Welcome to the kingdom of the sick

I’m a professor with health challenges. For some of my students, the pandemic is their first glimpse into my world

Published May 2, 2020 2:00PM (EDT)

The University of Minnesota campus was mostly deserted Tuesday afternoon, April 21, 2020. (Glen Stubbe/Star Tribune via Getty Images)
The University of Minnesota campus was mostly deserted Tuesday afternoon, April 21, 2020. (Glen Stubbe/Star Tribune via Getty Images)

In January I started teaching a course on writing and medicine at the University of Alabama at Birmingham. As in previous semesters, I guided students through the tenets of biomedicine, stages of clinical decision-making, and some of the problematic things we say to people who are suffering from physical or psychological disorders — like suggesting that cancer survivors can "win the fight" by adopting a positive attitude.

Then, in mid-March, the unthinkable happened. Ironically, there's nothing more apt than a global pandemic to make a theoretical examination of illness into a real one.

Suddenly, the twelve of us — eleven undergraduate and graduate students and me, a professor trained in the field of medical rhetoric — were learning from afar. Through posts on our shared learning platform, email exchanges, and conference calls, we discussed the remaining course readings, approaches to the final project, and modifications to assignments in a virtual environment. Our conversations shifted from the abstract to real-time, as we began peeling back the layers of how messages about COVID-19 were being publicly shaped in our communities and through the media.

In the process of carrying on remotely, I've witnessed my students grappling to understand the current pandemic through many of the ideas we've been exploring in the course. The connections they're identifying both confirm that what we're doing is valuable beyond the classroom, and remind me of my own journey through several health crises during the past two-plus decades.

Some would say that I'm either the luckiest person alive, having survived numerous visits to what cultural critic Susan Sontag calls "the kingdom of the sick," or the poster child for misfortune. At age 29, I was diagnosed with triple-negative breast cancer, so named by all the things the cancer is not — a tumor that tests negatively for estrogen receptors, progesterone receptors, and excess HER2 protein (translation: it's not as treatable as some other forms of breast cancer). At the time, I was one year into my Ph.D. program at Purdue University and underwent a mastectomy followed by several rounds of chemotherapy (including the "red devil" drug Adriamycin, known for causing recurring mouth ulcers and total hair loss while eradicating lingering cancer cells).

At 40, I was again diagnosed with breast cancer, this time estrogen receptor-positive. While celebrating a favorable tenure decision at work and parenting two daughters aged 5 and 2, I underwent a second mastectomy followed by reconstruction and more chemotherapy.

And then, in 2019, having adopted a running habit to keep myself fit, I became exhausted after any amount of exertion. The diagnosis was a flail leaflet, leading to emergency open heart surgery to replace my mitral valve.

All of these experiences have shaped how I see the world. When a commercial for a prescription drug appears on TV, I perceive efforts to convince health consumers that some feelings and physical features are "normal" and "acceptable" while others are not. Through a process called "medicalization," we are persuaded to "fix" a "defect" like saggy skin that's part of the normal aging process for most.

Or when certain physical traits like "unwanted weight gain" are blamed for a missed promotion or an empty social calendar, I detect traces of "neoliberal health," a term coined by medical sociologists like Deborah Lupton and Robert Crawford. Accordingly, individuals are held accountable for unhealthy eating and exercise behaviors while the "obesogenic" environments in which they live—spaces characterized by limited healthy food choices and minimal opportunities to be active—are ignored. And it's not just about us; a prevailing ideology of "Healthism" urges us to frame our personal inadequacies as a slight against the society that depends on us to remain healthy.

Now, with the coronavirus directly affecting their lives, my students are getting a taste of the complexity of illness and the problems associated with reducing both the etiology of COVID-19 and the continuum of experiences that stem from its arrival. Three messages, in particular, have emerged that suggest the importance of identifying the values and assumptions that underlie how we talk about the current crisis — and the mistakes we're making along the way.

Ambiguity and nuance aren't our strong points.

We Americans dislike uncertainty. During the first few days, maybe even the first week or two, of self-isolation, many of us relished the opportunity to organize closets, catch up on Netflix, and test out new recipes on captive diners. But seven weeks in, we're itching to get back to our "real" lives.

One thing I learned as a cancer survivor was how to wait out the unknown. The greatest challenge? Being expected to carry on as though my foray into the "kingdom of the sick" was temporary and that, eventually, I'd return to my "real" life. Cancer was simply an unfortunate "interruption" to an otherwise healthy existence, what sociologist Arthur Frank calls the "restitution narrative."

This conventional narrative doesn't work for a couple of reasons. For one, the ambiguities of illness, especially serious illnesses, can be long-lasting. The idea that an illness is no more than an isolated incident—something to be endured until it is swiftly and completely remedied—doesn't account for the permanent changes that can coincide with sickness or the possibility that a body that's ill might become the new normal.

Secondly, a restitution narrative fails to account for the nuances of illness experiences. Not every "body" experiences a disease or disorder in the same way — something we're seeing repeatedly in COVID-19 cases. Both young and old, sturdy and frail, are succumbing to the virus. Those without a pre-existing condition like heart disease or lupus may still end up on ventilators. Catching the virus once doesn't necessarily mean that an infected individual will be shielded from a second diagnosis. Marrielle, a student majoring in neuroscience and minoring in professional writing, told me that her uncle, a gerontologist, was distraught over early coverage of COVID-19 suggesting that the elderly are more likely to die from the virus — when in fact roughly 85% of those placed on a ventilator, regardless of age, may not survive.

I've experienced firsthand the false promises of the restitution narrative that Frank criticizes for its oversimplification. At 29, a mouthful of ulcers followed each round of chemo, a painful side effect that I'm reminded of 27 years later when the ulcers return and wreak havoc on both my physical and psychological well-being.

It's often the little things that matter most. While recovering from a second mastectomy and bilateral reconstruction at age 40, I lacked the arm strength to lift my two-year-old daughter, who loved to be held, or to push my girls on swings at the park. Perhaps until you've been in someone's shoes and understand what arises during a health challenge, it's impossible to think beyond the goal of achieving restored health.

My students are now echoing this sentiment, as they talk about hunkering down at home and maintaining a safe social distance.

Audrey, a returning student with undergraduate and graduate degrees in health education and promotion, says that while the rules for living through the pandemic may be somewhat inconvenient, that's not what she finds herself focusing on.

"A couple of weeks ago, my daughters and I drove over to my parents' house outside Birmingham," she told me. "We took the lawn chairs from the trunk and set them out six feet apart in the yard."

"One of my daughters is especially close to her granddad, and gradually, I saw the two of them inching closer and closer to each other," she continued. "I kept reminding them to keep their distance, but my dad said 'if I can't spend time with my daughter and her family, what's the point of all of this?'"

Audrey's comments reframe a global pandemic as a meaningful local event. While our country might be somewhat united in facing COVID-19, we don't all experience it in the same way. To think that we do is naïve and potentially dangerous because we're tempted to believe that one message for deterring individuals from "inching" too closely to others is sufficient.

For Nora, a student studying professional writing, the story that's stood out is an unrelenting focus on remaining productive.

"I know it's important to keep the economy going," she admits, "but we [Americans] seem overzealous about getting back out there and accomplishing the same amount of work remotely as we would if nothing had happened, . . . but something's happened, and that changes everything else."

The stories about the pandemic that strike me as most insightful are those that reveal individual stories. Loved ones peering through windows of hospitals and nursing homes while a grandparent, mother or father suffers alone inside. Siblings taking turns on a single home computer, depending on unreliable WiFi, all attempting to keep up with schoolwork that's been sent home, asking for help from parents who are struggling to pay the bills.

We gravitate towards dichotomous thinking when we're fearful.

One thing we can count on during a health crisis is the tendency to point fingers in ways that align with our values. The arrival of HIV/AIDS in the 1980s was attributed to the "unnatural practices" exhibited by gay men, while COVID-19, according to Trump, is a "Chinese virus" that's invaded other nations' borders.

Polarizing assumptions seem to coincide with any significant health threat. We are either well or sick, recovering or dying, at risk or impenetrable, part of the problem or part of the solution.

Simple explanations for the cause of illness and its cure are unsurprisingly dichotomous. A genetic glitch must be to blame for a young woman's diagnosis of breast cancer (not in my case). Adhering to guidelines for early detection will save her life (actually, it depends on the type of breast cancer, the tumor's grade, and stage at diagnosis). We overlook the discrepancies that make such simple claims problematic.

In the case of the coronavirus, we're encouraged to maintain a 6-foot distance from others and to don masks to protect our nasal and respiratory passageways from incoming particles. Yet experts admit that droplets can travel much farther and likely seep through masks.

We're encouraged to limit the size of gatherings. But even in small groups, there's no guarantee that those present are virus-free.

Sam, who's earning a master's degree in English with an emphasis in rhetoric and composition, told me that he's noticed coverage of COVID-19 that reflects either "narratives of shame" that call out people who aren't adhering to restrictions or "narratives of hope" that assure folks that goodness will prevail in this pandemic.

Assigning individuals to one or the other narrative — as feeding the spread of the virus or championing the end of the pandemic — provides a sense a control over chaos. Choose a team and give it everything you've got.

But students recognize the instability between the realms of shame and hope. Variations between how the coronavirus presents in individuals make it difficult to differentiate those who are potentially contagious from those who are deemed safe.

"It's hard to put into words," says Jada, a sophomore majoring in genetics, "but it's kind of like we're all living with one foot in 'the kingdom of the well' and one foot in 'the kingdom of the sick' because you can't tell whether somebody has the virus just by looking at them."

After receiving a bio-valve in 2019, I found myself engaging in dichotomous thinking. I'd done everything right — eaten a balanced diet, stayed active, maintained a healthy weight, and so on. Why, then, had I ended up once again on the operating table when plenty of people who dine regularly on fast food and never make time for a workout were going about their lives as usual?

We don't have ultimate control regarding the kingdom in which we'll reside. According to Sontag, we'll all hold dual citizenship in both realms at some point during our lives so perhaps we're trying to stave off the inevitable.

We depend on (false) uniformity.

In Western society, healthcare is approached through a "biomedicine" model. Bodies are generalized and normalized, and deviations from the standard have historically been deemed unacceptable. One wonders how African Americans, a demographic associated with a higher rate of mortality from the coronavirus, will be construed in the narrative about COVID-19.

Hayden, a public health major with a minor in professional writing, mentions that "scare tactics," often used to urge compliance to health directives, are further evidence of a biomedical model. "Facts, alone, don't always do the trick, because people convince themselves that the numbers don't apply to them."

Despite the many unknowns in researchers' understanding of COVID-19 and how it progresses, we seek universal truths about the virus and proven methods for protecting ourselves from it. It's assumed, too, that a clear answer to the problem of coronavirus will be discovered, wrapped up in a vaccine, and made available to everyone—at least, to those who have the resources or can rely on health insurance to cover the cost. In The Birth of the Clinic: An Archaeology of Medical Perception, French philosopher Michel Foucault traced the evolution of the medical profession from the late 18th century onward, showing how the gaze of the physician became interwoven with the ability to "see" and "know" the body in the context of an expansive nosology of diseases.

I learned long ago not to get too caught up in a biomedical perspective on my body. Five years past the point of diagnosis didn't mean I was safe from a recurrence of breast cancer. A chemo cocktail that worked for another patient with the same diagnosis wouldn't necessarily give me the same results, and my decision to undergo a mastectomy when skin-saving lumpectomies were all the rage didn't mean I'd made the wrong choice.

Simply put, our bodies exist on a wide continuum. Diseases affect us uniquely. Epidemiologists turn to algorithmic models to predict number of cases and percentages of outcomes, but these calculations aren't absolute. That's a tough pill to swallow in a society that consistently encourages us to believe that our health depends primarily on dedicating our minds—and our pocketbooks—to this end.

I'm not suggesting that we all cast aside the guidelines that have been passed down. They're the best we've got at the moment. But it's important that we listen to explanations of COVID-19 that acknowledge the complexity of this virus and its potential to affect us divergently for quite some time. Simplistic explanations and polarizing assumptions will do little to combat this pandemic.

By Cynthia Ryan

Cynthia Ryan is associate professor of English at the University of Alabama at Birmingham. Her work has appeared in the LA Times, Chicago Tribune, USA Today, and Cancer Today, and she is co-editor of "The Rhetoric of Health and Medicine As/Is: Theories and Approaches for the Field" (forthcoming from Ohio State University Press). She also serves as associate editor for Rhetoric of Health and Medicine Journal.

MORE FROM Cynthia Ryan

Related Topics ------------------------------------------

Breast Cancer Covid-19 Illness Pandemic Personal Essay Teaching Writing