What a mystery illness can teach us about how to navigate postpandemic stress

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Brandy Schillace is the editor-in-chief of The BMJ’s Medical Humanities journal and the 2018 winner of the Arthur P. Sloan Science Foundation award. She is the author of three books, most recently Mr. Humble and Dr. Butcher: A Monkey’s Head, the Pope’s Neuroscientist, and the Quest to Transplant the Soul.

The children look peaceful. Their arms are draped over printed pyjamas; their heads are nestled against cotton pillows. But they do not stir, and they do not wake.

The first cases of this condition, known as resignation syndrome, appeared in Sweden in the late 1990s. But by 2005, more than 400 children had slipped into a state that looked much like a coma, except that brain scans showed normal function. Some of them would go on sleeping for years.

The standard medical diagnostic tools found that the children were healthy and disease-free. But despite the best efforts of doctors and the children’s anxious parents, the children remained unresponsive. Frustrated physicians had no answers – only many questions. Had it happened before? What was the cause? Could it be contagious?

Or could it be psychosomatic?

In common parlance, that word – “psychosomatic” – carries a lot of baggage. People with psychosomatic symptoms are accused of faking their illness, of it being all in their heads. One woman in Britain went to doctors and hospitals complaining of having gone blind, but because medical tests found no irregularities, she couldn’t get a diagnosis: “You think I’m mad,” she said. Similarly, many initially believed that the children with resignation syndrome were just play-acting, or perhaps malingering, or showcasing Munchausen syndrome by proxy. Even now, resignation syndrome remains “doubted and dismissed” by those in powerful positions.

But the experience of psychosomatic illness is real, even in the absence of disease: It means that the body responds to psychological distress in a physical way. In the case of resignation syndrome, the children could breathe on their own, their hearts beat strong, and their other systems were online – but they could not wake or feed themselves. Without intervention, each of them would have starved to death.

Despite some doctors’ skepticism, somatic disorders can, as above, actually lead to death. It’s essential then, that, we learn more about them.

What doctors came to understand about resignation syndrome in those original children was that it was precipitated not by a virus, but by a war. In an article for Frontiers in Behavioral Neuroscience, Karl Sallin reports a rise in cases, and makes note of an official inquiry and an expert committee that proposed explanatory models involving individual “vulnerability, traumatization, migration, culturally conditioned reaction patterns.” The children’s parents had fled to Sweden from Kosovo, seeking asylum amid rising tensions and hostility between Albanian and Serb communities. When these tensions at last erupted into war in the late 1990s, atrocities were committed not only by the armies, but also by police and paramilitary groups. Some of these war crimes – from kidnapping to rape and murder – are still being investigated and prosecuted today; many will go forever unpunished.

Those Kosovans who managed to escape with their families faced new trials upon seeking safe harbour. In Sweden, refugees had to undergo extensive questioning, which their children often had to witness. Then, despite efforts to remain, some of these families faced the awful stress of potential deportation back to Kosovo. In one such case, the news caused a young child to withdraw. She didn’t want to play; she didn’t want to eat. Then one night she went to sleep and would not wake up. Others would soon follow. Swedish psychiatrist Dr. Elisabeth Hultcrantz expressly made the connection between the condition and fear of deportation, but the cases were not limited to Sweden or to the same conflict.

In 2017, the BBC reported on a young girl given the pseudonym of Sophie, whose family had fled a mafia in their formerly Soviet home country. Similarly, not all cases have appeared in Sweden – it also appeared among refugees in Australia and more recently, the small Micronesian island of Nauru. Yet each child had witnessed traumatic events, often involving parents or loved ones. Each had his or her life upended, their family structures and living arrangements altered, and had felt utterly helpless in a hopeless situation.

For these reasons, their conditions have been likened to post-traumatic stress disorder (PTSD), which first appeared as a diagnostic term in 1980, and today turns up in television, movies and other popular media. The condition is usually characterized by the patient reliving their trauma. Louise Newman, an Australian developmental psychiatrist and clinical researcher with Melbourne’s Monash University, explains that sufferers of resignation syndrome conversely escape their trauma by “withdrawal of awareness.” Dr. Hultcrantz agrees; the children themselves, she tells parents, do not “suffer” their condition, but are protecting themselves from it. Resignation syndrome, then, acts as a kind of coping mechanism – and it may not be particularly new. In his 2016 Frontiers article, Mr. Sallin described concentration camp victims refusing to eat and entering a catatonic state. In all of these cases, withdrawal may seem like giving up, but is instead a desperate attempt at survival – keeping the mind safe, even if it’s at the expense of the body.

Not every refugee child falls victim. But then again, not everyone suffers from PTSD. There are multiple factors, but one of the most important is social context. Recent work by neurologist Suzanne O’Sullivan contends that resignation syndrome is another example of “a social disorder masquerading as a medical one.” In a coming new book, she compares resignation syndrome to a type of “mass hysteria” – once again, a term that is loaded and misunderstood (and all too often used to malign women). But at the term’s core is a fundamental principle: The syndrome begins in the mass society around the sufferer.

For children, psychological and emotional stress may not be given room for expression even in the best of situations. But what children unconsciously come to learn is that when they display their needs through physical means, they are given attention. As Dr. O’Sullivan put it in her book, The Sleeping Beauties: And Other Stories of Mystery Illness, “the children reacted to their situation by unconsciously playing out a sick role that had entered the folklore of their small community.” Put another way, the kind of symptoms displayed are the ones that are “culturally sanctioned” – the ways in which they’ve learned they’re permitted to express trauma, even unconsciously.

If a disorder is somatic, then we have no reason to worry about viral contagion. Given our experiences with the COVID-19 pandemic, that feels like a considerable relief. But if Dr. O’Sullivan is correct about the syndrome’s relationship to mass hysteria, then we have other, greater concerns. The more a disorder occurs, the more seriously people take it – and so, the more it occurs. Somatic trauma may not carry an actual viral load, but it can still be, in its own way, contagious.

So if resignation syndrome and other similar conditions – including pervasive arousal withdrawal syndrome, which results in a refusal to eat or walk, and aspects of “learned helplessness,” where emotional stress puts a person to sleep – are caused by social context, uncertainty and trauma, and if they are also in a manner socially contagious, especially among the very young, then COVID-19 has primed us for an epidemic of somatic trauma.

The Anxiety and Depression Association of America refers to it as the COVID-19 Cycle, a constant state of social anxiety and withdrawal in children and teens in the aftermath of pandemic lockdowns. In a New York Times article from November, 2020, 19-year-old Nicole DiMaio described the feeling as “suffocating” chest heaviness, like the pressure of water. A national study found that half of the teens polled were suffering from worsening mental health, with many choosing to withdraw from their families to sit alone in their rooms. Sometimes described as burnout, but increasingly taking the name Post-COVID Stress Disorder, children and adults alike have exhibited symptoms from fatigue to mood swings, loss of interest in activities and depression.

It’s little wonder why. As with the asylum seekers, we who survived the pandemic may have lost loved ones, witnessing their decline but being unable to help (or in some cases, even to visit or to touch them). We’ve witnessed death and grief as well as political, medical and social-system collapse. We may not have fled war-torn countries, but many of us did experience upended family structures as quarantine separated some members while others were forced to live or work in too-small spaces. Disrupted education, disrupted lives and a constant flood of horrific news as death tolls climbed worldwide have prompted young people to effectively experience the COVID-19 pandemic as a trauma, and with viral mutations occurring, we still face deep uncertainties.

There have not (yet) been cases of resignation syndrome among survivors of the pandemic. There have, however, been unusual instances of disordered consciousness among COVID-19 patients. When 68-year-old Frank Cutitta had his breathing tube removed after surviving 27 days on a ventilator in a Massachusetts hospital, doctors expected him to rise to consciousness in a few hours after the sedatives wore off, as typically occurs. But Mr. Cutitta didn’t wake up. And he wasn’t alone in this experience: At New York’s Columbia University Medical Center, approximately every fifth patient hospitalized with COVID-19 “had some degree of disorders of consciousness,” according to the centre’s director, Jan Claassen. Some post-intubation patients are “still not following commands and still not expressing themselves weeks later,” said Nicholas Schiff, a neurologist at Weill Cornell Medicine in New York.

No one knows why. Perhaps it’s a lack of oxygen to the brain; scans suggest that COVID-19 can alter and injure brain function. Perhaps lingering coma is another mysterious effect of long COVID, as the body struggles back to health. Or perhaps it is something more. There is no link between disrupted consciousness as part of COVID-19 recovery and resignation syndrome, and there are many other factors to consider concerning persistent coma. But if the body can choose a somatic response to shield us from trauma, a similar framework could help us better understand what’s happening to us now, and how to prevent problems in the future.

Mr. Cutitta did wake up eventually. No one has answers for that, either – but it’s worth noting that the family recorded encouraging messages for him to listen to in the intensive-care unit. They wanted to give him hope and encourage him to come back home.

Indeed, the health professionals who treat resignation syndrome agree that trauma is the cause, and that hope – no matter how un-medical it may sound – may act as a cure. A number of the children in Sweden, for instance, awoke when their families were granted the security of permanent residence there. Dr. O’Sullivan reported that one young girl described it as “like being in a dream that she didn’t want to wake up from”; a boy felt that he was in a glass box deep in the ocean. They did not choose to sleep; their bodies did that for them, a protective circle of unconsciousness to shield them from a world they could not control. Bringing them back required safety, routine, care – and, yes, hope. We’ll need that too, as our society recovers from this pandemic.

Science and medicine have been little short of miraculous in facing COVID-19, from the care offered by front-line health care workers to the production of vaccines at remarkable and accelerated rates, to research into boosters against variants. But there is no pill to treat the grief, pain, uncertainty, and isolation felt by both children and adults on this side of the pandemic. We must invest in social supports, instead, because there is no immunization for emotional exhaustion. It will live in us, as trauma, for a long time to come.

We must move forward gently. But we must also focus our efforts on building safe spaces for Generation C – the children for whom COVID-19 will be the most formative experience of their lives. If we are to be better prepared for a coming mental health crisis than we were for the virus, then we must focus on the mass and systemic problems affecting our societies. It wouldn’t necessarily guarantee the safety of the future, but investing in the future of our safety could be our best and greatest hope.

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