THE LONG COVID SURVIVAL GUIDE

How To Take Care of Yourself and What Comes Next

Stories and Advice from 20 Long-haulers and Experts; edited by Fiona Lowenstein with an afterword by Akiko Iwasaki

available November ‘22 from The Experiment, wherever books are sold.

winner of 2022 Foreword INDIES Gold Award in Health

“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

The first patient-to-patient guide for people living with long COVID—with expert advice and an afterword by the leading research scientist

A support group in book form, The Long COVID Survival Guide is packed with sought-after answers and reassurance to guide readers through the uncharted territory of this new illness. Twenty-one contributors—from award-winning journalists, neuroscientists, and patient-researchers to corporate strategists, activists, and artists—each explain their realm of expertise in how to:

  • get diagnosed

  • confront medical racism and gaslighting

  • navigate employment issues

  • deal with fatigue and neurological symptoms

  • care for your mental health, and more.

While doctors and researchers continue to work toward a cure, The Long COVID Survival Guide steps in with the information that patients need now.

Contributors: Karyn Bishof, JD Davids, Pato Hebert, Heather Hogan, Monique Jackson, Naina Khanna, Lisa McCorkell, Karla Monterroso, Dona Kim Murphey, Padma Priya DVL, David Putrino, Yochai Re’em, Rachel Robles, Alison Sbrana, Chimére L. Smith, Letícia Soares, Morgan Stephens, and Terri L. Wilder

Advanced praise

“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

BOOK EVENTS

Columbia University School of Social Work presents:
The Long COVID Survival Guide — a panel discussion with authors
Thursday, February 2
3:30-5PT /6:30-8PM ET
Featuring Monique Jackson, Pato Hebert, Terri Wilder, Karla Monterroso and Chimére L. Smith (registration link TBA)

The National Alliance on Mental Illness presents:
a panel on Long COVID and mental health with contributors to The Long COVID Survival Guide
Tuesday, February 28
3PM PT / 6PM ET
Featuring Morgan Stephens, Terri Wilder, Chimére L. Smith, and Karla Monterroso in conversation with Yochai Re'em (registration link TBA)

The Long COVID Survival Guide virtual launch party
Wednesday, November 9
5PM PT / 8PM ET
Co-sponsored by Autostraddle, Body Politic, Long COVID Justice, and The Patient-Led Research Collaborative

Doing Harm x The Long COVID Survival Guide present:
Navigating Biased Healthcare Systems
Thursday, November 10
5PM PT / 8PM ET

Marked By COVID x The Long COVID Survival Guide present:
The Long History of Peer-Support — from HIV/AIDS to Long COVID
Thursday, November 17
4:30PM PT / 7:30PM ET

A Conversation on Navigating Long COVID Research,
Hosted by journalist David Tuller
Monday, November 21
5PM PT / 8PM ET

Solve M.E. x The Long COVID Survival Guide
Tuesday, November 22
10AM PT / 1PM ET

A Conversation on The Importance of Community
Hosted by the Marin County Public Library
Thursday, December 8
6:30PM PT / 9:30PM ET

#MEAction x The Long COVID Survival Guide
Tuesday, January 17
4PM PT / 7PM ET

New York Public Library Author Talk
Thursday, January 26
4PM PT / 7PM ET