"The Long COVID Survival Guide" (Fiona Lowenstein, ed)

TITLE: The Long COVID Survival Guide: Stories and Advice from Twenty Long-Haulers and Experts
AUTHOR: Fiona Lowenstein, ed
PUBLISHER: New York, NY: The Experiment, 2022, (288 pages).
 

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

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.

conrade

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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.