Chronic Illness Exposed: A Realistic Look At YA Literature

Explore the hidden realities of chronic illness in literature—beyond tears and tragedy. Discover the true complexities and resilience often overlooked.

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Romantic scene on a bed: a couple gazes lovingly at each other. One partner, a cancer patient, looks tenderly at their loved one. Flowers adorn the bottom sides of the picture, symbolizing love with scattered hearts.

Chronic illness permeates literature, often depicted through narratives that emphasize tragedy, philosophical depth beyond one’s years, and the pursuit of normalcy despite overwhelming odds. These themes, while compelling, often overshadow the complex realities faced by individuals living with chronic conditions. From romanticized suffering to the profound impacts on daily life and healthcare struggles, the portrayal of chronic illness in literature can both enlighten and distort our understanding. By exploring these narratives, we uncover not only the emotional depths explored by authors but also the need for a more nuanced and balanced representation of chronic illness.

Chronic Illness as an Inherent Tragedy

Books about chronic illness are often described and promoted as tear-jerkers and authentic stories that will make you cry. Some titles, such as Don’t Die My Love, Sixteen and Dying, and Let Him Live, predispose the reader to sadness. With titles like these, you know tissues and ice cream are a must for the next few days you’ll spend reading. For many authors of the sick-lit genre, tragedy has become akin to authenticity. Julie Passanante states in her article “Nothing Feels as Real: Teen Sick-Lit, Sadness, and the Condition of Adolescence” that Lurlene McDaniel’s books, and others like them, “conjure a relationship between ‘realness’ and emotional intensity in which sadness connotes authenticity.” There is a general belief that the more tragedy a book has, the more accurately it portrays reality. This has become the case for many novels in the sick-lit genre, devolving into stories that centralize a “child defined by the terminology of pain,” obsessively recounting gruesome symptoms and painful procedures (Egoff qtd in Feinberg, 40).

A prominent example is the famous novel The Fault in Our Stars by John Green. Green emphasizes the pain of his protagonist, Hazel, who suffers from thyroid cancer more than any other aspect of her life or her disease. This gives the reader the impression that Hazel experiences everything through pain, making it the only prominent feeling in her life. Consequently, she becomes a tragic protagonist, with most events in the novel reinforcing this idea.

Two golden masks depicting tragedy and comedy on a hanging sign with a bulding in the bakground.
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From the guilt she feels towards her mom to her romance with Augustus ending due to his untimely death, everything seems set up to portray the tragedy of her life as a cancer patient. She doesn’t have many friends, she feels guilty believing that her death will devastate her mom, her meeting with her favorite author doesn’t go well, she constantly experiences pain, and to top it all, her boyfriend dies.

The constant emphasis on the most painful aspects of Hazel’s life portrays her as a character whose identity and experiences are defined by the tragedy of her disease. This portrayal reinforces the stereotype that people’s chronic illnesses define their lives and identities. It encourages the audience to see these individuals through a lens of pity rather than as multifaceted people. It fails to capture the varied experiences of those with chronic illness, which include simple moments of joy and normalcy. Moreover, it pushes the idea of accepting death rather than accepting the illness. The novel’s medical model perspective of disability hinders advocacy for systemic change to accommodate chronically ill people more in public spaces.

Overall, people with chronic illnesses face many hardships, but this doesn’t mean their lives are reduced to a series of unfortunate events. By emphasizing tragedy, these novels overlook the complexity of life with a chronic illness, which includes resilience, joy, and a wide range of human experiences.

It’s a Metaphor, You See…

Another common trope in the young adult sick-lit genre is the portrayal of the protagonists, usually teens, as being wise beyond their years and always having deep philosophical talks about life. There is a common belief that young people with chronic illness are forced to mature early, and although this can be true for certain aspects of their life, it doesn’t change the fact that they are still kids who need guidance and support to navigate their experiences.

Augustus Waters, portrayed in a scene from 'The Fault in Our Stars,' sitting across Hazel with a cigarette in his mouth, symbolizing defiance against his cancer."
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“It’s a metaphor, see: You put the killing thing right between your teeth, but you don’t give it the power to do its killing.”

Augustus Waters, The Fault in Our Stars

In The Fault in Our Stars, Augustus Waters uses a particular metaphor involving a cigarette he holds in his mouth, symbolizing his control over the thing that has the power to kill him—his cancer. This metaphor portrays Augustus as someone who contemplates deeply about life and death through a symbol of defiance.

Protagonist Mia from 'If I Stay,' standing pensively on elevator doors, captured in a poignant moment of reflection.
IMAGE VIA WARNER BROS.

Another example of this philosophical thinking is found in Mia’s reflection in If I Stay by Gayle Forman, where she suffers a car accident and is in a comatose state. Throughout the novel, she reflects on her life, love, and the importance of music.

“Sometimes you make choices in life and sometimes choices make you.”

Mia, If I Stay

Both reflections by Mia and Augustus show their profound understanding of their situations and emotional maturity, which is not often seen in teens their age. It seems as though their circumstances have given them a poetic understanding of life, romanticizing their suffering and setting unrealistic expectations of emotional maturity, hence implying that wisdom comes with suffering. Chronic illness does not bring some sort of philosophical awakening to the person experiencing it.

For example, I know I don’t wake up ready to give people a lecture on how chronic migraines have impacted my understanding of the world. I only hope that the next time I cry over A Dog’s Purpose or burst out laughing at Cassandra Clare channeling her inner comedian through Will Herondale, it doesn’t come with a dose of pain in my head that renders me useless for the rest of the afternoon. I hope that the next time I brew myself a pot of coffee, it is to cozy up and read Not Even Bones, not for its vasoconstrictive properties to alleviate pain.

Forced Normalcy

In sick-lit fiction, characters often strive for normalcy to integrate into the world around them. This usually involves putting themselves through strenuous situations to prove they can still do what “normal” people can. These narratives often lead to a breakdown moment and eventually the acceptance of their inevitable death rather than the acceptance and management of their disease.

A prime example of forced normalcy can be seen in Augustus Waters. He hides the worst aspects of his condition to appear normal to Hazel and others. As his condition worsens, he ultimately dies, and his death is treated as a source of inspiration for Hazel. This narrative arises from the medical model perspective, which views illness as something that needs to be fixed. According to this perspective, chronically ill patients should strive to appear more normal or less sick to live fulfilling lives.

Green road sign with the words "Normal Life Ahead?' with two smiley faces on either side of the sentence.
IMAGE VIA BOOKSTR/ALEXIA

Similarly, in Six Months to Live by Lurlene McDaniel, one of the girls, Dawn Rochelle, tries to put on makeup to look more attractive despite her illness. Dawn’s effort to look “normal” and attractive is a poignant example of how chronically ill characters feel pressured to conform to societal standards of beauty and normalcy. This act of putting on makeup, despite her health struggles, highlights the internalized need to appear “normal” and the lengths to which individuals will go to hide their true conditions.

The idea that chronically ill patients should aim to be “normal” leads to a portrayal of glorified stoicism that does more harm than good. Often, characters are praised for being strong and taken as heroes or inspirations for other characters after their deaths. This creates the impression that handling pain in silence and not seeking medical help when necessary brings them closer to normalcy. As a famous song says, “Conceal, don’t feel, don’t let them know,” right?

Stories representing patients with chronic illnesses should encourage a more positive portrayal by showing their characters managing their illness, seeking medical help, and finding support. They should allow them to accept their illness as part of their identity and find joy despite it, rather than focusing on the tragedy of their disease. Most importantly, there should be a halt to the romanticization of death and a shift in focus to living fully with chronic illness.

What They Don’t Tell You

A crucial aspect of chronic illness that is almost never mentioned in the YA sick-lit genre is the financial strain that patients endure. Most books focus on the emotional struggles of the characters and their adventures with their designated love interests, but they rarely delve into one of the most significant aspects of a sick person’s life: the cost of healthcare.

According to the National Cancer Institute (NCI), the average cost of cancer care and drugs as of 2020 is over $42,000 after a diagnosis. Furthermore, studies have found that the average cost per patient allowed by insurance companies the year after diagnosis amounts to $60,637 for stage 0, $82,121 for stage I/II, $129,387 for stage III, and $134,682 for stage IV. To make matters worse, 85% of cancer patients leave the workforce during their initial treatment. These are numbers that not everyone can easily afford, especially when they are no longer part of the workforce.

A brown table featuring a calculator, a stethoscope, and a medical billing statement attached to a blue clipboard.
IMAGE VIA BOOKSTR/ALEXIA

Although some novels briefly mention financial difficulties, we never truly see the effects on the main character, as the focus is usually on their romantic story and profound life lessons. Incorporating the financial struggles associated with chronic illness can provide readers with a more realistic portrayal and deeper understanding of the character’s challenges.

A book that offers some insight into financial struggles is My Sister’s Keeper by Jodi Picoult. The novel follows Anna, a girl conceived as a savior sibling for her sister Kate, who is diagnosed with leukemia. Kate’s treatments, specialized care, hospital stays, and experimental treatments put the Fitzgerald family in a difficult financial position, especially when Kate’s mother, Sara, stops working to take care of her. This highlights the difficult choices a family must make when caring for a sick child. Kate’s condition and medical expenses also affect the family’s home, forcing them to make constant sacrifices. By portraying the ongoing financial expenses of chronic illness, Jodi Picoult offers a more complete and empathetic perspective of life with a chronic illness.

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Being a chronically ill patient means heavy involvement with the healthcare system, bringing its own set of struggles apart from financial issues. There are often limited specialists who can perform certain treatments, or they are located in another city with long waiting lists, causing delays in healthcare. There is a limit to how much insurance can cover, leading to out-of-pocket payments. Treatments and medications may need preauthorization, which can delay necessary care due to its lengthy process.

Navigating the healthcare system’s endless bureaucracy can be time-consuming and exhausting for patients who constantly need to advocate for themselves to get timely care. The constant disparities that pose obstacles for ethnic minorities or people from lower socioeconomic statuses to access these treatments and specialists are also problems usually omitted or vaguely mentioned in sick-lit books.

Shedding light on these issues will allow readers to feel genuine empathy for the characters and actual people with chronic conditions, not just ephemeral sadness and pity. Accurate representation of this side of chronic illness is important to help readers truly understand what a person with a chronic disease deals with daily and perhaps even inspire change.

My Own Experience

You never know how chronic illness can affect you unless you live it. I always felt bad for people who suffer from certain conditions, but I never really understood what it meant to deal with one of these terrible illnesses. You feel bad for the family and the patient, but at the end of the day, it is external to you until you get the bad news yourself.

A little nosebleed that didn’t stop for a couple of hours led to a leukemia diagnosis for my 4-year-old nephew, a healthy and happy child. He was a recent addition to our family, and everyone adored him. We never imagined that a few months after his 4th birthday, he would be lying in a hospital bed, constantly receiving blood from strangers to the point where it seemed that the blood in his body was no longer his own.

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My cousin had to uproot his entire life and move to a different city for my nephew to receive proper medical treatment and chemotherapy. Despite the treatment being covered by insurance, he still needed to spend a lot of money on medicines and other necessary treatments. It isn’t easy, but we remain hopeful.

I wanted to bring attention to these issues because I’ve seen firsthand how difficult things can be when dealing with chronic illness. While it’s good to enjoy a romantic story, it is crucial to bring the truth to the table if we want change.

Better Stories

Two women smiling at each other warmly, preparing to embrace. One woman, a cancer patient, looks joyful, while the other, likely a visitor, exudes happiness.
IMAGE VIA BOOKSTR/ALEXIA

In exploring the portrayal of chronic illness in literature, we navigate through narratives that evoke empathy, inspire reflection, and sometimes inadvertently perpetuate stereotypes. From the tragic heroes of sick-lit fiction to the financial burdens and healthcare complexities rarely depicted, each story contributes to our understanding of chronic illness.

By shedding light on these varied perspectives—from personal anecdotes to literary critiques—we invite a deeper empathy and a more comprehensive dialogue about the realities faced by those living with chronic conditions. As we continue to engage with these narratives, let us strive for stories that honor resilience, depict the full spectrum of human experience, and advocate for systemic changes that support individuals navigating the complexities of chronic illness.


Are you interested in books that promote positive chronic illness representation? Check out this article.

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