For the month of December, the NNLM Reading Club turns its attention to a widely misunderstood, but important health topic focus: autoimmune disease. The American Autoimmune Related Diseases Association (AARDA) promotes the top five things everyone should know about autoimmune disease as:
- 50 Million Americans have an autoimmune disease, comprising a major U.S. health crisis.
- There are 100+ autoimmune diseases including Crohn’s disease, celiac disease, rheumatoid arthritis, vasculitis, and Addison’s disease.
- Autoimmune diseases “cluster” in families; for example, if your grandmother had lupus, you could be at greater risk for developing an autoimmune disease.
- Fewer than 13% of Americans can name an autoimmune disease.
- Autoimmune diseases target women 75% more often than men; and combined, autoimmune diseases are one of the top ten fatal diseases for women under the age of 65.
Increased levels of awareness amongst the general public is more important now than ever before according to AARDA’s President and Executive Director Virginia T. Ladd. She says, "Autoimmune diseases such as multiple sclerosis, type 1 diabetes, and celiac disease have all been shown to be on the rise, but answers as to why these increases are occurring are yet unknown. However, it is imperative that the public be more aware of their own risk factors for developing autoimmune diseases so that, as symptoms occur, they can seek a diagnosis and begin a treatment regimen. Early diagnosis and onset of treatment can make a significant difference in someone’s chances of becoming disabled or suffering organ damage.” (AARDA)
For information on each of our three featured books, free downloadable book club discussion guides, customizable promotional materials and more, visit https://nnlm.gov/nnlm-reading-club/autoimmune-disease.
- In “The Invisible Kingdom: Reimagining Chronic Illness,” renowned writer Meghan O’Rourke engages with the silent epidemic of chronic illnesses afflicting tens of millions of Americans. These diseases are poorly understood, frequently marginalized, and can go undiagnosed and unrecognized altogether. O’Rourke delivers a revelatory investigation into this elusive category of “invisible” illness that encompasses autoimmune diseases, post-treatment Lyme disease syndrome, and now long COVID, synthesizing the personal and the universal to help all of us through this new frontier. Drawing on her own medical experiences as well as a decade of interviews with doctors, patients, researchers, and public health experts, O’Rourke traces the history of Western definitions of illness, and reveals how inherited ideas of cause, diagnosis, and treatment have led us to ignore a host of hard-to-understand medical conditions, ones that resist easy description or simple cures. And as America faces this health crisis of extraordinary proportions, the populations most likely to be neglected by our institutions include women, the working class, and people of color. (Amazon)
- Sonya Huber, in “Pain Woman Takes your Keys, and other Essays from a Nervous System,” discusses how pain, though a universal element of human experience, is dimly understood and sometimes barely managed. This book features a collection of literary and experimental essays about living with chronic pain. Huber moves away from a linear narrative to step through the doorway into pain itself. Although the essays are personal in nature, this collection is not a record of the author’s specific condition but an exploration that transcends conventional ways of understanding pain to instead focus on its edges from widely ranging angles. Huber addresses the nature and experience of invisible disability, including the challenges of gender bias in our health care system, the search for effective treatment options, and the difficulty of articulating chronic pain. She makes pain a lens of inquiry and lyricism, finds its humor and complexity, describes its irascible character, and explores its temperature, taste, and even its beauty. (Amazon)
- “What Doesn't Kill You: A Life with Chronic Illness - Lessons from a Body in Revolt,” by Tessa Miller offers a riveting and candid account of a young journalist's awakening to a life of chronic illness, weaving together her personal story with reporting to shed light on how Americans live with long-term diagnoses today. Miller was an ambitious 20-something writer in New York City when, on a random fall day, her stomach began to seize up. It became glaringly apparent something was wrong and Miller gave in to her family's requests by going to the hospital. This started a years-long personal nightmare that included procedures, misdiagnoses, and life-threatening infections. Once Miller was finally correctly diagnosed with Crohn's disease, she had yet another new battle to face: accepting that she will, in truth, never get better. Today, three in five adults in the United States suffer from a chronic ailment, whether the illness is endometriosis, IBD, IBS, Crohn's, ulcerative colitis, asthma, depression, anxiety, diabetes, or any other chronic ailment. However, despite the prevalence of these illnesses and the impact they have on just about everyone - whether the sufferer is a colleague, a loved one, or you personally - there remains an air of shame and isolation around the topic. Millions endure these diseases alone, not only physically but also emotionally, balancing the stress of relationships and work amidst the ever-looming threat of health complications. Moving from Miller's maddening yet all too relatable experience into a deeper look at how the medical community handles chronic illness, “What Doesn't Kill You” exposes the realities of what it means to accept a lifetime diagnosis, pushing past the good, the bad, and the ugly to offer wisdom and solidarity for those trying to make sense of it all. (Amazon)