All-consuming: Sick culture from tuberculosis to COVID-19

Painting of Victorian women
Lovelorn Poets/Creative Commons

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Nicole Kidman in “Moulin Rouge!” glistening with a dewy sheen of sweat, turns her face into a white handkerchief and coughs. The music thrums and swells. She moves her hand, and the pristine white of the cloth is blotted with blood. Scenes later, she will tell her male lover he’s got to go on without her, and then she will pass away from consumption, mid-wheeze, in his arms. He, the main character, learns from her death a lesson about life.

Chances are, you’ve encountered a melodramatic death scene featuring tuberculosis or another chronic illness. The death scenes, often visually beautiful, increase audience empathy for the characters. They stereotypically catalyze positive character growth and heighten the emotions in a plot. The romanticization of illness is omnipresent, found in Christian theology, 19th-century literature and Chinese television dramas. In recent years, young adult “sick literature” romances have experienced a surge in popularity.

Though portrayals and individual diseases vary drastically, people throughout the centuries have used illness to intensify emotions and represent ideologies in art, literature and other forms of media. Although I’m not speaking from the perspective of someone who has experienced a serious illness, I’d like to turn a critical eye toward our romanticized conception of illness. The way popular culture treats people with serious diseases often doesn’t reflect its reality. It tends to treat ill people as subjects with unique dramatic potential, bundles of unknowable experiences that the general public, presumed healthy, will only relate to if their experiences are tied to other themes. But that’s not fair to them: We should instead appreciate media that respect the stories of ill people as full human experiences in and of themselves.

 

“I should like to die of consumption”

Needless to say, people have written extensively on the destruction, pain and grief of disease. But, like with other motifs that involve suffering (war, abuse, mental illness, death in general), artists and writers have especially dramatized and beautified certain illnesses.

Tuberculosis, which was at one point the leading cause of death in the United States and the cause of a quarter of all deaths in Europe, appeared to consume the person’s body from a weakness inside them, hence its catchy moniker: consumption. During the Song dynasty in China, doctors called the disease shizhai, or corpse disease” in English, for how it transformed the human being. It was a horrifying death sentence, with symptoms that included emaciation, neck swelling and, of course, the famous bloody cough into a handkerchief (which eventually evolved into a hacking wheeze).

It is also perhaps the most romanticized illness of recent centuries. Its cultural impact is pervasive: The disease inspired a popular fashion movement, art and literature. Lord Byron reportedly said, “I should like to die of consumption … because ladies would all say, ‘Look at that poor Byron, how interesting he looks in dying.’ ”

Victorians worshipped aesthetic qualities of the disease; women used (often poisonous) makeup to replicate the pale face and rosy cheeks of consumption patients and styled clothing to replicate their slouching posture and thin frame. This aesthetic movement emphasized symptoms of tuberculosis that signified women’s “physical frailty, domesticity, and dependence,” reinforcing gender norms of the time.

In Western art, paintings such as Dante Gabriel Rossetti’s “Beata Beatrix” and Henry Peach Robinson’s photomontage “Fading Away” depict women dying of tuberculosis. They portray the quiet emotion that accompanies a peaceful, beautiful death, promoting an image of women as graceful in disease.

In her review of Carolyn A. Day’s book “Consumptive Chic: A History of Beauty, Fashion, and Disease,” Christina Newland discusses the aesthetic movement around the disease as well as its accompanying literary themes. In the literary world, people framed tuberculosis as “the physical manifestation of an inner passion and drive,” even a manifestation of genius that killed famed writers such as two of the Brontë sisters and Honoré de Balzac. Consumption was tied to some passionate quality inside the patient’s mind. In China, literature such as the 1928 short story “Miss Sophia’s Diary” (莎菲女士的日記) further associated the disease with womanhood, sexuality and a robust but repressed internal life. In Japanese works such as the 1898 novel “Namiko: A Realistic Novel” and the 1930s novel “The Wind Has Risen,” the romanticized image of tuberculosis contributed to a similar conception of individuality in modern Japan.

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By the late 19th century and early 20th century, the view of tuberculosis as a beautiful, upper-class disease was fading away.

But even as they recognized it fully for its terror, people were still using tuberculosis to uphold their own positive traits. Upper-class people associated tuberculosis with the plight and supposedly inherent dirtiness of the lower-class people to elevate themselves from their “unsanitary” neighbors. At the turn of the 20th century in the Southern United States, there were drastically higher rates of tuberculosis in Black folks due to economic disparities from systemic racism. White people claimed their own superiority, saying this proved Black people could not care for themselves and were better cared for when enslaved. So, tuberculosis also served to enhance classism and white supremacy.

The classic romanticization of tuberculosis continued, however, even when people aestheticized it less. In Fyodor Dostoyevsky’s novels, for example, we see drawn-out, excruciating deaths from consumption. Yet, though his descriptions of these diseases were closer to the real horror, they still played into Romantic themes. In “The Idiot,” for instance, Ippolit Terentyev’s death from tuberculosis construed the illness as part of a pursuit of divine understanding, an ideal arc for character and spiritual development.

Indeed, even though we now better understand tuberculosis and other deadly diseases, we still romanticize them and associate them with positive growth and dramatic potential. It doesn’t take a deep dive on TVTropes.org to find the “Incurable Cough of Death” and other hallmarks of melodrama such as “Ill Girl” and “A Good Way to Die.” These last two tropes lead me to a recent phenomenon: the popular genre of young adult sick literature.

 

Young adult sick lit

In my middle school language arts classroom, I picked up a novel from the back shelf about a 16-year-old girl dying from AIDS, a disease I’d only heard about once or twice before and certainly never in a historical context. It was morbid and dramatic, and I read the whole story: After accepting the fact that she is going to die, she spends time on a ranch where she falls in love with a young man, only to be parted from him abruptly when her health deteriorates. The book was “Sixteen and Dying,” the fifth installment of the “One Last Wish” series by Lurlene McDaniel from the 1990s.

Once referred to as “the greatest tragedy pornstar of all time,” McDaniel wrote books that all follow the story of a teen girl facing a fatal illness in herself or a loved one. Most of them featured cancer, often leukemia. Definitely not tuberculosis. The cultural representation of tuberculosis in the 19th and 20th centuries depended on it being a death sentence at the time. Now, in many parts of the world that produced those representations, this is no longer the case. Susan Sontag wrote that leukemia had effectively replaced tuberculosis as “the romantic disease” of blissful, slow death. Both diseases seemed to be internal illnesses, not outwardly gruesome and equally compatible with traditional images of femininity associated with frailty and lying attractively in bed.

Like earlier tuberculosis narratives, the illnesses in these books lead to life lessons and/or heighten the stakes of a romance. Although the sadness while reading may be visceral, McDaniel’s portrayal of illness is neither realistic nor representative of many people’s experiences. University of Missouri assistant professor Julie Passanante Elman argues, for instance, that McDaniel reaffirmed conservative values and heteronormative gender roles, as well as ableist stereotypes. Also, almost every Lurlene McDaniel cover depicts a white girl, with or without a white boy next to her. It’s also not hard to see how racist the book “Baby Alicia is Dying” is with one look at the cover. One writer has summed up some of the worst of McDaniel and her representations of Black people, such as how “the only time people of color get involved is when somebody works with HIV-positive infants abandoned by their drug-addicted mothers.”

In 2005, Alana Kumbier wrote about her experience as a teen with diabetes reading sick lit in the late 1980s. Though she’d seen potential for better representation, she felt most teen novels about illness alienated and objectified sick people. She says it best:

“These novels represent girls’ experiences of illness in ways that affirm some of the most insidious dominant cultural ideas we have about sick people: They are consistently portrayed as objects for both our inspiration and our pity, narcissistic and/or deceitful figures to be constantly inspected and surveilled, tragic figures, innocent victims, and vehicles for others’ emotional growth and sentimental education.”

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After my brief stint with Lurlene McDaniel, I didn’t read much more sick lit. But, I observed the nonstop barrage of books and films that focus on teens and terminal illness: “A Walk to Remember,” “My Sister’s Keeper,” “The Fault in Our Stars” and “Me and Earl and the Dying Girl,” all from either before or during my middle school years.

Why are these stories so popular? Kelsey Miller suggests that it’s simply because it’s “feelings porn.” There’s no denying that people find morbid satisfaction in empathizing with people in the most tragic situations. It’s the same as other tragic narratives – when we’re bored, some of us search out the strongest emotions as we can for an endorphin rush without experiencing the actual trauma. But this point about human nature doesn’t negate the fact that books such as Lurlene McDaniel’s tell illness stories through an inaccurately romantic lens, exploiting the ill to let people without terminal illnesses bask in their own fortunate circumstances.

This isn’t to say that all sick lit narratives are equally problematic, nor that all people share the same opinion about it. A.J. Betts, author of “Zac and Mia,” responded to the polemic around sick lit by affirming that such novels “foster empathy and compassion” for ill people. There is also a multitude of perspectives, from super fan to super hater, on the famous book-to-film sensation, “The Fault in Our Stars,” a YA romance between two teens with terminal cancer.

Among the past few decades’ worth of sick lit, “The Fault in Our Stars” is one of the better-received stories. Montgomery Jones, a lupus patient, wrote about how important the book was to her: She related to its descriptions of living with a serious illness, especially how it portrayed the accompanying social isolation. Multiple teen cancer patients expressed their general approval or appreciation of the book and movie.

Alternatively, in her thesis, Bridget Bey notes that in YA cancer narratives such as “The Fault in Our Stars,” cancer is the catalyst for romance: “Through her experience of cancer, this young woman becomes special, and this specialness leads to a special romance.” Many of these books only show the passionate honeymoon phase of a young romance before death by disease, which contributes to the association of terminal illness (and death in general) with passion and love.

There are also plenty of opinions regarding the 2019 film “Five Feet Apart,” which is about two teens with cystic fibrosis. While the case has been made that the film could raise awareness for the currently incurable disease, raising funding for research, the film is still rife with problems. Just like earlier illness narratives, the primary goal of “Five Feet Apart” is to illuminate other, “central,” supposedly universal themes, such as the general feeling of being far from a loved one.

This is not to equate the experience or cultural significance of one disease to another. But the trend nonetheless remains pronounced: In stories about ill people, writers romanticize the illness to augment empathy for the character and to enhance other themes and ideologies.

 

How can literature about sick people be better?

Yes, there are more and more pieces of media that respect the actual experiences of sick people. But problematic representations of illness, so far, seem more plentiful than better ones. They will continue, and they will be emotionally appealing to the crowds, and they will spread the sentiment that ill people’s stories can be treated as tools to enhance the emotion of the story or foster pity; as the late cystic fibrosis activist Claire Wineland said, “When you pity people who are sick, you take away their power.”

And when you romanticize their experiences, you reduce the significance of their lives from that of a human existence to that of their disease. The prevalence of this romanticization throughout history may suggest it is a natural coping mechanism to beautify the horrible. To a degree, it is, but we can and should be more empathetic. There is a better way to tell stories about ill people.

Familiar themes such as romance and life fulfillment are still parts of a sick person’s life, as they are for anyone. But creators don’t need to frame their illnesses as essential catalysts to these plots and to everything else in a character’s life. Like in any person’s life, choices are made, relationships form and characters develop because they do.

Conceiving their experiences as foreign ones leads to the sentiment that we need to connect illness stories to more universal themes to be able to empathize with ill people. Just think about how people enjoyed thinking about tuberculosis as a manifestation of inner passion or womanly frailty, concepts that were present in regular, consumption-free life. Similarly, the promotion for “Five Feet Apart” seemingly tried appealing to people by linking the struggles with cystic fibrosis in the movie to the more “relatable” struggle of being away from a loved one.

This way of thinking about ill people as alienated from the norm seems to be exacerbated by, if not inherent to, individualism. If people think of sickness as the problem of the individual who happened to get sick, then empathizing with their situation would warrant some sort of universalization: Well, what extra big themes in this person’s life make it so I relate to this experience? We ask how we relate to them individually, and we frame their illness as a barrier to our ability to empathize with them. Shouldn’t we be able to empathize with sick people in the same way we empathize with other people who’ve experienced things we haven’t?

Take a look at the way people in the United States have reacted to the COVID-19 pandemic. When many people hear about someone who’s gotten a really bad case of COVID-19, there’s a prevailing sense of, “It won’t happen to me. And chances are, I won’t become like them.” Catching the coronavirus is not the same as being born with or contracting a terminal illness, but a similar lesson could be learned: We can honor the uniqueness of what individuals have suffered, but we should also recognize that having a disease doesn’t render a person’s experience unrelatable or entirely alien from our own.

We can worry about other people whether or not we’re personally affected, and we can empathize with their stories without the need for sentimental embellishments.

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When creating stories about people with serious illnesses, perhaps more people who have experienced illness should be involved in and leading the production of this media. Perhaps it’s not the most comforting activity to read about the experience of illness just how it is, without unrealistic plots and emotional arcs tied up in a ribbon. But these experiences, to the many people who are sick, are life. And life is still interesting and emotional when portrayed in a way that doesn’t glorify or trivialize the wrong things.

Instead of stories about consumptive damsels in distress dying in the arms of their lover, or about teen cystic fibrosis patients who risk their lives for romance, films, TV series and illness memoirs that prioritize the perspective of real sick people ought to be recognized and appreciated. Some recent on-screen portrayals of women with chronic illness, such as Jennifer Brea’s “Unrest,” are respectful and will lead to wider recognition that “disabled or chronically ill people don’t stand apart from society,” but are a part of it, as Diane Shipley put it.

Shoshana Akabas, in an essay about Porochista Khakpour’s “Sick,” writes about how important reading such personal accounts of illness are to giving “patients like (her) a model to understand what’s happening to (them).” Writer Meghan O’Rourke, a former patient of late-stage Lyme disease, similarly emphasizes the importance of capturing illness on paper (in this case, she is the one doing the writing):

“In writing about illness I found myself changing. … I no longer felt that ‘I wasn’t myself’ or that I wasn’t a person. I felt I had become, instead, a person who happened to be sick.”

So let’s pay attention to how people who are sick tell their stories. Whether or not we share their experiences with illness, we don’t need beautiful paintings or inspirational romance plots to empathize with them.

Contact Miranda Jiang at [email protected].