The children afflicted by war are more likely to suffer from a series of health conditions, as we see with the Syrian children now facing a mental health crisis like no other. But in Sweden, a somewhat unknown syndrome is devastating yet another group of asylum seeking kids.
“Uppgivenhetssyndrom” is the Swedish term for the syndrome in which kids check out of the world for months or even years, but resignation syndrome also applies.
This disorder appears to be a response to great trauma, as these children seem to be simply giving up on life. But the fear of returning to where they came from may be what's actually triggering it.
So far, the only victims of this disorder are children and adolescents seeking asylum after traumatic migrations from countries such as Kosovo, Serbia, Azerbaijan, Kazakhstan, and Kyrgyzstan, or former Soviet or Yugoslav states. Cases of the resignation syndrome have only been registered in Sweden.
Rachel Aviv, who visited Sweden to see this phenomena for herself, says in her New Yorker article that children go into coma-like states once their families are notified that their deportation is imminent. In cases involving families that finally obtain residency permits, children slowly begin to regain interest in life. It often takes days, weeks, or even months, but they eventually start eating, moving, and even reacting again.
At first, Aviv says that she learned about the syndrome while reading an academic article, which made the disorder seem terrifyingly real.
“They looked like they were sleeping,” she told NPR. “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.”
In her New Yorker story, Aviv chronicles the stories of two Roma or Romani sisters from Kosovo: Djeneta, the younger of the two who has been bedridden for two and a half years, and Ibadeta, who was 15 at the time she lost the ability to walk.
In October 2015, Elisabeth Hultcrantz, a doctor who volunteers for Doctors of the World, wrote a letter to the Swedish Migration Board saying that the “only thing that can help the whole [Roma] family get out of their sense of powerlessness is if they can be guaranteed security.” Due to the traumatic experience they went through, Djeneta had already been unresponsive for over a year by then, but a year later, when their application was denied, it was her older sister's turn.
Without residency papers, Ibadeta lost the ability to walk within 24 hours. Trying to force her to go to school, her father, Muharrem, put her on the seat of her bicycle and pushed it. Once they arrived, she was limp. The frustrated parent had to carry her home and lay her to bed, where she has been for the past five months.
When Aviv met the two, they were lying in bed. Doctors would manipulate their bodies, “and the girls [would] not show any signs that they were aware that there were people around them.”
She told NPR:
“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.”
Because there aren't many follow-up studies on these cases, it's hard to know what happens to children once their families are allowed to stay.
While one child Aviv talked to recovered quickly after the family received their acceptance letter, another boy whose story failed to make it to the New Yorker piece has yet to regain his senses.
“Even though his family had received the residency permit about three months before, the only progress he had made was to open his eyes,” she said.
When asked if this strange yet heartbreaking condition has been spotted elsewhere in the world, Aviv says “there is no evidence that [others] are slipping into this syndrome.”
So what is so special with refugees coming from former Soviet and Yugoslav states? Nobody knows — but there are theories.
In a 2006 report from the government, Aviv told NPR, researchers posed a theory that stated that many of the children known to suffer from Uppgivenhetssyndrom were Roma and had come 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,” she added. And as it turned out in Sweden, families whose children suffer from resignation syndrome are now being allowed to remain in the country.
Before this modern phenomena, Aviv says that another term known as "muselmann" referred to captives in World War II concentration camps who would stop trying, give up, and become passive. Still, there had been nothing quite like the resignation syndrome until now.
As the world is forced to discuss the refugee crisis, knowing that millions of people — including children — are being displaced by wars ravaging countries, such as Syria, and knowing that children of other cultures are also experiencing a mental health crisis, helps us have a better idea of the importance of ensuring people are given a second chance.