Autor asserts 'the body is the mouthpiece of the mind
The Sleeping Beauties And Other Stories of Mystery Illness
Suzanne O'Sullivan, 2021
Suzanne O' Sullivan is an Irish neurologist who has studied instances of psychosomatic illness, or functional neurological illness (FND) around the world and does clinical work with "patients who lose consciousness through a psychological mechanism rather than as a disease process." She asserts that "At least a quarter of those who are referred to me with seizures, many of whom believe they have epilepsy, prove to be suffering from dissociative, or psychosomatic, seizures. Those high numbers are not specific to my clinical practice." Common psychosomatic ailments include "Paralysis, blindness, headaches, dizziness, coma, tremor or any other symptom of disability one can imagine," though all of these ailments may have physical causes as well. Furthermore, "it's not just a neurological phenomenon; any organ in the body can be affected and almost any symptom can be generated in this way -- skin rashes, breathlessness, chest pain, palpitations, bladder problems, diarrhea, stomach cramps, and on and on" O'Sullivan asserts.
O'Sullivan's view is that "the body is the mouthpiece of the mind .. " Psychosomatic symptoms have a story to tell through a somatic language people are often reluctant to hear. One of the most interesting themes of this outstanding book is the author's struggles to communicate her views of the causes of FND with a contagion effect to families, physicians and community residents who are strongly resistant to hearing them. Those who suffered or have recovered from severe neurological ailments such as seizures or sleep disorders (and their friends and family) are usually determined to find a single identifiable physical cause that validates the reality of what they have experienced; and which proves they were not feigning illness, malingering or imagining conditions that turned their lives upside down. O'Sullivan's perspective was not welcome in these families and communities; but her presence was tolerated because of her curiosity, empathy and listening skills, and because she was clearly not passing judgment on those who had suffered, most of whom she does not regard as unusually psychological vulnerable. In her view, instances of what used to be referred to as mass hysteria, and is still described as psychogenic illness, are really "sociogenic" phenomena. She asserts that "the social element should never be underestimated .. " In other words, the language of somatic ailments often speaks for entire families and communities, not just the symptomatic person.
O'Sullivan writes with extraordinary clarity which makes her book a pleasure to read. She is a great story teller. The Sleeping Beauties Takes its title from children of asylum seeking immigrant parents in Sweden, many of whom have been denied asylum after years of legal processes, including hearings at which children were present. Beginning in the early 2000's, hundreds of these children have become apathetic, withdrawn from the world and fallen sleep, sometimes for years. These children are commonly described as suffering from "resignation syndrome," an affliction that is "not indiscriminate. It is a disorder that exclusively affects children of asylum seeking families" when their families "were faced with the long process of asylum application." Children from countries of the former Soviet Union and the Baltics, and Yazidi children from Syria, are disproportionally represented among children with resignation syndrome. Some children have recovered when their families have been granted asylum, but some have not recovered. And " ... recovery was in line with recovery from any chronic serious illness -- gradual and dependent on the length of the illness and degree of disability present."
In past years, many children with resignation were hospitalized and given tests under the supervision of a variety of specialists. O'Sullivan writes: "once tests came back as normal, there were inevitable accusations that the children were pretending to be sick, which is so often the fate of people whose physical disability cannot be explained by an organic disease process .." O'Sullivan asserts that there has been one documented case of feigned illness out of hundreds of cases in Sweden during the past 20 years. Children (some as young as 7) separated from their parents and placed in hospitals' intensive care units "still didn't wake up." They were fed through feeding tubes. Physicians have appealed to the all purpose explanation of stress, or early trauma, or to hormonal changes to explain resignation syndrome. However, "There are asylum seeking families all over the world, but none have responded to their situation like the children in Sweden," O'Sullivan asserts.
O'Sullivan believes it is ludicrous to expect brain scans done on individual children to explain a group phenomenon affecting hundreds of children over 20 years, while giving limited attention to the social context in which resignation syndrome has occurred. She writes: " Not only is resignation syndrome restricted to children seeking asylum in Sweden, it is restricted even within that very specific group." "It has not been reported in refugees who originated in Africa or in any other nationality or ethnic group"'
O'Sullivan describes her examination of two Yazidi children, Nola and Helen, ages 10 and 11. Nola, the ten year old, had not opened her eyes in 18 months, according to her family, while 11 year old Helen had mostly slept for several months, but occasionally opened her eyes. The parents informed O'Sullivan that they fled threats from both within and outside their family before arriving in Sweden almost 8 years ago. O'Sullivan found the girls to have normal reflexes and good muscle tone, though she found that Nola clenched her teeth. A year later, just before the publication of The Sleeping Beauties, the sisters were still asleep. O'Sullivan asserts: " ... everybody -- family, doctors, officials -- knew why Nola and Helen were sick. And they knew exactly what was requires to make them better." The only mystery in resignation syndrome is the neurological correlates, i.e., how brains that showed no abnormality on standard tests could induce unending sleep for months or years?
O'Sullivan describes resignation syndrome as a "language of distress," but in her account it is more like an active protest, the very opposite of resignation, which says somatically with the same clarity but greater power than words, "I will not live and be conscious in these circumstances." One child who recovered "said it was like being in a dream that she didn't want to wake up from."
Of the several other lengthy stories of psychogenic FND in The Sleeping Beauties, in only one does the somatic language speak with the clarity of resignation syndrome. In her chapter, "Paradise Lost," O'Sullivan recounts the story of more than 130 adult residents of Krasnogorsk , a small town in Kazakhstan, who for several years had been afflicted with a mystery illness. Many of the residents of Krasnogorsk had fallen asleep for lengthy periods of time, though not for months or years as in resignation syndrome. Medical tests revealed no abnormality or cause of illness. However, there were a wide range of symptoms, e.g., uncontrollable laugher, hallucinations, convulsions in some afflicted persons. Some victims lost the ability to walk or talk. The illness affected men, women and children, and spread rapidly throughout the community.
O'Sullivan found that those afflicted with the mystery illness shared a common history, i.e., they had been forced by the government to move from Krasnogorsk which they viewed as a "paradise." O'Sullivan was dumbstruck by her informants descriptions of Krasnogorsk, which she found to be an unexceptional abandoned small town full of junk, but which her informants remembered as a place where, unexpectedly, all of their needs were met for the only time in their lives, apparently because the government wanted to create a place where workers were willing to live. The adults who were forced to leave Krasnogorsk were sure that the government had deliberately poisoned them to force their unwilling departure, an explanation O'Sullivan views skeptically, though she did not openly scoff at this deep seated belief of her informants. In the course of O'Sullivan's balanced and level headed account of the history that preceded the appearance of a wide range of psychosomatic symptoms it became apparent (to me) that those expelled from Krasnogorsk had found a language of grief and an antidote to grief, which occurred in waves like the mystery illness. Years of investigations showed "no objective evidence of a disease process, no matter how sick they were. No animals got sick. No reporters. No scientists. No government officials. Recovery was spontaneous on every occasion ... "
The former residents of Krasnogorsk did not relinquish the belief that they were deliberately poisoned by a malignant government after O'Sullivan's exhaustive investigation and multiple interviews with them and medical experts. They hung on to their belief despite logical inconsistencies. O'Sullivan comments: "Psychosomatic disorders can be constructed from internalized stories. The narratives are built like scaffolding, unstable at first, but, stage by stage, new elements are added until the construction is sturdy enough to support the symptoms." Those who suffer from mystery illnesses eventually find a story that is plausible to them, regardless of the naysaying of medical experts, and confirmation bias does the rest.
The Havana syndrome
The chapter of The Sleeping Beauties most likely to excite controversy is "Horses not Zebras," which concerns the Havana syndrome, alleged attacks on American diplomats in Cuba which began in December 2016. According to O'
Sullivan, " ... a cluster of American diplomats in Cuba fell ill with a similar array of symptoms: headaches, earache, hearing impairment, dizziness, tinnitus, unsteadiness, visual disturbance, memory problems, difficulty concentrating and fatigue." Within six months, there were seventeen cases." A number of U.S. personnel were evacuated to the U.S. where they underwent extensive tests. Physicians concluded that "this was a unique constellation of symptoms that represented a new syndrome they had never encountered before. The problem was referred to as a "complex brain network disorder" consistent with "traumatic brain injury" -- but without an history of brain trauma." Initially, all of the victims were U.S. or Canadian State Department employees stationed in Cuba; and "nearly all the victims had reported hearing a strange noise moments before their symptoms started," " a grinding noise, loud ringing or high pitched chirping like a cicada." Speculation soon began that U.S. and Canadian diplomats "'had been subjected to some sort of sound energy or sonic attack." and "The hunt began." However, O'Sullivan asserts, "First, no sonic weapon of the type required for this attack was even known to exist. Second, and even more problematic to the sonic -weapon theory, sound is not known to damage the brain." Mark Hallett, a top official in the U.S. National Institute of Neurological Disorders and Stroke (NINDS), stated in the Guardian newspaper: "From an objective point of view, its more like mass hysteria than anything else."
In February 2018, a paper published in JAMA described features of twenty one victims: " ... these individuals appeared to have sustained injury to widespread brain networks" ... and challenged the idea that mass hysteria could account for these symptoms, stating: "Neurological examination and cognitive testing did not reveal any evidence of malingering ...", i.e., they had no motive to feign illness, quite the opposite, as "the patients were largely determined to continue to work or return to full duty ..." The debate regarding causes continued; and half of U.S. diplomats in Cuba were brought home. Eighteen months later, the authors of the 2018 JAMA article published their follow up findings "which described more advanced neurological findings in a subset of the diplomats. Compared with a control group, they appeared to have reduced brain volume. Was this proof? The authors didn't suggest that it was, only concluding that further study was required."
O'Sullivan admits that "I cannot know for certain what caused Havana syndrome, although it will not come as a surprise that I agree strongly with the experts who said this was more like a functional neurological disorder or mass psychogenic illness (MPI) than anything else." O'Sullivan reminds that no sonic weapon "of the sort suspected to be responsible for the attack .. was known to exist;" and that "Medical experts were equally clear that sound did not cause brain damage." Even the authors of the first JAMA article admitted "Sound in the audible range is not known to cause persistent injury to the central nervous system." Media stories, however, have continued to feature this scientifically discredited explanation, regarding which O'Sullivan comments: "False beliefs .. are at the heart of the development of many functional disorders." And more strongly: "Sustaining the sonic-weapon theory required numerous illogical leaps that ignored the absolute implausibility of the whole scenario."
O'Sullivan may yet have to eat her words as the Havana syndrome has only been around for five years, not 20 years as with resignation syndrome. Something extremely disturbing and potentially long lasting happened to U.S. and Canadian diplomats; and O'Sullivan does not have the benefit of interviewing these persons, as she did in several other alleged cases of MPI. One might speculate that the Cuban secret weapon was the hostility and potential threat directed at U.S. personnel in a Communist country; but it would be a surprise if living in a hostile social milieu can produce symptoms of traumatic brain injury absent specific events. However, O'Sullivan might not be as surprised as most of us. She underlines the point that it is a fiction that psychosomatic ailments, or MPI, must be minor, psychological and transitory. Furthermore, oppressed minorities in the U.S. have greatly reduced life spans, in part (arguably) because the awareness of hostility and racist attitudes of the surrounding majority culture makes them more vulnerable to a wide range of illnesses. Michael Marmot, a British epidemiologist, has described the life shortening effects of income inequality of persons in all social classes, effects which he believes are mediated by the social tensions of everyday life in highly unequal societies.
Even within the past 7-10 days, U.S. security officials have issued warnings to the Russians and Chinese regarding the alleged targeting of U.S. officials which has been reported in parts of China, as well as Cuba. Clearly, experts in the U.S. government continue to believe that hostile governments have a secret weapon which is being used to harm American diplomats and other U.S. personnel abroad. It remains to be seen whether anyone in the U.S. government has a plausible idea of what this weapon might be, much less proof of its use. Until such an explanation is provided, advantage O'Sullivan and other experts who believe Havana syndrome is an unusual MPI.
Disease and illness
O'Sullivan asserts that "The presence or absence of illness and disease are not immutable scientific facts, as many suppose them to be. Certainly, some diseases are blatant -- you either have them or you don't. But many or not as black or white as that." O'Sullivan argues that many biological measures do not have a correct value, "they have a range of values and everything within that range is normal." Medical experts in developed countries decide what values for blood pressure, heart rate, blood sugar, hemoglobin, hours of sleep, etc. lie outside the normal range. Western medicine places a priority on early detection of illness, so there is pressure to narrow the normal range that separates illness from health. O'Sullivan offers the example of a change in screening criteria for kidney failure that resulted in an increase in estimates of renal disease in the UK from less than 2% to 14% of the population! However, "only one in a thousand people actually developed end stage renal failure every year. ... The vast majority of those newly labelled with chronic kidney disease would never have progressed to serious kidney disease, if left alone. Thus, a huge population of asymptomatic people were burdened with a diagnostic, " O'Sullivan states.
O'Sullivan maintains that " Much like the definition of kidney disease ..., the DSM is produced by a committee of experts and, as such, it is a culture- bound document, tied to a time and place." To state a cynical view (which is my own) the diagnosis of mild versions of mental health ailments such as depression expand to fulfill the market potential of psychotropic drugs that can be prescribed to manage ( i.e., not cure) them. A society that does this has a cultural investment in convincing a large percentage of the population that they have treatable chronic illnesses. Other cultures have different views and ways of responding to depression. O'Sullivan maintains: "The point is not to say that one culture has a better system than another for approaching mental health problems, but to say there is no one right way and it is therefore ill-advised for one community to think it knows what is right for another." However, Western societies have embarked on the program of developing expanded diagnostic categories to explain all human weakness and a wide range of children's learning and socialization difficulties. "These labels are offered with insincere certitude," O'Sullivan opines. "Who knows how these labels will affect the children psychologically and practically when they get older? The duende comes and goes, but diagnoses like autism, ADHD, depression and PoTS are forever." In truth, the answer to O'Sullivan's question has been answered by millions of people who believe their ability to function normally in the world depends on taking one or more psychotropic drugs for their entire lives.
In her final chapter, O'Sullivan questions whether "eradicating these (FND) disorders was, in fact, the wrong thing to hope for. For many of the people I met, psychosomatic illness served a vital purpose. Seizures solved a sociocultural problem for the Miskito and Wapishana people. In Krasnogorsk, a sleeping sickness did the same. Psychosomatic and functional disorders break the rules of every other medical problem because, for all the harm they do, they are sometimes indispensable." And "Sometimes embodying and enacting conflict is either more manageable or more practical than articulating it." It may also be far more powerful and impossible to ignore.
O'Sullivan asserts that only about 30% of persons suffering from dissociative seizures recover. She writes: "perhaps the reason is that treatment is ever only aimed at various combinations of biology and psychology, while neglecting sociocultural influences." She states that 'Of all the stories I was told in researching the book, the ones that ended most happily did not do so through biological or psychological treatments, nor even through medicine. Communities found interventions that made sense in their cultural context, e.g., ritual, changing locations, or refusal to tolerate intrusive media coverage.
O'Sullivan writes: "it is the response at a community level that often makes the difference between recovery or descent into chronic illness." And "The communities created narratives that explain these illnesses, and those narratives led to recovery for some and long term disability for others." Healing begins with "A community that can listen without judgment. A community that provides support. ... A community that can take a holistic view of health."
© Dee Wilson