Our brains can play the worst tricks on us. They are always looking to explain and categorize incoming stimuli, sometimes perceiving threats out of the flimsiest bits of information gleaned from our bodies and our environment. Every so often they go into overdrive, inducing the worst kinds of illnesses—hallucinations, seizures, paralysis, coma—even when there’s no underlying physical problem.
This is the territory that the Irish neurologist Suzanne O’Sullivan has been exploring for years. Based in London, she sees hard-to-diagnose cases, often patients suffering from seizures which may or may not be caused by epilepsy. She’s on a mission to debunk our misconceptions about psychosomatic illnesses. Think they’re not serious? Not real illnesses? People are faking it? O’Sullivan will set you straight with hair-raising stories about people who’ve been permanently disabled by dissociative disorders.
Like Oliver Sacks, O’Sullivan is a gifted writer whose compassion for patients bursts through her case studies. In her new book, The Sleeping Beauties: And Other Stories of Mystery Illness, she travels the world to investigate a series of bizarre and fascinating disorders. What’s new in these illnesses is their high degree of contagion. A girl in Sweden becomes listless and hundreds of other kids fall into similar stupors (“Why These Children Fell Into an Endless Sleep”). A teenager in Nicaragua sees a frightening little man in a hat and dozens of other kids in school start having similar apparitions. Dozens of American diplomats in embassies around the world report a cluster of common ailments—headaches, fatigue, memory lapses—despite scant evidence of any physical cause.
O’Sullivan says psychosomatic illnesses are far more common than we realize, but few people admit to having them. In fact, she explains, “not accepting the diagnosis forces people to reinforce their symptoms, travel around to doctors, and have test after test. It can be really life-destroying, looking for that alternative diagnosis when there isn’t one.”
I reached O’Sullivan at her home in London to talk about these mystery illnesses and the problems with medical diagnosis.
You tell the story of a mysterious illness in Sweden where hundreds of children have become bedridden. What did you see when you visited some of these girls?
I visited two little girls, aged 10 and 11. The 10-year-old had been in this odd comatose state for a year and a half, and her older sister had been like this for about six months. It was shocking. When we walked into the 10-year-old’s bedroom, there wasn’t even a flicker of recognition. She looked healthy, but when her father tried to pick her up, she was just floppy, like a rag doll. She didn’t open her eyes to any sort of stimulation, and that is exactly how she’s been for a year and a half. Her parents keep her alive with tube feeding.
This is called “resignation syndrome.”
It was first referred to as apathy because the children withdraw slowly from the world, and they gradually descend into a state in which they can’t interact at all. It’s been happening in Sweden since the early 2000s. What’s most interesting is that these are not just any children. They all belong to families seeking asylum in Sweden, and they fall into this state of resignation syndrome when they are faced with potentially being deported from Sweden. Many of them come from ex-Russian republics or from small groups who’ve had particularly difficult lives, like the Yazidi or the Uyghur Muslims. They’ve probably fled something quite horrific in their countries of origin. But the children I met had been in Sweden since the age of 2 and were now 10 and 11, so this illness must be linked in some way to their lives in Sweden.
You met the doctor who regularly sees these girls. How did she explain their illness?
When I spoke to the doctor who facilitated my visit, I wanted to talk about this obvious link between the loss of hope the children were facing and the condition they were in, but she wasn’t happy to have that discussion. What she wanted me to do as a neurologist was to speculate about what’s happening in the brains of these children. I certainly think that’s a very interesting conversation. It would teach us a lot about motivation and consciousness, but that discussion took us away from the real problem. These children are in this state because they’re facing deportation.
The sickness came along as a sort of sophisticated solution to a problem.
Why would these children become bedridden and comatose?
I want to make a distinction between disease and illness. When I talk about disease, I’m referring to something which is objective, which isn’t controlled by how we think about our bodies. But an illness is a perception of how one feels, and illnesses can be programmed through expectations in our brains.
Let’s imagine we’re one of these asylum-seeking children and we know that the possibility of deportation sometimes leads to apathy. How would we respond when we felt those initial physiological changes? What can happen in illness is that our bodies respond how we expect them to respond. Think about what happens when you’re being deported. First you feel a bit sick and then you don’t have any energy. Then you don’t feel able to get out of bed and then you close your eyes. It isn’t unusual for somebody to manifest physical symptoms in the context of ideas, stories, and stresses. What’s unusual for these children is the extremity of what’s happened to them.
The other thing that’s unusual is that it’s not just one or two kids. There are hundreds. It’s a contagion that’s sweeping through these families who’ve settled in Sweden.
Again, is that unusual? To a certain degree, illness is a social construct. If you believe that certain provocations will produce certain symptoms because it exists within the folklore of your community, it’s easy for that to overwhelm your system and produce those symptoms. We shouldn’t make the distinction between body and mind. Our body and mind interact together. They are real symptoms because they are disabling the children very severely.
One of the recurring themes in your case studies—in Sweden and elsewhere—is that people don’t like being told their illness is psychosomatic. That’s also true with your patients who’ve had seizures and assume they have epilepsy. You say a high percentage of these cases are psychosomatic.
At least a quarter of the people referred to me who believe they have epilepsy—who have regular seizures—have purely psychosomatic seizures. It’s a phenomenally common way for the body to respond to certain stresses. It often begins with something biological, like a faint. For example, a young person gets on a packed train and it’s really hot and they faint in a completely normal way. That can create a fear in a person’s brain where the next time they get on the train, they think, ‘Oh, I really hope I don’t faint again.’ They begin examining their bodies in ways that they would not normally do and that can lead to an escalation of symptoms and ultimately to seizures.
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You investigated other psychosomatic illnesses that become contagious. Some Miskito people in Nicaragua go into trances and have scary hallucinations. What’s happening with them?
This is an interesting condition called “grisi siknis.” Within certain cultures, there are specific symptoms and medical diagnoses that exist only in that culture. Grisi siknis belongs to the Miskito tribe of Nicaragua who live in the Miskito Coast. It mostly affects teenagers—schoolgirls in particular—and it manifests as just crazy behavior. They run around manically, then drop to the ground, and they have intense seizures. The family members say they’re so strong that it takes several men to hold them down. This condition goes in waves through the Miskito communities. If one school child gets it, then it might pass through a school.
How do the Miskito people explain what’s happening?
They believe the person who is affected has been visited by a spirit called the duende. They often hallucinate that spirit, who’s usually a small figure wearing a hat. They believe this spirit infects them and causes the seizures. It tends to occur in young women who are sexually conflicted and receiving unwanted attention from older men.
How do the Miskitos treat grisi siknis?
They treat it with ritual. There’s a traditional healer who douses the children in herbs. It’s incredibly successful. It’s important to understand that it’s a sophisticated social mechanism that these people are using to deal with a particular social problem. It manifests in situations where the girls are under a particular type of pressure in a conservative society. The grisi siknis acts as a way for them to externalize their distress and express the need for help without having to have that awkward conversation or without having to be explicit about what the exact problem is.
The children withdraw slowly from the world and descend into a state in which they can’t interact at all.
So it’s probably more effective to go through this kind of ritual, which sounds like an exorcism, rather than going into a hospital to be treated by a doctor.
One hundred percent. I think we need to ask what we can learn from these people. People with very similar seizures in the United Kingdom or in the States will go to a doctor, have a brain scan and a variety of other tests, and the recovery rate will only be about 30 percent. These people achieve a recovery rate of about 100 percent. That doesn’t mean we should all start adopting rituals and using traditional healing methods. But we should ask ourselves: What are the seizures trying to tell us? When a Miskito child gets sick, the whole community rallies around them. We lock away people who have these sorts of conditions. We could learn from this more compassionate, community-based response.
There’s a very different kind of psychosomatic illness that you investigated in Kazakhstan. What did you find there?
I had this amazing trip to two little towns called Krasnogorsk and Kalachi in the middle of Kazakhstan. This story began in 2011 when a middle-aged woman was working in a market stall and fell asleep. People in the other market stalls just couldn’t wake her up. She was taken to a good hospital and all the tests were normal. It went unexplained. After a week, she just woke up and went back to normal again. Unfortunately, then it spread. Over the course of the next few years, 133 people fell into a mysterious sleep, and some got a variety of other symptoms, such as hallucinations. The government in Kazakhstan went into absolute overdrive with these people, trying to understand what was happening to them. They took hair samples, atmospheric samples, water samples. People were looking for poisons and anything that could explain it.
There was a mine nearby, so toxins could be one explanation.
This was an ex-mining town. These people had lived and worked in a uranium mine for many years and were never sick. The uranium mine had been closed since the 1990s and they got sick 20 years later. That’s not to say it wasn’t reasonable for them to investigate some sort of poison coming from the mine, but those tests were done exhaustively, and nothing was found.
What is your explanation?
When I saw pictures of this town for the first time, I saw it was a very poor town. It’s dilapidated, with crumbling buildings. People had no work. I had the assumption, like many doctors do, that they were just so stressed that they had dissociated and fallen into this coma. But when I went there, I discovered a different story. These people had been shipped to this secret uranium mining town in the 1970s. They referred to it as paradise, which I didn’t believe at first. But as I heard their stories, I realized it had been paradise in the middle of Kazakhstan. They were under protection from Moscow. They had cinemas and a great hospital. Their shop was filled with produce that wasn’t available anywhere else in Kazakhstan. But then it all changed. The uranium mines shut down and they went from having this very special life to having an especially difficult life.
It isn’t unusual for somebody to manifest physical symptoms in the context of stories and stresses.
Because once the Soviet Union collapsed, the Russians no longer supported these towns in Kazakhstan.
The uranium mines closed, and this town lost its protection. But that is not when they got sick. In stress, you would expect someone to get sick when they start going through these hardships. The problem arose around 2010, when the town had lost so many amenities that the government wanted to shut it down. There were only 300 people left living there and the housing conditions were poor, so the government wanted to rehouse them in a bigger town. But the people didn’t want to go.
As they were telling me their stories, I realized that this didn’t have anything to do with hardship. It was about their reluctance to leave the town. It was like a love story. This town had served them phenomenally well. They were living for the day when it would be revitalized—but also realizing that was never going to happen. The sleeping sickness came along as a sort of sophisticated solution to a problem. When they left the town and were rehoused, they recovered. They hadn’t chosen to leave the town, but the sleeping sickness had made the decision for them.
The people who got sick believed they were poisoned by the uranium mine. They didn’t want this psychosomatic diagnosis.
That is still their conviction. There’s not a shred of evidence for poison, but to this day, the people still strongly believe that they were being poisoned and that’s why they had to leave the town. You can understand why. If the perception is that someone with psychosomatic disorders is weak, or someone with psychosomatic disorders is mad, crazy, or pretending, why would you accept that diagnosis?
When you talked to people who had this sleeping sickness, I assume you told them they hadn’t been poisoned. That sounds like a difficult conversation.
You know, that’s something I learned from meeting with these people. I have this Western medical perception that if I can just explain to people what’s going on physiologically, and why this is a psychosomatic condition, they will believe me and get relief. That’s absolutely not what happens. People have invested in their own explanation. When you try to raise psychosomatic conditions, however carefully you do it, it’s not welcomed. I realize now that maybe not raising it is sometimes the right thing to do. If psychosomatic conditions have come along to solve a problem, then perhaps it’s not right to always try and force it out into the open.
That’s an unusual response to hear from a Western neurologist—let people believe in their mistaken diagnosis.
I’m not going to encourage people to believe in a diagnosis that I don’t believe in. But I can try and listen more to the story that the person is telling so I can understand the problem. What happens an awful lot with Western medical doctors is we get into arguments with our patients. I’m saying it’s psychosomatic and the patient is saying, ‘No, it’s not.’ Once you get into that sort of argument with the patient, it’s unproductive, and neither of you will ever get anywhere. It’s perhaps reasonable for me to put my psychosomatic explanation to the patient, but also spend more time listening to the story they’re telling themselves. Sometimes a psychosomatic illness is an embodied narrative that has a beginning, middle, and end. I need to understand what they perceive the solution to be. Obviously, there’s a limit to what is reasonable.
The cases we’ve been talking about deal with people who’ve lost their homes, or may live in cultures that believe in spirit possession. But you also write about the American diplomats in Cuba who’ve developed a whole series of symptoms—dizziness, headaches, memory problems, fatigue—in what has been called Havana Syndrome. It’s been widely reported that there must be some secret weapon that our enemies are using to attack American diplomats in foreign embassies. You don’t believe that, do you?
It’s not just that I don’t believe it. What has been suggested is biologically impossible. It’s folklore, not unlike believing that you’ve been infected by a duende. The premise for the sonic weapon attack is extremely weak. In December, 2016, an American diplomat in Cuba heard a strange noise and simultaneously got an odd set of symptoms that included things like headache, dizziness, unsteadiness, difficulty concentrating. That began the rumor that people in the embassy were being attacked by a sonic weapon.
Or some sort of microwave energy weapon.
Well, it’s very interesting how the story evolved. It began as a sound weapon because someone heard a sound. Then other people also said they heard a sound and got sick. Now, there’s a big medical problem. Sound does not damage the brain. An exceptionally loud sound can damage the hearing through the ears. But it does not damage the brain. The scientists involved in this case had to begin to accept that sound doesn’t damage the brain. They said, ‘Well, perhaps it isn’t a sonic weapon in the hearing range. Perhaps it’s something outside of the hearing range, like a microwave weapon.’
Here we immediately have a big problem. If the whole premise for thinking there was a sound weapon was based on the fact people heard a sound, then where is the logic in deciding that now it’s a microwave weapon, which doesn’t make a sound? And there are many biological reasons why a microwave weapon is impossible. No such weapon exists. I’m not a weapons expert, but I am a medical doctor who knows that microwave energy would have no preference for the brain if one were attacked by a microwave weapon. It’s not possible to direct a microwave energy from a great distance at one person and only damage their brain. Why wouldn’t one have blood vessel problems in the kidneys, in the heart, in the lungs? It’s a biological impossibility. But the idea clings on and is reported in the press even now.
It’s not just that I don’t believe it. What has been suggested is biologically impossible. It’s folklore.
The U.S. government hired some prominent doctors to investigate, and they suggested that maybe these symptoms were caused by some secret weapon.
Yeah, the difference between what has been reported in the media about that report and what is in that report is very interesting. I’m wondering, Steve, have you read that report?
I have not.
Therein lies a big part of our problem. I have read the report and the vast majority of people have not. The report says there were so many symptoms in the people examined that they couldn’t even say these people had the same thing. They ended up dismissing huge numbers of people who were reportedly involved in this outbreak, and then boiled it down to a smaller number of people. They then dismissed the psychosomatic explanation out of hand without having a great explanation for doing that. Then they gave many diagnoses that are psychosomatic but use euphemisms to hide that fact. So, for example, they use words like “functional,” and put in brackets “functional, not psychiatric,” which is a way that doctors call things psychosomatic without calling them psychosomatic. They did mention that they thought this was microwave energy, but when one reads the entire report, it’s chilling how little evidence there is for it. They didn’t even meet the people involved.
So how do you explain what happened to these American diplomats in Cuba?
It’s impossible to know what happened to the first person because in these sorts of outbreaks, the first person could have a completely different illness from everyone else. But they set the template for what may happen next. When you read about the experience of the people in the embassy, it really was frightening. People were told they were potentially being attacked by a sonic weapon. They were told to hide behind walls if they heard a strange noise. They were called repeatedly to meetings and told to examine their bodies for symptoms. They were then told to go to a doctor even if they didn’t have any symptoms. There was escalating anxiety with instructions for people to examine their bodies.
This happened after 50 years of tense relations between Cuba and the U.S. The American embassy had just opened under Obama, and they were worried that Cubans would plant eavesdropping devices in the building. There are good reasons why people would be stressed out.
It was realistic for these people to believe they could be under threat. There are many precedents for diplomats in Cuba and in Russia having secret listening devices. And these people had been instructed that this attack was potentially underway and instructed to examine their bodies. Well, what happens when you examine your body for symptoms? You find them. If somebody says to you, ‘You’ve been exposed to an illness or an attack, please examine your body for symptoms,’ you immediately start noticing tingling and discomforts that you wouldn’t normally notice.
But this is not just a Cuban phenomenon. American diplomats at the embassies in China and Germany reported similar symptoms.
It’s now moved around the world. There have been cases reported in London, in Germany. But that’s the nature of contagious symptoms. It’s also worth noting how the psychosomatic possibility was discussed for the diplomats in Cuba. The doctors involved in the case said the diplomats are not acting or pretending, and they don’t want to be sick. Now, if that’s how you perceive a psychosomatic condition, you’re pretty much saying to your patients, ‘Well, here are your choices: You’re either pretending and you’re mad and you want to be sick, or you’re being attacked by a sonic weapon.’ Which would you prefer? The choice is obvious.
Steve Paulson is the executive producer of Wisconsin Public Radio’s nationally syndicated show To the Best of Our Knowledge. He’s the author of Atoms and Eden: Conversations on Religion and Science. You can subscribe to TTBOOK’s podcast here.
Read about Suzanne O’Sullivan’s emotional trip to Sweden, “Why These Children Fell Into an Endless Sleep.”
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