they fled their home in rural Syria, Nola’s mother was facing death threats as a result of being assaulted by four men. They arrived in Sweden when Nola was a toddler – her age was estimated at around two and a half – and were granted temporary residency. (When O’Sullivan met her in 2018, Nola was thought to be about ten.) As their parents embarked on the lengthy journey towards permanent asylum, Nola and her siblings settled happily into their new home, becoming fluent in Swedish and making such close friends that, months after Nola stopped speaking, they continued to visit her at home. It was after receiving the news that their application had been refused – via a letter that Nola and her siblings had to translate for their parents – that she began to withdraw.

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One might guess, at this point, that Nola’s illness was a response to trauma, but – as O’Sullivan points out in her new book The Sleeping Beauties: And Other Stories of Mystery Illness – there are traumatised children all over the world. While stress and epigenetics no doubt played a role, these factors can’t tell the whole story; they can’t explain why it was asylum-seeking children primarily in Sweden who were affected by the sleeping sickness.

The missing piece, O’Sullivan believes, is in their environment, and in the children’s awareness that others like them were at risk of falling into an impenetrable sleep. “The children reacted to their situation by unconsciously playing out a sick role that had entered the folklore of their small community – a role that had been coded in their brains by their cultural environment,” O’Sullivan argues. “Their brains were primed to manifest apathy when faced with a particular trigger.”

The key word is “unconsciously”: those suffering from psychosomatic illnesses have no more volition over their symptoms than anyone else. Still, suffering that doesn’t show up in brain scans or blood tests is liable to be dismissed; patients become suspects, forced to defend themselves against accusations that they are “faking it”. O’Sullivan powerfully demonstrates how wrong this is. “Every medical problem is a combination of the biological, the psychological and the social,” she writes. Cancer, primarily a biological disease, can have an environmental trigger. Depression, primarily a psychological disorder, can have physiological effects.

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In Western medicine, the role of society is often ignored. Yet there is no doubting the impact of culture and community on illness and the brain. O’Sullivan explains how diseases with psychological or social origins still depend on unconscious cognitive processes.

We are constantly exposed to huge quantities of information, but the brain deems much of it irrelevant and throws it away, focusing instead on the inputs that, based on expectations and prior experience, ought to matter most. Over time, these connections are strengthened and biases – sometimes healthy, sometimes not – are reinforced. Say you catch a cold, develop laryngitis and lose your voice. The next time you have a sore throat, your brain – comparing this experience to the last – might send the wrong signals, causing you to lose your voice once again.

O’Sullivan travels the world collecting fascinating stories of culture-bound syndromes, which she relays with nuance and sensitivity. Among the Miskito of Nicaragua, young people, mainly girls, suffering from “grisi siknis” experience dizziness, convulsions and terrifying visions of the devil. Unless they are restrained, and the evil spirits ritually exorcised, they may succumb to violent behaviour and self-harm. In a tropical town in Guyana, teenage girls began collapsing en masse, recovering only when they left their boarding school and returned to their families. An epidemic of convulsions gripped a school in upstate New York, which was resolved only after the camera crews and newscasters – some of whom insisted that the children had been poisoned by the residue of a long-ago chemical spill – finally left.

O’Sullivan notices that these illnesses often serve a purpose: alerting a community to a patient’s need for help or providing a way to communicate distress. “Culture-bound syndromes are often a metaphor for something that cannot be expressed in a more explicit way within a certain community,” she writes. For example, “Resignation syndrome gives a voice to the voiceless.” (Psychosomatic illness is more common in women, and O’Sullivan suggests this may be due, in part, to “their voiceless position in society”.)

***

O’Sullivan writes with a refreshing humility; unlike some doctor- authors, she doesn’t paint herself as a miracle-worker. An epilepsy specialist, she has been a neurology consultant since 2004 and an author since 2015, when her debut, It’s All in Your Head, won her the Wellcome prize for science writing and a reputation as a talented “detective of the mind”. Both her first book and her 2018 follow-up, Brainstorm: Detective Stories from the World of Neurology, deal with psychosomatic illness, mostly among her own patients.

As O’Sullivan travels further afield in The Sleeping Beauties, she is attuned to the irrational beliefs that are widespread in Western culture, inviting us to consider that if the concept of spirit possession sounds far-fetched, so does the idea that going outside in the rain will cause a cold, or that chicken soup will cure it. She reflects on the patients she couldn’t help, and is haunted by the ones that she – or the brand of medicine that she practises – may have even harmed.

Sienna (a pseudonym) was a first-year university student and a savvy medical consumer. By the time she made an appointment with O’Sullivan, she had already accumulated a long list of diagnoses, including low blood pressure, hypermobility, irritable bowel syndrome and a sleep disorder. Sienna was now suffering from what she called “blank spells”: she was having trouble focusing in noisy rooms, and sometimes spaced out if a lecturer spoke too quickly. Sienna and her parents were certain that these were epileptic seizures, and only wanted O’Sullivan to confirm the diagnosis.

Privately, O’Sullivan found Sienna’s symptoms not only unconcerning but relatable, and she feared that Sienna had already been over-medicalised – that she might be unconsciously embodying some of her diagnoses. Still, she agreed to order a battery of tests and kept Sienna at the hospital, under full-time observation, for a week.

After reviewing the test results, O’Sullivan told Sienna that her blank spells were not due to epilepsy, but to brief episodes of dissociation. Sienna didn’t like that: she felt as though O’Sullivan was accusing her of faking her symptoms, and she demanded even more testing. “If I had been more truthful with Sienna, I would have said I thought her symptoms indicated a difficulty coping with escalating academic pressures,” O’Sullivan admits. “I would have said they were not an illness, but a sign that the life she had chosen was impacting negatively on her.”

***

As I read about Sienna, I remembered an episode from my own childhood. When I was around 11, I developed a constant pain in my hip. I was studying ballet at the time, and this new ache represented a setback. I couldn’t trace its onset to a specific fracture or fall; the pain had crept up on me until I could no longer ignore it. Desperate for a diagnosis, and a cure, I visited specialists and physical therapists and slid into an MRI machine that made me think of a coffin. But the scans came back normal. Eventually, I saw an orthopaedist who specialised in ballet injuries, and who was intimately familiar with the culture in which I was embedded. Like his predecessors, he found nothing physically wrong with me. At the end of the exam, he looked at me – with my tight bun, my not-so-high insteps and my not-so-turned-out hips – and asked me a question.

“Look around at the girls in your class,” he said. (There were about 20 of us.) “Only one of you is going to make it. Do you think it’s going to be you?”

I am sure this was devastating at the time, but it was also, I think, the right thing to say. I doubt, after reading O’Sullivan’s book, that my mysterious pain had a biological cause. “Sometimes,” O’Sullivan writes, “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.” My pain served a purpose: it allowed me to externalise my failure and gave me an excuse to step back.

That was nearly 20 years ago. Medical categories are expanding all the time. I wondered, as I read about the growing pressure O’Sullivan feels to classify and to diagnose the grey areas, if that doctor would say the same today.

Alice Robb is the author of “Why We Dream: The Science, Creativity and Transformative Power of Dreams” (Picador) and the forthcoming “Don’t Think, Dear” (Oneworld)

The Sleeping Beauties
Suzanne O’Sullivan
Picador, 336pp, £16.99

This article appears in the 24 Mar 2021 issue of the New Statesman, Spring special