Living Well with Illness  | Collection Development: Chronic Illness & Pain

The National Academy of Medicine estimates that 40 percent of Americans live with chronic illness; approximately 50 million have an autoimmune disease. These figures may be underreported since many do not disclose owing to the stigma of illness. These 36 titles might help to relieve the pain of sufferers.

"What does it mean for patients that the definition of chronic illness is fairly static but its scope has changed so much?” asks Laurie Edwards (In the Kingdom of the Sick). The definition typically refers to an illness that lasts three months or more; health community The Mighty expands upon this, calling it “a disease that is persistent in its effects or…comes with time.” Chronic conditions can be invisible or less visible illnesses such as lifelong autoimmune disorders rheumatoid arthritis, lupus, multiple sclerosis, and Crohn’s disease, among others. They can also refer to ongoing conditions such as fibro­myalgia and endometriosis. There is a common misconception that illness is an unfortunate but rare experience. For many people, chronic conditions do not go away and involve managing unpredictable symptoms.

The National Academy of Medicine estimates that 40 percent of Americans live with chronic illness; approximately 50 million have an autoimmune disease according to the American Autoimmune Related Diseases Association. These figures may be underreported since many do not disclose owing to stigma. The antihealth and antiscience policy stances of the current administration mean statistics from government websites may also be ­under­reported.

Women are more likely to have multiple chronic conditions; ones that disproportionately affect them, such as autoimmune disorders, are underresearched, explains Maya Dusenbery (Doing Harm). Both the stigma surrounding chronic ailments and the long history of doctors dismissing the concerns of their patients profoundly impact women of color.

There is disagreement among medical professionals over whether cancer is a chronic illness since some types of cancer are curable. The following resources relate to conditions that are treatable but incurable. The medical system prioritizes mortality over morbidity, Dusenbery explains, and disability owing to illness is not uncommon, though not all who have chronic illness identify as disabled. Likewise, not all who have a disability experience illness.

RAISING AWARENESS

In 2003, advocate Christine Miserandino developed the “spoon theory” of communicating about chronic illness, referring to how much energy one has on a given day. Since then, spoonie has become a common self-identifier for those with chronic illness. While there are spoonie communities online, books can present a challenge for libraries as collection development policies often recommend weeding health materials after one or two years. Titles on medical marijuana, which are not listed here (see Max Macias’s “Cannabis Literacy,” BackTalk, LJ 2/1/18, p. 20), are another concern as laws vary by state and are often changing.

In addition to the works listed here, it is worthwhile to browse small presses, medical publishers, and the websites of condition-specific organizations (e.g., Endometriosis Foundation of America) for additional materials. Unfortunately, not all health concerns receive equal funding or attention or have dedicated agencies raising awareness. As a result, libraries play a critical role in providing health literacy to their communities.

Starred titles (redstar) are essential for most collections.


Stephanie Sendaula is Associate Editor, LJ Reviews, and Kiera Parrott is Reviews Director, LJ and School Library Journal


 

Historical Background

redstarEdwards, Laurie. In the Kingdom of the Sick: A Social History of Chronic Illness in America. Bloomsbury. 2014. 256p. notes. bibliog. index. ISBN 9780802718013. $26; pap. ISBN 9781620406281. $16; ebk. ISBN 9780802778277.
Referencing Susan Sontag’s seminal work, Edwards explores the distinction between illness, which she considers subjective and based on lived experience, and disease, which she sees as objective and evidence-based. Notably, she explains how standards of healthiness have evolved. (LJ 4/1/13)

Friedman, Karen A. & Sara L. Merwin. The Informed Patient: A Complete Guide to a Hospital Stay. ILR. 2017. 248p. index. ISBN 9781501709951. pap. $19.95; ebk. ISBN 9781501714078.
Doctors Friedman and Merwin make medical terminology accessible, demystifying common terms and acronyms used by medical professionals. The result is helpful preparation for a hospital stay or even an appointment with a new practitioner.

Gawande, Atul. Being Mortal: Medicine and What Matters in the End. Metropolitan: Holt. 2014. 304p. notes. bibliog. ISBN 9780805095159. $26; pap. ISBN 9781250076229 $17; ebk. ISBN 9781627790550.
Surgeon Gawande’s best seller looks at the links among medicine, public health, and aging. In examining elder care in the United States, he worries about the lack of physicians trained in geriatrics, especially as people experience illness for longer periods of time.

Sontag, Susan. Illness as Metaphor and AIDS and Its Metaphors. Picador. 2001. 192p. ISBN 9780312420130. pap. $16; ebk. ISBN 9781466853560.
First published in 1978, this classic remains relevant and often cited. Initially reflecting on tuberculosis and cancer, novelist Sontag states that illness is often romanticized, leading to dual citizenship in the kingdom of the well and the sick.

 

Self-Help & Pain Management

Bernhard, Toni. How To Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers. 2d ed. Wisdom. Sept. 2018. 256p. bibliog. index. ISBN 9781614294788. pap. $17.95; ebk. ISBN 9781614295037.
Inspired by the teachings of Buddhist writers such as Thích Nhât Hanh and Pema Chödrön, Bernhard applies the concept of impermanence to chronic conditions, acknowledging that the day-to-day is unpredictable and teaching the value of acceptance.

redstarBernhard, Toni. How To Live Well with Chronic Pain and Illness: A Mindful Guide. Wisdom. 2015. 352p. ISBN 9781614292487. pap. $16.95; ebk. ISBN 9781614292630.
Touching upon subjects such as living with invisible illnesses and experiencing pain at a young age, Bernhard offers advice on shedding self-blame and guilt relating to one’s health. Instead, she advocates for equanimity and self-compassion. (LJ 7/15)

Foster, Jeff. The Way of Rest: Finding the Courage To Hold Everything in Love. Sounds True. 2016. 352p. ISBN 9781622037919. pap. $18.95; ebk. ISBN 9781622037926.
Though not specifically about chronic conditions, Foster’s work offers comforting words for anyone in pain. His message suggests being present in the moment without dwelling on how life was supposed to be: “You are not in pain, pain is in you.”

redstarJacqueline, Ilana. Surviving and Thriving with an Invisible Chronic Illness: How To Stay Sane and Live One Step Ahead of Your Symptoms. New Harbinger. Mar. 2018. 208p. bibliog. ISBN 9781626255999. pap. $16.95; ebk. ISBN 9781626256019.
Starting with creating an elevator pitch for your illness, popular blogger Jacqueline offers tips on overcoming shame, building a support system, developing a health-care team, and requesting accommodations at school or work. Especially beneficial for those with autoimmune disorders.

Pogrebin, Letty Cottin. How To Be a Friend to a Friend Who’s Sick. PublicAffairs. 2014. 304p. index. ISBN 9781610392839. $24; pap. ISBN 9781610393744. $15.99; ebk. ISBN 9781610392846.
In this straightforward guide to illness etiquette, Pogrebin presents practical advice for friends and caregivers of those with health concerns, adding that people often feel “dis-ease about disease.” The ultimate message is one of empathy and availability.

redstarShockley, Sarah Anne. The Pain Companion: Everyday Wisdom for Living with and Moving Beyond Chronic Pain. New World Library. Jun. 2018. 192p. ISBN 9781608685707. pap. $15.95; ebk. ISBN 9781608685714.
Shockley writes the companion text she wishes she had after being diagnosed with thoracic outlet syndrome. By focusing on emotional, as opposed to physical, states of pain—loss, grief, shame, terror—she provides an invaluable primer on making lifelong healing choices.

 

Biographies & Memoirs

Donlan, Christian. The Inward Empire: Mapping the Wilds of Mortality and Fatherhood. Little, Brown. Jun. 2018. 336p. notes. bibliog. ISBN 9780316509367. $27; ebk. ISBN 9780316509350.
Donlan relays his search for identity, whether tied to fatherhood, medical circumstance, or both. In an effort not to let his diagnosis of multiple sclerosis (MS) define him, Donlan questions where the illness ends and he begins. (LJ 3/15/18)

Duffy, Karen. Backbone: Living with Chronic Pain Without Turning into One. Arcade: Little, Brown. 2017. 252p. illus. ISBN 9781628727951. $22.99; ebk. ISBN 9781628727968.
Using gallows humor, former actress and model Duffy writes a hilarious memoir on how to live when your body is unwell but your spirit is thriving. For Duffy, who lives with sarcoidosis, pain is inevitable but suffering is optional. (LJ 10/1/17)

redstarEichenwald, Kurt. A Mind Unraveled: A Memoir. Ballantine. Oct. 2018. 416p. 9780399593628. $28; ebk. ISBN 9780399593635.
Eichenwald writes an unflinching memoir of disability owing to epilepsy. His candor about living in the shadows, afraid of losing jobs or friends; deciding whether to disclose; and searching for a medical savior make for a must-read. (LJ 9/15/18)

redstarFitzmaurice, Simon. It’s Not Yet Dark: A Memoir. Houghton Harcourt. 2017. 176p. ISBN 9781328916716. $23; pap. ISBN 9781328508270. $14.99; ebk. ISBN 9781328918581.
Written as an impassioned stream of consciousness, this mesmerizing memoir by filmmaker Fitzmaurice depicts his life before and after learning he has Lou Gehrig’s disease (ALS). The author, who died in 2016, describes the invisibility of wheelchair users: “everyone notices but no one sees.”

Khakpour, Porochista. Sick: A Memoir. Harper Perennial. Jun. 2018. 272p. ISBN 9780062428738. pap. $15.99; ebk. ISBN 9780062428721.
Set against the backdrop of the Iranian Revolution from a first-generation immigrant to the United States, this memoir by Khakpour, who lives with Lyme disease, relays the stress of dealing with skeptical doctors and the lure of alternative medicine. (LJ 5/1/18)

Stopp, Victoria. Hurting like Hell, Living with Gusto: My Battle with Chronic Pain. McFarland. Jan. 2018. 171p. index. ISBN 9781476669908. pap. $29.95; ebk. ISBN 9781476630908.
From navigating appointments to reconnecting with her love of running and backpacking, Stopp shares living with chronic neck and back pain after being injured at work; essential for anyone experiencing pain at a young age.

Comics & Graphic Novels

Dunlap-Shohl, Peter. My Degeneration: A Journey Through Parkinson’s. Penn State Univ. 2015. 106p. illus. ISBN 9780271071022. pap. $29.95.
Former Anchorage Daily News staff cartoonist Dunlap-Shohl grapples with how to continue to do the work he loves. In this witty memoir of moping and coping, he talks to himself, to his disease, and to readers about Parkinson’s. (LJ 3/15/16)

Knight, Paula. The Facts of Life. Penn State Univ. 2017. 190p. illus. ISBN 9780271078465. pap. $24.95.
Knight traces her life through poignant images, from her idyllic childhood to the stigma of chronic illness and miscarriages. From biography to sociology, Knight limns the complex connections between motherhood (or lack thereof) and identity.

redstar Moss, Marissa. Last Things: A Graphic Memoir of Loss and Love. Conari. 2017. 184p. illus. ISBN 9781573246989. pap. $18.95; ebk. ISBN 9781633410596.
Cartoonist Moss’s heartbreaking work is based on vivid memories of her late husband before and during his years living with ALS. Moss evocatively writes of medical diagnosis as a family concern, specifically its profound impact on her three young sons. (LJ 4/1/17)

Porcellino, John. The Hospital Suite. Drawn & Quarterly. 2014. 250p. illus. ISBN 9781770461642. pap. $22.95.
With this sparsely drawn graphic novel, Porcellino creates an honest portrayal of life and love. He visits several doctors to discover the source of his mysterious pain. A must-read for anyone who has tried to self-diagnose or has been misdiagnosed. (LJ 11/1/14)

 

 

More Resources

Center for the Study of Chronic Illness and Disability (CCID). 
Based in the College of Health and Human Services at George Mason University, with up-to-date health research.

Clue Android & iOS. Free.
This wide-ranging app tracks menstruation, fatigue, sleep, pain, and more. With health info in English and Spanish.

Endo What? 55 min. Shannon Cohn, www.endowhat.com. 2017. DVD $19.99; digital download $14.99; streaming $5.99.
Women living with endometriosis and their doctors show how women’s pain is common and often invisible to others.

Medisafe. Android & iOS. Free.
This simple app helps organize medication and supplement schedules.

The Mighty. 
Popular health community The Mighty features background data on several conditions and shares personal narratives.

redstarUnrest. 90 min. Jennifer Brea, www.unrest.film/store. DVD & Blu-ray. $19.99; public performance $250; acad. libs. $350.
Brea’s award-winning documentary depicts life with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

 

Podcasts

Bodies 
In this documentary series, Allison ­Behringer interviews women solving medical mysteries about their bodies.

In Sickness + in Health
Advocate Cara Gael O’Regan provides health literacy about little-known conditions that primarily affect women.

The Realness
The life of rapper Prodigy and how living with sickle cell anemia influenced his music.

Terrible, Thanks for Asking
Nora McInerny profiles people who don’t have an easy answer for “How are you?”

 

The Developing Schedule

MAR 2019 SPACE EXPLORATION

APR 2019 LGBTQ HISTORY

MAY 2019 THE OPIOID CRISIS

JUN 2019 Climate change in FICTION

Aug 2019 Tiny Homes/Downsizing

To submit titles (new and/or backlist), contact Barbara Genco four to six months before issue dates listed above (email: bgenco@mediasourceinc.com).


This article was originally published in Library Journal's November 1, 2018, issue.

 

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