Sweden’s Mysterious Sleeping Sickness: Psychosomatic or Coerced?

 

 

 

 

 

Instead of showing warm sympathy when someone I loved had weird or terrible symptoms, I used to hiss, “For God’s sake, don’t tell my mother.” Vicious headache, dizzy nausea, and you could not stop scratching your left arm? Nette would call the next day with a wan voice and an incredibly itchy left arm. Sharp pain in your abdomen? She would develop one immediately.

In most people, copycat symptoms would have been competition, a bid for a share of the attention or a refusal to let someone else’s suffering take center stage. Not my mom. She shied away from attention, lavished it all on other people. She just felt what the other person was feeling, so literally that their symptoms began to plague her body, too.

“Oh, I’m all better, that went away,” I learned to lie, shoving the misery out of my voice. When my husband forgot and mentioned some troublesome ache or rash, I drew a slow line of warning across my throat as soon as she turned away. My mother’s ability to take on other people’s miseries had become a family joke, but it was not a ploy; instead, it was a troublesome commingling of sensitivity, anxiety, love, and suggestion.

I think of Nette when I read about the sleeping sickness in Sweden. In the past two decades, more than one thousand children have taken anxiety and dread deep into their bodies, falling into what has been named uppgivenhetssyndrom, a giving-up we translate as “resignation syndrome.” They withdraw into a catatonic state, showing no response to stimulus, sustained for months or even years by a feeding tube and diapers.

At first, the condition was thought to be culture-specific, because it was happening only to the children of migrant families from the former Soviet republic and Yugoslavia. But resignation syndrome only showed up in Sweden, not the children’s home countries, and soon there were a few cases in refugees from Africa and Bangladesh, too. The two sisters in the most recent article, an excerpt from Irish neurologist Suzanne O’Sullivan’s book The Sleeping Beauties, are Syrian refugees.

Timing seems a more likely catalyst than culture: The illness struck after the families lost their final appeal for permanent asylum. And nearly all (but not all) of the children began to recover as soon as the Swedish government, shamed by psychiatrists accusing them of systematic child abuse, relented and granted permanent asylum.

Here, skepticism creeps in—could this be an elaborate scheme? I slap the thought away. These children have gone through a hellish journey and reached a precious, precarious safety, and now it is being withdrawn. The Syrian refugees are Hazidi, a minority that has been gang-raped and tortured with impunity. Told you must return to that? Giving up is reasonable.

O’Sullivan is introduced to the family by a Swedish physician she identifies as Dr. Olssen, describing her as a retired ear, nose, and throat doctor. In her sixties, Dr. Olssen has brown hair with a distinctive triangular white patch in front. She is eager for a brain doctor to examine Nola, age ten, and her older sister, Helan, because western medicine still pays more attention to any illness that has a distinct physiological cause.

The exam and history are consistent with hundreds of other cases: The children’s bodies do not respond even to painful stimuli, yet a battery of tests has shown that everything to be normal: their brain waves and reflexes, their blood and spinal fluid, even their sleep-wake cycles.

Intrigued, I dig up a 2017 New Yorker profile of Dr. Elisabeth Hultcrantz, a Swedish ear, nose, and throat doctor who, as a volunteer for Doctors of the World, has already cared for forty of these young patients. Hultcrantz’s hair is solid white, but when I scroll a little deeper in a Google Image search, I see her with brown hair and a distinctive triangular white patch in front.

Hultcrantz has to be Dr. Olssen. Maybe one of these names belongs to her husband? I email O’Sullivan at the only address I can find but receive no response.

In the New Yorker story, Hultcrantz introduced Georgi, a young Russian boy who fell into this sleep and lost so much weight, she urged the family to take him to the emergency room. Children need a sense of trust, belonging, safety, and calm in order to thrive, she told journalist Rachel Aviv, and only with guaranteed security could these patients recover.

“She sometimes encourages families to “get their tubing”—the feeding tube—as quickly as possible, in order to emphasize their suffering to the Migration Board,” Aviv wrote. She worried that the doctor’s earnest, passionate insistence on permanent asylum might have influenced the children, making an earlier recovery less likely. But she spoke to more than twenty Swedish doctors about resignation syndrome, and while none had an explanation, they were all convinced the illness was genuine.

Fast forward to 2019 and an exposé in the independent Swedish magazine Filter. Two of the refugee children were now adults, and they had told an investigative reporter that their families coerced them into feigning unconsciousness and eating only through a tube.

After the Filter article was published, Expressen, a liberal Swedish daily newspaper, dug into earlier allegations and reported that “those who questioned the epidemic were accused of having xenophobic motives.” Because no one wanted to seem racist or cruel, children were allowed to suffer quietly, sometimes for years.

After the Filter report, the government board canceled the diagnosis. Online descriptions of resignation syndrome were amended with caveats about possible fraud. But now I am skeptical in the opposite direction, because even if some families faked the illness, that does not automatically make all the instances false. What if a kid was depressed enough to shut down, and the weakness just progressed? What if a child followed her sibling into the illness, unconsciously influenced by repeated assurances that it could win their family a reprieve?

I think back to O’Sullivan’s account, and how at one point, Helan’s eyes opened and looked at her. “She’s awake,” O’Sullivan murmured.

“Yes, Helan’s only in the early stages,” Olssen replied.

Georgi recovered and told Aviv, “All my will—I didn’t have it anymore. My whole body was like water.” Could trauma do that? Yes. Helplessness and dread? Of course. Data is transferred nonstop between brain and body, and every cell inside us participates. What about an unconscious wish to help your parents? That, too, could produce symptoms. I think of O’Sullivan’s description of Nola’s muscles, limp except in the cheeks, where they were rigid, her teeth clenched shut.

Could emotional contagion play a role, if kids heard of other instances? Absolutely. Even suicide is contagious. In these desperate circumstances, a handful of genuine cases could have been enough to spread the syndrome. What about parental restraint and passive obedience? Henri Laborit’s experiments showed that even rats, when they are inhibited from acting and can neither fight nor flee, will withdraw, grow weaker, and develop illness. An attempt at deception could have mimed the symptoms and then caused real illness.

We have swung from disbelief to automatic belief, and neither honors the truth: Our minds and bodies are inextricable—from each other, but also from the minds and bodies of those around us.

 

 

Read more by Jeannette Cooperman here.

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