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By Emily Eakin
THE SLEEPING BEAUTIES
And Other Stories of Mystery Illness
By Suzanne O’Sullivan
In the summer of 1811, a rural Pennsylvania woman named Mary Reynolds fell into a deep sleep from which her family was unable to rouse her. When she finally awoke, after nearly 20 hours, she had no memory of who or where she was, or of a single word of English. According to a doctor who wrote up her case, “She was as a being for the first time ushered into the world” — a tabula rasa. Her disposition was also profoundly changed: Once reserved and melancholy, she was now cheerful and outgoing. Then, after five weeks, she fell into another prolonged sleep, awakening this time as her former self, with no memory of the intervening period. According to her family, Reynolds continued to alternate between these two selves — the first literate and morose, the second childlike and ebullient — for the next 15 years. Hers was the first well-documented case of multiple personality disorder.
Fifty years later, physicians were still circulating Reynolds’s case history, in part because her condition was so exotic. Syndromes like hers remained exceedingly rare until 1973, when Flora Rheta Schreiber, an editor at Science Digest, published “Sybil.” This was the the sensational account of a woman afflicted with 16 different personalities — allegedly the product of childhood abuse — and of her eventual cure, after 11 years and 2,354 psychiatric sessions, in the form of a brand-new, 17th personality integrating all the rest. “Sybil” sold six million copies and inspired a hit television movie starring Sally Field.
It also spawned a diagnosis: Multiple personality disorder entered the DSM, psychiatry’s diagnostic handbook, in 1980 (its name was later changed to “dissociative identity disorder”), and the number of affected patients soared. Thanks to “Sybil,” mental health professionals were called on to treat “multiples” whose double-digit personalities made Jekyll-and-Hyde-style “splits” seem quaint. (You wonder how shrinks figured out whom to bill.)
The philosopher Ian Hacking memorably describes the emergence of multiple personality disorder as a classic instance of science “making up people” — creating, through its power to label, a class of humans that hadn’t really existed before. In “The Sleeping Beauties: And Other Stories of Mystery Illness,” Suzanne O’Sullivan, an Irish neurologist, is also concerned with how science makes up people. She, too, cites multiple personality disorder as a condition whose birth can be pinpointed in time but also in order to emphasize its social origins.
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All illness is “biopsychosocial,” she insists, and though doctors instinctively know this, they tend to focus on the “bio” and the “psycho” at the expense of the “social.” They are trained to “treat illness as personal,” attending to what they can directly assess: the body in front of them, not the cultural context in which that body operates. For a broken leg, heart attack or even a bout of depression, this approach can be effective. But as O’Sullivan shows in her fascinating and provocative book, for poorly understood conditions that fall at the tangled intersection of body and mind, especially mysterious outbreaks of mass illness, we ignore social factors at our peril.
In the case of multiple personality disorder, patients and doctors helped legitimize and spread the diagnosis, the former by recognizing themselves in descriptions of the condition popularized by “Sybil,” the latter by conferring on those descriptions an official name. “As soon as people had this new label applied to them,” O’Sullivan writes, “it was inevitable they would search themselves for other symptoms and signs known to be associated with the disorder. Through that process, they inadvertently took on features of the label and thus became changed by it.” (Hacking calls this the “looping effect.”)
Similarly, she argues, doctors in Sweden (along with politicians, the media and sympathetic citizens) have inadvertently helped to spread so-called resignation syndrome, the country’s ongoing, medically baffling epidemic of refugee children who have fallen into coma-like states as their families’ asylum applications are reviewed and, all too often, rejected. These children are the bed-bound “sleeping beauties” of O’Sullivan’s title, unresponsive to the world around them but lacking evidence of brain damage or disease. Until a few years ago, having a child with resignation syndrome automatically qualified a family for asylum, at which point the child often recovered. “The resignation-syndrome children are told they will not wake up until they are granted asylum, and so it unfolds,” O’Sullivan writes. “They are unconsciously playing out a sick role that has entered the folklore of their small community.”
Freud called the process by which unresolved conflicts are expressed as physical symptoms a “conversion disorder.” More recently, doctors have used the term “psychosomatic illness.” O’Sullivan prefers “functional neurological disorder” (F.N.D.), which suggests a problem with “how the nervous system is functioning” while dispensing with connotations of psychological frailty. F.N.D.s, in other words, leave room for social factors, and, as O’Sullivan repeatedly reminds us, humans are both highly social and highly suggestible creatures. In the right circumstances, even coma-like states and seizures can be contagious. “We embody narratives,” she explains. “If a model for illness is vivid enough and the basis for the illness is sufficiently salient, it is easily internalized by the individual and then passed from person to person.”
O’Sullivan’s interest in narrative is purely pragmatic. She’s no neurologist-poet in the mode of Oliver Sacks but, rather, a globe-trotting Lisa Sanders: a briskly professional but secretly tenderhearted disease detective on a mission to dispel misconceptions that have become obstacles to cures. Her reports from the field are generally not encouraging. In Sweden, she crouches at the bedside of a young Yazidi girl who hasn’t moved in a year and a half. (“I was pretty sure I was going to cry,” she writes. “Sick children in particular upset me.”) But she disappoints her Swedish physician host by asking questions about the country’s attitudes toward refugees instead of probing the girl’s brain function — by all accounts perfectly normal.
In Colombia, she interviews girls stricken with convulsions, victims of an outbreak that began in 2014 and continues to spread, sometimes affecting entire high school classes. In Kazakhstan, she meets former residents of a now-defunct mining town who suffer from a sleeping sickness that renders them unconscious for days. The Colombians believe their symptoms stem from a contaminated HPV vaccine; the Kazakhs are sure they’ve been poisoned by the government in its effort to shutter their town.
When O’Sullivan ventures alternative explanations, she is forcefully rebuffed. “Could some of this have had a psychological cause?” she tentatively asks a Kazakh doctor who treated some sleeping sickness patients. “Could it have been a domino effect, where one person gets sick for some other reason, maybe even poison, which creates anxiety and it then snowballs?” “Niet,” comes the reply.
Whatever we choose to call it — conversion disorder, psychosomatic illness, F.N.D., or, in the case of large outbreaks, mass psychogenic illness — the taint of hysteria, of madness, lurks stubbornly beneath the label, obstructing understanding and blocking the path to recovery. In O’Sullivan’s view, this explains the lack of progress on Havana syndrome, the mystery disorder that, like a plot twist in a Jason Bourne movie, has struck scores of American diplomats and spies, beginning in Cuba in 2016.
Victims complained of hearing a strange noise before the onset of debilitating symptoms — headaches, nausea, dizziness, visual disturbances and memory loss — prompting American officials to speculate about enemy attacks via “sonic weapon.” And though dozens of prominent specialists have argued that the syndrome bears the hallmarks of mass psychogenic illness, doctors working for the government have dismissed the idea as tantamount to calling victims malingerers or fakes. In August, The New York Times reported that the C.I.A.’s leading theory involves microwave energy beams and Russian agents.
O’Sullivan isn’t buying it. She devotes a chapter to the syndrome, methodically demolishing the sonic weapon theory as well as clinical papers that purport to document victims’ brain injuries. At the same time, she chronicles the fraught history of recent U.S.-Cuban relations, and the furor of hyperbolic statements about the disorder given by doctors and amplified by politicians. Hers is a risky move, an armchair analysis made, as she admits, without access to actual patients or classified intelligence. But here, as elsewhere in her book, O’Sullivan’s logic is, well, infectious.
“Havana syndrome was a powerful sociopolitical wave,” she points out. “Many people were caught up in it, including U.S. Embassy staff, politicians and doctors.” She goes on: “I cannot imagine how hard it would have been to resist developing symptoms in that setting, and how difficult it would have been to accept a mass psychogenic explanation with all the ‘experts’ disparaging it so.” Who’s to say Havana syndrome won’t yet turn out to be another striking instance of science “making up people”?
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