Jennifer Lunden’s essays have appeared in Creative Nonfiction, Orion, River Teeth, DIAGRAM, Longreads, and other journals; selected for Pushcart Prize XXXVII: Best of the Small Presses and several anthologies; and recognized as notable in Best American Essays. She has been awarded grants from the Maine Arts Commission, the Money for Women/Barbara Deming Memorial Fund, and the Canada Council for the Arts, and was the 2016 recipient of the Bread Loaf-Rona Jaffe Foundation Scholarship in Nonfiction. A Licensed Clinical Social Worker (LCSW) and former therapist, in 2012 she was named Maine’s Social Worker of the Year.
Below, Jennifer shares 5 key insights from her new book, American Breakdown: Our Ailing Nation, My Body’s Revolt, and the Nineteenth-Century Woman Who Brought Me Back to Life. Listen to the audio version—read by Jennifer herself—in the Next Big Idea App.
1. Stories can provide comfort, inspiration, and new ways of seeing.
In 1994, I’d been disabled for five years by myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a devastatingly exhausting illness that was dismissed by doctors and The Centers for Disease Control and Prevention (CDC) researchers alike. That same year I read Jean Strouse’s biography of the similarly debilitated Alice James, (the bright, witty, and neurasthenic sister of two eminent nineteenth-century thinkers, writer Henry James and psychologist William James.) While reading, I felt I had met my Victorian counterpart, my kindred spirit. When Alice wrote, with her signature wit, “though I have no productive worth, I have a certain value as an indestructible quantity,” I laughed, and then held the book to my heart.
Alice’s story became my passion and my healing. Why was Alice sick? Why was I? In 2001, there were only a handful of research papers exploring the connections between neurasthenia and ME/CFS. I felt I was onto something, so I kept digging. I spent years researching American history, 19th-century and contemporary toxicology, biology, medical history, economics, environmental history, sociology, chaos theory, and more. By the time I had finished, things were a whole lot clearer.
We need stories. Without Alice’s—so brilliantly rendered by Jean Strouse—my life would have been narrower, and my book would never have been written. When my audiobook’s narrator, Anna Caputo, wrote to me to say that she, too, lives with a poorly understood illness and that she imagined my book did for her something like what Strouse’s did for me, I felt like everything had come full circle. I thought about what she and others might say when they are emboldened to share their stories; stories seed social change.
2. Internalized capitalism binds us.
Here in America’s culture of runaway capitalism, we’ve been inculcated with two problematic and interrelated ideologies, or stories. One is the belief that our economic standing is a reflection of our value, and the other is the social Darwinist notion that says that the only way to rise to the top is to climb over each other. The ones at the top are the best of us, and the ones who fail to thrive are the worst, the weakest, and the most deserving of failure.
Capitalism and ableism go hand in hand. In the first year of my ME/CFS disability, my doctor refused to sign a form exempting me from having to work for my welfare assistance. She told me I was just depressed and work would be the best thing for me. Perhaps in med school, she’d studied sociologist Talcott Parsons’ 1951 theory of the “sick role.” Parsons suggested that as unproductive members of society, the ill entered a role of “sanctioned deviance” which disturbed the social function of society. A doctor’s job was to police this deviance, to make sure the ill did not benefit so much from their exemption from normal social roles that they refused their duty to get well.
“Capitalism and ableism go hand in hand.”
When Jean Strouse, in her 1980 biography of Alice James, compared Alice’s, “illness career” to her brothers’ public successes, she wrote, “by anybody’s standards, a life of incapacitating illness denoted failure and waste.” Of course, this is an ableist comment, steeped in the ideology of capitalism, one she might not make these forty-some years later. After all, Alice was more than her disability.
I love to be productive, believe me, I do. But in the years that I’ve been contending with ME/CFS and writing, I’ve learned that America and its people are ailing due to our country’s exceptionally punishing form of capitalism. Each of us, like Alice, brings to the world an ineffable spirit. How would we be different if we knew that we are enough?
3. We actually don’t have to work so hard.
In America, there’s a tremendous amount of pressure on people to calm their own stress with self-care. However, at what point is the self-care imperative a form of propaganda meant to keep us focused on our individual shortcomings rather than the failings of our country? Not only is it impossible to adjust to certain stressors, but it would actually be unhealthy, and bad for self and society, to do so. For instance, should a minimum-wage single parent with two kids “just stop being stressed?” Would all the yoga in the world work for that? Or for structural racism? Or anxiety about climate change? And should it?
In America, if you’re not stressed, you’re not working hard enough, or so the story goes. But in reality, job-related stress is estimated to cost American companies more than $300 billion per year in health costs, absenteeism, and poor performance. Some companies have discovered that a four-day workweek can actually boost efficiency. In the world’s largest coordinated pilot program to study the effects of a four-day workweek (that didn’t cut pay or benefits), researchers found that 71 percent of employees reported reduced burnout and 43 percent reported improved mental health. Employee retention increased significantly, and 92 percent of the 61 organizations in the study decided not to return to the five-day workweek.
“Job-related stress is estimated to cost American companies more than $300 billion per year in health costs, absenteeism, and poor performance.”
Here’s a bonus: A 2006 study conducted by the Center for Economic and Policy Research estimated that if American work hours matched those of Western European countries, workers would find themselves with an additional seven weeks off per year and US energy consumption would decline by about 20 percent. They also calculated that if that energy savings were directly translated into lower carbon emissions, then the US would have emitted 3 percent less carbon dioxide in 2003 than it did in 1990.
4. Empathic, effective doctors listen to their patients’ stories.
Our medical system fails to support a critical aspect of healthcare: the therapeutic relationship. Research shows that “empathy burnout” can set in after seeing 10 patients in a day. However, doctors average twice that many, working an average of 51 hours a week, and sometimes many more. Even before Covid-19, 40 percent of doctors said they suffered from professional burnout often or all the time.
Because most doctors work for large, profit-driven entities, they see themselves, says the writer and cardiologist Sandeep Jauhar, as, “technicians on an assembly line.” Under the strain of this system, one study found that doctors interrupt their patients, on average, 18 seconds after they start speaking. The best predictor of improvement in patients seeking care for a wide range of common symptoms is not whether the doctor ordered lab tests or which medications were prescribed, but whether the patient felt truly heard on the first visit.
“Over half of contemporary doctors feel they lack the time to be empathic.”
Empathy declines during medical training. This isn’t surprising, given the culture of stress that med students and residents endure and how little empathy they’re shown. They’re also trained to avoid connecting too deeply with their patients to prevent emotional pain and burnout. However, the absence of empathy causes harm to patients and their doctors. Over half of contemporary doctors feel they lack the time to be empathic, but research indicates that connecting with patients makes doctors happier and more fulfilled: a buffer against burnout.
Empathic communication skills are critical to good care. Not only do they increase patient satisfaction and improve adherence to recommended treatments, but they are also associated with a decrease in medical errors and an increase in positive outcomes. This includes reduced pain, lowered blood pressure, alleviation of depression and anxiety, and enhanced healing.
5. New science offers the possibility of new, expanded stories.
Rene Descartes, the thinker who brought us the words “I think, therefore I am,” was a sickly child whose doctors didn’t hide the expectation that he would die young. His father despised him for his weakness. I imagine that Descartes didn’t have the best relationship with his body, the betrayer, or the emotions it conveyed. He determined that the mind and body were two separate entities, and thus that the body was essentially a machine that with study, the proper kind of study, could be fixed. With these ideas, Descartes 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. We’ve become masters at breaking things down to their smallest components so we can study them, but this fragmented, mechanistic way of viewing our bodies comes at a cost. Treatment based on this paradigm is often isolating and fails to consider the many interconnected systems that influence our health, both inside and outside of our bodies.
Cartesian medicine is not adequate for the task of understanding and treating complex multisystem illnesses like ME/CFS, long COVID, and a host of others. It’s time to shift into a new paradigm; the surprising antidote is chaos theory. The butterfly effect suggests that something so seemingly innocuous as the flap of a butterfly’s wings in Brazil could cause changes in the atmosphere leading to something as momentous as a tornado in Texas. We can understand that like the weather, bodies, too, are complex, multi-influenced systems that will never be fully predictable.
Chaos theory is now being applied to research in Parkinson’s, atrial arrhythmias, epilepsy, and other health conditions. While chaos theory can answer some of the questions that previously were unanswerable, it also leaves room for mystery, for awe. It invites the humility to truly listen and incorporate the patient as a whole person whose experience, wisdom, and stories can aid diagnosis and improve outcomes.
To listen to the audio version read by author Jennifer Lunden, download the Next Big Idea App today: