Book Review: The ‘Mystery’ Illnesses Informed by Culture

Yves here. This example isn’t quite as dramatic as sleeping illness in the article below, but it provides evidence that at least some ailments might be culturally conceived. From a 1996 New York Times story:

In Lithuania, rear-end collisions happen much as they do in the rest of the world. Cars crash, bumpers crumple and tempers flare. But drivers in cars that have been hit there do not seem to suffer the long-term complaints so common in other countries: the headaches or lingering neck pains that have come to be known as chronic whiplash, or whiplash syndrome.

Cars are no safer in Lithuania, and the average neck is not any stronger. The difference, a new study says, might be described as a matter of indemnity.

Drivers in Lithuania did not carry personal-injury insurance at the time of the study, and people there were not in the habit of suing one another. Most medical bills were paid by the government. And although some private insurance is now appearing, at the time there were no claims to be filed, no money to be won and nothing to be gained from a diagnosis of chronic whiplash. Most Lithuanians, in fact, had never heard of whiplash.

The circumstances in Lithuania are described in the current issue of The Lancet, a British medical journal, by a team of Norwegian researchers who conducted a study there. The results, they wrote, suggest that the chronic whiplash syndrome “has little validity.”

Since whiplash is still widely treated in the US, it appears this study was treated at best as a curiosity. And it had only 202 accident victims, matched with controls. But still….

By Elizabeth Svoboda, a science writer based in San Jose, California. Her most recent book for children is “The Life Heroic.” Originally published at Undark

In “The Sleeping Beauties,” Suzanne O’Sullivan investigates unexplained comas and other poorly understood disorders.

In late 2017, media reports began to appear about a real-life 9-year-old Sleeping Beauty. Sophie, an asylum seeker who lived in a small Swedish town, had slipped into something resembling a coma for more than a year. Though medical tests suggested she was healthy, she scarcely ever stirred beneath her pink blanket. A clear feeding tube snaked from her nose since she never awakened even to eat.

While her condition wasn’t novel — others refugees had reported similar symptoms prior — Sophie’s mysterious stasis helped launch neurologist Suzanne O’Sullivan on a book-length reporting journey. She had already spent years seeing patients with symptoms and disabilities, from convulsions to leaden limbs, for which no clear biological cause could be found.

O’Sullivan had thought of such illnesses primarily as products of the mind’s effects on the body. Yet the Swedish outbreak of what doctors called “uppgivenhetssyndrom,” or “resignation syndrome” in English, prompted her to consider how profoundly social and community influences guided the disease process — which explained why uppgivenhetssyndromprimarily exists in Sweden’s refugee community. “That single extreme example,” O’Sullivan writes, “was the reminder I needed of just how much society and culture matter in the shaping of illness.”

BOOK REVIEW“The Sleeping Beauties: And Other Stories of Mystery Illness,” by Suzanne O’Sullivan (Pantheon, 336 pages).

In “The Sleeping Beauties: And Other Stories of Mystery Illness,” O’Sullivan invites readers to move beyond the Western concept of disease as a failure of individual biology. She crisscrosses the globe to investigate “culture-bound” syndromes that occur mostly within specific communities. Besides uppgivenhetssyndrom, O’Sullivan delves into poorly understood conditions like “grisi siknis”hallucinations and convulsions that occur among the Miskito people of coastal Honduras and Nicaragua — and Havana syndrome, a pattern of dizziness and hearing impairment that first appeared five years ago among foreign diplomats stationed in Cuba. But “The Sleeping Beauties” is about something more fundamental: how humans unconsciously express their struggles in physical ways those around them will understand.

Despite the phrase “mystery illness” in her book’s title, O’Sullivan believes few such illnesses are as cryptic as they seem, so long as they’re assessed in the right cultural context. Swedish refugees like Sophie often have traumatic histories that instill what’s sometimes called learned helplessness — a sense they can do nothing about terrible events that befall them. Before escaping her home country in the former Soviet Union, Sophie saw her father taken by police and her mother beaten by men with connections to the mafia. When Sophie and other asylum seekers slipped into long stretches of unresponsiveness, O’Sullivan theorizes, they were embodying the hopelessness they felt in a way other refugee children also had, “unconsciously playing out a sick role that has entered the folklore of their small community.” Culturally influenced reactions like Sophie’s, O’Sullivan stresses, have nothing to do with fakery, but are very real, physical manifestations of distress.

Through the case studies she explores, O’Sullivan unpacks the complex process by which culturally influenced thought patterns and assumptions can alter behavior and even brain function itself, and how those changes, in turn, can further entrench symptoms. One of her patients, who struggled with a heavy college workload, had local doctors attribute her dizzy spells to blood pressure drops when she stood up — a verdict her family endorsed as clear evidence her illness was real. But when O’Sullivan tested the woman in her office, her blood pressure remained stable, even as she complained that her head was spinning.

She “believed that standing when she felt dizzy would inevitably lead to collapse,” O’Sullivan writes. “So, when she tried to stand, her expectations overwhelmed her nervous system and fulfilled her prophecy.” Likewise, among the Miskito people of Central America, the community narrative that grisi siknis causes convulsions can foster seizure-like activity in those with the condition — though with none of the brain activity associated with epileptic seizures.

Telling patients that community-driven expectations play into disease symptoms tends not to go over well, however. They feel as if doctors are telling them they’re making themselves sick, so they often go to great lengths to deny their symptoms have social origins. When O’Sullivan visited Sweden, a doctor there hoped she would supply a biological explanation for uppgivenhetssyndrom, just as some of her patients clamored to be told they had a “real” disease like epilepsy. Finding “an objective change on a blood test or scan,” O’Sullivan writes, “allows others to believe in the suffering.” But a search for such evidence might not be necessary, she thinks, if most doctors took cultural and social drivers of illness more seriously.

“The Sleeping Beauties” makes a major contribution in highlighting the mismatch between existing medical norms — which prize discrete evidence of physical disease — and the reality that illness is a complex entity with braided social, mental, and biological components. In exploring the many cultural lenses through which sickness can be viewed, O’Sullivan prompts readers to consider not just the origins of mystery illnesses, but the way social expectations shape everyone’s experiences of disease.

Someone in the United States or Europe, for instance, might believe depression arises from a serotonin imbalance that should be medicated, an assumption that’s normal in the culture they inhabit. But someone in another culture might see depression as a result of life events that they can confront and alter. O’Sullivan argues that this take can be just as helpful — if not more so in some cases — because it prompts people to define themselves not as victims, but as architects of their own growth and healing. She sometimes goes too far in bemoaning the perils of Westernized diagnosis, contending that “we make sick people” with our zeal for medicalized labels. Yet there is something refreshing, almost Jungian, in her recognition that other cultures may be better at understanding struggle or pain as possible routes to broadening human potential.

Though O’Sullivan is not a reporter by training, her storytelling chops shine throughout. In each location she visits, from Sweden and Texas to a former mining town in Kazakhstan, she patiently builds trust with families to understand what caused specific social contagions. She channels communities’ desperation as they grasp for answers, however unlikely. After a surge of Tourette-like tics among teens in Le Roy, New York, she writes, “somebody told reporters that, when the Jell-O factory was open, the creek that ran through the town used to change color according to the flavor being manufactured on any given day. Who knew what toxins had been left behind?”

She relays tense exchanges with a cinematic eye, as when she pushes back against the patient who’s convinced that her frequent blank spells mean she has epilepsy. And her descriptions of a young Swedish patient in prolonged sleep are both lyrical and chilling: “She looked serene, like the princess who had eaten the poisoned apple.”

To this day, some Swedish refugee children remain victims of uppgivenhetssyndrom — living reminders that we have a long way to go in untangling the complex snarl of factors that create illness. Yet as their families settle into new, safe surroundings, many of the children recover, emerging from their slumber months later to re-engage with their families and communities. “The Sleeping Beauties” makes the passionate case that embracing more inclusive definitions of disease — addressing its psychological and social causes with as much rigor as its physical ones — can help mystery illness sufferers reconnect with the world.

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19 comments

  1. PlutoniumKun

    Just as an anecdotal flip side to the ‘whiplash’ thing, its become notorious in my country as a catch all in any kind of car accident when people are trying to bump up a compensation claim. But the flip side of this as I discovered is that doctors frequently ignore complaints once the ‘whiplash’ word is mentioned.

    12 years ago I was in an accident that left me with a range of quite serious (but not permanent) injuries. It was obvious to me at the time that I’d suffered very serious muscle trauma to my neck and upper back muscles, but this was entirely ignored by the multiple surgeons and doctors who examined me over the 18 months or so of recovery, no matter how often I mentioned it. I put it down at the time to doctors preferring to stick to their own speciality, and as most of those I was dealing with were trauma or maxillofacial specialists they were really just not interested in soft tissue matters. After my recovery, I found a therapist who did help me deal with it and get my mobility back.

    But later on, I came to the conclusion that I shouldn’t have used the word ‘whiplash’. I think that either consciously or unconsciously the doctors were just thinking ‘whiplash = legal claim’ and so ignoring it. Perhaps if I’d complained more specifically of muscle damage they might have taken it more seriously.

    Reply
    1. R

      PK, my wife has a similar story. She was in a bad car crash in her teens, with her whole family. Her injury was chiefly a scar, luckily mainly under her hairline, where glass fragments were embedded in her forehead. However she has always had terrible headaches as an adult, diagnosed as migraines. These reduced once she had children but came back with her return to work and became continuous and incapacitating during lockdown.

      She assumed it was stress precipitated but she went to see a chiropractor about some back pain and, after some investigation, it would appear her headaches are essentially whiplash from a car accident 30 years ago! She would appear to have compensated for muscle damage at the time by over-developing some other muscles, to the detriment of her posture and causing a band of pain around her head from tension in the neck and cranial muscles. The giveaway was that her headaches have always responded better to musculoskeketal painkillers than neurotropic ones….

      Out of time for a claim but at least she has a diagnosis and a treatment pathway….

      Reply
      1. John Moffett

        R, I also know someone who was hit from behind, and got serious neck injuries that would classify as whiplash. They did not even try to do a lawsuit. The end result was extremely bad headaches, most of the time. She has been to Johns Hopkins hundreds of times over the last 15 years. They have decided it is damage to cranial nerves, which ends up manifesting as very serious headaches. She has been on Botox injections, which are not really helping anymore. So far, the doctors really don’t know what can be done about it. But apparently, this is one very negative outcome from bad neck injuries.

        Reply
        1. marieann

          I had a whiplash accident when I was in my twenties. I few years later I started having headaches, they became more severe as time went on. I never had a diagnosis and I just lived with it.
          In my mid forties I developed high blood pressure(family history) a few months later I noticed I hadn’t had a headache since taking the BP medication.

          I did question a cardiologist about it, he said the pathways that the meds affected were (probably) the same pathways that were damaged in the car crash.

          I have been headache free ever since….though I never did get off the BP meds.

          Reply
    2. Sawdust

      Similar story: I have a disease that took a very long time to diagnose partly because I wasn’t describing the symptoms with the standardized terminology.

      Reply
  2. begob

    I wonder if the author considered John Sarno;s theory that physical complaints arise as distractions from the return of emotion repressed in the unconscious.

    Reply
    1. Arizona Slim

      I’m living proof of that very notion.

      Three years ago, I suffered from the sudden onset of back and leg pain that was truly agonizing. It was a living hell that lasted five months.

      In January 2019, I visited a massage therapist who gave me one heckuva a rubdown and also recommended John Sarno’s book, Healing Back Pain.

      I was in Pennsylvania, spending the Christmas and New Year’s holidays with my mother, and as soon as I got back to Tucson, I put my name on the library reserve list for that book. I was finally able to check it out on Monday, February 11, 2019.

      Since I was unable to sit down, I had to stretch out on my bed and read that book. Dr. Sarno’s descriptions of his patients sounded a lot like me, and I began to take his advice to heart:

      1. Discontinue special treatments.
      2. Resume normal activities.
      3. Identify those repressed emotions. For me, getting those emotions down on paper was highly useful, and it’s a therapeutic writing exercise that I still do on a daily basis.

      Over the course of five weeks, I started sitting down again and I put my bicycle back on the road. I also stopped taking Advil, stopped going to physical therapy, stopped using pain patches, and on and on goes the list of special treatments that I discontinued.

      And where is that back and leg pain? Well, there are times when that darn psychosomatic stuff tries to make a comeback. I mock it, I laugh at it, I call BS on it, I write pages and pages and pages about it, and, get this, it GOES AWAY.

      Reply
      1. begob

        There’s a few youtube vids recounting similar experience. Does it strike you as an internal matter, or connected beyond yourself?

        Reply
      2. Susan the other

        I’m really more inclined to tell doctors it’s all in their head when they tell me it’s all in my head. It’s lovely to see them instantly recognize that they can’t deny it. I believe more in soma-psychosis.

        Reply
  3. larry

    PK, you may well be right that the medics you saw may have viewed you differently medically had you employed different terminology. You are also so right that many medics have what I would call tunnel vision syndrome that is highly restrictive in their approach to their patients. It isn’t helpful. I have sometimes found it personally to be incredibly frustrating, at the very least.

    Reply
  4. howard in nyc

    I am an anesthesia doc, so I don’t deal directly with whiplash/soft tissue injury diag and treatment, but I am a big fan of Sarno. Had hear him speak many years ago, picked up one of his books about a decade ago and he opened with a description of a patient that fit one of mine incredibly closely.

    I’ve seen what PK experienced, doctors tuning out when the whiplash word is spoken. Additionally I’ve seen that such reaction leaves a lot of patients like PK with true physical injury desperately shopping for a doctor or someone who will appropriately deal with such symptoms. This demand is left to be filled by less than scrupulous docs, as well as workmens comp/PI lawyer associated mills and scammers (but I repeat myself).

    Reply
    1. PlutoniumKun

      Thanks, yes – with hindsight I should have been more careful to specify my precise symptoms, it only occurred to me afterwards that some of the doctors thought I might have been trying it on with extra symptoms to increase a compensation claim. To be fair, they were focusing on what they saw as the chief symptoms – those that were very visible in x-rays. But it still irks me that not one of the doctors took the time to examine me for any injuries past those that were immediately visible.

      Reply
  5. Trainer

    The topic of “Mystery Illnesses” reminds me of something interesting I read some months ago in the NY Times:

    “The medical word for such diseases is “idiopathic”: conditions whose symptoms can be described but that have no known cause….What’s startling is how many mystery infections still exist today. More than a third of acute respiratory illnesses are idiopathic; the same is true for up to 40 percent of gastrointestinal disorders and more than half the cases of encephalitis (swelling of the brain). Up to 20 percent of cancers and a substantial portion of autoimmune diseases, including multiple sclerosis and rheumatoid arthritis, are thought to have viral triggers, but a vast majority of those have yet to be identified.“

    Reply
  6. marku52

    I’d like to read the article but a black block of “Sponsored content” pops up over half of it. reloading makes it got away momentarily. On FF if that helps

    Reply
  7. drumlin woodchuckles

    Cars may be no safer in Lithuania in general. But do the car seat backs all go high enough to reach and support the neck and the head? Or do they not?

    Reply
  8. Jeff N

    I once knew someone who used a whiplash claim to access health care she needed, and couldn’t otherwise afford

    Reply
  9. larry

    Howard in NYC, being an anesthesiologist, you likely won’t have treated anyone with lumbar spinal stenosis. I would love this to be psychosomatic but I can’t see it. While it is painful, the worst symptom is the cold I feel in my legs and feet no matter what the ambient temperature. I am fine from the waist up and cold from the waist down. No treatment offered at all nor any cause. It is difficult to tolerate.

    Reply

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