Nearly three years into the Covid pandemic, people who have long Covid are still looking for answers. Now, finally, they have some.
With the publication of “The Long Covid Survival Guide: How to Take Care of Yourself and What Comes Next,” a group of patients have supplied what science and the medical profession could not – a guide to what it feels like to have long Covid, and what to do about it.
It’s an example of the peer-to-peer patient movement, which has been taking health care by storm, first quietly and then loudly, ever since I arrived in the world of health care around 2010.
It’s based on the idea that patients can help other patients – peer to peer – to navigate the complications of an illness. Doctors may understand or may not, but patients who have been there are often able to help others with practical support – ”Try this medicine and this physical therapy treatment!” – and also emotional support – “Yes, I know, it can be extremely depressing and lonely.”
Patients are scoffed at
Perhaps nowhere has this been proven more important and more salient than in long Covid. When people with Covid that lasted longer than a few weeks started talking about their illness, they were often scoffed at or told that their problems were all in their head, by medical professionals and scientists as well as friends and relatives. As early as May of 2020, just a few months into the pandemic, these patients began finding each other and connecting online to compare notes and find support — support that science and medicine still have not been able to deliver in any broad and meaningful way.
“I wish I’d had this book when I first got sick” is one of the blurbs on the book “The Long Covid Survival Guide: How to Take Care of Yourself and What Comes Next,” published by The Experiment Publishing in New York.
I first met the editor, Fiona Lowenstein, in the spring of 2020, when we first started writing about long Covid – long before the nation, the world, and other news organizations – were aware of the idea. Lowenstein is described on the book jacket as “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.“
Lowenstein’s work then was to form the Body Politic support group, which served as a resource supplier, a shoulder to sob on, a place where patients recommended tests and health-care providers, and an online venue where people could share and compare their experiences and learn from others.
While Body Politic has thousands of members, the actual estimate of the number of people living with long Covid is a conundrum — but extends well into the millions. Medicine and science have not arrived at a widely accepted definition of long Covid, partly because it can manifest so differently in different people, affecting the cardiovascular, respiratory, renal, neurological and pretty much all the other body systems. Symptoms can also include extreme fatigue, hair loss, depression, blood clots, digestive problems and any of several hundred total symptoms. Estimates of the number of people with Covid lasting longer than a couple of weeks run from 10 to 30 percent of all people who contract Covid; I have seen reports saying that 24 million people in the United States alone have long Covid.
Patients find each other online
In the popular consciousness in the early days of the pandemic, the idea was that Covid either kills you or gives you a mild cold-like illness. The idea that the illness could extend longer than a few weeks while leaving you alive was foreign to doctors, government officials and even patients. What Lowenstein and her associates realized was that this was indeed true, borne out by their own experiences.
Body Politic – and other patient-oriented groups on the internet, like the Facebook groups the Covid Long-Hauler Advocacy Project, the Covid-19 Long-Haulers Discussion Group and Survivor Corps – taught patients that by joining together they could share expertise and make each others’ lives better. They could also shape policy, calling attention to long Covid and changing the face of medicine by saying “we will not be ignored and patronized and discarded.”
The deep genius of this book is that patients helping other patients can make the world a better place – and that when your doctor gaslights you, your boyfriend accuses you of malingering, and your employer demands that you pull up your socks and get back to the office, 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.
This invaluable book contains insights on topics including getting diagnosed; finding a caregiver; confronting medical racism and gaslighting; navigating employment issues and financial stress; dealing with fatigue and brain fog; caring for your mental health, and more.
Contributors who helped us
Among the contributors are some people we have interviewed during the pandemic, as we tried to understand the depth and breadth of long Covid.
Chimére LaDawn Smith, a Baltimore schoolteacher, spoke to us in the summer of 2020 about her journey through Baltimore area emergency rooms and doctor’s offices, for a piece we titled “Determination defeats despair for the ‘Black female nerd of Covid.’”
Karyn Bishof, a firefighter from Florida and founder of the Facebook Long-Hauler Advocacy Group, spoke to us about her struggles with long Covid as a single mom.
Alison Sbrana, a person with myalgic encephalitis/chronic fatigue syndrome, spoke with us about her journey through the disabilities system, and her life as a person with disabilities. She also gave invaluable advice for our blog and to members of the Body Politic group about how to navigate – including the important advice to put yourself first (even if a journalist is nipping at your ankles to get an interview).
Rachel Robles spoke with us in summer of 2020 about her experiences as a young woman with long Covid – at a time when the common wisdom seemed to be that young people don’t suffer severe consequences from the illness.
And Lowenstein, in addition to editing the book, wrote an introduction titled “All you need is one person: The birth of a patient community (and what to expect from this book.”
Wrenching and uplifting
In sometimes wrenching, sometimes uplifting language, these women and others give indispensable, down-to-earth advice and “I was there” details about their journeys. Smith writes about how she wanted to die but found the will to live. Bishof and Sbrana write about the rights of people with disabilities.
Morgan Stephens writes about surviving mental illness. Monique Jackson writes about how she thought she was the only person suffering from menstrual issues – until she learned that she was not alone. “It’s my hope that, by sharing these conversations, we will help others feel less alone,” she writes.
Lisa McCorkell writes about “Knowledge is power,” explaining how to navigate research and better understand her own illness. McCorkell is a co-founder, along with other long Covid patients, of the Patient-Led Research Collaborative, which leapt into the void created by science and medicine trying to understand Covid, and used patient experiences and research to lead the way to understanding the illness.
Broad range of topics
As we were reporting on long Covid, we joined the Body Politic Slack channel, where we met many of the people named here, and dozens of others, as we continued to report on salient topics on long Covid: What are the reproductive issues for women in Covid? What are the male reproductive issues?
What are the psychological issues? How do you go about applying for disability? (Alison Sbrana’s counsel was most important in our coverage.)
What can we say about racial disparities in long Covid? The reporting we did was very preliminary; this now fills out the picture.
Other reviewers also found the value in this book: “A gem of a book” and “not only a moving and helpful compilation of stories but a necessary one,“ among others.
Ed Yong, the Atlantic magazine correspondent who became the chronicler of Covid, also blurbed the book, with high 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 the best. So many long-haulers have faced their illness alone and unheard; none ever need to do so again.”
This book is invaluable, as is the Body Politic online community that gave birth to it.
It would be terrific if it could have been written in 2020, when this whole thing started, to save the thousands of hours and thousands of tears shed by Covid patients who did not have access to this information. But it of course could not have been written then: It is only now, that this experience has been gathered and can be shown to affect hundreds of thousands of people worldwide.
Along with the practical advice, Lowenstein and the others address some larger issues. As Lowenstein writes: “I hope this book provides insights to those who may come after us. I hope that it provides a model for future patient-to-patient and peer-to-per support. I hope that maybe someday it serves as a historical artifact – proof that we were here and that we cared for one another. Most of all, I hope that on a dark or difficult day it provides what I needed most on my dark and difficult days: a place you can turn to for unequivocal support, understanding, and validation.”