Sleeping beauty: unravelling Sweden's mystery illness, resignation syndrome

"If you looked at her, you would think that she almost looked healthy. You know, she just looked like an attractive girl laying on her bed, her hair spread out on a pillow. And she looked really quite healthy – except that she had been lying like that for over a year. She had a tube through her nose to feed her, which was really the only indication that there was anything wrong with her."

This is how neurologist Dr Suzanne O'Sullivan describes one of the patients she visited in Sweden, a ten-year-old Yazidi girl. The young girl had been diagnosed with resignation syndrome, an illness that to this day remains somewhat perplexing. "The first documented cases were around 2004. They were children in Sweden and they were kids that exclusively came from a group of people seeking asylum in the country," O'Sullivan explains. "[The children] began to fall into this sort of apathetic stage. They would first become very quiet, stop playing, and stop eating. Then it slowly progressed until the children lay in bed having completely stopped moving. Over a period of weeks, it usually evolved into a state where they just appeared to be asleep."

Despite seeming to be sound asleep, these children's brain functions suggested otherwise. "If you check the kids' brainwaves to see if they're asleep, they indicate that they are awake, but clearly aren't able to interact with the world," O'Sullivan says. Calling their state a coma is incorrect, as the children's brain scans show no disruptions. In a 2017 piece in The New Yorker, a young Russian patient residing in Sweden experienced the same was eerie symptoms: "He had felt as if he were in a glass box with fragile walls, deep in the ocean. If he spoke or moved, he thought, it would create a vibration, which would cause the glass to shatter." The boy had been in that state for five months.

Over the course of 20 years, Sweden has recorded hundreds of resignation syndrome cases. Reportedly exclusive to the children of asylum-seeking families, the mysterious illness begs the question: Why did these kids from particular backgrounds suddenly become apathetic? And although there are asylum-seeking families everywhere in the world, why has resignation syndrome only appeared in Sweden?

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According to O'Sullivan, the answer could lie in the highly distressing circumstances these individuals have faced in their country of origin, combined with the heavily contrasting environment they are then are immersed into in their new home country. Some patients showed symptoms before arriving in Sweden, while others slowly withdrew during the lengthy asylum application process that often involved several rejections.

The power of the mind over the body is often underestimated, and O'Sullivan says these psychosomatic illnesses (psychological conditions involving the occurrence of physical symptoms) are more common than we think. "Our thoughts and ideas don't just live in our brains. They are expressed through our bodies," she says. "For example, you can tell a confident person from a nervous person just by looking at them."

Some resignation syndrome patients can be “asleep” for months, some for years, and research is still ongoing in an attempt to determine the ultimate cure. O'Sullivan reminds us that the recovery process is not straightforward. "Children in this state who have been offered asylum will wake up and will get better, but you don't offer them permanent asylum and then they immediately open their eyes and get out of bed or even do so a day later," she says. "If they've been lying there for a long time, it takes them months and months to get better."

Nevertheless, Dr Karl Sallin, a paediatrician at Karolinska University Hospital who has specialised in studying resignation syndrome, notes: "It was previously thought that giving residency was necessary for the children to recover," he explains. "But recently – things have changed, and in the light of new data, the professional opinion has shifted. Instead, the focus is on disincentivizing being ill by removing the asylum process from treatment, and when necessary separating the patient from the rest of the family, all while ensuring stimulation through everyday activities."

Today, resignation syndrome cases in Sweden have significantly decreased; in 2022, only four cases have been reported so far. Both Sallin and O'Sullivan agree that the mysterious illness could likely disappear entirely in the future. "If you look at the history, there are waves of illness like this,” says O’Sullivan. “What won't disappear is that people will express distress and ask for help by getting physical symptoms. But what will change is the type of symptoms and how they are explained."

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Although resignation syndrome appears to be declining, it remains a fascinating research topic. Medical experts like Sallin and O'Sullivan continue to explore possible causes and treatments for the illness, while pointing out that the syndrome's long-term effects are yet to be fully studied. As O’Sullivan notes, "The more active studies have really been only in the last couple of years, so there's still a lot unknown about it."