What do you think?
Rate this book
The Long Covid Survival Guide: How to Take Care of Yourself and What Comes Next
The first patient-to-patient guide for people living with Long COVID—with expert advice and an afterword by the leading research scientist
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 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 live with and heal from Long COVID.
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 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 live with and heal from Long COVID.
288 pages, Paperback
First published November 8, 2022
62 people are currently reading
295 people want to read
Ratings & Reviews
Friends & Following
Create a free account to discover what your friends think of this book!
Community Reviews
Displaying 1 - 30 of 41 reviews
May 13, 2023
As a Covid Longhauler, I cannot recommend this book enough! If you are to only read one book on the Long Covid experience & management of symptoms, it should be this one.
Unlike other ones I've perused, this book compiles chapters written by patients themselves, and isn't afraid to confront the real systemic barriers to our care, such as medical gaslighting, ableism, navigating finances, and discrimination within the healthcare system. It paints such a realistic representation of what we go through, instead of being just focused on recovering asap to return to work. The chapters are well-focused and well-researched, holding extremely valuable information (even with an awesome glossary at the back!), especially on dysautonomia/POTS. I especially enjoyed the chapter authored by Dr. Putrino--who has been very instrumental in raising awareness of care and research for Longhaulers--and his contribution laid out the current theories behind what causes Long Covid, as well as how to advocate for ourselves in the medical system.
Overall, this book felt like a warm hug. It is so clear that it was made by patients, for patients. I felt so seen and validated with each page that I read, and I really took my time with completing it. I have been recommending this to fellow Longhaulers, but this would also be great for ableds to read to truly understand this mass-disabling experience that is arising from the pandemic, and learning how to support us (whether through community care or policy).
Unlike other ones I've perused, this book compiles chapters written by patients themselves, and isn't afraid to confront the real systemic barriers to our care, such as medical gaslighting, ableism, navigating finances, and discrimination within the healthcare system. It paints such a realistic representation of what we go through, instead of being just focused on recovering asap to return to work. The chapters are well-focused and well-researched, holding extremely valuable information (even with an awesome glossary at the back!), especially on dysautonomia/POTS. I especially enjoyed the chapter authored by Dr. Putrino--who has been very instrumental in raising awareness of care and research for Longhaulers--and his contribution laid out the current theories behind what causes Long Covid, as well as how to advocate for ourselves in the medical system.
Overall, this book felt like a warm hug. It is so clear that it was made by patients, for patients. I felt so seen and validated with each page that I read, and I really took my time with completing it. I have been recommending this to fellow Longhaulers, but this would also be great for ableds to read to truly understand this mass-disabling experience that is arising from the pandemic, and learning how to support us (whether through community care or policy).
February 5, 2025
This is such an important snapshot of history and hegemony in the making. I was in Aotearoa when the pandemic hit and there was surprisingly little misinformation being spread by our government. At one point, when we had a mask shortage, the official statement was that masks were unproven as an effective guard against Covid. The moment we had masks this narrative changed. Of course, such a condescending attitude towards civilians is disgusting, but it's nothing compared to what was happening in North America and other continents. Millions were denied healthcare, social support, and disability supplements that they had paid for with their taxes. Medical "experts" from Canada to India denied that Covid could last longer than 2 weeks. They saw it as only a respiratory illness, incapable of affecting neurological, circulatory, and immune systems. They rejected data from Long Covid patient readings, from blood pressure levels to antibody counts. They said their instruments were faulty. They blamed the patient's life threatening physical conditions on anxiety. They gave them antidepressants and other drugs that were directed at suppressing symptoms rather than addressing the cause of those symptoms. Longhaulers were persistently dismissed, denied diagnostic tests, and gaslit into believing their suffering was psychosomatic, a response that one of the writers in this collection traces to the historical diagnosis of hysteria.
It wasn't til I read this collection that I realised how long these struggles have existed: from hysteria to the death drive to chronic fatigue to the AIDS crisis. Over and again, medical and psychiatric professionals have controlled who gets to live and who gets to die. From Freud burying his discovery of widespread incest/sexual violence under bullshit metapsychological terms like the death drive and the id, to self-help Buddhist entrepreneurs dismissing depression as a motivational issue rather than a structural one. Over and again, suffering is individualised, atomised, and reduced to a essence of one's will, one's self-discipline, and one's incorrect emotional adaptiveness. And if you don't accept the shitty "cure" you're given, you deserve to die. You deserve to be excluded, neglected, and negated from the social world that riddled your body with sickness and maladaptations in the first place.
Everyone in this collection is blessed for speaking out against this. For organising against hierarchical systems of violence through patient collectives. For doing independent and collective research into your conditions. For connecting your struggles to a long line of disability advocacy, liberation, and justice. For having the patience to inform younger members of their history, and for being brave enough to speak your vulnerabilities to strangers. For sharing your wisdom on how to survive a life that feels impossible and destroyed. You are all so fucking real, and an inspiration to all present and future struggles, no matter how unfair, how crushing, and how defeating it can feel at times.
E hoa, ka whawhai tonu mātou, Āke! Āke! Āke!
It wasn't til I read this collection that I realised how long these struggles have existed: from hysteria to the death drive to chronic fatigue to the AIDS crisis. Over and again, medical and psychiatric professionals have controlled who gets to live and who gets to die. From Freud burying his discovery of widespread incest/sexual violence under bullshit metapsychological terms like the death drive and the id, to self-help Buddhist entrepreneurs dismissing depression as a motivational issue rather than a structural one. Over and again, suffering is individualised, atomised, and reduced to a essence of one's will, one's self-discipline, and one's incorrect emotional adaptiveness. And if you don't accept the shitty "cure" you're given, you deserve to die. You deserve to be excluded, neglected, and negated from the social world that riddled your body with sickness and maladaptations in the first place.
Everyone in this collection is blessed for speaking out against this. For organising against hierarchical systems of violence through patient collectives. For doing independent and collective research into your conditions. For connecting your struggles to a long line of disability advocacy, liberation, and justice. For having the patience to inform younger members of their history, and for being brave enough to speak your vulnerabilities to strangers. For sharing your wisdom on how to survive a life that feels impossible and destroyed. You are all so fucking real, and an inspiration to all present and future struggles, no matter how unfair, how crushing, and how defeating it can feel at times.
E hoa, ka whawhai tonu mātou, Āke! Āke! Āke!
October 21, 2024
Such an important addition to books on chronic illness moving forward. Recent statistics from the World Health Organization states 10–20% of people infected with COVID-19 are likely to develop long COVID. As infections continue, you or someone you know may one day need this book, whether for awareness or personal use. Filled with unique stories and tips for managing chronic illness, The Long Covid Survival Guide is an invaluable resource.
January 30, 2025
Practical, hopeful, insightful. I will be returning to this book often as I continue on my Long Covid journey. Everyone who loves someone with LC also needs to read it!
November 26, 2022
If you’re only going to read one book this year, make it this one. The mass disabling covid19 pandemic is still on a low boil out there.
January 10, 2023
An important book if you or a loved one has been afflicted with Long Covid. As someone who has LC, it is lifesaving to not feel alone. And for those living with someone with LC, this can help you better understand and be an advocate for your loved one.
Not all chapters will speak to everyone, but the book as a whole casts a wide enough net that anyone with LC will get plenty out of it.
Not all chapters will speak to everyone, but the book as a whole casts a wide enough net that anyone with LC will get plenty out of it.
September 22, 2022
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
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.
- 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
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.
February 12, 2025
An excellent resource. Would love an updated version.
June 3, 2023
Really Good
This is an outstanding resource that delves into the complexities of long Covid. This book offers a wealth of knowledge, addressing the various challenges individuals face in the aftermath of Covid-19, and equipping readers with practical tools and guidance.
Lowenstein's expertise shines through as she tackles the multifaceted issues surrounding long Covid. I found the book to be exceptionally comprehensive, providing valuable insights and actionable advice for managing the physical, emotional, and practical aspects of this condition. The author's empathetic approach creates a sense of understanding and validation for those grappling with long Covid's lingering effects.
This book stands as an exemplary public health resource, effectively shedding light on the impact of Covid-19 beyond the acute phase.
The Long Covid Survival Guide serves as a beacon of support, helping individuals regain control over their health and well-being.
The timing of reading this book during NAAW 2023 further enhanced its significance. Lowenstein's work aligns perfectly with the theme of National AccessAbility Week, offering essential guidance and support for individuals dealing with the long-term consequences of Covid-19.
The book provides a comprehensive roadmap for navigating the challenges of long Covid and empowers readers to take charge of their recovery journey.
Prepare to be informed and inspired as you immerse yourself in the pages of Fiona Lowenstein's exceptional book. The Long Covid Survival Guide is an indispensable resource for anyone seeking guidance on managing the aftermath of Covid-19 and reclaiming their health and well-being.
4.4/5
This is an outstanding resource that delves into the complexities of long Covid. This book offers a wealth of knowledge, addressing the various challenges individuals face in the aftermath of Covid-19, and equipping readers with practical tools and guidance.
Lowenstein's expertise shines through as she tackles the multifaceted issues surrounding long Covid. I found the book to be exceptionally comprehensive, providing valuable insights and actionable advice for managing the physical, emotional, and practical aspects of this condition. The author's empathetic approach creates a sense of understanding and validation for those grappling with long Covid's lingering effects.
This book stands as an exemplary public health resource, effectively shedding light on the impact of Covid-19 beyond the acute phase.
The Long Covid Survival Guide serves as a beacon of support, helping individuals regain control over their health and well-being.
The timing of reading this book during NAAW 2023 further enhanced its significance. Lowenstein's work aligns perfectly with the theme of National AccessAbility Week, offering essential guidance and support for individuals dealing with the long-term consequences of Covid-19.
The book provides a comprehensive roadmap for navigating the challenges of long Covid and empowers readers to take charge of their recovery journey.
Prepare to be informed and inspired as you immerse yourself in the pages of Fiona Lowenstein's exceptional book. The Long Covid Survival Guide is an indispensable resource for anyone seeking guidance on managing the aftermath of Covid-19 and reclaiming their health and well-being.
4.4/5
January 15, 2023
An essential read for those with Long COVID, their loved ones and caretakers, healthcare workers and researchers, and anyone interested in learning about the impact COVID has had on long haulers. There are so many isolating aspects to the ongoing COVID pandemic, but an especially heartbreaking component is how much Long COVID patients (and other chronically ill people trying to navigate the pandemic) are misunderstood, ignored, and gaslit by their family, friends, employers, doctors, and the medical industry. This book will likely be validating to patients with Long COVID and other chronic conditions; eye-opening to those not already familiar with the tremendous difficulties of navigating life and medical care with a chronic illness; and inspiring to activists who want to help bring awareness to historically stigmatized and overlooked topics in health. A tremendous collection of first-person narratives—I hope many more give it a read!
August 27, 2023
This is the best thing I’ve read on Long COVID so far. I’m 19 months into it myself and this book was validating and helpful. Thanks.
March 7, 2024
So far, this is the most informational book I’ve found. I found great comfort by Chapter 2. Seeing my past few months in other people’s words, helped ease my anxiety of this seemingly never-ending virus. This book also provides useful resources- these always come in handy when you aren’t feeling your best.
Good Luck
Good Luck
May 19, 2023
3.5 stars rounded up. An inconsistent collection of essays pertaining to different aspects of Long COVID sufferers. While some of the essays are absolutely stellar, others are a slog to get through. Still worth reading, because where it's good it's very, very good.
January 29, 2023
After months of searching online, asking doctors questions, going yo the hospital-there was very little help from the medical professionals on how to cope with Long Haul Covid- an umbrella of debilitating conditions. Most medical professionals don’t yet even recognize this condition and engage in patient gaslighting on this topic.
I stumbled on this book through NPR LifeKit podcast: How to support people with long covid. While searching online and coming covid support groups yielded some results, this book accumulates the current state of research, patient testimonials, recommendations, fender and race disparity in treatment and so so so much more.
It is a much needed sources when the support is missing. It is helpful to the person going through long covid but also for people that care about somebody going through it. It should also be required read to medical professionals especially those that are not actively participating in other long covid research or education.
I wish I found this book sooner, but so relived that I did. Please read it and recommend it to others.
I stumbled on this book through NPR LifeKit podcast: How to support people with long covid. While searching online and coming covid support groups yielded some results, this book accumulates the current state of research, patient testimonials, recommendations, fender and race disparity in treatment and so so so much more.
It is a much needed sources when the support is missing. It is helpful to the person going through long covid but also for people that care about somebody going through it. It should also be required read to medical professionals especially those that are not actively participating in other long covid research or education.
I wish I found this book sooner, but so relived that I did. Please read it and recommend it to others.
March 3, 2023
This was a helpful and informative book. It provided a wealth of both evidence-/research-based and anecdotal information about Long Covid that was useful in making sense of my own symptoms and experience with the disease. While not all of the chapters were relevant to my own experience, it was still helpful context in understanding the broader scope of this syndrome. I feel better equipped to understand what my health care providers are doing and why, as they advise additional testing and purpose various treatment options.
I am fortunate not to have faced some of the obstacles to access, care, and support that are described in the book, and am grateful to the task blazed by those who've walked this path ahead of me.
I recommend this book to those who are directly impacted by Long Covid, as well as those who are partners, caregivers, or otherwise closely connected to long haulers.
I am fortunate not to have faced some of the obstacles to access, care, and support that are described in the book, and am grateful to the task blazed by those who've walked this path ahead of me.
I recommend this book to those who are directly impacted by Long Covid, as well as those who are partners, caregivers, or otherwise closely connected to long haulers.
December 2, 2022
Informative and Detailed
In May of 2022 I got break-through Covid, probably a new Omicron variant, even though I had 4 COVID vaccines already. The Bivalent vaccine was not yet available. This book was much more helpful than my current PCP in Madison Wisconsin. He would not send me to a Cardiologist or an Infectious Disease MD here in Madison. I had to make appointments with my long term doctors back in Evanston Illinois. This book has given me comfort, additional resources, and recommendations for additional supplements to add to my already lengthy list of daily supplements. It’s very important to plan ahead, pace yourself and learn to say “no” when necessary. I love to read, meditate, and will get through this!
In May of 2022 I got break-through Covid, probably a new Omicron variant, even though I had 4 COVID vaccines already. The Bivalent vaccine was not yet available. This book was much more helpful than my current PCP in Madison Wisconsin. He would not send me to a Cardiologist or an Infectious Disease MD here in Madison. I had to make appointments with my long term doctors back in Evanston Illinois. This book has given me comfort, additional resources, and recommendations for additional supplements to add to my already lengthy list of daily supplements. It’s very important to plan ahead, pace yourself and learn to say “no” when necessary. I love to read, meditate, and will get through this!
April 10, 2023
Excellent and comprehensive collection of resources from many perspectives on Long COVID and it's impacts on patients and their loved ones. The book contains quality information on how to self advocate, evaluate new research, seek community support and learn from disability justice movements. I already recommend it to my patients with long COVID and will be using it for reference as I continue to do clinical work around both long COVID and other post infectious conditions
I will say that the experimental formatting with this was pretty interesting as well. For one note on accessibility: I had a hard time parsing the chapter on long COVID and menstruation in comic form and would appreciate a text transcript to read as an alternative.
I will say that the experimental formatting with this was pretty interesting as well. For one note on accessibility: I had a hard time parsing the chapter on long COVID and menstruation in comic form and would appreciate a text transcript to read as an alternative.
November 27, 2022
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!
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!
May 1, 2023
Contains many useful resources for navigating life and the US healthcare system with Long COVID. Helped me feel less alone in my experience.
At times, felt like it was trying to do it all—discuss systemic injustices, provide tangible resources, present personal anecdotes—which, as much as these are all intertwined facets of the Long COVID experience, contributed to a sense of disorganization. This book's helpfulness was also limited by the very reason it needs to exist: there's simply not enough information about or support in place for those with Long COVID.
Overall, highly valuable at the time of publication and my time of reading, despite its limitations.
At times, felt like it was trying to do it all—discuss systemic injustices, provide tangible resources, present personal anecdotes—which, as much as these are all intertwined facets of the Long COVID experience, contributed to a sense of disorganization. This book's helpfulness was also limited by the very reason it needs to exist: there's simply not enough information about or support in place for those with Long COVID.
Overall, highly valuable at the time of publication and my time of reading, despite its limitations.
February 26, 2023
This should be required reading for everyone, as the pandemic has affected everyone and ongoing covid infections continue to add newly disabled people to our undesirable club. It’s equally helpful to those suffering from long covid and those who love someone with long covid.
This book is like a bible for navigating a new illness with so much information from existing chronic illness. I could process it even with my brain fog and cognitive issues because of how well the information is organized and presented. Truly a survival guide and I’m so grateful it exists.
This book is like a bible for navigating a new illness with so much information from existing chronic illness. I could process it even with my brain fog and cognitive issues because of how well the information is organized and presented. Truly a survival guide and I’m so grateful it exists.
January 18, 2023
This is an excellent read and resource about long covid.
It's an anthology - different chapters written by different people, in very readable terms. What makes it useful too is that every chapter has a page on "survival tips" summarizing the chapter. This was helpful to me, as it will be for all readers, I suspect, to allow me to narrow down to the chapters that are of most interest.
I got it from the library but I think I'll be buying a copy for myself.
It's an anthology - different chapters written by different people, in very readable terms. What makes it useful too is that every chapter has a page on "survival tips" summarizing the chapter. This was helpful to me, as it will be for all readers, I suspect, to allow me to narrow down to the chapters that are of most interest.
I got it from the library but I think I'll be buying a copy for myself.
April 27, 2023
This book is full of so much insightful information and resources to guide understanding on long covid. It helped me realize that I've been dealing with long covid and encouraged me to start seeking medical care to figure out how I've been affected and how to treat it. I'm still in the process of running tests and haven't found anything conclusive yet, but I probably never would have set out for clinical clarity without this book.
January 29, 2023
Lowenstein shows the power of peer-led communities and groups in helping people, particularly women, find medical advice faster than using a traditional means of getting diagnosed. This is the future. Brava!
March 25, 2023
4*⭐️- ❤️🙏🏼
May 2, 2023
I've never cried so much reading a book. Relating to it so thoroughly. Wow. My people.
Critical read for anyone with Long Covid, or really, any chronic illness with no current cure.
Critical read for anyone with Long Covid, or really, any chronic illness with no current cure.
May 24, 2023
Read most of the chapters. A helpful read, although definitely more applicable to Americans.
November 13, 2023
Excellent book
January 29, 2023
It is hard to review this book on Long COVID because there are at the moment not many books on Long COVID so any book has the potential to be essential for people trying to understand, come to terms or treat their issues with Long COVID.
My biggest problem with the book is that it did not rally live up to the title. It doesnt feel like a "guide", it doesnt feel like it has everything I or anyone else needs to know about living and healing from Long COVID.
Most of this book is patients talking about their experiences and the challenges they face with some overly broad bits of advice thrown in. Parts of these accounts were powerful although when all together they felt too long and too repetitive. There was also issues with who was being picked to do the chapters with most of them being very visible/active people in the LC community it felt in that regard there was not quite the range of people I would have appreciated.
The mix of more structured advice - e.g. on diagnosis, on reading research papers feels a little jarring with the personal accounts.
For people with Long COVID I think it will be quite hard to navigate the book to get what they need from it but there is excellent information buried here as well as powerful parts of personal accounts of the experience of having Long COVID.
I think as someone in the UK I was surprised how different approach to the medical profession is. Petrino has some questions to present to your medical experts and I just dont think any GP or specialist in the UK would have the time or willingness to consider any of them.
I think there could really do with a chapter on helping people deal with medical discrimination and help people more to realise that they cannot necessarily trust what doctors say.
Some of the best content is content that the people who presented it have also presented elsewhere ( YouTube videos etc) but it is still good to have those bits in one place.
I do feel this was a bit of a missed opportunity but is still a useful addition to the Long COVID literature that is available at the moment.
My biggest problem with the book is that it did not rally live up to the title. It doesnt feel like a "guide", it doesnt feel like it has everything I or anyone else needs to know about living and healing from Long COVID.
Most of this book is patients talking about their experiences and the challenges they face with some overly broad bits of advice thrown in. Parts of these accounts were powerful although when all together they felt too long and too repetitive. There was also issues with who was being picked to do the chapters with most of them being very visible/active people in the LC community it felt in that regard there was not quite the range of people I would have appreciated.
The mix of more structured advice - e.g. on diagnosis, on reading research papers feels a little jarring with the personal accounts.
For people with Long COVID I think it will be quite hard to navigate the book to get what they need from it but there is excellent information buried here as well as powerful parts of personal accounts of the experience of having Long COVID.
I think as someone in the UK I was surprised how different approach to the medical profession is. Petrino has some questions to present to your medical experts and I just dont think any GP or specialist in the UK would have the time or willingness to consider any of them.
I think there could really do with a chapter on helping people deal with medical discrimination and help people more to realise that they cannot necessarily trust what doctors say.
Some of the best content is content that the people who presented it have also presented elsewhere ( YouTube videos etc) but it is still good to have those bits in one place.
I do feel this was a bit of a missed opportunity but is still a useful addition to the Long COVID literature that is available at the moment.
November 29, 2022
This highly 'padded' book, is still a very good primer for the Long Covid newbie who might be feeling desperate and unsure if her or his symptoms really constitute Long Covid.
Though this book won't provide that answer--since science still can't really confirm yes or no--these pages will comfort the sufferer that others are going through it too, and some of them really have it bad. If you are a woman or a person of color, the testimonials will also reassure you that you aren't the only one being gaslighted or dismissed for what is labeled hypochondria, hysterical, or viewed from a new perspective: pain catastrophizing. And the many testimonials seek to reassure the reader that there is a community out there to help the disenfranchised.
The most practical advice for dealing with Covid on a daily basis appears in chapter 3, entitled "Pacing," about the need to economize your energy or 'save your spoons' to use the lingo of Spoon Theory, a term well know by those who suffer from any disease that saps all energy.
The most substantive chapter in terms of how to get a diagnosis, the kinds of tests that can help at least discard other possible causes, medications and treatment is contained on chapter 6. For those suffering from severe brain fog and memory issues, chapters 7 describes one Covid patient's alarming mental and emotional symptoms.
Chapter 8 contains very useful advice on how to cope with it.
And it was only here I found the terms describing my own immense physical and mental fatigue, when one's energy suddenly gives out ("crashing"), and "post-exertional malaise" or PEM, when too much effort expended with not enough pauses to regroup results in the necessity to take to one's bed--and nothing less will do. Since almost all "Long-haulers," as we have been nicknamed, feel immense fatigue, this chapters contains elements almost all of us will relate to.
As mentioned in the opening lines, this book could have been half as long, but having some testimonials of others' experiences is nonetheless of value.
Though this book won't provide that answer--since science still can't really confirm yes or no--these pages will comfort the sufferer that others are going through it too, and some of them really have it bad. If you are a woman or a person of color, the testimonials will also reassure you that you aren't the only one being gaslighted or dismissed for what is labeled hypochondria, hysterical, or viewed from a new perspective: pain catastrophizing. And the many testimonials seek to reassure the reader that there is a community out there to help the disenfranchised.
The most practical advice for dealing with Covid on a daily basis appears in chapter 3, entitled "Pacing," about the need to economize your energy or 'save your spoons' to use the lingo of Spoon Theory, a term well know by those who suffer from any disease that saps all energy.
The most substantive chapter in terms of how to get a diagnosis, the kinds of tests that can help at least discard other possible causes, medications and treatment is contained on chapter 6. For those suffering from severe brain fog and memory issues, chapters 7 describes one Covid patient's alarming mental and emotional symptoms.
Chapter 8 contains very useful advice on how to cope with it.
And it was only here I found the terms describing my own immense physical and mental fatigue, when one's energy suddenly gives out ("crashing"), and "post-exertional malaise" or PEM, when too much effort expended with not enough pauses to regroup results in the necessity to take to one's bed--and nothing less will do. Since almost all "Long-haulers," as we have been nicknamed, feel immense fatigue, this chapters contains elements almost all of us will relate to.
As mentioned in the opening lines, this book could have been half as long, but having some testimonials of others' experiences is nonetheless of value.
December 15, 2022
I really, really wanted to like this book, especially because I already liked at least four contributors' other writing elsewhere, but I don't think this works as an anthology.
The book is not organized in a particularly coherent way. It jumps back and forth between concise, rigorous information about what to do as a patient (like an actual handbook) and meandering personal narratives (like a memoir). As someone who *doesn't* have cognitive dysfunction from post-viral illness, I found parts of it hard to follow, so I can't imagine handing it to someone who's really suffering. The example that stood out most to me was the "Stop. Rest. Pace." chapter, which should have been a critically informative chapter to those with ME/CFS-style symptoms, but was instead a series of anecdotes those words used as decorative section headers.
There is definitely still useful content in this book, but given the confusing and inconsistent way it's presented, I'd only recommend about 1/3 of it. If you don't have the energy to navigate online forums and learn all of this yourself, this might be an okay starting point. But contrary to the over-promised title, you'll still have to do a lot of your own research afterwards.
The book is not organized in a particularly coherent way. It jumps back and forth between concise, rigorous information about what to do as a patient (like an actual handbook) and meandering personal narratives (like a memoir). As someone who *doesn't* have cognitive dysfunction from post-viral illness, I found parts of it hard to follow, so I can't imagine handing it to someone who's really suffering. The example that stood out most to me was the "Stop. Rest. Pace." chapter, which should have been a critically informative chapter to those with ME/CFS-style symptoms, but was instead a series of anecdotes those words used as decorative section headers.
There is definitely still useful content in this book, but given the confusing and inconsistent way it's presented, I'd only recommend about 1/3 of it. If you don't have the energy to navigate online forums and learn all of this yourself, this might be an okay starting point. But contrary to the over-promised title, you'll still have to do a lot of your own research afterwards.
Displaying 1 - 30 of 41 reviews