Books and Movies About Lupus That Help Me Cope
Last updated: February 2023
One of the most discouraging parts of being diagnosed with lupus was that my friends and family had no idea what lupus even was. More well-known diseases, like cancer and diabetes, are part of the plotlines in hundreds of books and movies. Someone with either of these diseases can find a novel or film that they can relate to as a sick person. In addition, most people who aren’t sick are aware that diabetics have to watch their sugar intake or that cancer patients might require chemotherapy. But no one knew how to respond when I told my family and friends I had lupus.
Over the years, I’ve discovered some books and movies written about and by people with lupus and other invisible illnesses. Seeing people like me struggling with the same problems have helped me feel less alone. Below are some of my favorite books and one movie about people living with lupus.
Favorite lupus books
One is "Despite Lupus," by Sara Gorman. Part memoir and part self-help, entrepreneur and lupus patient Sara Gorman’s "Despite Lupus" was the exact book I needed to read when I first became ill. Despite dealing with debilitating symptoms, Sara describes her struggle to hang onto the job she loved. I found her stubborn refusal to give up on her career very relatable. By examining how her identity was tied to her career, Sara realized the unhealthy consequences of tying her self-worth to her productivity. Sara describes how she finally got her symptoms under control by reducing her work hours, then leaving work altogether. She then started her own business selling pill packs designed for other chronically ill women. Sara includes a symptom tracker in her book so that readers can better manage their health.
How Can You Not Laugh at a Time Like This?
Another one of my favorite books is "How Can You Not Laugh at a Time Like This?" by Carla Ulbrich. Comedian and musician Carla Ulbrich hits all the right notes with this charming and entertaining read. This book is a collection of short essays on being sick and searching for wellness and hope. The essays can be read individually and out of order if your reading time is limited, or they can be read straight through like a novel. In addition to her book, Carla Ulbrich sings and plays guitar. Her songs are parodies, often of the medical establishment and her symptoms. One of my favorite songs by Carla is "The Prednisone Song," which makes fun of all the side effects she’s experienced while on steroids.
"Love Sick" by Cory Martin is a memoir-in-essays which details her struggle to find love while coping with an autoimmune diagnosis. After noticing mysterious symptoms that seem to come and go, Corey is diagnosed with an unspecified autoimmune disease that her doctors suspect might be lupus or MS. Having focused on her career for most of her life, this sudden life change makes Corey realize how much she would like to find a partner to spend the rest of her life with. Like many of us, Corey has to balance managing her disease with dating and to navigate difficult questions like when to reveal her diagnosis to new partners.
The Lupus Book
"The Lupus Book" by Dr. Daniel Wallace is an informative nonfiction book on lupus written for patients and families. It covers nearly everything new patients need to know about their disease. The Lupus Book is a staple for any patient, from diagnostic tests to common medications to parts of the body lupus can affect. Dr. Wallace writes in plain terms rather than medical jargon and describes different scenarios using real patients as examples.
A favorite lupus movie
"Love Simple" is a romantic movie that captures the interaction between 2 people hiding a secret. A woman who has faced rejection from romantic partners due to her lupus decides not to reveal her diagnosis to a new love interest hiding a secret of his own: he is the sole caretaker for his severely ill father. When their secrets are discovered, the 2 discover they have much more in common than they had first guessed.
I’ve often wondered why there aren’t more books and movies about lupus. It could be because lupus affects each patient differently, so it’s difficult for writers and filmmakers to portray one universal lupus experience.
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?