Ninety-nine years before I was born, Alice James collapsed. She was nineteen years old in 1868, two years younger than I would be when illness took me under. Her eldest brother, William, had just given up preparing for a career in medicine and was floundering toward his destiny as the father of American psychology. Henry, who would become one of America’s most celebrated authors, had just seen his first story in print.
But Alice, from that point on, spent most of her life in bed with nothing to commend her to posterity but a private diary she didn’t even begin to write until many years later. Like me, she’d fallen victim to a mystifying epidemic that was sweeping the country. Its symptoms were not fatal but left sufferers in a state that sometimes felt closer to death than to life. The hallmark of the illness was an inexplicable, incapacitating fatigue that sent many, like Alice, to their beds.
Almost no bodily system was spared. Victims endured a constellation of symptoms that included headaches, insomnia, digestive problems, chronic pain, anxiety, inability to concentrate, and vertigo. They sank into dark depressions. Physicians were at a loss to produce an effective treatment.
In 1869, esteemed neurologist George Beard gave this diverse set of symptoms a name: neurasthenia. For forty years, the illness wreaked havoc throughout the country. Then, as mysteriously as it arrived, it seemed to drop off the face of the planet.
Or maybe it didn’t.
I was twenty-six years old when I first laid eyes on the gold spine of Jean Strouse’s Alice James: A Biography and pulled it down from the shelf. I’d heard about Alice; we had something in common. We’d both been felled by a mysterious fatigue.
In Alice, I met my Victorian counterpart, my kindred spirit. And somehow, reading about her—bright, witty, proud, and stuck—I began coming unstuck.
Why was Alice sick? Why was I?
In Alice, I met my Victorian counterpart, my kindred spirit. And somehow, reading about her—bright, witty, proud, and stuck—I began coming unstuck. Why was Alice sick? Why was I?From my bed, and with the aid of interlibrary loan and a helpful librarian, I set out on a journey to find some answers. I spent years researching American history, nineteenth-century and contemporary toxicology, biology, medical history, economics, environmental history, sociology, chaos theory, and more, and by the time I finished, things were a whole lot clearer.
And then came the pandemic.
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In 1989 a syndrome the press dubbed the yuppie flu was entering the public consciousness, and I came down with a case of mononucleosis that never went away. An outbreak in the idyllic skiing community of Incline Village, Nevada, near Lake Tahoe, made national news four years earlier, when over 160 people in the town of 30,000—most of them women—had been taken down by an inexplicable exhaustion.
A year earlier, the disorder had been given its official name, chronic fatigue syndrome. With telltale imprecision, the name failed to accurately represent the incapacitating array of co-occurring symptoms. In addition to debilitating fatigue, sufferers also described chronic pain in joints and muscles, headaches, cognitive dysfunction, depression and anxiety, sleep disturbance (insomnia and/or hypersomnia), digestive problems, fever, vertigo, and more. It was like a wicked flu that never went away.
The CDC’s preliminary findings about the Incline Village outbreak, published in the widely distributed Morbidity and Mortality Weekly Report in May 1986, prompted the Associated Press to report, “Federal health officials said there is not yet sufficient proof that a new disease which supposedly ravaged the Incline Village area last year actually exists.”
On ABC’s Nightline, medical correspondent Dr. Timothy Johnson stated bluntly, “The question is whether the cause is biological or emotional.” And on a CBS news show, medical expert Dr. Richard Jacobs, an associate clinical professor of infectious disease at the University of California at San Francisco, declared: “This is a trend. It’s a real fad.”
Meanwhile, tens of thousands of people were falling ill, losing their jobs, and watching the lives they’d built for themselves wither on the vine.
When the Covid-19 pandemic struck three decades later, most of those people were probably still sick. In the 1980s and ’90s, almost all of the researchers at the Centers for Disease Control (CDC) and the National Institutes of Health (NIH) believed the illness, now known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), was psychological. At the CDC scientists felt justified in diverting funding that had been earmarked by Congress for its study, and the disease has been consistently underfunded by the NIH relative its devastating impact, the number of people affected, and its societal burden.
The neglected illness has been the repository for every Cartesian bias privileging what can be seen on lab panels over the subjective experience of the patient, and this limited framework has done untold harm to millions of people, most of whom still go undiagnosed and untreated.
For seventy percent of us with ME/CFS, the illness that tore our lives apart started with a viral infection. We knew, when Covid-19 struck, that we would soon be hearing about a chronic, debilitating post-Covid syndrome devastating the lives of an entirely new influx of people. Many of us tried to warn people that death was not the only possible catastrophic outcome of Covid infection; on social networking sites, we exhorted people to wear masks to protect themselves and others. People think they’re exempt from chronic illness—until they aren’t.
Although her symptoms were real and debilitating, because their origins weren’t understood, their legitimacy was suspect.When the first reports of long-haul Covid (now called long Covid, or, more officially, post-acute sequelae of SARS-CoV-2) began hitting the news, I felt sad for all those people—remembering my bewildered, devastated self in the early days of my illness, when I had to quit my job and apply for welfare—but I was not surprised.
A lot has changed since I first fell ill. Most importantly, the CDC now recognizes ME/CFS is a serious, long-term illness that affects multiple body systems. And just months into the pandemic Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, acknowledged parallels between long Covid and ME/CFS So I thought things would be better for long Covid patients.
I was wrong.
As the writer Jodie Noel Vinson described in her award-winning essay about her own Covid experience in Arts & Letters, when new and frightening post-Covid symptoms arose—including intermittent chest pain and difficulty breathing, an elevated pulse, and “tidal waves of weariness”—doctors were dismissive. “When my tests taken in the ER came back normal, I had trouble convincing anyone something was wrong. Without objective proof from the labs, it didn’t take the doctors long to imply my symptoms were a result of my anxiety, not the cause.”
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The first written indication of concerns about Alice’s health came in the form of a letter to Ralph Waldo Emerson, written by her father, Henry Senior. Alice, thirteen years old and fairly “palpitating” with excitement, had received an invitation to visit with Emerson’s daughters, Edith and Ellen. At first Henry Sr. gave her “carte blanche to go at any expense of health,” as he described the scene to Emerson. But when her mother saw Alice’s “expectations so exalted,” she determined that the toll might be too great and forbade the trip. Alice was crushed.
A year later, William, then twenty and studying at Harvard, wrote to her in his inimitable tongue-in-cheek style, “I hope your neuralgia or whatever you made believe the thing was has gone and you are going to school instead of languishing and lolling about the house.”
Humor aside, his words must have stung. William’s joke articulated what Alice couldn’t yet know she would be contending with for the rest of her life: although her symptoms were real and debilitating, because their origins weren’t understood, their legitimacy was suspect.
*
Jodie Noel Vinson continued to seek help from doctors. She sat in numerous exam rooms,
claustrophobic cubes where waits were long and temperatures always arctic. By the time the doctor entered I was a bundle of nerves ready to confess to anything. I caved to their skepticism, cowered and acquiesced to their disbelief. I was so terrified of the sharp pains inside my chest I often cried, giving them cause to prescribe anxiety meds for symptoms they couldn’t see.
One recommended psychotherapy.
Alice, too, despaired of finding a doctor who could help. As she wrote to William, towards the end of her life, “It may seem supine to you that I don’t descend into the medical arena, but I must confess my spirit quails before any more gladiatorial encounters. It requires the strength of a horse to survive the fatigue of waiting hour after hour for the great man and then the fierce struggle to recover one’s self-respect.”
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The philosopher behind our fragmented and inadequate medical system, René Descartes, was a sickly child. His doctors didn’t hide the expectation that he would die young, and his father despised him for his weakness. Later, as an adult, Descartes—whose mother perished when he was just one, and whose only child, a beloved five-year-old daughter, died from scarlet fever—was determined to solve the puzzle of the human body, and with it, the problem of disease.
I imagine that Descartes did not have the best relationship with his body, the betrayer. How else could he have come up with the ultimate repudiation of the body, Cogito ergo sum, “I think, therefore I am?” In his 1641 Meditations, Descartes wrote,
From this I knew I was a substance whose whole essence or nature is simply to think, and which does not require any place…in order to exist. Accordingly, this “I”—that is, the soul by which I am what I am—is entirely distinct from the body, and indeed is easier to know than the body, and would not fail to be whatever it is, even if the body did not exist.
And thus dualism, the idea that the mind and the body are two separate entities, was born.
When Descartes put quill to paper in the mid-1600s and declared that people were essentially machines, he forged the path to modern medicine. In the centuries since, the scientific method, with its emphasis on objective observation, has enabled researchers to learn a lot about how our parts work, all the way down to the cellular and molecular level.
This view of the world as a giant mechanism that can disassembled piece by piece and then put back together again paved the way for innovations like X-rays, CT scans, and robotic surgery equipment. It enables us to diagnose and treat illnesses like pneumonia, cancer, and heart disease. We’ve become masters at breaking things down to their smallest components so we can study them, but our fragmented, mechanistic way of viewing the world comes at a cost.
Descartes’s legacy glorifies the mind and repudiates the body. It advocates the extraction of emotion from the acquisition of knowledge, privileging thinking over feeling, the objective over the subjective. In medicine, this manifests as a kind of medical colonialism, the patient’s body a territory to be claimed by the medical authorities. The core expectation of the ill, in this paradigm, is that they surrender themselves to the care of a doctor.
Doctors routinely use the word compliance, for example, when assessing patient engagement. They prefer patients who will do what they’re told. They tend to be less enamored of the patient who doesn’t comply, asks too many questions, or doesn’t get better. In this model, the doctor is the authority, the engineer of bodily repair.
But in a medical culture that privileges the doctor’s voice over the patient’s, something gets lost. In Illness and Culture in the Postmodern Age, David B. Morris remarks on the difference between disease and illness. Disease is objectively substantiated by diagnostic tests; illness is the subjective experience of the sick person.
Medicine gives greatest value to knowledge that can be verified as objective. Thus disease as objective and illness as subjective are categories that convey a powerfully divided sense of worth. What the patient reports is subjective (and untrustworthy), what the lab reports is objective (and true). Numbers are objective (and serious), stories are subjective (and trivial). Doctors are the authorities on disease, while patients remain the more or less unreliable narrators of their own unruly illnesses. The distribution of power within the traditional doctor/patient couple is tellingly one-sided. One knows, the other feels; one prescribes, the other complies; one is paid, the other pays.
As social critic Ivan Illich once put it, “The patient is reduced to an object being repaired” rather than “a subject being helped to heal.” In this paradigm, treatment no longer involves the entire person, and the experience is thus fragmented, isolating, and disconnected.
Descartes’s legacy glorifies the mind and repudiates the body. It advocates the extraction of emotion from the acquisition of knowledge, privileging thinking over feeling, the objective over the subjective.What gets lost in the healing relationship when the patient’s story, and its attendant emotions, are subordinated? Complex, multisystem illnesses like ME/CFS and long Covid call for us to reevaluate our sources of medical knowledge.
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As I followed the threads of my research, I began to wonder if chaos theory could be applied to the body, and whether that might be a useful approach to the complex, multisystem, “invisible” illnesses that medicine cannot yet see. I found a 1997 paper called “Chaos and the Limits of Modern Medicine,” written by James Goodwin, MD, and published in JAMA. Before Edward Lorenz discovered the butterfly effect—the science behind the possibility that something so seemingly innocuous as the flap of a butterfly’s wings in Brazil could create changes in the atmosphere leading to something as momentous as a tornado in Texas—wrote Goodwin,
the traditional scientific outlook was that everything was predictable, given enough information. Lorenz was in essence stating that to predict weather long range would require individual data on every molecule in the earth’s atmosphere, and, of course, measuring the molecules would alter them. [Author’s note: This we know from quantum physics.] In other words, some systems are unpredictable and always will be unpredictable.
Goodwin pointed out that medical researchers in the past century or so have studied, taught, and valued only what they could measure, with little interest in what he calls “the true core of medical practice”—subjective experience and individual differences. But chaos theory “gives us the concepts and vocabulary to articulate the fact that much of the practice of medicine is outside the realm of the modernist reductionist model of science.”
The physician labors in a sea of uncertainty, but our vocabulary—the product of scientific medicine—communicates a degree of determinism that does not exist. Chaos theory will provide us with a new vocabulary, equally “scientific” and respectable as that of scientific medicine, with which to do battle with our reductionist colleagues….When complete understanding is abandoned as a goal, the traditional tasks of the physician—listening, witnessing, relieving suffering—will no longer be relegated to a small corner of medicine, the so-called art of medicine, but will be returned to the core of medical practice and medical education.
This was published in 1997. If the traditional healthcare system actively took up the challenge to incorporate chaos theory, our care by now might be dramatically different.
Cartesian medicine sections our bodies into parts (and our healthcare system into specialties), but chaos theory shows us that all these “parts” are connected, and what happens in one part of the body, even something small, can have a cascade effect on overall health, sometimes in surprising and unpredictable and larger-than-expected ways.
Complex, multisystem illnesses are not new. Previously they were often misdiagnosed as other things, like hysteria, or its current euphemism, somatic symptom disorder. In 2015, a panel of experts appointed by the Institute of Medicine (now known as the National Academy of Medicine) announced that after a close examination of over nine thousand studies, it had come to the conclusion that ME/CFS is a “serious, chronic, complex and systemic disease.” And doctors are just now starting to recognize and diagnose many more of the over one hundred autoimmune diseases, that, by the way, like ME/CFS and long COVID, primarily affect women.
We may have reached the outer limits of what Cartesian medicine can do for many of us, but that doesn’t mean we’ve hit a dead end; it means we’re being called to a new paradigm. We must now focus on the networks within our mammalian bodies and the systems connecting our brains with the rest of us.
Now, three years into the Covid-19 pandemic, the millions of people contending with long Covid, not to mention those who suffer from ME/CFS, need well-funded research that approaches these diseases from the more fluid, creative, and surprisingly radical perception of the body as a complex, interactive system. And we need doctors prepared to drop their biases, follow the research, and listen to their patients.
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American Breakdown: Our Ailing Nation, My Body’s Revolt, and the Nineteenth-Century Woman Who Brought Me Back to Life by Jennifer Lunden is available via Harperwave.
