The Swedish word uppgivenhepssyndrom, sounds like what it is: a syndrome in which kids have given up on life. That's what several hundred children and adolescents have done, literally checked out of the world for months or years, unable to move, eat, drink, speak or respond. All of the victims of the disorder, sometimes called resignation syndrome, have been youngsters seeking asylum after a traumatic migration, mostly from former Soviet and Yugoslav states. And all of them live in Sweden.
Rachel Aviv, a staff writer at the New Yorker, described these children in the April 3, 2017, article "The Trauma of Facing Deportation. "
The children go into these coma-like states when their families are notified that they will be deported. The only known cure is for their families to receive residency permits allowing them to stay in Sweden. It's not a sudden, magical reawakening when family members read the approved residency permit in the non-responsive child's presence. Somehow, the information gets through. While there are no long-term follow-up studies, Aviv says, over a period of days, weeks, sometimes a few months, the child begins to eat, move, react and come back to the world. Goats & Soda talked with Aviv about the story.
The story is shocking. It reads like one of those ancient fairy tales where terrible things happen to innocent children. Were you initially skeptical that this was a real disorder?
I first read about it in Frontiers in Behavioral Neuroscience. Because I was reading about it in an academic article, I didn't think to doubt it. But when I met the two girls I wrote about, it felt very strange. There was a sense of unreality. There was a disconnect between how young and healthy, even beautiful, they looked. They looked like they were sleeping. It was a sickening feeling to know that they were in that position for years. People make comparisons to bears hibernating. But humans don't hibernate. It felt surreal.
The two sisters you wrote about were Roma, from Kosovo. The older sister lost her ability to walk within 24 hours of the family's application for residency being turned down. Her younger sister is also "bedridden and unresponsive."
They were lying in bed. Their doctors were manipulating their bodies, and the girls did not show any signs that they were aware that there were people around them. When I met them, one of the girls had been in that state for two years, the other one only for a few months. When the doctor shined a flashlight on the girls' eyes, the one who had been sick the longest, she just sort of stared directly at the doctor as if she didn't even notice that someone was opening her eyelid.
I met a boy that I didn't write about. He lived in a hotel. He and his mother had received a residency permit already. He had been apathetic for about two years [while the family waited and worried that they would be deported]. Even though his family had received the residency permit about three months before, the only progress he had made was to open his eyes. He was sitting up, but he could not hold his head up on his own. We'd be talking — his family, his doctors — and suddenly I'd remember that he was in the room. It was almost as if there was a mannequin in the room that I kept forgetting about. He didn't seem to be there mentally. That was concerning. He should have been recovering by then. His doctors were hopeful that he'd get better, but there have been almost no follow-up studies about what happens to these children.
You did write extensively about Georgi from the Russian province of North Ossetia, who went to bed and stayed there when his family's permit was denied in 2015. "In late May, 2016, Georgi's family received another letter from the Migration Board. Their neighbor Ellina Zapolskaia translated it. "The Migration Board finds no reason to question what is stated about Georgi's health," she read out loud. "He is therefore considered to be in need of a safe and stable environment and living conditions in order to recuperate." What was his recovery like?
I would never have known that he was sick. He looked and acted completely normal. But even with complete recovery, some of these children have missed two years of their lives, and that's a big deal.
Is it possible that the children who went into these coma-like states knew of the syndrome? And if so, might they have been unintentionally showing symptoms as a way of saving their families from deportation?
I think everyone acknowledges that there's a degree of psychological contagion. Georgi had a family friend with the condition; the two sisters had a cousin; and the boy in the hotel saw at least three other children in the hotel with the syndrome. It's a little like the way anorexia emerged in the U.S. at a moment in time when people were preoccupied with body image and the media were emphasizing thinness. The illness borrows from the culture, and suddenly you have all these people who are starving themselves and doctors began diagnosing anorexia. It's hard to pinpoint what the mechanism would be for children to develop resignation syndrome. It seems to have become a culturally permissible way of expressing one's despair.
There was a government report that came out in 2006. The report posed a theory that the children, many of them Roma, came from holistic cultures, without a clear boundary between the individual self and the family. The children were sacrificing themselves for their families. They take on a martyr role. And, in fact, the illness does allow the family to stay. [Sweden's Migration Board has decided that families of uppgivenhepssyndrom children will be granted residency permits.]
Immigrants, refugees and asylum seekers all over the world suffer. Has this happened anywhere else?
I've not heard of children with these symptoms anywhere else. I have no doubt that children from Syria, for example, are experiencing fears and traumatic reactions, but there is no evidence that they are slipping into this syndrome. There was a slang term, muselmann, referring to captives in concentration camps in World War II. They were people who decided to stop trying, to just sort of give up. Once you realize that nothing you do will change your situation, you give up and become passive. But that wasn't quite the same thing.
Why is this happening to children in Sweden?
Yes, why Sweden? Refugees there are among the best treated in the world. There's a national conversation about refugees, people are consumed about how best to treat people seeking asylum. People feel a lot of guilt about whether the country is living up to its humanitarian ideals and doing enough.
So doctors are primed to think about how social conditions can affect health. And I think culture shapes the way we express our despair. Once a particular set of symptoms becomes sanctioned as a way of showing suffering, it becomes more common.
One thing I admired in Sweden was the way these children galvanized the national conversation. The government was concerned, the media were concerned and politicians were concerned. At so many levels, there was so much conversation about symptoms of children seeking asylum.