Darby Simpson is an English Education doctoral student at Arizona State University. She is also the Program Manager of the Writing Center and Graduate Academic Support Center at ASU’s Tempe campus, and she is a former middle school and high school English teacher. Her research focuses on literacy sponsorship and peer review practices in writing instruction and representations of chronic illness in young adult literature.
More than Sick Lit: Representations of Chronic Illness in YAL
Health is on many of our minds a lot these days, as we navigate life during a global pandemic. Thinking back several years, long before the days of masks, vaccinations, and strong opinions about everything Covid-19-related, I rarely thought about my health. Sure, I occasionally had minor inconveniences like a headache or a cold, but I could generally go about my life without any major restrictions related to the use of my own body. In short, I didn’t think about my health, because I didn’t have to. And even though I grew up with a cousin with spina bifida, a mother with scoliosis, and a close friend with recurring health problems, I don’t recall spending a lot of time thinking about others’ health either. Everything changed when I had a child who was born with a chronic illness.
As I struggled through the sleepless nights that are common for parents with any new baby, I thought a lot about what it meant that my daughter would never have a “normal” life. I also tried not to think about the fact that she will likely have a much shorter life than most. I started doing some research, and eventually, I sought out guidance and understanding from an old friend that had often provided support in my life - young adult literature! I was surprised to learn how common chronic illness is in general and how little it is represented in young adult literature.
Chronic Illness Touches Most of Our Lives
The Center for Disease Control and Prevention (CDC) defines chronic diseases as “conditions that last 1 year or more and require ongoing medical attention or limit activities of daily living or both.” They also note that “six in ten adults in the US have a chronic disease and four in ten adults have two or more” and that one in four children has a chronic disease. With so many diagnoses of chronic illness documented, it is likely that most of us will experience chronic illness ourselves, will have a loved one who has a chronic illness, or both.
Chronic Illness in YAL
There are only a small number of young adult books featuring protagonists with chronic illness, and that lack of representation can be problematic. In Bishop’s (1990) “Windows, Mirrors, and Sliding Glass Doors,” she states, “Books are sometimes windows, offering views of worlds that may be real or imagined, familiar or strange...When lighting conditions are just right, however, a window can also be a mirror. Literature transforms human experience and reflects it back to us, and in that reflection we can see our own lives and experiences as part of the larger human experience.” Readers experiencing chronic illness personally or in connection with a loved one need an opportunity to see their experiences reflected in the literature they read.
While the number of protagonists with chronic illness in YAL is small, spreading awareness and increasing conversation around this topic can help. To start the conversation, I would like to share with you a couple of popular YA texts featuring protagonists with chronic illness and a few texts that are less well-known:
The Fault in Our Stars by John Green
Hazel and Augustus are two teens battling different forms of cancer when they meet at a cancer support group. Each has their own challenges associated with their illness, including Hazel requiring oxygen support, and Augustus having lost one of his legs. They bond over their shared experiences with illness and their interest in books. As the two fall in love, they are constantly reminded of the possibility of death and its presence in their young lives. At the same time, their time together also emphasizes the importance of living each day to the fullest. This bestselling book was also made into a popular film by the same name. Readers may also be interested in this brief interview with author John Green as he discusses his book and the characters in it.
Five Feet Apart by Rachael Lippincott
Stella, Poe, and Will are three teenagers with cystic fibrosis (CF) who are patients in the same hospital where they are undergoing treatment for various complications from their chronic illness. Stella and Poe have been friends for years as they spent their childhood in and out of the same hospital, only meeting Will for the first time at the start of the novel. A unique challenge of cystic fibrosis is that patients can pass bacteria to each other that is dangerous and potentially deadly for other CF patients. As Stella and Will begin to fall for each other, they defy the rules to remain at least 6 feet apart, stealing back one foot of that distance after having so much stolen from them by CF. This bestseller is based on a screenplay for a film by the same name. While CF is an illness that can vary wildly from patient to patient, Five Feet Apart sheds light on the meticulous daily care required to manage the symptoms of this chronic illness.
Win the national debate tournament, graduate as valedictorian, go off to college and become a successful lawyer. These goals are all within reach for Sammie McCoy, who has every detail of her life planned out. Sammie refuses to settle for anything less, even when she is diagnosed with Niemann Pick Disease Type C (NPC), a rare genetic disorder that will eventually steal her memory and then her life. As disease interferes with her plans and she begins to experience symptoms of memory loss, she starts to record her memories in a book for her future self so she can remember the most important parts of her life. When things begin to change for Sammie, she learns more about herself and who and what are most important. Sammie’s story brings attention to this rare disease and to the experience of a teen coming to terms with their development of chronic, terminal illness.
Lycanthropy and Other Chronic Illnesses by Kristen O’Neal
This new adult novel introduces readers to Priya, who became ill and was diagnosed with Lyme disease while studying at Stanford. Leaving school to move home to New Jersey and continuing to feel sick starts to wear on her, and her friends at Stanford have moved on without her. She relies on her online friend, Brigid, and an online support group of other young adults suffering from various chronic illnesses and disabilities. The story takes an interesting turn when Priya meets Brigid in real life and learns that her “chronic illness” is lycanthropy. While being a werewolf is certainly different from the true chronic illnesses the other characters have, there are still similarities in Brigid’s experiences that those with chronic illness may connect with. Priya and Brigid’s friendship and the chronic illness support group also highlight the importance of friendship on the sometimes lonely road of navigating chronic illness.
Kasia spends most of her time at home due to her condition: myalgic encephalomyelitis (ME), also called Chronic Fatigue Syndrome (CFS). She frequently watches the world through her window. While typically nothing happens, one day she believes she has witnessed a kidnapping. Uncertainty in what she saw leads her to pursue a girl she saw in the window across the street, who she later learns may not actually exist. As she searches for answers to this mystery, readers also get a thorough glimpse into what it is like for Kasia to live with ME. Author Penny Joelson lives with ME herself, and her first-hand perspective told through Kasia’s story aids in calling attention to the realities of living with ME in a way that anyone with chronic illness may be able to connect with.
Author Penny Joelson also wrote a personal essay for We Need Diverse Books in 2020 discussing her experiences with ME, why she had to write this book, and what teens living with ME shared with her about their own experiences.
I will continue to read and promote YA texts featuring protagonists with chronic illness, and I encourage you to check them out too. Additionally, for more information about support for students with chronic illness, visit the resources section of this CDC webpage.