40 Resources for Raising Awareness of Lesser-Known Chronic Illnesses | Collection Development, Oct. 2020

These offerings describe living with chronic illnesses that receive less attention and funding, as a starting point to heighten understanding.

The National Center for Chronic Disease Prevention and Health Promotion estimates that 90 percent of the United States’ $3.5 trillion annual health care expenditures are for people who live with chronic health conditions, including heart disease and stroke, cancer, diabetes, arthritis, epilepsy, and Alzheimer’s Disease. But the likelihood of developing these conditions is not distributed equally. People of color are more likely to experience higher rates of diabetes, stroke, heart disease, and cancer. Lower income levels, insufficient insurance coverage, and a growing wealth gap contributes to a lack of access to treatment and higher rates of chronic illness, according to reports by Health Affairs, a health policy and research journal.

Chronic illnesses are more common than one may think. With six in ten adults in the United States living with a chronic disease, and four in ten having two or more diseases, chronic illness’ impact is wide and far-reaching, based on studies by the Center for Disease Control. The disparities among those living with chronic illness are further exacerbated by life conditions and circumstance; particularly the difference between those who are privileged enough to eat healthy, get regular exercise, and high-quality sleep and those who are not.

Despite how many people are affected by chronic illness, it is not always possible to tell who is living with it. Hidden illnesses like Crohn’s disease, lupus, multiple sclerosis, and fibromyalgia are just some of the invisible conditions that can also be considered disabilities as they significantly impact major life activities. These invisible illnesses disproportionately affect women and are not entirely understood by health professionals or the general public; research has also shown how these conditions can impact all aspects of one’s live and can lead to social isolation and depression.

BEGINNING TO RAISE AWARENESS

In 2010, the Affordable Care Act became law, creating a requirement for most Americans to have health insurance. Coverage under the ACA lead to the opening of insurance marketplaces among other expansions in coverage. However, universal health care has not made its way to the United States. Despite most Americans having some form of medical coverage, disparities in health care treatment still exist and several agencies are tasked with monitoring and reducing myriad inequalities found among race, age, and sex.

Some of the books featured here describe living with the effects of these disparities, and are but a sample of titles available about chronic illnesses, some invisible, that often receive less attention and funding compared to others. Likewise, not all conditions have a national foundation dedicated to raising awareness, and not all illnesses receive book-length treatment. For many living with lesser-known illnesses, blogs and Facebook groups are primary ways to find information and connect with others.

This list is not comprehensive; rather, it is meant to be a starting point to help increase awareness and understanding of various conditions. Collection development librarians should also be open to considering patron requests; a book that is helpful to one person may also resonate with others who don’t directly ask for support. Additional resources of value include mobile apps, podcasts, and websites.


Rich McIntyre Jr. is a Medical Librarian, UConn Health Sciences Lib., Farmington, CT. He has reviewed for LJ since 2019.


 

Self-Help for Patients

Abril, Andy, & Barbara K. Bruce. Mayo Clinic Guide to Fibromyalgia: Strategies To Take Back Your Life. Mayo Clinic Pr. 2019. 272p. ISBN 9781893005495. pap. $21.95.
MDs Abril and Bruce offer research-supported strategies for patients living with fibromyalgia. Helpfully, they also share advice on getting started with creating a daily plan to help manage symptoms.

redstarBernhard, Toni. How To Be Sick: Your Pocket Companion. Wisdom. 2020. 104p. ISBN 9781614296768. pap. $12.95.
Bernhard follows-up her classic How To Be Sick with this brief guide on coping with the uncertainties of illness, including how to navigate interpersonal relationships among doctors, family, and friends.

Schechter, Steven & David Cram. Understanding Parkinson’s Disease: A Self-
Help Guide.
3rd ed. Addicus. 2017. 170p. ISBN 9781943886456. pap. $19.95.
Coauthored by a former physician who lives with Parkinson’s, this book stresses the importance of treatment and education in order to ensure the best quality of life and insight on day-to-day coping.

Goldenberg, Don. The Pain Epidemic: A Guide To Issues, Symptoms, Treatments, and Wellness. Rowman & Littlefield. 2020. 218p. ISBN 9781538138359. $30.
MD Goldenberg provides the latest medical information and pathways to understanding chronic pain and its treatment, and discusses topics such as the opioid epidemic and new potential pain treatments.

redstar Jacqueline, Ilana. Surviving and Thriving with an Invisible Chronic Illness: How To Stay Sane and Live One Step Ahead of Your Symptoms. New Harbinger. 2018. 308p. ISBN 9781626255999. pap. $16.95.
Jacqueline uses her experience living with autoimmune diseases to offer practical advice on living with invisible illness, maintaining an active lifestyle, and becoming your own advocate.

Marie, Lianna. The Complete Guide for People with Parkinson’s Disease and Their Loved Ones. Purdue Univ. 2020. 240p. ISBN 9781557536600. $17.99.
Written by a nurse living with Parkinson’s disease, over 20 years of education, research, and experience informs this essential guide to help patients understand their role in managing their treatments.

Morrow-Baez, Kelly. Thriving with PCOS: Lifestyle Strategies to Successfully Manage Polycystic Ovary Syndrome. Rowman & Littlefield. 2018. 194p.
ISBN 9781538108048. $33.
Provides clarity to the connection between lifestyle choices and emotional wellness and empowers readers to decide the best approach for themselves, rather than impersonalized lifestyle strategies.

Orbuch, Iris Kerin, & Amy Stein. Beating Endo: How To Reclaim Your Life from Endometriosis. Harper Wave. 2019. 320p. ISBN 9780062861832. $27.99.
Two leading endometriosis experts address the illness and its myriad co-existing conditions. This helpful guide is rounded out with a lifestyle program with successful outcomes for patients.

Seckin, Tamer. The Doctor Will See You Now: Recognizing and Treating Endometriosis. Turner. 2016. 272p. ISBN 9781681821128. pap. $21.99.
With a foreword by Padma Lakshmi, this book offers hope for patients living with endometriosis as well as recommendations and surgical options from a top expert in the field of endometriosis.

Shah, J. Heart Health: A Guide to the Tests and Treatments You Really Need. Rowman & Littlefield. 2019. 256p. ISBN 9781538126691. $30.
Even with an abundance of information at our fingertips, finding useful and reliable information can be a challenge. Through real life stories, MD Shah explains cardiac tests and treatments, when they’re critical, and when they can be harmful.

Steinhart, A. Hillary. Crohn’s and Colitis: Understanding and Managing IBD.
3rd ed. Robert Rose. 2018. 264p. ISBN 9780778806196. pap. $24.95.
Featuring new content based on recent evidence from reliable sources, this book utilizes case studies to demonstrate successful treatments and includes a useful FAQ that will likely help improve quality of life and health.

Svensson, Craig. When There Is No Cure: How To Thrive While Living with the Pain and Suffering of Chronic Illness. Consilium. 2019. 222p. ISBN 9781732706903. pap. $14.99.
A brief self-help guide to learning how to thrive after being diagnoased with lifelong conditions, informed by the author’s experience living with incurable diseases.

Wallace, Daniel. The Lupus Book: A Guide for Patients and Their Families. 6th ed. Oxford Univ. 2019. 336. ISBN 9780190876203. $34.95.
Physician Wallace features an abundance of reliable, current information to help manage lupus and its symptoms. Includes a glossary and resources curated by the Lupus Foundation of America.

Biographies & Memoirs

Baillou-Poitier, Zetta Sylvia. Facing Two Sickles: Families Dealing with Sickle-Cell Disease. iUniverse. 2019. 110p. ISBN 9781532076732. pap. $13.99.
The author writes a candid memoir about raising two children with sickle-cell disease and describes the disease, its symptoms, treatment, and how she coped.

Bird, Thomas. Can You Help Me? Inside the Turbulent World of Huntington Disease. Oxford Univ. 2019. 288p. ISBN 9780190684228. $24.95.
Written by a pioneer in the field of neurogenetics, this book provides a brief history of Huntington Disease and focuses on insightful and encouraging stories of patients and families from all walks of life.

Bula, Ania. Young, Sick, and Invisible: A Skeptic’s Journey with Chronic Illness. Pitchstone. 2016. 208p. ISBN 9781634310734. pap. $14.95.
Drawing on the author’s personal experiences, this personal account shows the realities of being diagnosed with lifelong illnesses as a young adult, and navigating school and doctor’s appointments.

Claflin, Vikki. Shake, Rattle with It: Living and Laughing with Parkinson’s. Mill Park. 2016. 232p. ISBN 9780997587180. $12.99.
A collection of honest and hilarious essays about the ups and downs of living with a chronic illness, based on Claflin’s experience of being diagnosed and living with Parkinson’s disease.

redstar Lent Hirsch, Michele. Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure To Seem Just Fine. Beacon. 2018. 240p. ISBN 9780807023952. $26.95
Combining personal stories with firsthand interviews as well as insights from sociologists and neuroscientists, Lent Hirsh explains how illness and disability impact women in their 20s and 30s.

Huber, Sonya. Pain Woman Takes Your Keys, and Other Essays from a Nervous System. Univ. of Nebraska. 2017. 204p. ISBN 9780803299917. pap. $17.95.
An invaluable collection of essays based on the author’s life with chronic pain, including her experiences with the health care system and changes in her interpersonal relationships.

Karpman, Harold. The New Science of Fighting Silent Heart Disease: Causes, Diagnoses, Prevention, and Treatments. Rowman & Littlefield. 2020. 252p. ISBN 9781538136553. $28.
Written by an experienced cardiologist, this book explains everything you need to know about silent heart attacks and offers practical advice about asymptomatic cardiac condition.

Lyndsey, Anna. Girl in the Dark: A Memoir. Random. 2015. 272p. ISBN 9781101872123. pap. $16.
What starts as a mild intolerance to certain kinds of artificial light develops into a severe sensitivity to all lights. Lyndsey’s story documents her retreat into darkness when she is not in a period of remission.

Mahler, Donald. COPD: Answers to Your Questions. Two Harbors Pr. 2014. 112p. ISBN 9781634132978. $14.95.
Utilizing a Q&A format, MD Mahler answers common questions from COPD patients and their families. Perspectives are informed by the author’s many discussions with patients and colleagues.

Norman, Abby. Ask Me About My Uterus: A Quest To Make Doctors Believe in Women’s Pain. Bold Type Bks. 2019. 304p. ISBN 9781568589411. pap. $16.99.
Norman describes having her pain dismissed and documents her struggle to have her endometriosis diagnosed, making the case that women’s health care needs to be taken seriously by doctors.

Parker, Laura. Vagina Problems: Endometriosis, Painful Sex, and Other Taboo Topics. Griffin: St. Martin’s . 2020. 240p. ISBN 9781250240682. pap. $16.99.
Parker candidly shares the challenges of living, working, and loving with chronic pain and the depression and anxiety that comes with constant vaginal pain.

Stone, CallyRae. 8 Lessons Lupus Taught Me: From Surviving to Thriving with Autoimmune Diseases. Balboa Pr. 2018. 76p. ISBN 9781504397407. pap. $8.99.
Having lived with chronic pain, frustration, and fatigue daily, this book—originally written as a short story—offers candid insights from Stone’s journey with autoimmune diseases.

Trivdei, Bijal. Breath from Salt: A Deadly Genetic Disease, a New Era in Science, and the Patients and Families Who Changed Medicine Forever. BenBella Books. 2020. 400p. ISBN 9781948836371. $28.95.
Including the perspectives of patients, their families, physicians, scientists, and more, this account by journalist Trivdei offers a fascinating look at the future of cystic fibrosis, genetics, and medicine.

For Parents

Your Child with Inflammatory Bowel Disease: A Family Guide for Caregiving. John Hopkins Univ. 2017. 296p. ed. by Maria Oliva-Hemker & others. ISBN 9781421423517. pap. $24.95.
A comprehensive guide that includes explanations of inflammatory bowel disease from medical experts. Recently revised to include new scientific evidence.

Lanier, Heather. Raising a Rare Girl. Penguin. 2020. 320p. ISBN 9780525559634. $27.
Lanier candidly reflects on the first few years spent raising a girl born with a rare genetic disorder, Wolf-Hirschhorn syndrome, and shares her emotional journey of fear, guilt, humor, and triumph.

redstar Sileo, Frank J. & Carol S. Potter. When Your Child Has a Chronic Medical Illness: A Guide for the Parenting Journey. American Psychological Association. 2021. 419p. ISBN 9781433833816. $17.99.
Leading mental health professionals offer practical guidance for parents to ensure the best treatment for children.

For Adolescents

Seckin, Tamer. EndoMEtriosis: A Guide for Girls. Turner. 2020. 208p. ISBN 9781684423651. $27.99.
Including stories from women in their teens and mid-twenties, this book explains endometriosis and offers potential treatments and methods to manage psychosocial symptoms.

Podcasts

Chronically Healing
A mind-set coach has conversations with people from around the world who have taken back their lives from chronic illness.

Invisible Not Broken
Features interviews with people with chronic illnesses, and touches on issues that affect the hosts, who have disabilities.

Made Visible
By giving a voice to people with invisible illnesses, this podcast aims to help patients, and caregivers feel seen and heard.

This Is Not What I Ordered
A psychotherapist with MS hosts inspiring conversations with people who live with chronic conditions.

No End In Sight
Candid conversations on being diagnosed and living with lifelong illnesses.

Invisible Disabilities Association
Formerly known as The Invisible Disabilities Advocate, this nonprofit founded in 1996 encourages, educates, and connects people and organizations who experience illness, pain, and disability.

Apps

Fooducate
A health tracker that helps monitor food progress and make healthy choices.

Medisafe Medication Management;
An award-winning medication tracker and reminder app.

PainScale – Pain Tracker Diary
Helps track pain levels, physical activity, effectiveness of medication, and more.

Sleep Cycle
Sleep tracker that analyzes sleep patterns. 

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