I had barely stepped foot over the threshold and I already felt claustrophobic. I wanted to turn back. People shuffled into the room in front of me, while somebody else stood directly behind me, a little too close. It felt hard to escape.
I could see Nola lying in a bed to my right. She was about 10 years old, I guessed. This was her bedroom. She was wearing a pink dress and black and white harlequin tights. Her hair was thick and glossy, but her skin was pale. Her lips were an insipid pink, almost colorless. Her hands were folded across her stomach. She looked serene, like the princess who had eaten the poisoned apple.
I had come knowing what to expect, but somehow I still wasn’t prepared. Five people and one dog had just walked into the room, but Nola didn’t have so much as a flicker of acknowledgement for any of us. She just lay perfectly still, her eyes closed, apparently peaceful. The only certain sign of illness was a nasogastric feeding tube threaded through her nose, secured to her cheek with tape. The only sign of life, the gentle up and down of her chest.
“She’s been like this for over a year and a half,” Dr. Olssen said, as she bent to stroke Nola gently on the cheek.
I was in Horndal, Sweden, a small municipality a hundred miles north of Stockholm. Dr. Olssen was my guide. She was a slim, deeply tanned woman in her 60s, with a distinctive triangular white patch in the fringe of her light brown hair. She had been caring for Nola since the child had first fallen ill, so she knew the family well. Dr. Olssen’s husband, Sam, and their dog had also come with us. All three were regular visitors to Nola’s home—a small but spacious apartment that overlooked a leafy playground—and knew their way around it.
From the front door, they had led me promptly and directly to Nola’s room. One moment I was outside in the midday sunshine, then suddenly I was in the twilight of a sleeping child’s room. I had an impulse to open the curtains. Dr. Olssen must have felt the same, because she walked to the window, drew the curtains aside and let the light in. She turned to Nola’s parents and said, “The girls have to know it’s daytime. They need sun on their skin.”
“They know it’s day,” her mother answered defensively. “We sit them outside in the morning. They’re in bed because you’re visiting.”
When this started happening, it was unprecedented. Nobody knew what to call it. Was it a coma?
This wasn’t just Nola’s room. Her sister, Helan, who was roughly a year older, lay quietly on the bottom of a set of bunk beds to my left. From where I stood, I could only see the soles of her feet. The upper bunk—their brother’s bed—was empty. He was healthy; I had seen him peeping out from around a corner as I walked to the girls’ room.
Dr. Olssen turned and called to me: “Suzanne, where are you? Aren’t you coming to say hello? Isn’t this why you’re here?”
She was hunkered down by Nola’s bed, brushing the child’s black hair to one side with her fingers. I stood wavering near the threshold, struggling to take the final few steps of a long journey. I was pretty sure I was going to cry, and I didn’t want the others to see. I wasn’t ashamed; I am human and upsetting things upset me. Sick children in particular upset me. But this family had been through so much and I didn’t want to put them in the position of having to comfort me. I fixed a smile on my face and approached Nola’s bed. As I did, I glanced over my shoulder at Helan, and was surprised to see her eyes open for a second to look at me and then close again.
“She’s awake,” I said to Dr. Olssen.
“Yes, Helan’s only in the early stages,” she replied.
Nola and Helan are two of the hundreds of sleeping children who have appeared sporadically in Sweden over a span of 20 years. The first official medical reports of the epidemic appeared in the early 2000s. Typically, the sleeping sickness had an insidious onset. Children initially became anxious and depressed. Their behavior changed: They stopped playing with other children and, over time, stopped playing altogether. They slowly withdrew into themselves, and soon they couldn’t go to school. They spoke less and less, until they didn’t speak at all. Eventually, they took to bed. If they entered the deepest stage, they could no longer eat or open their eyes. They became completely immobile, showing no response to encouragement from family or friends, and no longer acknowledging pain or hunger or discomfort. They ceased having any active participation in the world.
The first children affected were admitted to hospital. They underwent extensive medical investigations, including CAT scans, blood tests, EEGs (electroencephalograms, or brainwave recordings), and lumbar punctures to look at spinal fluid. The results invariably came back as normal, with the brainwave recordings contradicting the children’s apparent unconscious state. Even when the children appeared to be deeply unresponsive, their brainwaves showed the cycles of waking and sleep that one would expect in a healthy person. Some of the most severely affected children spent time under close observation in intensive-care units, yet still nobody could wake them. Because no disease was found, the help doctors and nurses could offer was limited. They fed the children through feeding tubes, while physiotherapists kept their joints mobile and their lungs clear and nurses made sure they didn’t develop pressure sores through inactivity. Ultimately, being in hospital didn’t make much difference, so many children were sent home to be cared for by their parents. The children’s ages ranged from 7 to 19. The lucky ones were sick for a few months, but many didn’t wake for years. Some still haven’t woken.
When this started happening, it was unprecedented. Nobody knew what to call it. Was it a coma? That word wasn’t quite right; it implied deep unconsciousness, but some of the children seemed to have awareness of their surroundings. Tests showed that their brains responded to external stimuli. Sleep certainly wasn’t the right word either. Sleep is natural, but what was happening to the children was not—it was impenetrable. In the end, Swedish doctors settled for “apathy.” The Swiss psychiatrist Karl Jaspers described apathy as an absence of feeling with no incentive to act. It is a total indifference to pain and to pleasure, a complete freedom from emotion of any kind. That description fitted with what the doctors were seeing. After a few years, apathy was converted to an official medical designation—Uppgivenhetssyndrom—literally meaning “to give up.” In English, this became “resignation syndrome.”
Dr. Olssen rolled up Nola’s dress, exposing her bare stomach and revealing that she was wearing a nappy under her tights. Nola didn’t resist the intrusion. Her hand lolled over the side of the bed, the dog nudged it with his nose, but she didn’t respond to that either. Dr. Olssen pressed on her stomach and listened to it with a stethoscope, and then listened to her heart and lungs.
Dr. Olssen rolled up Nola’s sleeve and tested her blood pressure. The child didn’t flinch. “One hundred over seventy-one,” Dr. Olssen told me, which is normal for a relaxed child. She lifted Nola’s arm to show me how limp it was. The arm dropped unceremoniously onto the bed when let go. She turned to me and asked me to carry out an examination.
I hesitated. I am a doctor, but I wasn’t Nola’s doctor. I looked at her mother, who was still standing at the end of her bed. We had no shared language. What brief conversation we had went through Dr. Olssen. She seemed happy for me to be there, but I longed to talk to her directly, without a go-between. There were so many languages, and such varied dynamics between the people around the bed, that I found it hard to read the room.
The lucky ones were sick for a few months, but many didn’t wake for years. Some still haven’t woken.
Dr. Olssen raised her eyebrows as she waited for me to answer. “What did you come here to do?”
Good question. Suddenly, I didn’t know why I was there. I saw patients a little like those girls all the time in my job. What made them special enough for me to feel the need to visit, and what did I hope to gain?
“Come on.” Dr. Olssen coaxed me forward. “You’re a neurologist, aren’t you?”
I remembered why I was there. Dr. Olssen was a retired ear, nose, and throat doctor, desperate to help the children and support the families. She’d welcomed me because I was a neurologist. She hoped that I could find an explanation for what had so far been inexplicable; that I would interpret the clinical signs and, by doing so, legitimize the girls’ suffering and convince someone to help them. That Nola had been lying in bed for a year and half without eating or moving had not been deemed impressive enough to get her the help she needed. A neurologist, a specialist in brain disease, would add weight to the diagnosis, or so Dr. Olssen hoped.
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.
“Examine her,” Dr. Olssen said again.
Reluctantly, I took Nola’s legs in my hands and felt the muscle bulk. I moved her limbs to assess mobility and tone. Her muscles felt healthy, not wasted. Her reflexes were normal. Apart from her unresponsiveness, there was nothing abnormal.
I tried to open Nola’s eyes, as Dr. Olssen had, and felt her resist. Dr. Olssen asked me to palpate the muscles in her cheeks. In contrast to every other muscle in her small body, these were rigid. Her teeth were clenched shut—another piece of evidence against passive, apathetic restfulness.
I looked behind me, at Helan. The dog was staring at her; Sam, Dr. Olssen’s husband, was holding him by the collar to keep him in check. Helan looked past the dog, at me. I smiled at her again, but she just stared back blankly.
Dr. Olssen followed my gaze. “Nola was the first to get sick. Helan only got symptoms after the third asylum refusal, when the family were told they had to leave Sweden.”
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. Nola had come to Sweden when she was two and half—at least, that was the official age she was given on arrival, by a man she had never met before. Nola’s family fled the Turkey-Syria border when she was a toddler, and their journey to Sweden had been uncharted. Somewhere in transit, their papers were destroyed. Arriving at the Swedish border, they had no proof of who they were or where they came from, so the authorities estimated their ages. They determined Nola to be two and a half, Helan to be three and a half, and their younger brother to be one.
Nola’s family are Yazidi, an ethnic-minority people indigenous to Iraq, Syria, and Turkey. The worldwide number of Yazidi is estimated to be fewer than 700,000. Walking through the house to Nola’s room, I had seen a picture of a peacock hanging on the wall, dark blue with his open tail feathers displayed behind him. Nola’s father had a peacock tattoo on his arm. The Peacock Angel is central to the Yazidi religion. They believe he was created by the supreme deity and that he governs Earth. The stories told about the Peacock Angel have links to the beliefs of other religions. He is said to have taught Adam and Eve. He is also the reason that the Yazidi have been referred to as devil worshippers. Some say that, because the Peacock Angel rebelled against God and was cast into hell, he therefore represents Satan. It is this sort of interpretation of their beliefs that has seen the group subjected to centuries of persecution. In the 19th and 20th centuries alone, they were subjected to 72 genocidal massacres, while in the 21st century they have been the victims of many bloody attacks, first in Iraq and more recently in Syria. Women and children have been gang-raped and taken as sex slaves. In the region of 70,000 Yazidi people are said to have sought asylum in Europe.
That’s how modern medicine works: Disease impresses people; illness with no evidence of disease does not.
Nobody can prove what Nola and her family suffered before they came to Sweden—I can only tell you the story I was told. The family used to live in an underdeveloped rural village in Syria, near the border with Turkey. Most of the people had no running water, but they had a communal well to which Nola’s mother made daily trips. One morning, when she went to get water, she was grabbed by a group of four men, who dragged her into the woods and assaulted her. When she came home and told her family what had happened, her father was furious with her for bringing shame on them. Over the next weeks, there were heated arguments between Nola’s grandfather and her parents. In one of them, Nola and her siblings were in the room when their grandfather threatened to kill their mother. At the time of the assault, Nola’s mother had been pregnant with her fourth child, but she soon miscarried.
With threats to the family from inside and outside the home, staying in Syria was untenable and the family were forced to flee. Arriving in Sweden with no papers, unable to speak Swedish and unable to read a Latin-script alphabet, they struggled to communicate and had no way of verifying where they’d come from or who they were. They immediately applied for asylum, but asylum depended on them proving they had been persecuted in their country of origin and convincing the authorities that it was unsafe for them to return.
At the time, Sweden took a generous stance on asylum seekers, and Nola’s family were given temporary permission to stay. The subsequent process of applying for permanent asylum was very slow. Before it was properly underway, Nola and Helan were already in school. After several years, the family’s application for asylum was processed—and then refused, although they had the right to appeal the decision, not once but twice. By that time, the Syrian war had started, making their birthplace even more dangerous. It was at this point that Nola showed the first signs of withdrawal.
The children had lived in Sweden for longer than they had lived anywhere else. All their friends were here, both children spoke fluent Swedish and Helan also had a good understanding of English. I don’t know what Nola and Helan knew of the place they were born, but, even if it was never explicitly discussed, they must have felt the fear associated with returning there. The family had placed themselves in great danger fleeing Syria, and—whether they were believed or not—they had done so for a reason.
People who have psychologically mediated physical symptoms always fear being accused of feigning illness. I knew that one of the reasons Dr. Olssen was desperate for me to provide a brain-related explanation for the children’s condition was to help them escape such an accusation. She also knew that a brain disorder had a better chance of being respected than a psychological disorder. To refer to resignation syndrome as stress induced would lessen the seriousness of the children’s condition in people’s minds. It is the way of the world that the length of time a person spends as sick, immobile, and unresponsive is less impressive if it doesn’t come with a corresponding change on a brain scan.
Not all the medical interest in this disorder has focused on blood tests and brain scans. More psychologically minded explanations have compared resignation syndrome to pervasive refusal syndrome (also called pervasive arousal withdrawal syndrome—PAWS), a psychiatric disorder of children and teens in which they resolutely refuse to eat, talk, walk, or engage with their surroundings. The cause is unknown, but PAWS has been linked to stress and trauma. The withdrawal in PAWS is an active one, as the word “refusal” suggests; it is not apathetic. Still, as a condition associated with hopelessness, it does seem to have more in common with resignation syndrome than other suggestions.
The resignation-syndrome children became ill while living in Sweden, but most had experienced trauma in their country of birth. It seems likely, then, that this past trauma would play a significant role in the illness. Perhaps it is a form of post-traumatic stress disorder? Or could the ordeals suffered by the parents have affected their ability to parent, which in turn impacted on the emotional development of the child? One psychodynamically minded theory is that the traumatized mothers are projecting their fatalistic anguish onto their children, in what one doctor described as an act of “lethal mothering.”
There is clearly much of value in investigating the biological and psychological explanations for resignation syndrome, but even when taken together they fall short. Psychological explanations focus too much on the stressor and on the mental state of the individual affected, without adequately paying attention to the bigger picture. They also come with the inevitable need to apportion blame, passing judgement on the child and the child’s family. They risk diminishing the family’s plight in the eyes of others. Psychological distress simply doesn’t elicit the same urgent need for help that physical suffering does.
But the biomedical theories are even more problematic. The search for a biological mechanism is in part an attempt to ensure that the children’s condition is taken seriously, but it also threatens to neglect all the external factors that have propelled the children into chronic disability. MRI scans that try to unpick the brain mechanism of resignation syndrome are useful research tools and might offer general insights into how the brain controls consciousness and motivation, but there is something faintly ludicrous about expecting scans done on individuals to explain or solve a group phenomenon.
As a neurologist, people expect me to be especially interested in the brain mechanisms that cause disability. But, standing in the bedroom shared by Nola and Helan, the confused neural networks keeping these small children in bed seemed only to be an end point and, therefore, the least important part of what created their situation. A whole lifetime had led Nola and Helan to this place, where they lay in the confines of a Swedish bedroom, the curtains pulled on a sunny day.
Suzanne O’Sullivan is the author of The Sleeping Beauties: And Other Stories of Mystery Illness. She is an Irish neurologist working in Britain. Her first book, Is It All in Your Head?: True Stories of Imaginary Illness, won the 2016 Wellcome Book Prize and the Royal Society of Biology General Book Prize. She lives in London.
Read our interview with Suzanne O’Sullivan here.
Lead image: Bernhard Keil: Young Girl Sleeping.