69 - Fiona Lowenstein - Journalist, Writer, Body Politic Founder & Long Covid Advocate

Episode 69 of the Long Covid Podcast is a chat with Fiona Lowenstein, Journalist, writer, Long Covid Advocate and now author/editor of "The Long Covid Survival Guide".

We chat through Fiona's early experiences of Covid & Long Covid which led them to create the Body Politic support group which is such a lifeline to so many. We also discuss the book and the idea behind it, as well as so much more.

Purchase "The Long Covid Survival Guide"

Long COVID Survival Guide book exchange

The book's page on Fiona's website (has an updated list of upcoming and past book talks people can attend or watch recorded videos of)

Jennifer Brea "Unrest"

Headshot - credit JJ Geiger

For more information about Long Covid Breathing, their courses, workshops & other shorter sessions, please check out this link

(music - Brock Hewitt, Rule of Life)

Transcript

Jackie Baxter  0:00  
Hello, and welcome to this episode of the long COVID Podcast. I am absolutely delighted to welcome my guest today, Fiona Lowenstein, who many of you will have heard of from their long COVID advocacy work. And now the new book, The long COVID Survival Guide. So there's loads to talk about. So welcome to the podcast.

Fiona Lowenstein  0:20  
Thanks so much for having me on.

Jackie Baxter  0:22  
I'm so happy to have you here. So would you mind just introducing yourself a little and telling us a bit more about yourself?

Fiona Lowenstein  0:30  
Yeah, sure. So I live in Los Angeles, I'm a journalist and a writer. And also, of course, a COVID long Hauler. And I first got involved in I guess, the long COVID community when when I got sick, I started Body Politic. And I can talk more about that later. But body politic is now a long COVID support group and an advocacy organization. And so I have dedicated I guess, a lot of my focus as a journalist over the past two to three years to covering topics related to long COVID, COVID-19 patient issues and the pandemic. But I think through that experience, have definitely also just tried to do more reporting on issues related to disability and chronic illness, including you know, how to access accommodations in the workplace, and that sort of thing. 

And then, as you mentioned, of course, most recently was the editor for the long COVID Survival Guide, which is a book of basically essays and advice from COVID long haulers and people with related illnesses, who are basically the the best experts we have on this disease, trying to, I guess, share what we wish we would have known when we first got sick.

Jackie Baxter  1:44  
Yeah, totally. I mean, the number of times I've gone Oh, I wish I knew that. That sounds amazing. But I love what you said about, you know, sort of having a sort of wider understanding of sort of disability and issues surrounding it, because it sounds like you, a little bit like, me have kind of had your eyes opened a little bit by the whole Thing. I just didn't realize anything about the sort of idea of disability and what people have been going through for so long. And I just hadn't realized, and I guess that's like a lot of people are probably in a similar position.

Fiona Lowenstein  2:23  
Yeah, for sure. I mean, I, I would say that I definitely had to do a lot of, and I think I'm still I would not say that this journey is complete at all, had to do a lot of unlearning internalized ableism. And, you know, really even just learning what ableism is and what disability justice is. 

And I think it's ironic in some ways, because I did grow up with a chronically ill parent and  I grew up in a household where health care was a huge issue. And, you know, we did not have stable or good health insurance. You know, in the United States, this is a slightly different issue than, of course, what you deal with it in the UK. And so I grew up, you know, knowing that the US healthcare system was incredibly flawed, and that it was, you know, it really, really difficult for people with quote, unquote, a pre existing condition, which was what you know, one of my parents had, and that if you didn't have a lot of money, if you didn't have employer based health insurance, that the situation was even more difficult. 

So I had all of that knowledge going into the pandemic, but there was still so much that I didn't understand, and specifically related to, you know, the existence of post-infectious chronic illnesses, like myalgic encephalomyelitis, and long COVID now of course, but also, you know, the relationship between - I didn't know what dysautonomia was, I didn't know about so many of these illnesses. And in retrospect, you know, I was actually talking to my mom last night, and we were, you know, discussing things and realizing that my grandma most definitely got a PoTS diagnosis at some point in time. But you know, we weren't aware of it, we just know that she was given a tilt table test, and she failed the tilt table test. 

Like, you know, you look back at your life kind of with these new goggles on after you, you learn this stuff, and you're like, Hey, I've actually maybe experienced this before, I know people who have experienced this. So it definitely has been eye opening for me. And I feel very sad that this is not information that everybody has. Because I think it would have helped me navigate health issues in my life prior to this better and with better understandings. And I also think it would have helped me navigate certain relationships with people in my life who are dealing with similar health issues better.

Jackie Baxter  4:38  
Yeah, totally. I almost feel like kind of embarrassed some of the time that I didn't have more of an awareness of just other things, I guess, you know, other illnesses. You know, what people were - people's struggles or with health care or diagnosis or anything, and I guess I was just in such a privileged position to have never experienced any of them before. But well, I guess that's part of what's so important about advocacy and stuff, isn't it, is getting that out there?

Fiona Lowenstein  5:09  
Absolutely. Yeah, I relate to what you say. I similarly, sometimes feel kind of embarrassed at my naivete prior to the pandemic. And again, in many ways, I was kind of aware of, you know, health equity issues of certain types. But I also try and practice some level of compassion. And I have talked to my therapist about this, to be honest, just thinking about, again, how there really isn't that widespread public education about this stuff. There isn't clinical education even, right? I have, you know, lots of friends in medical school. And I know that a lot of them are not learning about this stuff. I know, that's something that Jennifer Brea touches on quite a bit in the documentary "Unrest". And at MEaction, you know, has talked about a lot - how undereducated clinicians are on these diseases. 

And it you know, it makes me I've tried to sort of bring a more compassionate lens to just thinking about that lack of education, even when I'm thinking about, you know, the ways that certain people are, that I know, are living their lives, you know, with regards to COVID mitigation, or you know, maybe not taking certain steps to mitigate spread in their communities and realizing that, once again, that widespread public education about the risk of long COVID, for example, just is not out there, right. And so a lot of people don't realize the risk that they're taking, it's not even that they're making that calculated decision to take that risk. A lot of people just haven't been given the information. And so you know, that is ultimately a failure of the government, a failure of our education systems. And so I try to have compassion for individuals, including myself to some degree, you know, because it's hard to live otherwise, honestly. 

Jackie Baxter  6:53  
Yeah, I totally hear that. Yeah. It's so easy to judge people in the sort of the heat of the moment, isn't it? I've definitely, definitely found myself doing that. And then sort of after the moment has passed, and I sort of have to step back and say, Okay, well, maybe they're not seeing things from the same place as I am. 

Would you mind just chatting a little bit about when you kind of initially got sick? I think, probably similar to me, this was kind of in the early days, wasn't it? Before long COVID was really that much of a thing?

Fiona Lowenstein  7:29  
Yeah, yeah. So I was living in New York City at the time, I was born and raised in New York City, I relocated to Los Angeles in 2021. And I was infected, at least, we believe that I was infected on March 10 of 2020. So this was quite early in the pandemic, you know, things had not shut down in New York at all at that point. I had a friend come over to my apartment, I should say, just to give a little context, that body politic existed before the pandemic, as a queer feminist wellness collective. It was basically a group that I had started after graduating college and moving to New York City and feeling a real kind of lack of the community that I had had in college, to try and explore themes in health and wellness through an explicitly political lens, you know, the wellness industry was really exploding at that time. But it was very whitewashed, it was very heteronormative. You know, it was, it was a lot of, you know, people going to spin class and yoga, and at the same time, like Trump had just been elected, and it felt like no one was talking about it. And I was like, I want a space for us to be able to like meditate and talk about the fact that Fascism is on the rise. 

And so that's kind of just the context of what body politic was before the pandemic. So one of my very, very close friends from college, Sabrina Bleich, came over to my house, she was super involved in that first iteration of body politic. And she came over to my place on March 10, to kind of do some planning for, you know, body politic events for the future. And we did talk about the pandemic, you know, we were thinking about how body politic could have a role during, you know, we weren't calling it pandemic, of course, but we how it could have a role during this disease outbreak. 

And, you know, we knew at that point, I think there was maybe one confirmed case or a couple confirmed cases of community spread in New York City. And so we were talking about, you know, should we be having some sort of affinity group or I think we actually use the word support group for elderly and immunocompromised people or at that time, honestly, there was even that early, there were some incidents of anti Asian hate and violence. So we were also talking about, you know, what can we do in that space? Can we have support groups, you know, for Asian folks in our community who need to, you know, gather and talk about that. 

So we were having these conversations, but again, very much from the perspective of thinking of ourselves as kind of allies to the vulnerable, because the messaging at the time was very much that, you know, this was going to be a little bit like the flu. And if you weren't of you know, these specific categories, you know, the elderly, the immunocompromised, you really didn't have much to worry about personally. And then Sabrina kind of got sick before my eyes at my house, she just suddenly was like, I'm really not feeling well and got pale. And you know, neither of us thought it was COVID because that seemed bizarre and like something that we'd only seen in the news. But just out of an abundance of precaution, we figured, okay, well, why don't you just go home right away. And you know, I think I like Lysol wiped you down a couple of things in my apartment. 

And then I remember thinking, Okay, I'm, I'm gonna be like, a little more careful now, I think I'm not gonna get on the subway if I don't have to. And at the time, I was like a fitness instructor at a local studio. I was like, I'm not going to do any hands on adjustments. And I'm going to bring like Purell for all my students. You know, again, we did not know what we were doing right? So, needless to say, a couple days later, I got sick.

Our cases kind of progressed slightly differently. But I think it is interesting to look at our different trajectories. And I'll just say that, you know, this is something that she's spoken about publicly as well, I would not be sharing this story without her consent. But basically, I developed pretty severe shortness of breath early on in my COVID symptoms, which was why I went to the hospital at my primary care provider's recommendation, I went to the ER, and I was admitted into the hospital. And I spent a couple of nights in the hospital, which is not necessarily a super common experience for long haulers, right? A lot of people had an initially mild or, you know, more moderate case. 

Or, like, in the case of my friend, Sabrina were actually very sick. She was quite ill. But she didn't have that hallmark symptom of severe shortness of breath. And she also didn't have a trusted primary care provider like I did. And so she just couldn't get the care that she needed, Right? In New York City, hospitals were incredibly overwhelmed. And healthcare systems were super overwhelmed. And so it was like, trying to get in touch with doctors via telehealth, and they wouldn't be responsive. And they were, you know, telling her to take Tylenol. And I experienced some of that too, before I kind of connected with my PCP. So, you know, I was able, I was not put on a ventilator, but I got some supplemental oxygen, I do think that made a difference in my recovery. I know that there are other patients who were basically dealing with a low level of hypoxia for, you know, weeks and months in New York City. 

And of course, there are also stories of black women who got sick at the same time that I did, had the same symptoms that I did, called for help. And we're basically told it's anxiety. And some of those people didn't make it. So I also always try and mention that, you know, my race, my relative I think economic privilege, you know I don't come from a wealthy family. But I have lived in New York City for a long time, I had a primary care provider that I had worked with for a long time, I even wore my Yale sweatshirt to the ER, because I was like, Hey, this is something fancy that I'm going to do. Like maybe this will make people pay attention to me, you know, there were various things that I think caused the providers there to take me seriously when they weren't taking other people seriously. And that is just so messed up that those sort of hierarchies were in place, and it's messed up that I benefited from them. But that's, that's the reality. 

When I got home from the hospital, they discharged me because my shortness of breath, you know, had gotten better, my oxygen levels have gotten better. You know, I assumed things would just kind of get better. But that was when really, all the other symptoms showed up. I realised I couldn't smell, I started having these really bad headaches. That was actually when the kind of nasal congestion first developed. I started having dermatological issues, really intense fatigue, very intense GI issues, couldn't eat anything, was losing a lot of weight, kind of, you know, a lot of the symptoms I think people are familiar with in the long COVID community. And so once again, I think as terrible as it was that it was infected by a close friend, at the same time, having that other person who was going through it was really helpful. 

I was able to get tested because I was hospitalized, whereas my partner who I infected was not able to get tested because they were not severe enough to get hospitalized. And Sabrina who had infected me was not able to get tested because she was not able to get hospitalized. But since I had that positive COVID test, it sort of confirmed at least on a personal level, you know, not certainly on a clinical level, but it confirmed for both my partner and my friend that they had COVID. And so they were able to kind of pursue their care with that knowledge, at least in mind, which was helpful. 

And then in turn, you know, my friend Sabrina and I - we kept in touch and so as I was developing these new symptoms, she was developing them too. And we were looking at the CDC symptom lists and saying, Okay, well, I'm having I'm vomiting and having diarrhea, but I'm not seeing that on this list like, did I get food poisoning at the hospital? And she's going  Well, I don't think so because I have the same symptoms, right? We're going, Okay, I can't smell - can you smell? And you know, she's going okay, well, I just found a thread on Twitter from an actor in LA who got it. And she says she can't smell either, you know. So we were doing all this kind of detective work and sleuthing. 

And I remember the first FaceTime call we had once I was kind of well enough to speak again, and how validating it was, I mean, we were just crying to each other like, we both had felt so isolated, and like all of these symptoms were disconnected. And once we were actually able to talk to each other and realize that we were experiencing many of the same things. It was just - it felt almost like a homecoming, even though it was also obviously disturbing that we were experiencing symptoms that the CDC didn't even seem to know about. 

And we just felt like, simultaneously, there needs to be a place for COVID patients to share information, because this information is not getting out there, we're not hearing about it on the news. And at the same time, there needs to be some sort of emotional space for us to gather because none of our friends and family understand what we're going through. If anything, people - a lot of people reaching out to us, we're kind of reaching out in this voyeuristic way of like, wanting to know what it's like out have a sense of, you know, like fear and anxiety, which I totally understand. And so, you know, we just basically realized that that's some kind of support group, some kind of forum. 

I was honestly, at this point, talking to people individually on social media, because people had seen my story, I had written about what I had experienced in the New York Times just being hospitalized, because I felt like I had an obligation to like share that you can get very sick, even if you're young and don't have any known pre existing conditions. So I was already talking with some individuals, and we just realized, you know, maybe we should just connect all of these people that I'm talking to in like one group and maybe we should actually post about this group on body politic's Instagram, because that's a thing that already exists, and people could join it. And so that was the very, you know, initial iteration of the support group. 

And then, of course, I wrote a second piece in The New York Times about not recovering from COVID, that quoted some of the people in that initial very small kind of Instagram support group. And we embedded the link to join the support group in that New York Times op ed. And that was - that op ed, to my knowledge, is the first like mainstream media article that describes what is now known as long COVID. And after it was published, overnight, 2000 people signed up to join the group. So that was like a very shocking moment, because it just told us immediately, okay, this is not something that just a few of us are experiencing, this is something that actually tons of people are experiencing, and they feel desperate enough and alone enough to sign up for a random online community that they've never heard of before with a bunch of strangers. So that was kind of how my story and my experience led into, you know, the first phase of body politic 2.0.

Jackie Baxter  18:07  
Yeah, I think that article that you just mentioned, I think that might have been the first one that I saw as well, it's so hard to remember that far back, isn't it? But I think what you're saying about the sort of aloneness, I think, is something that I've really noticed. And you were saying how you had your friend that you were able to kind of talk to and compare notes and things and you know, physically it doesn't do anything, but you know, knowing that you've got someone else there, because when I was first ill, it was literally just me, I didn't even realize it was COVID to start with, because it just seems so unlikely. And then when I realized it was it was like, Oh, my goodness, I'm the only person that I know, I'm the only person in like, you know, the whole country. And obviously I wasn't, but that's what it felt like. And then when you finally realize that there are other people out there, it's like, it's horrifying. But it's somewhat comforting at the same time, isn't it?

Fiona Lowenstein  19:03  
Absolutely. And I think as terrifying as it was to be in the hospital in New York City in March of 2020. Like, I would not wish that experience on anyone. It was not a good time to be there. It was also a privilege. It was a privilege to get to speak to health care providers at that time and to be treated by them because very few people got that. And it was validating in certain ways. For example, I was told by one of the doctors that treated me, you know, I said, Yeah, I'm pretty sure I got it from my friend. And they said, Well, to be honest, you could just get it, pick it up on the subway at this point. It's that - it's being spread that frequently. That wasn't really the messaging on the news on March 14 in New York City, you know, so, but healthcare workers were aware because they were seeing similarly they said to me, yeah, there's a patient in the next room who's 30, who's having a really hard time breathing and she's a runner, and you know, she didn't have any pre existing conditions. 

So I got information that other people didn't have. And so I felt a little bit of a responsibility after having had that privilege, because I knew that there were people out there like you describe the experience that you had, you know, I saw that through my friend Sabrina - she was pretty socially and physically isolated, that were just not at all getting access to that information. And it just felt like if there's any way for me to just take even the tiniest bit of information I've gotten and share it and validate people's experiences, it feels like that's the first step to you know, getting care, even though it still took honestly like months for many people to access a doctor in in New York City. And I think it was similar in some areas of the UK at that time. Just because of the sheer healthcare overwhelm. I think the first step is just knowing you're not alone. Right? That's like the thing that makes it survivable, at least in the short term.

Jackie Baxter  20:49  
Yeah, yeah, it absolutely. is, I mean, it's a trauma, isn't it? You know, the whole Thing is, and that feeling of aloneness just makes it so much worse. So it's Yeah, I think it's absolutely huge. And, and also, you know, I mean, I'm sure it was probably the same worldwide, the health care services being so overwhelmed with people that if you weren't really, really, really, really seriously ill, or even if you were, you know, they just didn't have the space for you. So you know, when that's pretty horrendous for people.

Fiona Lowenstein  21:22  
Yeah, yeah. I think honestly, the hardest moment of the acute phase for me was when - I spent an entire night in the emergency room, because things were so delayed, it was just taking, you know, took 10 hours, basically, for them to process me and, you know, take all of my vitals and everything, and my partner was with me the whole time. And when we got to the hospital, my partner felt okay. But over the course of that night, my partner developed COVID as well, symptoms and, you know, midway through, they basically were like, I think they were running on adrenaline. So it wasn't, as you know, clear, but midway through, they were like, Can I get a thermometer and they had a really high fever. I don't remember what exactly it was, but it was like 102 points, you know, something that like, I've never seen them have a fever like that before. And so, you know, when they came back in, you know, of course, we were like, Oh, by the way, they're sick too now. And so, you know, they took my partner, we're like, Okay, well, we'll treat you both, basically. 

But they didn't treat my partner because my partner didn't have the severe shortness of breath. So when they came in with the tests, they only gave me a test. And I think the hardest moment of that entire kind of acute care journey was when I found out that I had to be admitted to the hospital, and that my partner couldn't be admitted to the hospital and was going to be sent home alone. And I didn't know how their course of COVID would progress. You know, thankfully, they did not develop severe shortness of breath. And thankfully, they did not develop long COVID. But I will not say that their experience with COVID was easy. And we have talked about how like, we barely even talk about their experience of COVID. Because my experience was so intense, but you know, they were acutely sick for at least 10 days, they were experiencing symptoms after that for at least, you know, a month and a half, they had a COVID toe that hung around for like even longer, you know, there was a lot going on there. And you know, of course, my fear was just sending them home with no one to care for them completely alone. 

And of course, that's you know, that's the experience you had. And that's the experience so many people had, and it's just terrible that that was the case. And that also that has somewhat become the norm, right, at least in the US. I mean, I know Ashish Jha, who is kind of our COVID czar right now, was saying recently in the press that basically our flu seasons, you know, our winter surges are just going to last much longer, and delayed care is just going to become the norm. And it's so frustrating, because the idea that we're accepting that as the norm is terrible, because obviously that existed to some degree even before the pandemic, and so many people have suffered as a result, and a lot of us have really intense trauma around it. 

I mean, I find myself like, you know, even during this season right now, I mean, LA recently had only the lowest number of hospital beds available for the entire pandemic. So it was like a record low, because of the surge in flu, RSV, and COVID. It's like, you know, I'm walking around, like, Oh, God, what if - I don't want to get in like a car crash, because there's no hospital beds, you know, it's like this bizarre way of living your life. So it's very, it's very frightening. And I also want to say just, I'm so sorry that you had to go through that in such isolation. I know you weren't actually alone, but I didn't have to experience that level of aloneness. And I imagined that it was really, really terrifying. 

Jackie Baxter  24:14  
Yeah, and I think like you say, it's not just me. I mean, there's you know, 1000s of people out there who had comparable or possibly much, much worse experiences of having to stay at home. And it's a huge Thing on top of everything else, I think - that's certainly what I noticed. Yeah, I guess it comes back to what you were saying earlier about, everybody's experience being different and not being able to understand someone else's experience because you've not lived it. So it was something that someone said to me, actually, it was something along the lines of just because someone else is having a worse experience doesn't mean that you're not having a terrible one yourself. And I think that probably works both ways. 

Fiona Lowenstein  25:36  
Absolutely. 

Jackie Baxter  25:38  
I would love to talk a bit more about body politic, I had actually not realized that it already existed in some form. That's amazing. I had no idea about that. But yeah, I'd love to chat a bit more about how - I dunno - how it got sort of altered. Or augmented, or I'm not sure what the right word for that would be to turn it into kind of what it is now.

Fiona Lowenstein  26:01  
Yeah, so I think it's had many, many lives, body politic. So at the time that Sabrina and I became sick, we were both people who were involved with running the first iteration of it, which was, you know, an event series and a blog, and it had a social media accounts and that sort of thing. It definitely didn't have, you know, the level of social media following it has right now. But it had, it was pretty popular in New York City. So we had, you know, we probably had like 4000 followers on Instagram or something like that. So we had a nice, a nice little infrastructure that was very helpful, and I think, was helpful, both in the sense of like, having some sort of workflows that we could use to set up a support group. But the thing that I think was even more helpful was that we had a shared understanding of our approach to health, if that makes sense, right? 

Like, because we had been already programming events in the health space and the wellness space. We didn't have to have conversations about like, how do you feel about unsolicited medical advice? You know, or like, how do you feel about the diet industry and fat phobia? You know, like, we knew how we already felt about these things. And so, in setting up the support group, one of the first things that we ended up doing was creating an onboarding guide that included a list of basically like norms and guidelines. And that guide, of course, has been expanded, like hugely since those early days. But a lot of those norms and guidelines were based on the sorts of norms and guidelines that we tried to have that body politic events prior to the pandemic. 

So, you know, things about like, please don't assume something about someone else's health based on the way that you know, they look or sound or you know, are talking about themselves, right? Things like no unsolicited advice, things like refraining from you know, promoting kind of diet-centric weight loss type plans, unless someone is like asking for something very specific for a medical reason. But logistically, basically, what happened as well was that we were not at all prepared for the level of demand. We had this Google form. And when I woke up, the day after the Op Ed was published, and I saw the Google Form, populating in real time, like on that Excel spreadsheet, like a new name popping up, and literally every second, and there were already 2000 people, I, you know, texted the people that were involved in body politic, it was only like, three or four people also because the pandemic was happening. 

So a bunch of people were, you know, traveling back to be with their families, or were sick themselves or something like that. And so I think it was like three of us that kind of just started bringing all of these people into the group. Originally, we brought them into an Instagram chat. But Instagram chats are capped at like 40 people or something like that. So we pretty much immediately had to scrap that. And we moved to WhatsApp. I think we were only on WhatsApp for maybe 24 hours because WhatsApp chats also have a cap at a certain - I don't know, maybe it's 100 something, couple hundred people. 

So I quickly started just texting everyone I knew being like, what is a social media platform, that's not Facebook, because it didn't want to use Facebook, because I'm not particularly well versed in Facebook, I just haven't used Facebook a ton as an adult. And I also just felt like I knew Facebook had like some data privacy issues. I knew that I wasn't exactly sure how to like create a private group versus a public group. And in the WhatsApp chat, people were already complaining that it was really hard to track different conversation threads, because they were talking there was a new chat coming in every single second. I'm not even like joking. On that first day it was like ping, ping, ping ping. People couldn't even really reply to each other because it was just one solid thread. 

So I started researching, and I realized that Slack wouldn't be a good option. Now the irony here is that Slack is a platform that is most commonly used in really like corporate workspaces. I, at the time, was a freelance writer. I like made a lot of my income like dog Walking, tutoring and like teaching fitness classes, definitely not an expert on Slack like, I think I've used it like once in my publishing job, like when I worked a nine to five for a year out of college, but um, so I was like texting my friends who do work in corporate America and be like, What is this app? And how do I use it? And one of my friends sent me like the slack onboarding guide from her company. And we were using that to like, figure out how to set it up. 

But basically, we got everyone into Slack and Slack ended up being kind of the perfect application, because Slack has a bunch of different channels that you can divide based on topics. And so we were setting up channel topics based on regions, you know, and based on, you know, now I don't know how many different channels we had at the time. Now, there are channels for every system of the body. There are channels for different geographic regions, there are channels for different demographic groups, everything from you know, BiPOC, LGBTQ+ to parents or healthcare workers or things like that. And then the best part, of course, is that it's private. And the security around it is a little bit better, I think, than Facebook. Although I of course, I understand there's a lot of really successful groups on Facebook that have been super helpful to people as well. So don't want to knock those groups at all. 

But yeah, so it was a bit of a free for all at the beginning. Again, we created this onboarding guide. And we were, you know, trying to make people read it so that at the very least people would like treat each other in the right ways. But pretty early on, I would say within like the first week and a half, we realized that there were some natural leaders showing up in the community. And there were three people in particular who we noticed were just kind of leading conversations, helping to guide people to the right places. And those three people were Gina Aasif, Lauren Nichols, and Angela Vasquez. And if those names sound familiar, it's probably because all three of those people are like major leaders in the long COVID movement. They were all at one point board members for body politic. Gina Aasif is one of the founding members of the patient led research collaborative. Angela Vasquez is the current president of body politic. And Lauren Nichols was like probably the first person to actually be talking about long COVID on social media. Because she has like a huge Instagram platform and has done a lot of work on this. 

So we basically messaged these people that we'd never met before. And we're like, hey, the three of you, have been very helpful whether or not you know it, would you be interested in potentially officially helping us moderate this group in some capacity? Could we do some kind of like zoom call with you? And so Sabrina and I, and Lida Rubanava, who was another member of the body politic team at the time, who kind of got sucked into this world, because she was helping run body politic events before the pandemic, met with these three people. And the amazing thing was like how much we had in common, how much we liked each other, how much we hit it off on like a personal level and had, I think, like, also a shared kind of political framework. And of course, those shared personal experiences, right of getting sick. And Gina was in DC, and Ang she was in LA, and Lauren was in Boston. So we were kind of spread out across the country. 

And so we just started figuring stuff out. Right, we started talking about what new channels needed to be made and how we wanted to deal with it when people were requesting channels. And maybe we should have a channel request Google form where people can submit channel requests. And I guess we should call ourselves moderators. And maybe we should recruit more moderators. And so that is the kind of very initial framework that gave way to the infrastructure that exists today and has existed for a long time, and I can't speak as well to the infrastructure that exists today, because I haven't been, you know, integrally involved in the leadership since summer 2021. But, you know, there was basically a board and there's an admin team, and there's a group of moderators, and you know, it's mostly volunteer run, because unfortunately, body politic still has not received really any institutional funding throughout this, this pandemic. But, you know, that's kind of the way it's happened. 

And of course, over time, it really grew massively. I mean, I don't know probably way more than this. Last time I checked, which was, like, you know, was like a year and a half ago, like 40,000 people had signed up at one point or another to join the group. I think there's something like 14,000 users actually in the group currently, you know, it's still a very active group. And unfortunately, people still continue to join, right, because we continue to have new waves of long haulers. 

But then also at a certain point, an advocacy arm kind of grew out of the support group. And I should also mention that in addition to that advocacy arm there were other organizations that were born from the support group and one is long COVID SOS in the UK that formed in the body politic support group, people connected there and realized that, you know, they were all based in a similar region and started basically doing work together, set up their own Whatsapp group. And obviously, they've done a lot of amazing work. 

And then the other group that formed was the patient led research collaborative, they started a channel called data nerds, which started talking about polling the members of the group and saying, What if we could get some sort of hard data on what people are experiencing. And they of course, ran kind of the first survey on what we now call long COVID, in, I think, May of 2020. And now they're their own organization. They are funded, they work with, you know, lots of different academic institutions, as well as obviously, all of the kind of governmental bodies that body politic and other groups work with. 

But yeah, at a certain point, it became clear that the insights that were coming in from the support group, were really important and needed to be shared with, you know, groups like the CDC, and the World Health Organization, and the White House and that sort of thing. And so, that kind of branch of advocacy started to happen too at a certain point, probably in the, I don't know, summer of 2020, into the Fall.

Jackie Baxter  36:15  
And it's amazing how it started out. And it's just kind of exploded into all of these different, obviously, it's a lifeline to a lot of people in terms of support, but in terms of the things that it's kind of sprouted as well  is amazing. I really loved what you said about bringing together people, you know, people that you would never have met otherwise, and that you have nothing in common with, except for the fact that you have long COVID. And I've you know, I've met some really amazing people through this that I think well actually, I would consider you a good friend now, despite the fact that we have nothing in common except for these ridiculous symptoms. So it's, I suppose it's a silver lining maybe?

Fiona Lowenstein  37:01  
Absolutely. I mean, I always describe like entering the body politic support group, especially in that first year, as it felt like being in a very like empty room that's dark and quiet, right. I mean, that's literally what I was in, I was in, I was isolated in my bedroom, because also we were told, you know, even though my partner we thought had COVID, we were still advised isolate from each other. For two weeks, I was isolated in my room, you know, I was having light sensitivity, sound sensitivity. So I was literally in a dark and silent room. But it felt like entering the support group was like entering like a huge ballroom like full of people talking about exactly what you wanted to talk about, you know, and those friendships are very real, they absolutely sustained me through the darkest and most difficult times emotionally, of my long COVID experience, which was probably kind of the winter of 2020 into 2021. Having people who really understood what I was going through, and those friendships became very, very, very deep. 

And, you know, now that I live where I live, and I live in a place that's warm and where it's easier to gather outside, it's been really special because I've been able to actually make some of these friendships more in-person friendships, you know. And so a lot of the people who kind of were collaborators on the book or were contributors to the book are people who as well I met in the body politic support group and I actually, just last weekend had brunch on my on my balcony with Pato Hibbert and Carla Monterosa, who are both contributors to the book and, and friends of mine and like, I've hung out with Pato several times in person and it just it's, it's feel so special. And that's just a couple of people you know, Lisa, Hannah, Lauren, Allison, Angela, all of these people are I consider to be like very close friends. 

And some of them I still have not ever met in person. I think Hannah Davis and I are gonna meet in person for the first time, this spring, which like feels bizarre, because it feels like we're, we know each other very well. But I that feels so special, especially given that it's been really hard and a lot of us have, you know, had to kind of distance ourselves from friends or family who don't fully understand or have or feel like the world has moved on a little bit without us. So I think that has definitely been a silver lining for me. I feel very grateful for all of the people that I've met, and absolutely a lot of them are people I don't think I would have connected with otherwise. 

And it's also been special to see people's journeys like I think, I feel like Chimere L Smith is another contributor to the book who I have gotten really close with and she was also in the support group kind of from day one. And I think about like her posts like she was a very active user and like, I almost feel like she was like a support group celebrity who I was like, watching do her thing. And then I remember so distinctly also the day that she was like, I'm ready to go public with this story, you know, and just seeing that trajectory as well. And that journey, I've seen a lot of people go through that journey of kind of like privately grieving, privately, you know, figuring out what's going on, and then making the decision to you know, pursue advocacy and pursue like publicly sharing their story, which obviously, is not something that everyone has to do. 

But yeah, and now I feel like you know, I'm very much like, I'm like on her cheerleading squad like, yes, Chimere on MSNBC again, let's go like Chimere testified in front of Congress. Yes, you know, and it's like, now she's not just the support group celebrity. She's the long COVID movement celebrity that you know, she was definitely always meant to be. But um, but yeah, it's, it's been cool forming those relationships, for sure.

Jackie Baxter  40:53  
Yeah, definitely. Yeah. Really, really special, I think. Yeah. You've just brought it up, which is great, because it was the next thing on my list. The new book. So yeah, I'd love to talk a bit about, I don't know, how did it come about? Because the list of contributors is, like you say, kind of like, long COVID Celebrities pretty much -which is a terrible word. 

Fiona Lowenstein  41:17  
yeah, I shouldn't have used that word. Like, I'm using that word in a very tongue in cheek way, obviously. Yeah, so the book, the book came about, actually, because a publisher, I had a couple of different people in the book world approached me about writing a book about my experience in, you know, 2020, and 2021, I honestly just didn't have the bandwidth to even really consider that, until the summer of 2021. And then, an editor at The Experiment, the publisher that published the book, happened to come to me at that time, and asked if I wanted to write a guide book on long COVID. And I talked to her about a lot of different things. And one of the things I talked to her about was that, in the first phase of body politic, we used to talk a lot about non prescriptive wellness and how we wanted to share information with people on a topic, like, I'll give you an example, we did an event on sleep hygiene, right, like different ways to, you know, get a better night's sleep. 

But that event was never going to be here's how to get a good night's sleep. And here's the things you must do to get a good night's sleep, it was more like, here's a sleep therapist with some ideas of their own. Here's a you know, cannabis and CBD expert with some ideas. Here's a yoga specialist with some ideas, right - a kind of choose your own adventure, we're going to present you with a bunch of different ideas, and you take what you want from it. And so that was one of the things that I spoke to her about was I said, I'm not super comfortable with like highly prescriptive health advice books, especially for an illness that is new, and that there's not a ton known about. And I really liked her response, it felt like she really understood that and understood that a book like this would have to kind of present a lot of different options and let people take what they wanted from it. 

And the other thing I shared with her was that I didn't think that a book like this should be written by one person. And I certainly didn't think that if it was gonna be written by one person that that one person should be me, because my experience with long COVID, I think has been milder than many people's the symptoms I deal with are just on the mild end of the spectrum. And also, as I mentioned before, like, I'm white, I am an economically privileged person, I did not have serious preexisting conditions before I developed long COVID. So there's a lot of ways in which my experience is privileged and is different from other peoples. And so I didn't want to kind of write a book solely from my own experience, because I felt like it would exclude a lot of people. 

So I said, what if we did a book that had kind of a different chapter, focusing on a different topic written by someone who really is an expert in that topic, based on their lived experience, and she was really open to that as well. So I want to give a lot of credit as well to Olivia Pollusa, who was the editor at The Experiment, because she, I think, really understood the vision for this book and like very much let us be the experts and let us kind of lead. 

So from there, I just tried to think about Yeah, you know, if, if I was going to, you know, want advice on navigating biased healthcare systems, like who is the person in the long COVID community that I feel like I would really want to get that advice from or I would recommend if I had a friend that needed, you know, advice on how to navigate medical racism that I would say you need to speak to so and so. And I was like, it's Carla Monterosa. Like she went through it. She's spoken about it, like she has the framework to really explain it. So that was kind of the way I thought about it. 

And so everyone, for the most part, the vast majority of people in the book are people with lived experience of long COVID or another related condition or disease. So for example, Terry Wilder, Alison Sbrana, and JD Davids are all people with myalgic encephalomyelitis who are contributors and then Naina Khanna who over a chapter with JD is person living with HIV. And so we wanted to include those perspectives because there's obviously a lot of, you know, shared experiences and knowledge that people have been living with these illnesses for longer can provide. 

And then we do have two people involved in the book who do not personally have lived experiences with the disease. But I think that they're kind of the providers and researchers that we're all very much looking to for answers and have also proven themselves to be extremely like good at collaborating with patients and letting patients kind of take the lead. And that's Dr. David Putrino and Dr. Akiko Iwasaki. And so Akiko Iwasaki wrote the afterword kind of just on what's next for long COVID research and what this book meant to her. And then David Putrino co wrote a chapter with Donna Kim Murphy who is a provider herself in addition to being a long COVID patient, and Rachael Robles, who is a member of patient led research and body politic and is also a long hauler. So their chapter deals with how to get diagnosed, basically how to access a diagnosis, and it felt important to have the perspectives of medical providers in that chapter because you want that kind of insider outsider merging of information there. 

So I will also say if anyone's listening to this and has the book, and it's kind of wondering, you know where to go to first, if you're looking for like, the most tangible advice, I think that their chapter is a very long one with a lot of information in it. It's like one of the chapters that has like, the most detailed kind of, you know, charts and tables of tests you can ask people to run and ways to find providers and that kind of thing. So I try to highlight it. But obviously, every chapter is amazing. And I think every chapter provides something different. 

And that's the other thing is I wanted to mimic the purpose of a support group, we talk about the book as a little bit of like a support group in book form. The support group did so many different things, right. It did provide people with like, recommendations for providers and, you know, tests you can ask your provider to run and also really helpful information on you know, how to navigate financial and unemployment issues. And it also provided people with emotional support. And I feel that those two things are equally important, and that people are not always looking for both - some people are looking for one, some people are looking for the other. Some people are looking for one on one day and the other on another day, and I wanted the book to do both. So I think some of the chapters lean more heavily into one versus the other. But it's an eclectic book. And that's because we wanted everyone to be able to find something in there to relate to or something that they can get out of it. 

And I also asked to Lisa McCorkel from the patient led research collaborative to write a chapter on how to basically person understand research studies, because the nature of a book, you know, I'm a journalist and a writer. So - I used to work in the book industry, but this is my first book - I tend to write articles that are very much about kind of the thing that happened yesterday or last week or last month. You know, a book is something that exists for a long time and research is emerging. And so of course, we couldn't touch on, you know what happened last week in a book that was you know, the production schedule for it goes on for a year or so. 

And so instead of kind of focusing on the latest study that came out, what felt more important to me was to be able to give patients the tools to analyze research themselves, especially given that the media is not always the best at doing that right? They will sometimes focus on studies that they shouldn't, or they will misinterpret certain things. And also, because we know that it's been really helpful for some patients to be able to bring research studies to their providers, or even to their employer or their family member, or to be able to look through something themselves and say, Oh, this is interesting. This is showing that, you know, Paxlovid reduces the risk of, you know, long COVID in a significant number of patients. I know I want to try that medication if I get reinfected. So those are just some examples of chapters to get a sense of how we were thinking about it when we put it together. 

And I guess the last thing I'll say about it, and this is a very long answer, but the last thing I'll say about it is that because everyone working on it, for the most part, was chronically ill. I think the other thing that was special about it, and difficult, was that we had to create kind of our own workflows that would work given that people were having medical emergencies and also just having flares or bad days and it was really moving to see how people like stepped up for each other in certain instances. And it was also just - it made me feel passionate that chronically ill people should really be put in charge of designing workflows for chronically ill people because I feel like we really succeeded at this project. Listen, it wasn't easy. And there were absolutely times that I think we all felt like we were like, failing each other. We're like, Oh, I'm so sorry, I'm late with this. And I'm sorry, I'm sorry, you know, but, but it got done. And like, I don't think that anyone felt that, you know, they had to push themselves past their physical limits to do that. 

And it just made me feel like, like, we're so creative. And we can come up with such like, interesting and smart ways to to accomplish things. And that's something that a lot of these groups have done - body politic, and patient led research, you know, asynchronous google doc editing, and someone's up at 3am, because they can't sleep. And so they're doing something and then someone, you know, takes a week to look at it. But then they work really quickly, because they're like, having an adrenaline rush. And, you know, whatever it is, like, we managed to figure it out, we set deadlines far in advance, we were really communicative with each other. And we just also like had a lot of compassion when things didn't go exactly as planned. And so I think that just gave me a lot of - Yeah, gave me a lot of hope. And it also made me really passionate about like thinking about workplaces, and how workflows can be better designed, if more trust were put into, you know, people with chronic illnesses actually designing their own workflows.

Jackie Baxter  51:14  
Yeah, it's like normalizing people working in different ways, isn't it and at different rates, and, you know, not having to reply to an email 30 seconds after it arrived in your inbox? Because, you know, that shouldn't be an expectation of anybody, whether they're well or not. And it's yeah, it's all this stuff that I'm noticing in myself as well from, you know, the Before Days, where I'm thinking, Oh, well, I wouldn't think anything of replying to, you know, an email at 11 o'clock at night, because, you know, that's just what you do. That's why you have a smartphone. 

But yeah, and it sounds like you've created something incredible. I mean, I think, yeah, one of the best things about a lot of support groups is picking up ideas from different people. So someone's tried something. So you think, oh, okay, I'll look into that. And it might not work for you. But it will work for somebody else. And it's this, it's like you described it as pick your own adventure. And it really is, isn't it? It's amazing.

Fiona Lowenstein  52:09  
Yeah, yeah, I just wanted it to feel - I think a lot of people are looking for that quick fix when they first get sick. And my hope is that this book, like very gently explains that that's not the way to look for care. And that it's okay if that quick fix doesn't come. And it's okay to try different things. And there's also a lot of caveats in the book, that it's okay to not go to a million medical appointments, because it might cause you to have a, you know, PEM crash from doing that, right. It's okay to not appeal your you know, social security disability insurance denial immediately, because maybe you're so exhausted and demoralized that you don't want to do it again, you know,. Again, I just wanted it to kind of be that friend, for someone who doesn't have that friend, or, you know, doesn't feel comfortable going into those support groups, or just wants to take a little break from the computer and you know, read something instead.

Jackie Baxter  53:07  
Yeah, totally. Well, I am fully intending to get myself a copy. And I'm sure everybody else is, is loving it as well.

Fiona Lowenstein  53:15  
I don't know when this episode is going to air but the book is out of stock in some places right now. But there was a second printing order, then it is going to be back in stock. I've been told in mid February in the places that it's out of stock. So you know, just in case, there's anyone listening who's like, I can't get it right now. And I want to. 

And we did set up a long COVID Survival Guide Book exchange so that people can gift the book to each other, just because we feel like this is a book that everyone should have access to. And obviously, we're trying to get it into libraries, but that can be process. And not everyone has a library card. So you know if there's anyone listening who either really wants a copy of the book, but doesn't feel like they can afford to buy one right now, or somebody listening who can afford to purchase a second copy for somebody else. I know I sent you the link to that. But um, we have a Google form where you can sign up to participate in that. It's, you know, a little bit of a slow process because we have to match people and hear back from them and that sort of thing. But it is something we have a little tiny team working on that over the next couple of months.

Jackie Baxter  54:15  
Yeah that's such a lovely idea. I will make sure that all of those links go into the show notes. So if anybody - well everybody who's listened to this is now going to go off and buy a copy of the book. Yeah, I'll make sure that all of those links go in. 

So yeah, well, thank you so much for chatting with me today. It's been an absolute pleasure hearing about everything you've achieved, well on top of being ill, and there's so much useful stuff in there for people as well. So thank you so much.

Fiona Lowenstein  54:42  
Thank you - I really appreciate you having me on and thanks for creating this space and I hope that you too have like found that community and and everything and thank you for all the kind words about my work - I definitely did not do any of this alone. So  credit is not is not mine alone to take at all

Jackie Baxter  55:04  
it's a teamwork isn't it

Fiona Lowenstein  55:05  
yes the ultimate group project is what I've been calling it

Transcribed by https://otter.ai