Chronic illness affects 133 million Americans, according to the National Health Council. Receiving a chronic illness diagnosis can be scary and life-changing. The key to navigating an emotional diagnosis is building a support network with resources that provide connection and break down the often-isolating wall of disease, psychology professionals advise. This network can include support groups, a strong medical team, family members and friends and a list of trusted books and movies.
The following books and films provide hope, connection and information to those experiencing chronic illness, in addition to garnering visibility and awareness around the topic.
How to Be Sick, non-fiction book
Author Toni Bernhard got sick in 2001 and never got better. Confused, desperate and in pain, Toni found herself living a new life with sudden constraints. Toni had to learn how to be sick and accept her limitations. In spite of her many physical and energetic restrictions (and sometimes, because of them), Toni learned how to live a life of equanimity, compassion and joy. She wrote this book to shed light on her experience of chronic illness, and to give hope to readers who are now, or may one day be, sick. Toni reminds us that inner freedom is limitless, regardless of our external circumstances.
In the Kingdom of the Sick: A Social History of Chronic Illness in America, non-fiction book
Of the millions of Americans with chronic illness, author and journalist Laurie Edwards is one of them. She has a chronic respiratory disease known as primary ciliary dyskinesia (PCD). After years of pain, hospital visits, pricks and pokes, she received her official diagnosis at age 23. She is now 32 and works as an activist and voice for those experiencing chronic illness. In the Kingdom of the Sick: A Social History of Chronic Illness in America explains the history of medicine in America and how it has formulated the way we address disease in our modern health care system today.
Girl in the Dark, memoir
Anna Lyndsey was young, ambitious and in love. What started as a sensitivity to certain kinds of artificial light eventually developed into a severe reaction to all forms of light. Now, Anna is forced to spend months in a blacked-out room where she relies on audiobooks and elaborate word games to ward off depression and despair. During periods of relative remission, she can venture into the world at dawn which, from the perspective of her cloistered existence, is filled with remarkable beauty. Girl in the Dark is a tale of an unimaginable fate that becomes a transcendent love story.
“Unrest” shows the raw and personal journey from patient to advocate to storyteller. We meet Jennifer Brea as a 28-year-old working on her doctorate degree at Harvard, and months away from marrying the love of her life. When a fever leaves her bedridden, doctors tell her it’s “all in her head.” So, she picks up her camera as an act of defiance and brings us into a hidden world of millions that medicine abandoned. Often confined by her illness to the private space of her bed, Jennifer connects with others around the globe. Like a modern-day Odysseus, she travels by Skype into a forgotten community, crafting intimate portraits of four other families suffering similarly.
The Fault in our Stars, fictional book & movie
Hazel is 16 and is reluctant to attend a cancer support group. When she meets a young boy named Augustus Waters, she decides it was a good idea. He is charming and witty. Augustus has osteosarcoma, a rare form of bone cancer, but has recently had the all-clear. Hazel and Augustus embark on a story of sadness and romance while searching for the author of their favorite book. Their bond over illness, strength and the reality of cancer brings hope and healing to the forefront of the novel.
Under Our Skin, documentary
In the early 1970s, a mysterious ailment was discovered among children living around the town of Lyme, Conn. What was first diagnosed as isolated cases of juvenile arthritis eventually became known as Lyme disease, an illness triggered by spiral-shaped bacteria. Today, many of those left untreated will suffer debilitating chronic illness. While exposing a broken health care and medical research system, the film also gives voice to those who believe that instead of a crisis, Lyme is simply a “disease du jour,” over-diagnosed and contributing to another crisis: the looming resistance of microbes and ineffectuality of antibiotics. “Under Our Skin” is a powerful and often terrifying look not only at the science and politics of the disease, but also the personal stories of those whose lives have been affected and nearly destroyed.
Often we experience ailments that those closest to us do not. Though chronic illnesses manifest differently in each individual, books and films pertaining to our specific conditions can help us feel less alone in our struggles and perhaps even teach us something about our own condition.
By Tess Francke
Tess Francke is a freelance journalist and marketing specialist who has spent her career at the intersection of media, writing, design and health research. You will find her other byline in the National Foundation for Cancer Research blog and Research to Remission quarterly oncology magazine. She is a proud Detroit native with the mission is to facilitate the vital connection between populations and health information. She loves teaching fitness classes and her daily yoga practice.