The Good and Ill of Chronic Illness Representation

Chronic illness representation in fiction is easier said than done. Let’s discuss some of the challenges and triumphs surrounding contemporary “sick lit.”

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As a chronically ill avid reader, I am especially appreciative and curious about the evolving contemporary subgenre of “sick lit.” The longer I grappled with my own chronic health conditions, the more I began to search out characters that resembled (even slightly) the physically limited life that I live. For the most part, I came up short. Though there are plenty of informational nonfiction books and memoirs providing inspiring testimony and awareness, fiction novels spotlighting chronic illness remain few and far between.

During my search for chronic illness representation, I found myself rethinking what exactly I expected out of a novel about navigating a life of sickness. How do you write chronic illness into mass-market fiction? What elements are necessary to execute proper chronic illness storytelling? These were just a few of the questions I began to consider. Consequently, in hopes of shedding light on a topic near and dear to my reading and writing endeavors, let’s dive right into the good and ill of chronic illness representation in fiction.

Chronic Illness Storytelling

So, let’s be real. Chronic illness is a difficult topic to represent in fiction because, well, it’s usually supremely sad and repetitive to detail. I can say this as someone who lives with a chronic condition day in and day out. To put it lightly, it’s hard to wrap chronic illness up in a pretty bow and make an epic adventure story out of it. Thus, chronic illness storytelling tends to ride a fine line between suffering that is either glorified or underplayed for the plot’s sake.

When considering the “plot” of my own life, I’ve often pondered how I could best sum up the weeks I spend stuck in bed or on my floor during a flare-up. Is that a passage of time worth a lengthy poetic exposition or a quick one-liner? Something like “April passed in a blur.” Perhaps the more important question is which of these options best renders the chronic illness experience to the page? My answer is that chronic illness stories won’t quite fit the traditional fiction, coming-of-age mold, and that’s okay! It’s a topic that demands innovation beyond those two discrete options and finds particular success in the genre of surrealism.

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IMAGE VIA PEXELS

Along these lines, one notable example worth mentioning is Mona Awad’s 2021 release, All’s Well, which both addresses and elevates chronic pain as a literary theme using surrealist storytelling. Not only does Awad craft a raw and realistic protagonist, but she uses her reality-shifting story to offer poignant commentary on how society downplays or romanticizes female pain. You can read more about the novel’s fresh spin on “sick lit” here.

Beyond the Novel

Though there are more and more modern novels beginning to feature protagonists that suffer from chronic illnesses, representation in short stories and essays is equally if not more insightful. Broadly, chronic illness is most often a struggle to make yourself understood—to doctors, to friends and family, and even to yourself. Literature allows unique freedom in translating and transforming this struggle to the page in a way that allows others to begin to grasp what it’s like living with a condition like lupus, chronic fatigue syndrome, POTS, and endometriosis, among many others.

To spotlight just a few examples of books that succeed in this regard, check out the two titles below. Both of these explore chronic illness and pain in striking, non-linear narratives that provoke deeper questions about the human experience and the complex interaction between the mental and the physical.

Pain Woman Takes Your Keys, and Other Essays from a Nervous System by Sonya Huber dives headfirst into the “strange, unbounded reality” that comes with a chronic pain diagnosis. Specifically, her literary essays explore the topic of pain stemming from rheumatoid arthritis and Hashimoto’s. The collection is a testament to the writer’s ability to find light and levity while articulating a harsh reality.

If the Body Allows It by Megan Cummins is a short story collection in six parts tied to the life of Marie, a woman from New Jersey diagnosed with lupus. Cummins’ award-winning debut collection brilliantly recognizes how illness affects every area of one’s life. It interlocks the topic of chronic disease with powerful adjacent themes: guilt, grief, and relationships.

“Sick Lit” YA Subgenre

Now that we’ve touched upon some ideal literary representation of chronic illness, let’s briefly acknowledge the more troubling side of “sick-lit.” A decade ago, “sick-lit” was, in many ways, a cultural phenomenon, coinciding with the rise of The Fault in Our Stars. The prevalence of YA releases featuring terminal illness plots was surprisingly popular. Though, it wasn’t spared its fair share of criticism either.

You see, I’m not going to weigh in on whether a plethora of novels about terminal teenage love was a disturbing or exploitative literary trend. Rather, I’d like to focus on how the “sick lit” subgenre can continue to evolve today in a way that doesn’t rely on chronic disease for sensationalism or emotional shock factor. Even though literature should seek to validate the very real and taxing health struggles that affect millions, I think that chronic illness storytelling can be so much more than a set-up for tragedy.

Escapism and the Human Experience

At the end of the day, illness is an unavoidable part of the human experience that we struggle to lean into. As Virginia Woolf noted in her essay “On Being Ill,” the reason why we haven’t implored sickness as a theme of the same caliber as love and heartache is “the poverty of the language.” In simpler terms, it’s frustratingly difficult to fully describe or translate the ailments of the body. Such is what makes chronic illness storytelling a challenge in and of itself. That said, there are more and more increasingly bold and brave experimental works that seek to represent chronic illness at its essence by exploring how it changes one’s outlook on life, time, and memory.

As a reader and writer, I’m incredibly excited to see through a new chapter in the “sick lit” saga. Though, I admit, “sick lit” will never be my sole reading niche because I love using books for escapism—to temporarily forget my reality. In other words, I recognize that we use literature to find consolation and relatability in our own struggles but also to escape into our imagination. Both of these make the bookish community a prime place for chronic illness warriors to experience freedom, joy, and visibility throughout their unique journeys.


For more on chronic illness awareness, click here.

FEATURED IMAGE VIA ERIN SHEA ON CANVA