The Long COVID Survival Guide

We have all heard about Long Covid, but little did I realize how many people suffered and the extent to which they were not believed. The stories were eye opening and it was a powerful testimony to the determination to find more people with similar experiences and provide support and validation. An important read for everyone, not just those suffering from Long Covid.

It has been more than two years since the pandemic began. Since 2020, people around the world have become more cautious about face masks, vaccination requirements, handwashing, disinfectants, and many other healthcare concerns. Many have gotten covid and subsequently recovered. However, not all recoveries are the same. Some continue to suffer symptoms called "long covid." While the rest of the world chug along, those with long covid symptoms find it the journey long and often lonely. From initial diagnosis to constant anxiety about whether it gets better or worse, even medical professionals are learning new things every day with regard to how to help patients deal with covid, especially long covid. In this book, we hear directly from contributors who have experienced either directly or indirectly the challenges of long covid. In this book, twenty contributors share their stories. Sabrina writes about her loss of smell, headaches, stomach flu symptoms, and a sense of exasperation of not having anyone who could expertly tell her what to do. She tells us that there are a lot more nuances to know with regard to healing and recovery. Many who have struggled with long covid realize they are no longer the same persons they used to be. We learn about what it takes to be a knowledgeable, understanding, and supportive community. We learn about logistical and financial advice. We learn about symptom management, crowdsourced guidance, discerning the theories floating around covid-19, and a host of other issues pertaining to understanding more about Long Covid. Conventional words like healing, recovery, care, disability, patient, are all redefined under the new awareness of long covid. From a first-person perspective, we read about:

- Karla Monterroso's fight against systemic racism within healthcare facilities;
- Heather Hogan's struggle during long covid against dysautonomia, a disease that causes dysfunction in various parts of the body;
- Pato Hebert's struggle to pace various expectations in the midst of a need to pace herself;
- Letícia Soares, Karyn Bishof, and Alison Sbrana share stories about their financial struggles in the midst of long covid;
- Chimére L. Smith's struggle to find a caregiver;
- How doctors like Rachel Robles, Dona Kim Murphey, and David Putrino's share their experiences in the journey of diagnosing covid;
- Morgan Stephens shares about mental health;
- Terri Wilder and Yochai Re'em dialogue about symptoms and cognitive dysfunction;
- Padma Priya looks at the critical place of peer support;
- Lisa McCorkell tells us about her perspective and experience on research studies;
- JD Davids and Naina Khanna give us insights into matters of justice, in particular, disability justice.

Every chapter begins with a problem description followed by steps to address the problem. At the end of each chapter, there is a survival guide that contains lessons to help readers navigate a path forward.

My Thoughts
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This book gives extraordinary insights into matters that most people seldom notice. In fact, it takes one to know one. When most people are talking about covid prevention, like masks, vaccines, and hygiene, the contributors in this book are talking about their journey through covid. They show us that the world seldom focuses on the other complexities of covid, in particular, long covid. Underneath the physiological and pathological world, there are many other hidden aspects most people do not see. There is an ongoing psychological struggle that extends far beyond any defined physical healing or recovery. Many of the struggles listed in this book are of invisible nature. Things like mental health, experiencing patient care, hidden discrimination, injustice, expectations, and so on. Hopefully, the stories in this book can raise awareness about these hidden struggles.

Apart from these illuminations of hidden topics, this book also serves another purpose: Education. To be fair, many of these issues are quite foreign to the ordinary layperson. The mass media and news we read daily do not usually teach or report these things. That is why books like this fill the gap. Take long covid for example. For most people, it is basically about recovering from covid just like getting out of a flu situation. Patients who experience long covid share about them going the long haul. Sometimes, people simply do not want to consider the long-term effects until the symptoms actually happen to them. Perhaps this is human nature. Perhaps this is sweeping the inconvenience under the carpet of ignorance. For a society to be caring, we need to face head on the long-term effects of covid because it could happen to anyone of us. Society will be stronger with greater empathy, understanding, and constructive support. Loneliness is a real problem. If more people could understand the inner struggles of patients with long covid, it will make this world a less lonely place. May this book shine a path along this road less traveled to inspire more people to walk with the hurting with love and understanding.

Fiona Lowenstein is an award-winning journalist, producer, speaker, and the founder of Body Politic, a grassroots patient-led health justice organization. Lowenstein was hospitalized for COVID-19 in March 2020 and went on to found the Body Politic COVID-19 Support Group, which offers support and resources to over eleven thousand people living with COVID-19 around the world. They live in Los Angeles.

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.

Rating: 4 stars of 5.

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This book has been provided courtesy of The Experiment and NetGalley without requiring a positive review. All opinions offered above are mine unless otherwise stated or implied.

This book took me a long time to get through in part because I related too much to some stories. I was very sick with Covid for a very long time and still have some effects two and a half years later. I appreciated that it’s just many people telling their stories and saying what has helped them.

I had trouble with the very first essay as it was so much like my experience with health care workers but the author attributed her terrible treatment to the fact that she’s a woman of color. I stopped seeking any kind of medical care after a while because my treatment was so awful, and I felt alone again in reading again and again that this kind of reprehensible treatment was only given to people of color. I’m not discounting the author’s experience or that people of color do get a lower standard of care, but I ultimately felt very “othered” by an essay that otherwise could have felt like someone finally relating to how terrified, abandoned and angry I felt for so many months. I appreciated her story though, and that her advice was also printed in Spanish.

This will be a great book for other long haulers, both for the sense of community and the many pieces of advice.

I received a copy of this book through NetGalley in exchange for an honest review.

This is a tough book to read.

This book is a collection of stories from people experiencing long COVID. Part memoir, part guide this is a harrowing at times read. People who are dealing with long COVID share there experiences, their health, their anguish, and some tips. This book helps remind people that they're not alone and sharing things that worked for them in managing, surviving, and healing both physically and mentally. The book touches on how the pandemic has impacted people in different ways and why long COVID is such a concern.

Definitely worth the read!

Part memoir, part guidebook. The Long Covid Survival Guide provides an inside look into the world of long haulers while also giving guidance and insight. Whereas much information is available in research format, this is the first book to give the layperson (particularly ones dealing with this infliction) access to information and first hand experience.

I read this book last year. It was added to Netgalley around the time I was diagnosed with Long Covid, and it was instrumental in me taking my illness seriously and realizing that the steps I had currently been taking were making me sicker. However, I was sick enough at the time that I had no idea how to review this book. I didn’t read it cover to cover, so I felt like I couldn’t review it. And my sick brain could not bring myself to read chapters that did not relate to my situation exactly. I was sick enough at the time that I couldn’t even explain to people how tired I felt. (Like I had been awake for 36 hours straight. Like - you’re not doing great but you’re not hallucinating yet? You can complete tasks but it takes a lot longer and is probably not as accurate as you would like.)

I highly recommend this book to anyone who is suffering from Long Covid or wanting to know more about how to care for someone with Long Covid. It does not provide medical solutions, as there is not a proven cure for Long Covid yet. One of the difficulties of the disease is that symptoms can vary widely, and treatment solutions can vary widely from case to case. However, researchers have come so far in their understand of the disease and treatments are being developed, so recovery is possible!