The Long COVID Initiative recently sat down with Fiona Lowenstein, a journalist with bylines in The New York Times, Vox, and The Guardian, and the founder of Body Politic, which began as a queer feminist wellness collective and is now a patient-led Long COVID advocacy organization with a popular patient support group. They are also the editor of “The Long COVID Survival Guide,” a peer-to-peer advice book on Long COVID that is now available.
LCI: How did Body Politic get started?
FL: Body Politic actually existed before the pandemic, which meant that we had the infrastructure for a community health group prior to COVID-19 and could adapt when the pandemic happened.
I started Body Politic in 2018 and at the time we were calling it a Queer Feminist Wellness Collective. We were holding regular events in New York City, exploring topics at the intersection of health and social justice, through the lens of people’s lived experiences. When the pandemic began I was thinking about ways that Body Politic could help people. I became infected with COVID early on and got Long COVID along with my partner and several friends so there was a core group of us in our twenties, suffering. As our symptoms began to morph it became clear that there was very little information available about Long COVID. I really bonded with my friends experiencing the same thing so that is how the Body Politic COVID-19 Support Group began.
How do you see the role of support groups in the Long COVID community?
Support groups were a lifeline to me early on and I think also to many others. When I started the Body Politic group for COVID-19 I was not aware of any other patient support groups. I felt very physically and emotionally isolated but the support group felt like emerging from isolation into a room of people facing the same experience.
Long COVID is a patient-led term. Do you think that this made it harder to get some sort of legitimate mainstream attention in the health care system?
I wouldn’t say so just because I don’t think that this was an issue that the mainstream health care system would have been alerted to had patients not been gathering in these support groups and telling their stories online. I say that because we have to remember that the beginning of the pandemic, and of course this has happened throughout the pandemic, was a period of time where there was enormous strain on most health care systems so a lot of our regular healthcare providers were inundated.
That being said, there absolutely can be a bias against patients who kind of own their own health care experiences, patients who become experts in an illness. There also is often a gender bias that I think comes into play with Long COVID, which we have also seen with other infection associated illnesses.
What can you tell us about the Long COVID Survival Guide?
The Long COVID Survival Guide is in many ways a support group in book form, and that was a large part of the motivation for this book. The goal with the book is to provide information, emotional support and logistical advice that might otherwise be difficult to find. There’s also information in the book about how to access disability benefits, how to navigate workplace accommodations, how to decipher and understand emerging research. The book also bears witness to people’s lived experiences. It is crucial that people tell their own Long COVID stories and have a voice.
Were there any specific reasons that you brought the people in that you did to write this book and share their stories?
I wanted to share the stories of a relatively diverse group of contributors. I think it’s difficult for one person to write a guide to Long COVID because our illness experiences vary. I mean Long COVID is an umbrella term which includes different types of symptom clusters and illness experiences. Not everyone has the exact same trajectory, or ends up with the same diagnoses, but we all navigate the world differently, depending on who we are, and especially when we’re navigating health care systems, issues of identity can come up. The issue of medical bias and gas lighting has been very big for a lot of long haulers, especially women, trans and non-binary folks and people of color.
Has anything stood out to you as a major surprise, either in the Long COVID community, or even just in the process of compiling the book?
One thing that has stood out is that people with chronic conditions are really good at designing their own accommodations and workflows. Everyone involved in this book was dealing with some sort of chronic health issue and it was amazing to see how contributors came together, worked together and helped each other out.
Is there a focus through the book on addressing a lack of education or awareness around Long COVID, or changing some of the stigma around it?
I think this book is for COVID long-haulers, but it’s also for anyone who has ever had to navigate a complex chronic illness, navigate a healthcare system. We also want it to be for anyone who’s trying to understand Long COVID, and I think that most of the contributors would argue that we all need to understand Long COVID because, if current estimates prove correct, it is very likely that we all will know or already do know somebody with this illness. I think a lot of the stories in the book will resonate with long haulers. I also hope that they will resonate with caregivers, employers and co-workers of long haulers.
What comes next? What would you want someone that’s struggling with Long COVID to know?
I asked the contributors to share some of their biggest tips from their chapters, and there were a couple of things that stood out. One thing in particular, is financial issues. Long haulers need to understand that they can claim disability, even if it’s temporary, even if your Long COVID disappears, and in six months you have it again. I think, for a lot of people it is stigmatized and there is a lot of misunderstanding about what it means to be disabled and claim disability benefits.
I really want to see more projects like this that center around lived experiences, while also closing that gap between the scientific and medical establishment and the people that it’s meant to serve.
Is there anything else that people should know?
I just want to be clear that this book is not in any way pushing a cure or a “one size fits all” approach to managing Long COVID. There are no currently proven cures for Long COVID. There are symptom management techniques and various treatments that have helped people.
The goal of this book once again is to be a lifeline and survival guide as you wait for treatment and better social support. It is a very real and candid description of what we all went through, and honestly, what we wish we would have known when we first first got sick.