Subscribe Now
The CDC estimates that as of 2023, about one in five people who have had COVID still have symptoms more than three months after their initial infection, a phenomenon known as Long COVID, and we know anecdotally, that many individuals experience symptoms for far longer – or long-haulers, as they are commonly called. My guest in this episode of On Health, Fiona Lowenstein, was one of the first of those so-called “long haulers.”
Fiona is an award-winning independent journalist, producer, and speaker, covering health justice, wellness culture, LGBTQ+ issues and more. Their work has appeared in The New York Times, Teen Vogue, WIRED, Vox, The Guardian, and Business Insider, among other publications.
During the pandemic, Fiona became an early and prominent voice in the long COVID patient movement. After being hospitalized for COVID in mid-March 2020, Fiona wrote about their experience in an op-ed in the New York Times. As a previously generally healthy 26-year-old, they wanted other millennials to understand that young people weren’t invulnerable to developing a bad case of COVID. Fiona, who had started a queer feminist wellness collective called Body Politic a couple years prior, also used that platform to start an online support group for people recovering from the virus. A month later, they wrote a follow-up piece about the fact that many of these early COVID survivors were having lingering symptoms – even for mild cases – for much longer than two weeks. It was one of the very first reported pieces of the pandemic about what would come to be known as long COVID.
Ultimately Body Politic’s patient support group would grow to serve thousands of COVID patients across the globe and play a critical role in raising awareness about long COVID and pushing for research into the condition.
Fiona has since served as an expert on long COVID, peer-to-peer communities, and COVID-19 patient issues for the CDC, World Health Organization, and the POTUS COVID-19 Equity Task Force, and has produced a series of work meant to help journalists navigate reporting on novel and chronic illnesses. They are also the editor of the The Long COVID Survival Guide, an anthology published this past fall that features stories and advice from 20 COVID long-haulers and experts – described as “a support group in book form.”
Of note, long COVID may be especially relevant to the On Health listener community. It is especially common and hard-hitting in women, and particularly women in their 50s, just when we’re also experiencing menopausal symptoms – some of which overlap with long-COVID symptoms. And it also affects young adults – which many of you are, or are moms, too: As many as a third of all college students with a history of COVID may be experiencing long COVID, according to one study, as are numerous adults in their 20s to 40s.
We’re going to dive into all things long COVID from denial of the experiences of those suffering with it, the need for more inclusive research, what we need to learn from the lived experiences of those with long COVID, to the promising potential treatments and self-care options that have come from the collective knowing of patient-led research with long COVID, like Fiona, who have necessarily and powerfully brought their voices together to shift and shape the long COVID narrative and advocate for better research and access to the respectful medical care for this emerging new condition so many of us are living with either personally or in relationship to someone we love, deserve.
Fiona's story sheds light on the often-overlooked experiences of long haulers, highlights the need for greater awareness and understanding of the condition, and provides hope that healing can happen over time.
In this episode we discuss:
- Fiona's experience as part of the first wave of people who got sick with COVID in NYC and how little the medical community knew how to help them
- The major gap between what COVID long-haulers are experiencing and medical testing
- Medical gaslighting, racism, homophobia, and how these systemic biases affect many people's abilities to get help
- The similarities between long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and the realities of post-viral illnesses
- The effects of long COVID from mental health challenges, neurological issues, ME/CFS, POTS, and more
- How Fiona started their online peer support group and how this group helps other COVID long-haulers
- What Fiona wishes people who don’t have long COVID knew about living with the illness and the change they wish to see in the medical community
Thank you for taking the time to tune in to your body, yourself, and this podcast! Please share the love by sending this to someone in your life who could benefit from the kinds of things we talk about in this space. Make sure to follow me on Instagram @dr.avivaromm to avivaromm.com to join the conversation. Follow Fiona at @fi_lowenstein, check out the Mutual Aid Book Exchange, grab a copy of her book and learn more about The Body Politic at fionalowenstein.com.
This conversation has been edited for clarity and length.
Aviva: Fiona, thank you so much for joining me. Welcome.
Fiona: Thank you for having me. That was such a wonderful introduction. I really appreciate it.
Aviva: Oh, thank you so much. We really dive deep into the work of people that we're having on the show. We being Maya Dusenberry, who I'm just amazed to now have on my editorial team helping me with research and putting podcast episodes together and we're just super excited about what you have to share. It's so relevant and so important. And I would love to just start from the beginning.
Can you tell me about your experience having COVID? I mean, you had it basically in the first month of the pandemic. It must have been, I can only imagine, overwhelming, scary, all the things, but I want to hear what you have to say about it.
Fiona: Yeah, it was a very surprising experience and I always sort of try and caution as well when I tell this story that I got sick at the first moment that we were aware of community spread in New York City. I got sick on March 13th, 2020. But we now know that there were patients in the United States who got sick before that. And I always try to mention those people because if you think that those of us who got sick in March and April had a tough time, imagine the people who got sick in February and didn't have any of the diagnostic tests or really any knowledge to diagnose themselves.
At the time that I got sick their testing was very hard to come by. You could pretty much only get tested if you were hospitalized or if you had traveled to one of a couple of countries. And I believe pretty certain that I was infected by a very, very close friend who happened to be working with me on the first iteration of Body Politic, which was a queer feminist wellness collective and event series in New York City. She came over to my house, this was before anyone was being told to stay home.
We were actually meeting to talk about, okay, this COVID thing is happening. It might come to the us. I think by that point there was one or two cases confirmed of community spread in the US and so we were talking about, okay, what should we do in this queer feminist wellness collective to support people who are going to be vulnerable? We were talking about setting up affinity groups for cancer patients who might be immunocompromised or I think we were also talking about how we support the Asian American and Pacific Islander community right now because that violence and harassment had actually already started. But this just goes to show how we at the time, two 26-year olds, did not at all think that we were at risk for this. We really saw ourselves as allies showing up for other people and we just didn't grasp, I think, the gravity of it in general, of course, at that point.
And so I got sick. I didn't assume it was COVID, but it did seem pretty quickly to progress. I developed shortness of breath and that was at the time really the only symptom that was on the CDC symptom list. That was kind of the only symptom that was leading providers to hospitalize people. The hospitals were already pretty overwhelmed at the time that I went, but not as overwhelmed as they would get even a couple weeks later. And so the person who infected me was also quite sick – my good friend Sabrina – but she didn't have severe shortness of breath. So whereas I was able to get care and get hospitalized, she had to care for herself. And that is a really common experience for COVID long haulers, especially people who got sick in New York City during this first wave. We call ourselves first wavers.
A lot of people had to care for themselves and a lot of these people were young and lived alone or lived with roommates and didn't have family close by. So, in a weird way, being hospitalized, even though it was so scary and the hospital was the last place on earth that you wanted to be at that point, it ended up being a privilege because I got access to supplemental oxygen, whereas other people were having to navigate this low level state of hypoxia for weeks or months at a time. And I also just got to talk to doctors and I got to talk to healthcare staff and that opened us up as well to how little they knew. Right.
I talked to healthcare providers who told me that they couldn't access tests even though they knew they'd been exposed multiple times. I talked to providers who were interviewing me about my symptoms and learning about the disease from me. I told one nurse that I was having gastrointestinal symptoms and she said, “Well, that's not a part of this disease.” And I said, “Well, my partner's having them too, and my friend's having them too.” And she was like, “Hmm.” Of course it took, honestly, probably months for the CDC to add that to their symptom list.
And then I was discharged a couple of days later. I was never put on a ventilator, I just received supplemental oxygen. I was very eager to leave the hospital. They were eager to have me leave the hospital. They were telling me, this is really not where you want to be right now. And it was scary. I mean, it was getting more crowded. I was seeing people be brought in and I went home and I just felt so relieved to be home. I mean, when I had left, I had thought, “Am I going to see this place again? What is this? Is this as serious as they're saying on the news?”
But when I got home, my symptoms started to morph and I started to develop all of these other symptoms that I hadn't had before. I'd really just had fever and shortness of breath, and I started to develop worse GI symptoms, more kind of cold and flu symptoms, hives and rashes on my arms, I was really having a lot of trouble eating anything at all, having very serious fatigue, and at the end of the day started to have light sensitivity and pretty terrible headaches, which I think now were migraines. And so the one thing through all of this that kind of I think kept me going and helped me feel less alone because I was also quarantined to my bedroom at this point, was having this person, this close friend who had infected me, who was going through many of the same things. She was also not getting better; her symptoms were also progressing and being able to just text and FaceTime and talk to her on the phone and validate each other's symptoms and kind of sleuth for information together – that was such a privilege in that moment and we felt like we needed to give that to more people.
Aviva: Was there any point at which you were having new symptoms weeks or months later that you went back to a medical provider and said, “Hey, I'm not sure what this is or something's happening here,” or did you just figure it out on your own at this point that this was something more to do with what you had just had?
Fiona: I had a wonderful primary care provider at the time that I got sick and I owe a lot to her. She's the reason that I went to the emergency room. She told my partner, you have to go if the shortness of breath is getting worse. And I was in touch with her in the weeks after I was discharged, but honestly, she was not able to answer these questions. I would reach out to her and say, “Okay, I'm still having really bad stomach issues and I basically can't eat anything other than small amounts of rice. Do we think this is food poisoning from the hospital or do we think this is related to COVID?” And she would say, ”Listen, it's not unusual for a virus to upset your stomach, but I just don't know. We just don't have the research.” So we were in touch and I think she did everything she could, but she just didn't know.
And then also being in New York City, we were under siege really from this virus for months. It wasn't until May or June that it started to feel like you could actually get an appointment in person with a provider. And they didn't know. They didn't have answers for any of us. So for me especially also, because it became clear after the summer of 2020 that the virus wasn't going away and that we were going to have another big surge, my fear of reinfection began to kind of trump my desire to get in-person care, especially after I started hearing – I was coordinating via telehealth with doctors and talking to patients who were going and seeing providers and realizing there isn't really that much that they can do for us at this point. So I would say that my first in-person medical appointment wasn't until after I'd been vaccinated.
And that was kind of, all right, we're going to do it all. We're going to do the chest x-rays again. We're going to do the blood work again and see if there's anything abnormal showing up on these scans. And I will say that I think the only thing at that point in time that showed up as abnormal was that I had a slightly low white blood cell count but otherwise everything was showing up normal. And I mentioned that because that's a really common experience for COVID long haulers. A lot of times folks kind of get the average set of blood tests or whatever it is, and doctors say, well, looks good to me. I can't see any visible organ damage. But of course that doesn't always mean that there's nothing going on underneath the surface.
Aviva: I was interviewing Megan O'Rourke recently. She was on the podcast. You’re smiling – you know Meghan’s work.
Fiona: Yeah, we're friends.
Aviva: Oh, okay. I love her. She's amazing. And she uses an expression that I think is such a succinct and effective way of saying what I say to my patients who have autoimmune diseases, chronic fatigue, the symptoms that previously were dismissed that I think since long COVID have become more of a recognized phenomenon have had a new lens, a new light shining on what Megan beautifully calls “living at the edge of medical knowledge.” And so many of these conditions where people are living at the edge of medical knowledge. And certainly COVID is the shining example of that. People have symptoms, clearly there's something going on, but medical science has not yet identified what to look for or what to identify, or maybe we don't even have the test yet for that.
And I'm wondering, in your experience with becoming a spokesperson about long COVID, were there points along the way where you started to encounter people who were having these very disparate, sometimes weird, vague symptoms who were told that they were actually fine or even, and I'm going to use this term, medical gaslighting, gaslighted in any way and maybe suggested that they were not sick and that they had maybe psychological issues or other things going on? I see that all the time, of course with women with autoimmune conditions, chronic fatigue and other things.
Fiona: Absolutely. And I want to note as well that this started from the very beginning at the time that I was hospitalized for shortness of breath, I remember a couple of weeks later reading the story of a Black woman around my age in Brooklyn who had also called for help multiple times having shortness of breath and was told it was just anxiety and that woman passed away. She did not get care.
And so that medical gaslighting has happened at every stage of this illness and who you are and where and when you're seeking care has a lot to do with whether or not you’re believed, how overwhelmed healthcare workers are, whether or not they're having to triage and whether you're white – I'm white, I'm thin. I wore my Yale sweatshirt to the ER because I was like, I know this is going to be totally crowded and wild and this is the only sense of power I feel like I have. I don't have wealthy connected parents, but maybe if I wear this, someone will think I'm important. I was playing the game, which is a horrible game.
But especially once people started to develop long COVID symptoms, I think there were a couple of factors that contributed to people being psychologized by medical doctors. And the first was just lack of clinician education. So as you mentioned, as Meghan O’Rourke mentioned, long COVID is not necessarily brand new. Of course, SARS COV-2 is new, but having long-term symptoms following a viral infection is not new. At the time when I was not seeing doctors, I was connecting a lot with people with Myalgic Encephalomyelitis (Chronic Fatigue Syndrome), sometimes abbreviated as ME/CFS, who were teaching me how to take care of myself. They taught me about rest and pacing. So there's a huge kind of precedent for these types of illnesses, but unfortunately it's not taught at most medical schools. And so I have friends that are in medical school and became really interested in what I was going through because they were like, we are not learning about this. So I think that that's kind of one part of it.
The other part of it is that especially in that first year and a half, two years, there was a huge emphasis put on COVID diagnostic tests, PCR tests as well as antibody tests. And so once again, I was very unique in the fact that I was hospitalized and thus tested. My partner brought me to the hospital. They were also exhibiting symptoms, but because they didn't have that severe shortness of breath, I mean they had a fever of over 102, but they didn't have that severe shortness of breath. So it was just kind of like, go home and you're not getting tested. Same thing for the person who infected me.
That meant that the person who infected me, when she tried to get care for long COVID down the road, a lot of her doctors said, well, how do we know that you had COVID in the first place? And so that came up again and again and again, especially for people who got sick in that first wave and couldn't access testing – there was no proof of infection. And then a lot of those people also were given antibody tests and did not have antibodies for COVID. And this is an interesting thing that researchers are looking into. Some people believe that people with long COVID are less likely to seroconvert for antibodies. Also Hannah Davis, who is a long COVID advocate at the patient-led research collaborative has also pointed out that a lot of those antibody tests were initially tested on older male hospitalized patients with COVID, so perhaps they are not the best at identifying whether or not a largely female and often young cohort had. So that came up again and again.
But once again, it's so often these stories come from Black women. They so often come from trans people, and they also often come from middle-aged, aging or elderly people. You mentioned menopause, and I have heard a lot of patients tell me that they're going to the doctor with symptoms of brain fog or fatigue and being told, “Well, that's just the natural process of aging.” And so unfortunately, none of this is new. Medical bias is not new; medical racism and sexism and homophobia has existed for a long time. But I think a lot of this was exacerbated by the sheer stress that healthcare workers were facing and how new this seemed to them simply because of the lack of clinical education on it.
Aviva: Everything you're saying with COVID, long COVID diagnosis, who gets what based on their demographics, their identity is not just sort of part of the history of medicine, but it's like the foundations of medicine almost. And long COVID is shining a light on so many of these disparities. Maybe that's the one small good thing that's starting to come out of it a little bit.
So, you're going through all this clearly, you are incredibly thoughtful and articulate. At what point did you say, “Okay, I've got to write a New York Times article.” Did you set out to write an article for the Times, just set out to write an article? And also where in the chronology of your light bulbs going off that you have to do something? Did you also decide that you needed to form a support group?
Fiona: Great questions. This all seems bizarre in the retelling of it because when I think back to it, I'm like, why? How could that have been on my mind at the time? But when I got back from the hospital, I think it was a Wednesday night and I felt like I had stepped inside a war zone. I felt like I had seen inside the thing that everyone was worrying about and talking about from the outside. I also, and this is going to seem weird because this is not what the news cycle is like today, but I also noticed that at that time, the news cycle was really not describing the patient experience at all. We were talking about what different governments were doing. We were talking about the virus itself, what it might be like, but there were almost no accounts from people who had actually dealt with COVID.
In fact, I think one of the only accounts I saw was this story of two doctors in Wuhan who were around my age who had gotten sick and one had died and the other hadn't. And it was kind of the question of, well, why did one survive and one didn't? Interesting, but ultimately pretty dehumanizing. So I felt simultaneously like I wanted to share what I had seen because I had gathered some genuinely useful information and gotten some advice from the doctors. For example, someone had said to me, well, it doesn't even matter where you got it because at this point you could get it just by going onto the subway. This was again, March 15th [2020]. I don't think people really knew that that was the case at that point in time. But I also wanted to humanize the experience and let people hear from a COVID patient. So I started writing probably the next day that I got home.
I just also felt helpless. I live in LA now, but I'm a lifelong New Yorker. Both my parents grew up in New York City, and I just felt like my yes, me too. I just felt like the city was under siege and I couldn't do anything. I was in bed and I couldn't go out. I couldn't deliver groceries to people. I couldn't help anyone. So I think both of these urges came from just wanting to feel like I was being a part of the solution. Also, I was dealing with a lot of anxiety. I was very stressed out about what I was personally going through, and it did honestly help to be able to focus on something other than myself.
So, I wrote that first article and after I wrote that first article just about my experience of being hospitalized and being a 26-year old fitness instructor who did not expect for this to happen I started to hear from a lot of other young people. They were DMing me on Instagram and telling me ‘I'm also young and I also got sick, and it's been a lot more intense than I thought it was.’ I remember I even met up with someone very socially distanced outside to pass off an extra thermometer I had because once again, people couldn't find the most basic resources at drugstores and that sort of thing. And so I was communicating with all of these different people, most of them strangers, in different kind of individualized DMs on Instagram and that sort of thing and then I was also communicating with my friend Sabrina, who had infected me, who was going through many of the same things, and at a certain point we started to talk about how useful it was to be able to talk to each other, and how incredible it was that I was talking to all of these strangers and also how exhausting it was because I was talking to them all one on one.
And so, in one of our conversations, Sabrina and I were just thinking, and we were like, well, what if we put them all in a conversation together? That way we could all share information and maybe when I'm resting or asleep, if somebody's really having trouble, someone else can chime in because there was someone from Paris and someone from London and someone from Chicago. And so that was kind of how the first iteration of this support group started. It was just in an Instagram group DM with maybe 15 people in it.
And then we had the Body Politic Instagram page and social media already set up because this had been an organization prior to the pandemic starting. So we decided we would create a Google form and let people know that the support group existed for COVID patients in case there was anyone else who wanted to join. I think we posted about that on March 26th, and we had a few more people join. At this point maybe the group had 20 or so people in it, 25 people in it. And by that point also the weeks were going by.
It had been almost a month since I'd gotten sick and met all of these online friends, and a lot of them were also not getting better. And so I started to feel like, okay, there's really a story that is not making it into the news because not only are we not really hearing about the patient experience, but when we do it's someone being wheeled out of a hospital and everyone applauding for them. But what happens when they go home? I highly doubt, if I'm having this much trouble, I highly doubt that that 92 year old man who was intubated for 10 days is going home and playing golf immediately.
It just seemed very likely that there were stories of recovery, or as I put it in the piece, I think I said that I thought there was going to be a wave of chronically ill survivors. So, I wrote this second follow-up in the New York Times basically saying that I think that there are a bunch of us who are not getting better. I wasn't sure how many of us there were, but I just included quotes and anecdotes from people in this smaller group. And it's funny because I think that my New York Times editor took a little bit of a risk on me in publishing that second piece. I don't think they thought it was going to make as big a splash as the first piece that I had written. And in some ways it didn't. But in another way it did because I had embedded a link to the Google form to sign up for the support group and the piece. And 24 hours after the piece was published, within 24 hours, we had had 2,000 people sign up to join this Google form.
So there were a ton of people who read this piece and had it resonate with them. And even today when I hear other COVID advocates and people in the movement speak, so many of them say that was the first piece where I saw anything about my experience reflected. And so things kind of went from there. We got way too big for Instagram very quickly, and then we moved to WhatsApp and got way too big for WhatsApp. And then eventually we moved to Slack and I think that Slack group has over 15,000 members or something like that now.
Aviva: You mentioned brain fog. We know that depression has been a piece of the puzzle, and anxiety. What are some of the other symptoms that you have seen? And for people who are survivors who are now dealing with long haul symptoms, some of these are fairly debilitating and may require people to shift their work habits. What have you seen in terms of how people are moving through this, some of the more atypical symptoms that might not be recognized as long COVID, and how are people coping?
Fiona: Well, the mental health stuff is very real. And I want to note that those mental health issues can be a result we think both of neurological changes that take place as a result of COVID – I know people who have experienced psychosis at various points in their COVID or long COVID journey or have seen hallucinations, that sort of thing – and a lot of it is also environmental. So many people with long COVID are so isolated from the rest of the world. Coping with a new disability or a new chronic illness, I think, is also quite difficult. And then doing that during a global pandemic, it's a lot to deal with at once. But in addition to that there's a range of symptoms and I would say that every system of the body seems to potentially be affected. There are neurological symptoms and some of the things that we hear about people experiencing are tingling and numbness, various forms of neuropathy and that sort of thing, and some of that can be really, really debilitating.
I always say this because sometimes when I list these symptoms, I think people imagine the mildest form when we say fatigue. We're not just talking about feeling a little tired, we're talking about this through your bones, feeling like, “Oh my God, I could not move if I wanted to. I've been hit by a truck.” And one of the hallmark symptoms of long COVID, which is also a common symptom for me, CFS [chronic fatigue syndrome] is something called post exertional malaise or post exertional symptom exacerbation. That's the experience of having your symptoms worsen after a period of emotional, physical or mental exertion. I've spoken to people where concentrating and doing work on a computer, for example for a period of time, can exacerbate a symptom of theirs afterward.
Exercise intolerance is common with long COVID. A lot of people find that if they exercise, they feel much worse afterwards. Sometimes that's temporary, sometimes it's permanent. And that's really tricky because a lot of doctors who aren't informed on this assume that patients who are fatigued or deconditioned and tell them to just slowly start exercising. But again, that can often be the worst thing to do in this situation.
People also sometimes develop new allergies and histamine reactions, and there are people with long COVID who believe that they have Mast Cell Activation Syndrome [MCAS]. And then one of the symptoms, kind of symptom clusters that I experience is I have GI symptoms and I also experience some level of dizziness and fainting. That's actually something that I've experienced on and off throughout my life. And I now believe that I probably had some level of this before COVID and it was just not really diagnosed. And I think a lot of us with long COVID kind of look back earlier in their lives and we're like, oh, that might be a sign of something. That might be a sign of something. But many people with long COVID get diagnosed with POTS [Postural orthostatic tachycardia syndrome] or dysautonomia.
Aviva: When I was first hearing about long COVID, I was in the car with my husband. We were driving somewhere and I said – because I’ve treated a lot of POTS patients. It's very prevalent among mid to older teenage girls, women in their twenties and it's often a condition that falls through the cracks when someone's trying to get a diagnosis. Same with histamine intolerance. Those people find their way to me and I said, ‘Wow, this just sounds like POTS to me.’ And now it does seem like it. I've seen some unusual things too, and I don't know if you've heard of this reported, but people reporting exacerbations of OCD, sleep problems, more headaches, more migraines, women telling me they've had persistent menstrual changes. I've heard a lot of things that can be true, true and unrelated, but they didn't have it before and now they have it. And then definitely the GI piece of it.
Fiona: I'm so glad that you brought up menstrual changes because that's something I've personally experienced. I'd say it's probably actually the most debilitating and lasting symptom for me, and it's left out of a lot of long COVID research. But almost everyone, every long hauler I know who menstruates has had something happen that's weird with their menstrual periods. For me, for a long time it felt like I was having kind of a mini-long COVID or mini-COVID every time I would get my menstrual period. But I was also having some symptoms of perimenopause. I also know people who ended up having PMDD after COVID. And yes, the sleep problems and some of the mental health problems that you're mentioning I have also heard of.
And in terms of how people cope with this stuff, some people with long COVID can work part or full-time if they're given the necessary accommodations. For example, I know people who have orthostatic intolerance, who have difficulty sitting upright but can work from home if their feet are elevated and they're able to take breaks, that sort of thing. But some people can't work at all. And so this wave of long COVID is really, really testing our Social Security disability insurance. It's testing private insurance and it's testing the whole capitalist system. And so far it's not going great. A lot of people are being denied disability benefits and even those who are approved, obviously those benefits are quite minimal and it's very hard to live off of SSDI
Aviva: As Megan talks about so beautifully, and your stories represent in your book too, are the identity shifts that people go through as they're redefining who they are with these new symptoms and what does it mean for their life and how it's shifting their experiences of mothering or parenting if they're more fatigued and tired and can't keep up with their kids, or how it's showing up in relationships. We live in a culture where people with these invisible symptoms, invisible illnesses, are often not believed. People will often gaslight themselves or feel that they're being looked at with suspicion or in fact are being looked at with suspicion. And that adds such a layer of emotional complexity when you're also trying to cope, function and heal.
Fiona: Absolutely. I think for me, it was hard to accept the idea – I think I always, for better or worse, identified as an overachiever – and it was hard to accept the idea that certain things were just not going to be possible anymore. And I'm very lucky. I live with a much milder form of long COVID currently, and I say currently because that wasn't always the case, and I don't know if it will always be the case. And I live with a partner who takes on a larger percentage of our household responsibilities, and I have the flexibility to work from home and I have flexible hours, but even just small shifts for me. Before the pandemic I really prided myself on being an excellent cook and throwing a lot of dinner parties and just cooking really fun and gourmet things all the time. That's just really not a part of my life anymore. Standing up is not something that's easy for me right now. And energy expenditures just have to be more limited. It's much more of a trade off.
I don't know how familiar your listeners will be with the concept of spoon theory, but a lot of us with long COVID kind of rely on this idea that we all start the day with a certain number of spoons and different activities take a different number of spoons. So cooking might be two spoons, showering might be one spoon. For me, I think cooking would be three spoons. And so you might not be able to do both of those things in a single afternoon. And that's kind of where rest and pacing comes in. I'm lucky to have the privilege to be able to enact that stuff but it's intense looking at certain opportunities and thinking that looks really cool, but realistically, I can't do that because that conference isn't mandating masks and I can't risk reinfection right now, or I can't do that because that would just be too energy draining. And I know that I would crash or have a flare afterward, and that's not something that I can handle in my body right now.
In some ways it's also helpful. I think just in terms of learning to say no and set boundaries is a good lesson for everyone.
Aviva: It is an interesting phenomenon that has come out of urgency culture – and I'm not saying there's anything good that's come out of COVID, and many listeners and many of my community have had just incredible tragedies and sometimes multiple tragedies they've faced in their family. I have also heard so many folks say what you've just said, which is the necessary and forced stillness, reflection time, step back time, downtime, and even resetting of expectations is something that has come out of it, and certainly for those who are privileged to be able to do that, it's been more of a gift than for many people.
Okay, so you have this incredible book, the Long COVID Survival Guide, and when I say you are the Brain trust around creating it, this is a collective piece of work and collectivity and lived experience are very important to you, as they are to me. And I would love to hear from you why it was important to you to center the book around those with lived experience of the disease as experts and also why you feel our current medical model dismisses lived experience and peer support.
And I will say from an insider, you know, you got to go inside the war zone. I went from being a home birth midwife and herbalist to becoming a Yale-trained MD. I felt like I was in that battle zone and seeing it from the inside too. And so I've been someone who has been part of creating peer support groups. I've also been in settings where I've actually literally watched physicians roll their eyes when they say, ‘Oh, it's a patient with chronic fatigue. She's one of those patients and she's going to an online support group,’ with all the derision.
So let's talk about lived experience. Let's talk about lived experience as a form of creating expertise and what our model medical model is missing from the value of this.
Fiona: I love this question. I was approached by a publisher to write a kind of guide to long COVID, and I just felt very strongly that no one person can write a guide on this disease right now because we all have very diverse experiences. I mean, they're diverse symptom clusters and that sort of thing. But also, as I said, who you are and what your circumstances are is going to impact your experience very significantly.
So, I reached out to a lot of my very close friends in this movement and the people that I'd learned from and the people that I feel like I had built communities with to write chapters on the areas that they're experts on. I tried to think about what somebody who had just developed long COVID needed to know.
They need to know how to navigate biased medical systems because that is just a reality. And I thought to myself, okay, well Carla Monterosa, who is a good friend of mine and a long hauler, she dealt with that firsthand. She experienced medical racism. I don't want to say she overcame it because I don't think there is a way to overcome it, but she built her own care community. She has really helpful logistical and emotional tips for other people who are dealing with that. She's the expert on how to do that. I don't think a doctor is necessarily going to be more of an expert on that.
But then similarly, I think when thinking about this, it's like patients and people with long, we are the reason that it has a name. The name long COVID came from an Italian patient, Elisa Perego, who tweeted long COVID in May of 2020. That's why we use that term. That's why we have a name for it.
The term long hauler came from a US patient, Amy Watson, who started a support group. She was wearing a trucker hat and kind of made the joke, “I guess I'm a COVID long hauler now” at one of her doctor's appointments. We’re also the reason it has an ICD code; patients were the people kind of fighting for that. Patients really wrote a lot of the CDCs current clinical guidance on long COVID. I was in that Google Doc, I saw the changes being made, I saw what was accepted and what wasn't. And also the very first kind of survey that was done on long COVID was done in the Body Politic COVID-19 support group by a group now called the Patient Led Research Collaborative. They polled the people in that group in May of 2020, and that was the first body of research that we had in the United States on anyone with lingering symptoms. I believe it was the first research that we had at all on non-hospitalized patients with lingering symptoms.
So these are the experts because they've been experiencing it for a lot longer. They've been there from the beginning, they've seen it progress, and they also have a very intimate vantage point. Doctors may be able to, and researchers may be able to understand the symptoms as an outsider, but their long COVID impacts every single aspect of your life from the physical to the mental to the financial to your relationships, etc.. It felt really important to kind of touch on all of that. But also I wanted the book to be truly helpful to patients. That's why patient perspectives seem most important. For example, we had someone from the Patient-Led Research Collaborative write a chapter on not what the most recent research is, right, because it's a book and things move quickly, but a chapter on how to decipher emerging research so that patients can be empowered to look up that research study that their doctor is mentioning or their neighbor is mentioning or they're seeing in the news and actually determine for themselves whether or not it's something that they think is valid or something that they want to consider.
It bothers me when I hear medical professionals downgrading patient support groups. And I will say not every support group is created equal. And I think one of the things that Body Politic does really well is there's very robust moderation and the people leading and moderating the group are long haulers. And it has a very collaborative structure to making those decisions around moderation and norms to the group. Of course there might be groups in which that isn't the case, and there may be more misinformation or disinformation if people are getting into the group who shouldn't be in the group. But overall, I think that peer support is immensely helpful. And there's such a long history of patients and people living with diseases and peer support initiatives always being that first line for people who are getting sick. If we look at the HIV/AIDS movement, that's once again why there was research on that. Those are the people who set those research agendas and demanded that research.
And actually today, I think a lot of the reason that we haven't progressed further in terms of getting access to the treatments that exist for HIV to everyone who has it is because there's not quite as much investment, financial investment into those sorts of community groups as there was maybe in earlier decades for HIV/AIDS.
Something that I've noticed is that there's a lot of kind of gratitude to patients for serving this up to us and telling us what it is, “but we can take it from here” is a little bit the attitude sometimes from medical professionals and researchers, and that can result in bringing patients on as advisors, but really just tokenizing them or not creating structures that make it possible for patients to actually collaborate. We're chronically ill, we need specific workflows and accommodations to participate. And I think it can sometimes result in prioritizing research and development, which is really important over prioritizing public health messaging and community outreach. Those two have to go hand in hand. Patients and people with lived experience are always going to have to be the leaders on community outreach and public health messaging. They should also be informing and setting research agendas because they know how to reach the people who are going to receive this messaging. They also know how to set those agendas in such a way that they benefit patients; what patients want to see researched is not always the exact same thing as what research institutions are curious about.
Aviva: One of the things that I have heard from my colleagues or just witnessed when physicians are dismissing, or as you say, downgrading support groups, and I've seen this even in my patients – I mean, I'm a huge advocate of peer support groups, and I know that so many of my patients have truly survived on some level before someone believed them by exactly what you had with Sabrina in the beginning, that validation, that I'm not crazy. that I'm not the only one with this, especially when you're being told by physician after physician that it's not real. But I have also seen the phenomenon where people do join a support group and there is, as you say, misinformation.
When there's this living at the edge of medical knowledge, when there's this very amorphic, and in this case new viral infection that happens, there are certainly the tried and true safe things that people might try. One of the things that I was talking to people about is like, well, we don't really know, but with some of the other viral infections that affect the nervous system, maybe St. John's Wort is a safe type of supplement to try, but then there are also sometimes really out there and potentially not safe recommendations.
I wonder how you, navigating long COVID and also your peers that you encountered, explored novel therapies to try to get relief and also moderated what was sort of the bar in a way of moderating around things that maybe were more questionable.
Fiona: Yeah, it's very hard. I think I can speak to the sort of values that we tried to keep in mind when moderating the support group. Actually, one of the values that we had for Body Politic before the pandemic was that we wanted any and all wellness offerings to be non-prescriptive. The idea being that we wanted to present people, we did an event on sleep, for example. And so we had a restorative yoga teacher speaking, and I think we had a therapist who specializes in sleep issues, and we had an expert on cannabis and CBD, and probably a meditation teacher. But the idea was not there's going to be one kind of remedy taught to you and told, and you're going to be told this is the one way to do it, but instead to present people with an array of options and to have people really speak from their own experience – this is what worked for me, this is why I liked it, etc.. This is the information on it.
And we tried to bring that into the support group as well, encouraging people to, when they were sharing experiences of things, they had tried to be very clear about the fact that this had worked for them, if it had, and also what their specific situation was. If this thing costs a lot of money, making that clear and answering questions. But just always making sure not to be prescriptive and say, this is what you must do.
I think there have been some really robust conversations in the support group about more experimental therapies and I think that there's a lot of trust in that group where people know that people are not in there soliciting or trying to scam people, There are some really honest and interesting conversations that happen where people say, well, I tried this thing and I know that it's kind of experimental and out there, but it did work for me. So take that as you will.
The other value that I think helps with this is honestly just keeping disability justice and disability theory in mind. I think that a lot of people who are searching out experimental treatments – and I don't want to make a generalization here – but I think that sometimes the especially vehement searches for experimental treatments and kind of pushing people toward this, there's push toward how do I cure myself? How do I heal myself as quickly as possible? I want to go back to the way I was before today, and that comes up a lot. It's really real to grieve what you've lost and it's very hard to accept that it might not be possible to go back to that old version of yourself. But something that we've tried to do a lot in the support group, and Allison Sbrana, who is someone living with ME/CFS, who's a member of Body Politics Board and has been very instrumental in the support group, I think has done an amazing job of building out resources, including actually a Slackbot that automatically responds to certain trigger words with a list of resources about learning about disability justice, accepting disability and that sort of thing.
The idea that we can be suffering, we can be dealing with really difficult things, but that doesn't necessarily have to be inherent to our condition, and that this desire to achieve ultimate wellness within 30 days is often a desire that can lead us astray because it's something that people market toward and it's something that is ultimately often not grounded in the values of disability justice.
Aviva: I so agree with you, and it permeates so many things in the wellness space now, which is two weeks to heal your hormones, two weeks to do this, seven days to do that, and it's not how the body works. And it can really set unfair expectations for your own body and your life and also for the practitioners that you're going to see who may not be able to give you those results. And I often say be very wary of people who are offering those types of results.
Fiona: Yes, David Putrino always says, “If somebody tells you that they know how to cure long, they don't know anything at all about long COVID.” I think that's pretty good advice.
Aviva: I think it's really powerful. I remember being a young midwife and one of my clients at the time, her partner was a CDC physician, actually an epidemiologist, and he sent me this beautiful article and there were types of illness as was defined in this very beautiful piece that I don't remember who wrote, but what struck with stuck with me was there are the illnesses that have a solution that's more obvious or time and you get over it, right? You have the flu, it's going to pretty much go away, most likely. Then there are the ones that you find acceptance with that they may be a new part of your life. And with long COVID, we haven't had enough length of time with it to know what that really means. It could be in the first category, it could be in the second category. And then of course there are the illnesses where we have to accept life is finite also, and there's a different kind of acceptance. And it was a really beautiful place to look at and also to be curious sometimes instead of, I mean, yes, we all want to be cured when we have something chronic, but also to be curious about, we don't know. So it doesn't mean I'm giving myself sort of this endless sentence, but it's just sort of staying open to what may come next. And that's what I find really helpful with my patients to talk with them about that curiosity about it.
One of the questions I have from a sort of practical place is what are some of the most important tips for managing symptoms that you feel really confident about sharing that have emerged from the collective wisdom of the long COVID community? I have a couple of patients right now who are going to COVID rehab actually, and it's a lot about pacing, paced breathing, sleeping, a lot of autonomic, what people might call adrenal type of restoration. What do you think of that and also maybe some of the for lack of a better word, remedies that people might have found effective herbs or supplements, etc., low-dose naltrexone [LDN], any of the things.
Fiona: Yeah, I mean people definitely use LDN I think if you can. I think my personal approach with pharmacological interventions is I try one thing at a time so that I know that I'm having a controlled experiment because also life is never controlled.
Aviva: I say that to my patients all the time, let's start with one thing because if it helps you, then we know that's what you needed. But if you try 18 things at once, we don't actually know which one helped or exactly, if you have a reaction to one, we don't know which one was the problem.
Fiona: And I will also say that I search the names of these meds in support groups a lot of the time before I make the decision to go on them because I want to see what other people's experiences have been. And just that human side of the long page of side effects that comes with the medication can be helpful.
The thing I always tell people is there is currently no certification or anything necessary to call yourself an expert on long COVID or a long COVID clinic. What I think is more helpful is to look for providers who have experienced treating some of these related conditions like MCAS or dysautonomia or ME/CFS because then you're going to providers who have actually been dealing with similar illnesses for decades as opposed to somebody who maybe just read a little bit about long COVID or is learning about it right now.
That's not to discount obviously the many providers who are learning about this right now and getting into this game right now because many of them are doing a great job, but there are long COVID clinics that really are not helping a lot of people, and that's a result of the providers just not being educated enough. So I always say some of these names may be new, they might be long, they might be hard to pronounce, but start getting comfortable with these terms because you're going to want to look for providers who have expertise in post-viral illnesses and these illnesses, specifically.
Pacing and rest is if you can do it, if that is available to you. I don't know of anyone that it's harmed. Some patients might be able to tolerate some level of exercise at some point, but pretty much everyone can tolerate pacing and rest. Sleep when your body wants to sleep, sit down when your body wants to sit down.I really listened to this a lot during my recovery in those first kind of three to four months after acute COVID, and I think it made a substantial difference in my trajectory compared to people I knew who had to work through those months.
And that brings me to the next thing, which is not being afraid to ask for help. And I know this is very, very, very hard because we live in a society where chronic illness in general and invisible illnesses are often stigmatized and then COVID has been politicized, but not being afraid to ask for accommodations at work, not being afraid to ask for help from a partner or friends, expressing those needs and getting comfortable expressing those needs is going to be the difference between having to push through something that is physically uncomfortable and then crashing and making yourself temporarily or permanently worse afterward, versus maybe having that slightly embarrassing moment that I had a couple of weeks ago of saying, okay, I'm feeling faint for whatever reason, and I can't walk home from dinner. I need someone to go get the car and come back and drive me home. Sorry, it's awkward, but it probably made the difference in me feeling even worse the next day.
The two other things I'll mention are avoiding reinfection. It does seem, and again I'm saying this with the knowledge that it's very hard to do, if not impossible for some people to do, but it does seem, anecdotally, that most people I know with long COVID who have been reinfected, their reinfection sets them back in their long COVID recovery. And we also, of course, have some research to suggest that the more COVID infections you have, the higher your risk potentially for some of these more severe long-term outcomes.
And then lastly, I do agree that especially for those of us who are dealing with some level of autonomic dysfunction, that's largely what dysautonomia and POTS is – regulating your nervous system can be very helpful, but I want to caution that meditating is not going to cure you. And so for that well-meaning aunt who's like, well, have you tried breath work, she means, well, but it, it's not going to cure you.
That being said, I found that a daily meditation practice and just I think pacing in ways that allow me to just make sure that after something that's high adrenaline, I have plenty of time to try and regulate my nervous system; things like that I have found to be helpful. People also are experimenting with dietary interventions, especially people who are more in the MCAS bucket of long. And then again, there are countless medications that people try. I haven't tried as many of them as other folks. I use a preventative headache medication called Topamax or Topiramate right now. It's also a seizure medication. I found it to be honestly pretty helpful in reducing my level of headaches, but I know people who have also found that it doesn't work at all. So it's kind of trial and error. And also long COVID is a shifting thing. So something might work for you for six months and then you might find that it stops working. You have to try something else. It's not your personal failure. We're all kind of doing this experiment on ourselves and we're doing the best that we can.
Aviva: Well, speaking of asking for help and auntie, who’s well-meaning but not quite dialed in, what do you wish people who don't have long COVID knew about living with the illness and supporting somebody in their life who does have long COVID?
Fiona: Well, the first thing is that we can look and seem fine and also really not be fine. I think it's so often that I hear people kind of react immediately to hearing someone has long COVID by saying, “Well, you look great; long COVID looks great on you.” And you're not seeing all of the time that that person put in resting and pacing to get themselves to that event. So just not making assumptions about the way that someone looks or the fact that you might see them, maybe you might see me jogging. That's something that I am now able to do again. But that doesn't mean, for example, that I would be able to stand up on a line for 20 minutes without feeling faint. That's just the way my body works right now. So not questioning someone's disability or chronic illness based on how they look or seem.
Another key way that I think folks can show up for people with long COVID is being active in trying to reduce COVID spread in their communities since again, I think most of us who have long COVID are very concerned about reinfection and we also know that the only way to prevent long COVID right now, while Paxlovid and vaccines may reduce risk, is to of course prevent yourself from getting COVID in the first place. So things like wearing masks and testing frequently and just talking openly about this and being very communicative with your peers about, well, what do you feel comfortable with? What do you feel safe with? I think that can go a long way. I often feel like I'm the only person asking those questions in a social situation, and it's a burden, especially given that it feels so deeply personal.
It's also important to know that, and this gets expressed a lot by COVID long haulers and people who are in friendships, the relationships with COVID long haulers. Sometimes people with long COVID have to bail or flake on plans last minute, and that is kind of different from when people who are not living with long COVID have to do that. The nature of our symptoms are such that it's unpredictable. If I say, I'm going to meet you for dinner, and then I realize that I can't, that is me doing something good for myself and ultimately for us both, because you might end up having to take care of me if I go.
Aviva: I just keep myself to do that as an introverted Gemini. I mean, I'm just like, I'm going to change my mind and I just want to be home alone.
Fiona: Yeah, absolutely. I mean, we should all give each other grace in that regard.
Aviva: We really should, especially when we are already taught to overschedule, right? We say yes to the thing that we really needed to say no in the first place. Although with long COVID, I'm sure there's so many people who really want to say yes and show up and just,
Fiona: Yeah.
Aviva: If you could wave a wand and change one thing about what future doctors learn in medical school or change something about the medical system, what would it be?
Fiona: I think it would honestly be the knowledge that viruses do not resolve immediately for everyone. And so I know we mentioned earlier that the flu might fall into that first category of something that resolves quickly, but I also feel like I have to mention that there are people living with ME/CFS who developed it from the flu, and of course the flu seems to have a much lower risk of that happening.
Aviva: Yes, but Epstein Barr virus, which I see in so many of my patients who show up with new onset Hashimotos, new onset of ME/CFS, new onset of just fatigue, deep debilitating fatigue or another autoimmune condition that is a common viral infection that honestly, I've been doing this work since the eighties, and I can remember back in the eighties people starting. That was when we really started to see back then called chronic fatigue syndrome, total dismissal of that, still a dismissal, even though it's taught in more medical schools, apparently 70% of physicians still think it's a BS diagnosis and have no understanding of the correlation between that and Epstein Barr Virus. So do you think that this long COVID phenomenon will shine a light and start to change how viral infections or how virally mediated chronic infections are recognized and treated?
Fiona: I think it has to an extent. I mean, I've seen, there's a lot of news articles mentioning ME/CFS and mentioning there've even been some stories on the long haulers of the 1918 pandemic and that sort of thing. But unfortunately, I still see a lot of articles. I mean, I read an article from the Today Show a couple of months ago in which a doctor was quite literally describing the symptoms of POTS in children and young people, but without using the word pots and saying, it's this weird thing, and I'm seeing it show up after COVID and actually giving some of the lifestyle techniques like increased sodium, increase fluids, wear compression socks, all of these things that I've been taught by the POTS community, and I was thinking, why are we not using the actual name of what this disease is? So it's hard because I think that there's just a lot of people who have not been introduced to that kind of historical context or write it off as being unimportant.
So to an extent, but not at least so far, I haven't seen it go far enough. And also the NIH’s long COVID research is not in any way building enough on ME/CFS research, they're not pulling in enough experts on ME/CFS, and a lot of advocates feel like they're kind of reinventing the wheel, and that's just going to slow all of this down a huge amount. They're considering looking into exercise and cognitive behavioral therapy as cures for long COVID. And the ME/CFS community is like, no, we already tried that. It didn't work. Don't do it again. So it's a mixed bag. I think some people are more aware of it, but I also think that there's some very hard-headed individuals who want to just keep barreling down this road of long COVID is totally unique. It has nothing to do with any other illnesses, and we're going to solve it by just starting from square one.
Aviva: What do you think it's going to need? What do you think is required to ensure, what is it about the system that has to change to ensure that patients are treated as true collaborators, if not leaders in research? Or do you think it's going to just sort of stay bifurcated like this where people who are experiencing something are just having to find it sort of out of the medical system?
Fiona: It's hard because I think medical curriculums definitely need to change, but then even if that happens, it's going to obviously take a while for that generation of med students to kind of make their way into those higher up roles in medicine.
And then beyond that, I feel worried because once again, I have friends in med school, and I've also interviewed a lot of healthcare workers as a journalist throughout this pandemic, and I'm deeply, deeply concerned about the state of medicine just on behalf of healthcare workers who are increasingly burnt out and leaving the industry and basically feeling like this for-profit healthcare system is not serving them or their patients. I mean, there's several high profile doctors who have just stepped back from doing that work.
So I think it's going to require, honestly, a restructuring of the entire healthcare system. I don't think that we can have a system in which also these specialties are as siloed as they are currently and attempt to treat patients in this way. It's exhausting to have to go to a cardiologist who says everything looks fine, and then a gastroenterologist who says everything looks fine, and then a neurologist who says everything looks fine. And the few providers who are focusing on everything at once are so often just completely out of network, financially inaccessible to patients.
Aviva: As essentially I am. I try to do as much democratizing information. We subsidize the podcast ourselves, blogs, community support groups, because it is when you're working with a patient as a primary care provider and you are taking care of the whole person, each patient, it takes so much work because they're not going to seven other doctors. You're bringing it all into one, and it's so important, but it really is, the system doesn't compensate for us to do that absolutely affordably. It's really frustrating.
Fiona: And then we also need, I think mean we're having this, and I think the long COVID movement is going to contribute to this, but a majority of Americans are at high risk for COVID. A majority of Americans could identify as disabled or chronically ill, but a majority of Americans don't. Right? And so there's a lack of political solidarity because there's a lack of awareness, frankly. The CDC messaging on long COVID hasn't been very good people. There are people walking around with it who don't even realize they have it. So I do feel like there is also a political movement that, and obviously the disability rights and disability justice movement has been around for many, many decades and has achieved a lot of amazing things, but it feels like there is this awareness that that needs to happen in terms of people in this country realizing that it's not your fault that you feel bad as you go through the day, right? We should all be working together.
I mean, I think about the people who were disabled during George, George Floyd, sorry, the people who were disabled during George Floyd protests, the people who were disabled through police brutality, the journalists and the protestors. I think about the people who have been disabled by climate disasters, the people who were disabled by previous disease outbreaks before COVID, and who will be disabled by future disease outbreaks after COVID. Are we all linking up? Are we all talking to each other or are we all advocating together? Because I'm not sure that's fully happening yet, and it should be. I mean, even people who are part of that initial HIV/AIDS movement are not all talking about long. So there's a political solidarity that also has to happen.
Aviva: Fiona, your work is so important, and I'm thrilled to have this conversation with you. For folks who are like, I need to get more of this, there's the Long COVID Survival Guide, which of course we will link up in the show notes. Where else can folks find you, get more of what you're doing?
Fiona: Yeah, so the Long COVID Survival Guide is out. There is also a mutual aid book exchange project that people can participate in where we have people sign up who want to gift books to people who can't afford them, and then people who sign up who want to receive those books. So I'll send you that link as well. We've sent out dozens of books already, and it's like one of the most exciting things we've done around the book. It's just really nice seeing people receive that. But yeah, you can find me on Twitter and Instagram and TikTok at fi_lowenstein and also my website, fionalowenstein.com. And I just had a piece come out and wired about virtual relationships and the power of online community building. So if you're interested in that, if you're also somebody who's still a little more cautious and staying home a little bit more and missing your friends and feeling like you've made a lot of friends online during this pandemic, maybe it's something that would resonate with you. So I just put that up on my website.
Aviva: Brilliant. And can they find support groups networks through the Body Politic as well?
Fiona: Yes. If you go to, we are body politic.com there is a page of support groups that you can access, and also in the Long COVID Survival Guide in the back, we have a list of resources that includes actually a page with scannable QR codes that will take you directly to the websites for various support groups on Facebook and on Slack and WhatsApp.
Aviva: Okay. I have a question for you that I'd love to ask each of my guests here. If you could tell your younger self anything, how old would they be and what would you say.
Fiona: My goodness. I would say I live in LA and the bagels aren't as good, but the food is probably good otherwise.
I would say that a lot has happened in my life that I don't think my younger self would've anticipated. So I think what I would really want to say – it’s going to make me emotional – is that being sick is not the worst thing in the world. It's really not. And it's okay to not be your healthiest self. That doesn't mean that you're not your best self, and it doesn't mean that you're a bad person and it's no fault of your own, and your health and your productivity does not equal your worth. And I'm sure that if I told my younger self that, my younger self will be like, why are you telling me this? I don't care. And I don't want to listen.
Aviva: That's powerful, Fiona. Your health and your productivity do not equal your worth. That is not something that is our dominant cultural message. So thank you for sharing that, for sharing the wisdom and the lived experience and the connectivity that you've created and your incredible writing and op-eds that you've somehow managed to write in the midst of all the other things and in the midst of your own healing – and for taking time to be here with us. And I hope that as things emerge and shift and change and grow and we get more information, you'll join me again in a year or two and we'll see where things are at. But I'm hoping that we see people continuing to be able to heal and find grace for themselves as you have. And thank you again so much.
Fiona: Thank you so much for having me. This was such a great conversation. I'm really glad that you have this podcast and you're having these discussions. And for anyone listening with long COVID or c f s, please know that there are so many people working on this problem right now, and I really do believe that things are going to get better with time even though I'm also very angry and frustrated.
Aviva: I just want to add, that's such an important thing that you're saying too, because I mean, you didn't necessarily expect to suddenly have these op-eds in the New York Times or have a book, and you took the risk to raise your voice and speak and write. And I would love for anyone who's at home or in their car where they're ever, they are listening. I haven't had a writing class since I was in ninth grade, and I'm 56 years old, and I wrote many books and a New York Times bestseller. And so I would love to just also encourage those of you listening to us to feel empowered to raise your voice, create your own community, peer support groups. All the things that you see Fiona and I doing are also within your power if those are your desire and aspiration. And if all you need to do right now is rest, that's okay too. And we'll be here. I'll be here next week for you to rest and listen more.
Thank you everyone so much for joining us. And again, thank you so much, Fiona.
Fiona: Thank you.
