The Long COVID Survival Guide: How to Take Care of Yourself and What Comes Next - Stories and Advice from Twenty Long-Haulers and Experts (Paperback)
The first patient-to-patient guide for people living with Long COVID—with expert advice on getting diagnosed, dealing with symptoms, accessing resources and accommodations, and more.
“The Long COVID Survival Guide aims to give people struggling with long COVID practical solutions and emotional support to manage their illness.”—NPR, It’s Been a Minute
For people living with Long COVID, navigating the uncharted territory of this new chronic illness can be challenging. With over two hundred unique symptoms, and with doctors continuing to work toward a cure, people experiencing Long COVID are often left with more questions than answers.
A support group in book form, The Long COVID Survival Guide is here to help. Twenty contributors—from award-winning journalists, neuroscientists, and patient-researchers to corporate strategists, activists, and artists—share their stories and insight on topics including:
- getting diagnosed
- finding a caregiver
- confronting medical racism and gaslighting
- navigating employment issues
- dealing with fatigue and brain fog
- caring for your mental health, and more.
This vital resource provides the answers and reassurance you need, to take care of yourself and prepare for what comes next.
Contributors: Karyn Bishof, JD Davids, Pato Hebert, Heather Hogan, Monique Jackson, Naina Khanna, Lisa McCorkell, Karla Monterroso, Dona Kim Murphey, Padma Priya, David Putrino, Yochai Re’em, Rachel Robles, Alison Sbrana, Chimére L. Smith, Letícia Soares, Morgan Stephens, and Terri L. Wilder
Akiko Iwasaki received her Ph.D. from the University of Toronto (Canada) in 1998, and her postdoctoral training from the National Institutes of Health (USA) (1998-2000). She joined Yale University (USA) as a faculty in 2000, and currently is an Investigator of the HHMI and Waldemar Von Zedtwitz Professor of Department of Immunobiology, and of Department of Molecular Cellular and Developmental Biology. Akiko Iwasaki’s research focuses on the mechanisms of immune defense against viruses at the mucosal surfaces. Her laboratory is interested in how innate recognition of viral infections lead to the generation of adaptive immunity, and how adaptive immunity mediates protection against subsequent viral challenge.
As heard on NPR’s It’s Been a Minute
"The Long COVID Survival Guide aims to give people struggling with long COVID practical solutions and emotional support to manage their illness.
— NPR, It’s Been a Minute
This is the Long COVID book that the world needs—a practical, authoritative, compassionate, and ultimately hopeful guide to a difficult condition, written by the people who understand it best. So many long-haulers have faced their illness alone and unheard; none ever need to do so again.
— Ed Yong, New York Times–bestselling author of An Immense World and Pulitzer Prize–winning journalist
The Long COVID Survival Guide is not only a moving and helpful compilation of stories but a necessary one, given how many lives Long COVID will touch as coronavirus infections accumulate. It brings practical and emotional support to those who are struggling to navigate a scary new reality. The Long COVID Survival Guide is not just for patients but their loved ones, friends, colleagues—in short, all of us. I wish I’d had this book when I first got sick with a similar condition a decade ago!
— Meghan O’Rourke, New York Times–bestselling author of The Invisible Kingdom
This book is a much-needed antidote to the isolation of Long COVID. Drawing on their personal experiences, the authors offer important advice on getting properly diagnosed, dealing with medical racism, finding community support, and more—all while reminding you that you are not alone on the journey to recovery.
— Oni Blackstock, MD, MHS, founder and executive director of Health Justice
A gem of a book that provides accessible, vital, and insightful information delivered in a way that is welcoming, kind, and encouraging—and from people who know best about this perplexing condition. Beautifully done, you can feel the caring in each page . . . and readily appreciate the wisdom. An amazing accomplishment to have produced such a gift to all those who are suffering—and all those who care about them.
— Harlan Krumholz, MD, SM, professor of medicine, Yale University, and director of the Yale Center for Outcomes Research and Evaluation
There is still a lot to research and learn in order to understand the mechanisms behind Long COVID and the mostly unseen public health crisis it has caused. This book tells its origin story through the personal experiences of a community of patients, empowered to be their own advocates. It shows that there’s strength, support, answers, and hope in collective knowledge and shared experiences with managing a complex condition. It informs about the evolving research on Long COVID and emphasizes the importance of collaboration between patients and health care providers. Above all, it affirms the power of a robust community to bring us closer to improving care and overall health and well-being in the pandemic’s aftermath.
— Michelle Williams, SM, ScD, dean of the faculty and professor of epidemiology, Harvard T. H. Chan School of Public Health
The Long COVID Survival Guide centers the true experts on Long COVID: patients who, from the earliest days of the pandemic, have offered each other validation, practical advice, and solidarity in navigating a biased medical system. Their hard-won wisdom is essential reading for anyone who cares about building a better society for chronically ill people.
— Maya Dusenbery, author of Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick
The Long COVID Survival Guide is an urgent, informative, deeply personal collection of essays and interviews from people living with Long COVID, their caregivers, and advocates. It’s a thorough, lucid, user-friendly handbook, designed to help COVID long-haulers understand their symptoms and navigate the often-baffling health care system so they can get the care they deserve. It gives hard-earned peer-group advice, lists steps to take and resources to make use of, and links to the international networks of information and support that long-haulers, the ultimate experts on Long COVID, have had to construct themselves. But its chapters also chronicle an ongoing worldwide epidemic, the spotty medical and governmental response to it, and the cost to individuals and their loved ones—stories that will engage anyone who has had to endure the twists and turns of this epidemic without end.
— Jim Eigo, ACT UP NY
Street-level gut-punch practical. I don’t think any of us—patient, family, clinician or government—can feel we understand this condition without reading these essays.
— e-Patient Dave
The deep genius of this book is that patients helping other patients can make the world a better place . . . there is a community that will welcome you and educate you and provide a shoulder to cry on, as well as real, actionable information on treatment and a way forward.
The contributing authors share much needed, diverse perspectives on how to manage the practical, medical, and emotional challenges of living with serious chronic illness.
— Occupy M.E.