7 Reads in Honor of National Disease Literacy Month

It’s officially September, which means it’s also National Disease Literacy Month. Here are some reads that bring attention to diseases many struggle with today.

Lifestyle Recommendations Self Help Wellness

Each year, thousands of people are diagnosed with various diseases. In fact, the American Hospital Association reports that an estimated 133 million Americans (nearly half the country’s population) are actively suffering from at least one chronic disease. With so many impacted, it is especially important to ensure that people have access to information and resources in order to better understand these diseases and make informed choices regarding their health.

Disease literacy is the degree to which individuals understand their diagnosis, as well as the treatments and services available to them. One way to raise awareness for diseases is through literary representation. By reading about characters and people going through the same ordeal, those afflicted can not only learn more about their diagnosis, but also gain a sense of hope, understanding, and community.

Therefore, in honor of National Disease Literacy Month, here are seven recommendations that shine a light on some of the diseases that so many face.

1. Eyes to the Wind: A Memoir of Love and Death, Hope and Resistance by Ady Barkan

disease literacy

Ady Barkan always loved going for runs in the afternoon and holding his newborn, Carl. However, one day, he began to notice his hand was uncharacteristically weak. Originally just brushing it off as a case of carpal tunnel syndrome, Ady eventually went in for a series of neurological tests and MRIs. After a week, he received a life-changing diagnosis: amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig’s disease.

At the young age of thirty-two, Ady was given only three to four years left to live. In spite of this, he decided to make the most of his remaining days and commit the rest of his life to the fight for social justice. In this memoir, Barkan documents his journey with ALS, including his symptoms, initial reaction to his diagnosis, and battle with the disease. Further, this memoir also highlights Barkan’s admirable activism and is a great read on how to live a life filled with purpose.

2. What Helped Get Me Through: Cancer Survivors Share Wisdom and Hope edited by Julie K. Silver, MD


As an oncology rehab specialist and fellow cancer survivor, Dr. Silver wanted to create a resource for those going through cancer. In turn, she created this collection, which features accounts from cancer survivors across the country. The advice sections within cover a broad range of concerns for cancer patients. Some of these include balancing work and family life, making healthier lifestyle changes, and relieving stress. Dr. Silver also incorporates advice throughout the text, making this book an invaluable resource for anyone who has cancer or knows someone who does.

3. Needles: A Memoir of Growing Up With Diabetes by Andie Dominick


All her life, Andie Dominick admired her older sister, Denise. She wanted to be exactly like her, from the way she dressed to the way she talked. However, she unfortunately soon gets a part of this wish. At age nine, she is diagnosed with diabetes, the same disease that Denise has had since age two. Once a carefree child, Andie must now get comfortable with injecting herself with needles twice a day. In this memoir, Dominick discusses how she learned to embrace her new reality and rebuild hope despite her initial fear.

4. Two Girls Staring at the Ceiling by Lucy Frank


Chess and Shannon have two things in common: a shared hospital room and Crohn’s Disease. Chess, who narrates the story, views Shannon as her polar opposite. While Chess is polite and deals with her pain in silence, Shannon is rude and makes her suffering known. While Chess appears to be improving, Shannon’s condition seems to be worsening. Despite their perceived differences, the two become friends and help each other come to terms with their illness, making this book a captivating and emotional read.

5. Befriending the Wolf: The Guide to Living and Thriving With Lupus by Milly Diericx


Milly Diericx was diagnosed with Lupus on December 25th, 2001 after experiencing intense spinal cord pain, muscle spasms, and a high fever. The initial autoimmune attack was so severe that Milly was only given one week left to live. Fortunately, she survived and eventually recovered to live a normal life without any prescription medications. In this memoir, Diericx describes her journey with the disease and outlines healing methods, exercises, and tips for fellow Lupus sufferers.

6. Cursed by Karol Ruth Silverstein


This novel follows Ricky Bloom, a fourteen-year-old girl trying to cope with her parents’ divorce and sister’s departure for college. As if those things weren’t bad enough, Ricky as also just been diagnosed with a chronic illness: juvenile arthritis. Afraid, angry, and alone, Ricky spends her days cussing others out and skipping class. However, when she realizes she is one suspension away from having to repeat ninth grade, Ricky comes to a conclusion. She needs to do whatever it takes in order to move forward, even if that means changing the person she has become and accepting her new reality.

7. “What’s Wrong With Me?” by Meghan O’Rourke

Throughout her twenties, Meghan O’Rourke suffered from a variety of symptoms, including memory issues, headaches, rashes, fatigue, and dizziness. However, despite seeing multiple doctors, Meghan was unable to get any answers. Finally, years later, Meghan was diagnosed with Hashimoto’s disease. In this article, Meghan describes how difficult it can be to get a diagnosis for a seemingly “invisible” condition. Further, she details how she eventually came to terms with her disease. O’Rourke’s writing style is very personable, making this a great read for anyone with a chronic illness.

For more book recommendations that bring awareness to chronic diseases, click here.