When I first got diagnosed with a chronic illness, I felt incredibly alone. I did not realize then how pervasive, how utterly common chronic disease was. My struggle to find a routine for optimal health performance and navigate inevitable flare-ups was not unique to me. I was, in fact, far from alone. Millions upon millions of individuals battling a chronic illness have felt the same frustrations, have asked the same questions and sought out remedies wherever they could be found.
The arc of chronic illness, from pre-diagnosis to accepting a difficult reality to managing a lifetime of symptoms, is a journey that needs literary acknowledgment and representation. Not only does the sharing of these stories help those with chronic illness feel seen and heard, but they provide hope and clarity on a personal level.
Therefore, to honor Chronic Disease Awareness Month, here are six great reads that tackle this multi-layered topic in an engaging, assuaging, and empowering way.
Brave New Medicine by Cynthia Li
In this remarkable memoir, we follow a doctor whose life was turned upside down by an autoimmune illness. Most intriguing about her story is how her background in the medical field challenged her perception of her own chronic condition that came without an overt cure. Per the title, Dr.Li’s story of managing chronic symptoms eventually leads her back to her medical profession in a new format – this “brave new medicine.” Li details how her personal health troubles transformed her career as a doctor to become especially attuned to and, thus, successful at helping ailing patients with frequently overlooked chronic conditions.
Love in the Time of Chronic Illness by Barbara Kivowitz
This read tackles an important element that many individuals with chronic illness have to navigate: how to have rewarding romantic relationships without letting sickness get in the way. Chronic illness comes with a lot of emotional, physical, and financial stresses that can make a relationship feel unsustainable. Kivowitz draws upon her extensive professional experience as a consultant centralizing on relationship-based healthcare to answer the most pressing questions about how to take care of one another and cope with the unforeseen obstacles.
Pain Woman Takes Your Keys and Other Essays From the Nervous System by Sonya Huber
Sonya Huber’s literary essay collection keenly explores what it’s like to live with chronic pain. The topics of which span from the nature of an invisible disability, biases in our healthcare system, the search for the best treatment options, and the often inarticulable experience of pain itself. Per the synopsis, Huber tackles this array of topics central to the chronic illness experience with “humor and complexity,” using pain as “a lens of inquiry and lyricism.”
Pain and Prejudice by Gabrielle Jackson
Inspired by Jackson’s story of living with endometriosis, this part memoir, part social criticism explores a common issue that many chronically ill women will face in their healthcare journey: gender bias. It keenly details how sexism permeates our flawed medical system and, most importantly, inspires women to be fearless self-advocates for their own body. This is a must-read for anyone interested in feminist discourse that extends to structural inequities of healthcare which too often leave women’s ailments misdiagnosed or dismissed.
What Doesn’t Kill You: A Life With Chronic Illness – Lessons From a Body in Revolt by Tessa Miller
Tessa Miller is a journalist based out of Brooklyn, who has written several remarkable articles on the chronic illness experience – featured in the likes of the New York Times, Elle, and more. In her debut book, Miller candidly explores the reality of life with a chronic condition – drawing upon her experience battling Crohn’s disease. Miller’s debut was named of the “Best Books of 2021” by Buzzfeed, and was hailed as a brilliant report shedding light on the millions of individuals trying to endure their disorders while “balancing the stress of relationships and work amid the ever-present threat of health complications.”
Doing Harm by Maya Dusenbery
This final read is another poignant exploration of gender bias in the medical field, named one of best books of 2018 by NPR. Author, Maya Dusenberry, unites scientific research with doctor interviews and personal accounts to expose the entrenched sexism in our healthcare system. Like Pain and Prejudice, Doing Harm is a necessary wake-up call that must be included under the modern feminist agenda.
As you may have noticed looking over this list, all of these reads are written by female authors. This is incredibly important given that many chronic illnesses (especially autoimmune conditions) affect women at significantly higher rates than men. That is not to say that men’s prevalent chronic diseases should not be equally addressed. If anything, these six reads are a vital reminder to listen compassionately to one another’s stories and to strive toward a healthcare system that works to every patient’s benefit.
Finally, for more reading recommendations spotlighting chronic illness, please click here.