When illness is invisible

Alice Robb in New Spectator:

When the London-based neurologist Suzanne O’Sullivan flew to Sweden to visit a sick girl in a small town north-west of Stockholm, the child did not acknowledge her. Not when O’Sullivan entered her bedroom, or when she knelt down to introduce herself, or even when she examined her. Nola (not her real name) wasn’t trying to be rude. It had been more than a year since she had got out of bed, opened her eyes or moved at all. A feeding tube, taped to her cheek, kept her alive.

Yet her vital signs were normal; medical tests found nothing amiss. Nola was suffering from a mystery illness known as “resignation syndrome” that afflicts hundreds of children in Sweden. The first cases were officially documented in the early 2000s: children were falling into a sleep so deep that – for days, weeks, even years – they could not be roused. Whatever their parents tried, they did not respond. If the children were pulled into an upright position, they fell back, limp, like rag dolls. The children were sent to the hospital, where doctors performed every test they could think of. Cat scans and blood tests came back normal. EEGs showed brainwaves that zigged and zagged in a healthy pattern. Blood and urine analyses ruled out the possibility that they had been poisoned. The children’s physiology was normal, and their psychology was inaccessible; they were hardly able to fill out Rorschach tests or talk about their past. It was their unique social circumstances that gave clues into their condition. All of the children were refugees, and they had gone to bed during the long process of applying for asylum. When they fell asleep, they were facing deportation to countries they scarcely remembered, where their families had suffered severe trauma.

Nola and her family were members of the persecuted Yazidi minority. When they fled their home in rural Syria, Nola’s mother was facing death threats as a result of being assaulted by four men. They arrived in Sweden when Nola was a toddler – her age was estimated at around two and a half – and were granted temporary residency. (When O’Sullivan met her in 2018, Nola was thought to be about ten.) As their parents embarked on the lengthy journey towards permanent asylum, Nola and her siblings settled happily into their new home, becoming fluent in Swedish and making such close friends that, months after Nola stopped speaking, they continued to visit her at home. It was after receiving the news that their application had been refused – via a letter that Nola and her siblings had to translate for their parents – that she began to withdraw.

More here.