Oonagh Cousins was preselected for the Tokyo Olympics as a professional rower on the British team — until Long COVID derailed everything.
In this episode of Still Here, co-hosts Miles Griffis and Betsy Ladyzhets talk to Cousins about developing severe Long COVID at the start of the pandemic, her years-long attempt to return to elite training, and the relapse that ultimately forced her retirement in 2022. She is one of many professional athletes grappling with infection associated chronic conditions, including NHL player Jonathan Toews, tennis player Emily Radacanu, and many more. Cousins reflects on how her athletic background reshaped her understanding of rest, toughness, and listening to her body, and speaks candidly about pushing back on harmful “brain retraining” programs.
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RSSLinks mentioned:
- Research updates, July 14 – The Sick Times
- Emma Raducanu has post-viral syndrome. And commentators are giving her terrible advice. – The Sick Times
- NBA player Kristaps Porziņģis shares POTS diagnosis – The Sick Times
- Grappling with Long COVID as an elite athlete – The Sick Times
- Long Covid course is ‘exploiting people’, says ex-GB rower – BBC
- The importance of understanding rest – #ThereForME
Jump to a specific part of the transcript:
Intro
Melanie Marich: [00:00:00] Welcome to Still Here, a Long COVID news and commentary podcast from The Sick Times.
Miles Griffis: I’m Miles Griffis
Betsy Ladyzhets: And I’m Betsy Ladyzhets. We’re the co-founders of The Sick Times
Melanie Marich: And I’m Melanie Marich, the podcast producer for Still Here.
Miles Griffis: Many institutions are ignoring the ongoing COVID-19 pandemic and trying to erase [00:00:30] the Long COVID crisis
Betsy Ladyzhets: But here at The Sick Times, we’re bringing you the latest news and commentary that matters to the Long COVID community
Miles Griffis: Without pandemic denial, minimizing, or gaslighting.
Melanie Marich: I have been having a very sporty summer, at least as a spectator. I have watched so much soccer, quite a bit of basketball. I’m even watching some competitive show jumping. Yes, that is the one with the horses. For as much [00:01:00] fun as I’ve had watching all these sports, it’s also bittersweet. Athletes are often celebrated for their discipline, their drive, the ways they push their bodies to the limits in the name of excellence.
It’s all, well, a lot of stuff that gets very painful to think about when you bring in chronic illness. Chronically ill bodies often cannot move like that, no matter the desire or the drive. When you’re sick, you’re sick. Long COVID is even more complicated because [00:01:30] so many uninformed medical providers still think it’s a disease you can exercise your way out of.
Numerous high-profile athletes have shared their experiences with Long COVID and related diseases, including NHL player Jonathan Toews, and many have had to retire. Our guest today is proof that if you try pushing through it, it can actually make you worse. Oonagh Cousins was getting ready for the Tokyo Olympics when she developed Long COVID.
As a [00:02:00] professional rower, she was in tip-top shape, better than even many other kinds of athletes. But after years trying to recover, Oonagh had to retire at the end of twenty twenty-two. Now she tells her story and dismantles the myth that Long COVID and ME are deconditioning. Miles and Betsy spoke to Oonagh about her athletic career, how getting sick changed her life, and how the way we think about sports, athleticism, discipline, and toughness are all wrong.[00:02:30]
Here’s that conversation.
Interview with Oonagh Cousins
Miles: Oonagh, welcome to Still Here. We are so excited to have you on the show. Uh, would you just please introduce yourself, tell us where you are today, and a little bit about some of the advocacy work and work you’ve done on Long COVID and ME?
Oonagh Cousins: Thank you. Oh, it’s so nice to be here. Um, I followed you guys for ages, and, um, it’s so cool to meet you both. Um, so yeah, I’m Oonagh Cousins. my Long COVID story is I was a professional athlete on the British Rowing Team. I was [00:03:00] preselected for the Tokyo Olympics, uh, March 2020, and I got COVID right at the beginning of the pandemic, which ended up developing into quite s- severe Long COVID.
Um, I spent two and a half years, three years trying to recover from it, trying to get back to rowing before, um, it basically not working out. I relapsed as a result of trying to get back to it, um, and retired from professional rowing at end of 2022. And kind of off the back of that, originally I was doing [00:03:30] kind of like media interviews and, uh, ’cause my story, it goes against the narrative of who gets Long COVID and who’s affected badly by Long COVID, and so I realized I had a bit of a story to tell.
Betsy: Well, thank you. So to kind of talk about the athlete stuff a little bit more, you know, what was life like before you got Long COVID? What did an average day look like for you?
Oonagh Cousins: I mean, it was fun. I really enjoyed it. I was training 16 times a week, so that’s, mm, [00:04:00] three times a day, four days a week, and two times a day twice a week and one day off. Um, basically it’s, uh, you know, you wake up, you eat, you train, you, you eat again, you rest, you train, you eat, you rest. You’re basically just eating, sleeping, and recovering, and training.
That’s just what you’re doing on repeat. It’s quite institutionalized. You’re in a system and you just, you’re — the system carries you along and, um, it’s just very, very focused on, um, getting as fast as possible in a rowing boat. Um, we used to do, [00:04:30] um, on the water training, in the weight room, and also on the erg.
Um, and yeah, you know, my whole life revolved around that kind of four-year Olympic cycle of, of getting selected for the Olympics, um, at the end of the, at the end of the cycle.
Miles: Uh, wow, the mention of the Erg brought back a lot of memories ’cause I used to do cross-country skiing, and we would do both Erg and, like, SkiErg, which was pretty similar. But,
Oonagh Cousins: Yeah
Miles: I’m curious, um, you know, getting good care for Long COVID is hard for anyone. [00:05:00] Um, I know a lot of professional teams will have, you know, uh, complete medical teams with physiotherapists, doctors. Um, your experience or sort of in just being in sport, are these teams generally aware of Long COVID, NME, and other post-viral syndromes or infection-associated illnesses, or is it still something they are very much figuring out?
Oonagh Cousins: It’s a lot better than like if I hadn’t been in the team. In terms of the healthcare I got, it was a lot better, [00:05:30] and the understanding I got was a lot better than if I wasn’t in a sports team. But they’re still very much figuring it out. Um I say it’s a lot better in the sense that everyone believed me that there was something wrong, right?
There was never any, “You’re making it up. You’re just a bit tired. You’re…” Obviously, they can’t tell me I’m unfit. So I didn’t experience that level of stigma, which is obviously drastically different to what many people experience, and I think that was a massive advantage for me. And also, I think, you know, I had data.
Like, when I sat on a rowing [00:06:00] machine, my numbers were really bad. Like, it, it, it wasn’t invisible in the same way. And also, you just have this credibility. No one’s gonna take a year out of their rowing career when they’ve been selected for the Olympics. Like, you are afforded that credibility that you don’t get outside of a system like that.
But they really didn’t know what was wrong with me, and they really didn’t know, um, how to look after me, actually. They really didn’t know what care to provide. I went to, um, in the early stages of the [00:06:30] pandemic, so when, in those first few months that I was sick, I went to a lot of specialists. I was, you know, I was really lucky.
I went to have my hearts checked, to have my lung checked, um, kind of various different ultrasounds and tests that I had, my blood tests. But I remember sitting there and thinking, “They’re not gonna find anything,” because m- I didn’t have heart or lung symptoms. I was pretty sure they weren’t looking for the right things with my, with the blood test, and that was right.
They, my tests all came back clear. And so really, even from that early stage when I was lucky enough to be seeing specialists and being referred to specialists, [00:07:00] it, my healthcare was entirely down to me, and I said, “I can’t train. I need to rest,” and that’s what made, that’s what was, that was the call. And I was fortunate enough that I had a doctor that believed me and let me do exactly what I needed to do.
The only thing that is comparable is kind of this over-training syndrome, which is different, but it’s not a million miles away from a post-viral fatigue type syndrome. So the doctor was familiar with how careful you have to be with building back to life and was very much like,
[00:07:30] If you can’t do daily life, you’re a million miles from being able to do training.” So the advice I was given was, “Make sure you can do normal daily stuff. Like, if you can’t go for coffee with your friends, you’re not going anywhere near a rowing machine, for example.” So, you know, I was getting that advice, which a lot of people aren’t.
but then there were also some big mistakes. So, like, when I tried to return to training after a year and a half of recovering — I was really fortunate that I did recover from PEM. I just aggressively rested for a year and a half, and I recovered from PEM, and that’s when I started to return to training.
But I still had [00:08:00] dysautonomia, um, only mildly, but I did have it. And they, the doctors told me that I would train out of it, and that seemed to add up. Like, I seemed, as I got fitter, the threshold at which I was getting symptoms did seem to increase. But I hit a ceiling where essentially the training I was doing was so much that my body couldn’t recover from the sympathetic flares that I was getting into.
And that’s when I ended up relapsing. And that’s a good example of — no doctor told me to stop. The physio- the physiologists around me didn’t tell me to stop.
Like, they [00:08:30] listened to the doctor’s advice, which was that exercise would help dysautonomia and I could just train out of it. And so in some ways I was really lucky and, but then in some, like they still made mistakes, and you know, I’m still sick today. I’m more sick now than I was when I returned to training in end of 2021 or whenever it was, and that was because I was told that I could train out of dysautonomia, and that ended up doing long-term harm.
So it’s a mixed picture.
Betsy: I’m sorry, that sounds really tough. Um, and I know it probably is something a lot of people who are listening to this or who read our [00:09:00] articles can relate to, the sense of like even if you’re getting some of the right advice, like figuring out that really delicate balance of, uh, how much to rest and how to manage post-exertional malaise, um, just is really difficult and it seems like it’s really individual for each person. Um, and I know in sports particularly, like there are a lot of the commentary around it, like I was just listening to like commentary on Wimbledon which the tennis tournament that’s going on also right now, and [00:09:30] so, so much of this commentary is kind of around pushing through injury or pushing through fatigue. So how does Long COVID kind of complicate that idea, um, for
Oonagh Cousins: Yeah. So again, it’s a mixed picture because, like I think as an, as an athlete, I had a real advantage around my relationship with illness and rest and respecting my body. Because when you’re training, you, and you get sick, you, you’re expected to rest because as an athlete you know that if you push through illness, you’ll be sick [00:10:00] for longer, and then you’ll have more time out of training.
And so actually, there’s a bit of a gray area where maybe you have a head cold, for example, your illness isn’t super, severe, and then maybe the coach wants to, expects you to push through, and that, then it gets a bit questionable. But generally if you’re sick, and this is what I, this is what I experienced, is that, you know, the doctor was like, “You’re sick, you need to rest,” right?
Which I think actually outside of sport people aren’t very good at understanding. So really prioritize, and when we say rest, it’s like lying on the sofa and doing nothing, right? That’s really what rest is. It doesn’t mean just not [00:10:30] exercising. But there is a culture, um, when you’re doing performance or like if you’re playing at Wimbledon or if you, this is what happened to me, I was doing my final Olympic selection, you push through whatever you’re experiencing.
And that was part of the reason I think I got Long COVID, is that I was, um, I was, I had COVID and I was pushing my body to the limit. So I did a lot of harm when I still, when I was in, had the initial infection. And yeah, I mean, we can talk, there’s a lot to talk about, like toughness and this [00:11:00] whole, the whole culture around sport.
But yeah, just if I was like focusing on our, sportsman’s relationships with illness, I do think it’s actually better in so many ways than outside of sport actually.
Miles: That makes sense, I guess since there’s like more of a hyper-aware, wanting to be healthy and to be able to perform, um, at a high level
Oonagh Cousins: Yeah. Yes, exactly. And like when you’re really run down from a- from training all the time, when you’re sick, you get more sick. So you really, like you really are [00:11:30] very aware of it. It like shows up on your scores very quickly. So it’s like there’s no hiding, there’s no like, “Oh, I’ll just manage through,” you know?
Miles: Yeah. Well said. I mean, yeah, I mean, over the years, we have seen numerous professional athletes, uh, experience Long COVID and related diseases. Um, we’ve reported on some of them. We did a story on, like, elite Olympians who had, uh, Long COVID and other related diseases. And then recently, we’ve seen NHL player Jonathan Toews [00:12:00] retire from the NHL. seen NBA player Kristaps Porziņģis, uh, with a POTS diagnosis. And most recently, uh, I wrote a story about Emma Raducanu, um, the professional tennis player who has a post-viral syndrome right now. the spectator’s perspective, something shocking about seeing all these high-level athletes getting sick. but what has your reaction been to sort of seeing, um, other athletes, uh, develop long [00:12:30] COVID and related diseases over the past few years?
Oonagh Cousins: Yeah, I mean, it, it is jarring for sure. You can see, like, the lack of understanding still that comes through, I think, when you see them play or, like, try to push through. Uh, this is the thing, I can’t talk for every system, every athlete system. I can only talk for British Rowing. But, like, like, um, there, there’s been examples where I can see that someone has, you know, they, they’ve been in the news and they have, like, some post-viral fatigue syndrome, and they’re trying to race and train through it.
And, uh, Emma [00:13:00] Raducanu– I don’t know the details enough of Emma Raducanu’s story, but that, for me, it seems like that’s what’s happening with her, is that she’s trying to, like, m-manage it and push through it, and it’s like, please stop. You need to stop to then recover to get better, and there is that lack of, that lack of fluency and lack of understanding of post-viral fatigue.
“Fatigue” is a word I don’t like. [I prefer using] “post-viral conditions” or, um, “infectious associated chronic conditions.” Like, and I-I think maybe I like rowing. Rowing, y-you, [00:13:30] you do, without blowing our trumpet, like, you’re with some of the fittest athletes. Like, you train your body to the absolute maximum all the time, and so I do think that there maybe there’s a bit more fluency of this stuff in rowing than maybe there is in some other sports.
I don’t really know. I couldn’t tell you. You’d expect, like, a tennis star to have a better fluency with it, but it, it doesn’t seem to be there. That, that understanding still doesn’t seem to have reached those places yet, which is just bizarre and jarring to see
Betsy: Yeah. No, I agree. I mean, with Emma Raducanu, I feel like… She drops out of a [00:14:00] tournament, but then she’s back trying to compete in the next tournament. And as a tennis spectator, I just wanna
Oonagh Cousins: Yeah
Betsy: Be like, “Stop. Just take a few months off.” But it’s a very individual sport, and so I imagine that maybe makes, makes it a bit more difficult than with something like rowing where you’re, like, on a team. I don’t know.
Oonagh Cousins: Yeah, I mean, I think it’s, I don’t know. I honestly, I actually don’t know the answer to this question. I don’t know why, like, these tennis players, you know, there’s a lot of, there’s a lot more money and there’s, it’s much more, it’s more of an elite system than rowing was. But for some [00:14:30] reason … But it was the same with cycling as well, which was always meant to be at the forefront of the science, and that, again, there were people pushing through these kind of conditions.
And I honestly, I don’t even know what it is. I don’t … I just think it speaks to the lack of evidence and the lack of how un-mainstream these conditions are, even though s- it’s affect so many people. Um, it’s the cognitive dissonance that I, like, still can’t, I’ve, you know, six years into this, I still can’t grapple with.
Like, I just don’t understand it. I don’t have an answer. It’s just, that is what is [00:15:00] happening. Yeah.
Betsy: Yeah. No, absolutely. The cognitive dissonance is huge, and I think we see this in our work as journalists too, that there are so many misconceptions around Long COVID. Um, there’s the idea of, like, deconditioning or the fact that people are getting sick or maybe continuing to have symptoms not because of biological causes, but because of the consequences of resting in itself. I know this is something that you have pushed back against yourself and, like, kind of pushing back on this really harmful [00:15:30] minimizing talking point and this pervasive narrative that you’re seeing.
Oonagh Cousins: Yeah, this idea that we’re deconditioned or we’re just tired. Um, yeah, I mean, I, like this always was so comically ridiculous to me because I was like, I was so fit obviously when I was at my most sick. So that, you know, that was a part of the reason that I did those media interviews, is because I was like, “Look, my story is I don’t have to almost say anything.
They just have to introduce me,” and like, it, it, it goes against the narrative, right? It’s like powerful in itself without me saying anything. And so [00:16:00] I do think that the word “fatigue” does like enormous damage and just like the language around these illnesses really lets us down. Because, you know, “fatigue,” it means tiredness.
Like I don’t really blame, you know, someone, some people used to ask me like,
“What’s the difference between training tiredness and Long COVID tiredness?” And I don’t, it’s an annoying question, but I don’t really blame them for asking that, right? We use the word fatigue, and I used to say, you know, like the tiredness is, is downstream of me being sick.
I’m not tired. I’m sick. And in the same way [00:16:30] that, um, you know, if you have flu or the cold or food poisoning, you get tired because you’re sick, right? And we allow rest for a week. We understand that someone has to rest for a week if they’ve got an acute illness. But suddenly, if you, you’re ill for a long time, then there’s something else going on.
Like, it’s treated with suspicion and like, “Oh, maybe you need to just exercise a little bit more. Maybe you’re unfit.” Um, again, doesn’t make any sense once you break it down, but that’s, yeah. I, and I do think fatigue [00:17:00] is one of the reasons that we are in this mess, actually. I think the language is really important, and it, it really does let us down.
Betsy: Yeah, that, that makes a lot of sense. And I think it’s something that media outlets can do more about too. Like I think we’re always careful in explaining or using the term post-exertional malaise and that kind of thing. I know you’ve also kind of spoken out about, quote-unquote, “brain retraining programs,” programs like the Lightning Process. For people who are maybe [00:17:30] not as familiar with those, could you talk a little bit about your experiences with this and why [it’s harmful]?
Oonagh Cousins: Oh, yeah. So early on, and I, yeah, early on I did an interview where I talked about mental health. Um, and, um, Paul Parker got in touch and offered me to do the Lightning Process. The Lightning Process is one of these brain retraining programs where essentially the idea is that you are maintaining your symptoms through negative thought patterns.
This idea [00:18:00] that, again, I actually find it hard to explain, because it’s so, so silly. But it’s like, how you respond to the physical, experience of your, uh, illness and how you mentally think about it. And if you can break that cycle through thinking more positive thoughts and not thinking stressful negative thoughts about your symptoms, you can get better.
That’s the idea, anyway. I obviously found this really annoying and ridiculous. Um, I was out doing this course and I was like, “Well, you’re gaslighting me.” [00:18:30] And, um, yeah, I just… It was, you’re telling me it’s a psychological issue, and it’s not. I’ve got a physical illness. and also even from a mental health perspective, like supporting your mental health, like the toxic positivity of it was really gross.
It was like, “Never, ever, think a negative thing.” That’s not a healthy way to deal with your emotions. Um, so yeah. I find the whole thing really disgusting to be honest, because it’s exploiting people who are desperate to get better and also, [00:19:00] you know, they don’t really tell you what the course actually is.
They just say, “We’re gonna make you better. Pay me 1,000 pounds.” And also like there is value in, mental health support in, you know, supporting your nervous system through breathwork and mindfulness, these kinds of practices to calm, to shift. Our bodies are often in a sympathetic state, and finding ways to shift it into parasympathetic state is, that is something that can be helpful for people.
But it was like exploiting that and, um, yeah, just trying to make money out of people, out of [00:19:30] desperate people essentially. So I spoke to the BBC. Was it the BBC? Yeah, it was the BBC, did an investigation on it. Um, and I spoke to them about it, and I just talked about my experience and I just talked about how I felt very blamed and I felt like they were selling a cure for something that they didn’t understand and promising that they could make people better, and based on no science basically.
Um, and yeah, there’s lots of these programs all, um, there’s lots of them unfortunately, and it’s a constant battle. Um, but yeah, I was very happy to be able to do my little bit there. And I think again, like [00:20:00] I felt a responsibility, like the athlete thing really gives me credibility. Like when someone reads that article, ’cause I was meant to go to the Olympics, it’s a bit gross, right?
But that gives me a credibility that other people don’t get. So you know that I’m very happy and feel lucky to be able to do that.
Miles: Yeah, well said. I remember reading that full investigation too, and the BBC reporter also, I think, uh, did one of the courses as well and kind of in- narrated sort of what, uh, what she saw as she was experiencing it, and it was very [00:20:30] shocking, especially with all of the biology we have for Long COVID showing all these different potential mechanisms. One question I have is, I guess — Long COVID is really difficult because it, and really challenging because it not only sort of robs us of that we used to have, when we were more active before we developed it, but it also sort of takes away, a lot of our coping mechanisms, um, as we deal with isolation, grief, stress, being [00:21:00] gaslit, told that we’re experiencing this psychosomatic thing. Um, you know, I used to combat that, you know, those, uh, stress and those types of things with going for runs or lifting, um, and being active. But after getting Long COVID, I couldn’t do those things anymore. Um, so I’ve had to kind of find new ways to cope with, those, emotions with no outlet. Um, has there been anything that has been helpful for you sort of as [00:21:30] adapting from rowing or all these different active things you used to do to now finding some kind of outlet?
Oonagh Cousins: Yeah, it’s a really good question, and it’s, I th- something I talk a lot about with my friend who also had Long COVID. Um, it hits you twice over, so you… It takes away, you know, uh, yeah, it, it really impacts your mental health, obviously, and then it takes away your coping strategies as well. Um, it’s brutal.
Um, honestly, I mean, yeah, it’s, it’s really tough. Like, I don’t really think I would say I have an outlet as [00:22:00] so much as other coping mechanisms that I use, and a, a big one was, um, was, like, speaking to… I was, uh, lucky is a funny word. She was… My best friend had Long COVID, and so, um, we used to just spend hours on the phone talking to each other, trying to make sense of what we were experiencing.
Um, I do think that was a super powerful, uh, mechanism for my mental health. Like, I think I would’ve gone a bit crazy without her, to be honest. Um, yeah, making sense of what was happening and, like, validating each other’s experiences, I think that was [00:22:30] huge. And then the other thing was mindfulness and, um, figuring out what you are underneath achieving things in the day.
And, like, when you can’t do anything in the day, what, what is, who are, who, who am I? Yeah. And I think that was quite a powerful lesson, you know? There is, there is stuff underneath, like, without achieving anything in the day, that there is identity there. And I think it was like I didn’t totally identify with rowing ever.
I… It was definitely [00:23:00] part of my identity, but it wasn’t where I got ev- all sense of self from. I started it a bit later in my life, which probably helped. Um, but yeah, like, finding a sense of self, um, beneath that and, like, how to approach l- daily life. Like, that’s kind of what was my biggle- biggest mental health, uh, yeah, coping system, I guess, is just, “Okay, I might not get anything done today, but I’m still Oonagh,” you know, underneath it all.
Yeah.
Betsy: Yeah. I wanted to come back to [00:23:30] the idea of toughness, especially as we’re talking about mental health and the way that it impacts you and impacts people with Long COVID. Do you feel like your idea of toughness that you had previously as a professional athlete has changed or evolved?
Oonagh Cousins: Yes, definitely. Um, and yeah, I think, you know, one of the things we have talked about is, like, culture’s obsession with athleticism and exercise, and this idea that, like mind over matter is, [00:24:00] is a virtue. And there’s the belief that, like, the body is a machine that the mind drives, and if you’re tough enough, you can push through anything.
And, you know, “pain is weakness leaving the body.” Like, that’s something that people say, which is just … Yeah, I I don’t agree with that. Um, and I think athletes really are admired for this toughness as well, supposed toughness. But again, this is the narrative that we say about athletes, but I actually think, like, being a p- [00:24:30] professional athlete taught me something else, which was, you know, being a good athlete was listening intently to your body and working with your body, not against it.
And even at, like, peak performance, I was deeply aware, like, you know, in the race when you’re pushing at your hardest, for example, part of what made me a good athlete was that I really knew where my red line was, and I could sit on it, right? And that was never working against my body. That was working with it, deeply with it.
And then when I got sick- That helped me [00:25:00] again because I had this, like, really close relation– I could read my body well. It was such a realization to me that I’d learnt that skill, which is not a skill most people learn, right? But I’d spent 24/7 reading my body and understanding what it was telling me.
And so I think, I think there’s, like, neural connections that you make stronger or something. I don’t know. Or it’s a skill that you learn or something. I actually think outwardly, outside of high-performance sport, this is the narrative that we tell ourselves about toughness and resilience, and it’s like your ability to push through makes you a better person.
But actually, when you’re a professional athlete, that’s, that’s not what you [00:25:30] learn. You learn you’re working with your body, and that’s set me up really well for chronic illness. Um, and I think, yeah, there’s lots of examples of that where outside of professional sport, there’s a narrative that we tell that then contributes to, like, stigma and misunderstanding of chronic illness.
But actually, being an athlete helped me unlearn things. So stuff like, exercise as, like, a medicine’s universal prescription, for example. Like, more exercise is always good for you. As an athlete, you learn that there is a limit and, [00:26:00] like — and rest is a really important part of training, and getting fitter means you, you do the exercise, you stress your body, you do the rest, and then your body gets faster.
And if you don’t do the rest, you don’t get faster, right? And you learn recovery is respected, and it’s a skill that you learn. Our coaches used to tell us to recover hard, which meant, again, like I said earlier, like, be on the sofa doing nothing. And if you were seen to be doing other things, you were not focused, you were not professional.
So again, I think the story that people tell about sport outside of [00:26:30] sport is this, like, more is more is more, and exercise is always good for you, and more, more exercise is always, is gonna help you always. But as an athlete, that’s not what I learned. I kind of learnt the opposite. Like, that there was– there were limits, right?
And so I think that really– when, again, this thing of, like, when I heard that people were being prescribed exercise for their illness, I was like, “That is completely insane.” Like, what are you doing? Like, I had spent years knowing the opposite and respecting rest and respecting recovery and respecting my body [00:27:00] and not pushing through.
So I think it’s really– I do think sport is a really interesting, uh, frame for looking at chronic illness because there’s so many misunderstandings of sport as well that contribute to, contribute to this, like, misunderstanding of chronic illness. And actually, uh, professional sports and people who are doing sport really seriously have unlearned a lot of those things too.
Miles: That’s so well said. I think since getting sick and interviewing so many people with Long COVID and ME, like [00:27:30] severe ME and Long COVID, the mental fortitude that it takes to live with those illnesses is far beyond any marathon I’ve ever run or anything. It’s like the high-altitude mountaineering of sports.
It is such an intense experience. Um, and I think a lot of other people have talked about this, but it’s like the resiliency that you have to have to live with these diseases is just incredible, and it’s so under-acknowledged. [00:28:00] so
Oonagh Cousins: Totally agree. Yeah, and I wrote about this actually. We celebrate the, like, the discipline of, uh, Olympic athletes, and it’s nothing on the discipline and, like, resilience of someone with very severe ME.
I don’t wanna take away from people who win Olympic gold medals. It’s really cool. But we also need to recognize, yeah, uh, how hard it is [00:28:30] to… I mean, yeah, I just agree with everything that you said. It’s, like, probably the hardest thing. Yeah, I just can’t really believe how people do it. It’s amazing
Miles: We talked about this a little bit earlier, but there’s likely other athletes who, um, you know, are silently experiencing Long COVID right now, ME, other related diseases. Uh, what kind of advice would you have for them as they start [00:29:00] to navigate this? Obviously, there’s so many personal cases, um, and differences, but there any sort of advice that you wish you would’ve had early on?
Oonagh Cousins: Yeah. I mean, it’s like really trust your instincts, and listen to your body, and rest. Like, I did that a lot up to a point, and then when I stopped doing that, I paid the price. It, it really is as simple as that. Like, the temptation to listen — the thing that’s so difficult is that the temptation to listen to people who tell you that you can keep going is so [00:29:30] strong, because I didn’t wanna give up my rowing career, and so I wanted to believe the doctors around me who said I could keep going.
But there was a voice telling me to stop, and I didn’t listen. Um, and so… Even [in] non-athletes I hear this, is that people — Your, your body does tell you, instinct does know, and often it’s like, “I wish I’d listened to that voice.” And it’s, yeah, I say that to athletes as well. Um, listen to what your body’s telling you.
If it’s telling you to slow down, that’s not [00:30:00] weakness.
Betsy: I guess as we’re talking about these issues of culture and how culture perceives athletes, it seems like there’s also kind of a wider theme here of wanting to keep doing the thing that you’re doing, wanting to keep working, wanting to keep being productive. How do you kind of think about these issues, and how do we push back against them, uh, as we continue to and, [00:30:30] uh, ensure better portrayals of Long COVID in the media?
Oonagh Cousins: Yeah, super interesting. I think the overlap between sport and capitalism is strong here in this thing of productivity and achievement defining your worth. I do think sport in many ways is, like, the purest form of that. You know, your entire value is, um, based on how fast you can go from A to B, a time on a stopwatch.
And the Olympics is, like, the pointy end of that. And, you know, obviously the reverse of that is when you’re sick and you can’t do anything, [00:31:00] and in the world that makes you worthless and can add to this feeling of shame, um, that people have ’cause they’re sick, which is obviously just so deeply unfair. Um, you know, that being sick is hard enough as it is.
You don’t need to feel shame on top of that. Um, but I think that the experience, you know, talking to people, that is something that people, um, find very, very hard to shake, the guilt of not being able to do anything in the day. You know, it shows how ingrained this messaging is that your worth is based [00:31:30] on how much you can do in the day, which is plainly absurd, but it’s, it’s very ingrained.
And, uh, I don’t really have the answer ’cause it’s like h- how do we go work against it? ‘Cause it’s the capitalist system. But … and I don’t wanna put the agency on individuals, but I’m going to just in sense of, like, what I’ve done is just, like, not trying to not let that in. And I think I was lucky in that because I was an athlete, I had this [00:32:00] credibility, but I would not let anyone make me feel shame for being sick, and I was not feeling guilt for it.
Like, this is something, this is hard enough as it is, you know? This illness gaslights you, the world gaslights you. Like, there’s just so much gaslighting, and it’s like having real strength in your convictions that you are sick, you deserve to rest, like, what you’re experiencing is really hard, and you deserve to do what you need to do [00:32:30] in order to manage your illness.
Um, yeah, that’s, that’s, uh, that’s the way that I had to deal with it, I think, I guess. I don’t think that is a solution at all. We’ve got a lot more work to do, but just on an individual level, that is what I try to do.
Betsy: Yeah, I think that’s good advice, though. I feel like everybody needs to hear that at some point, even if they don’t have a chronic illness. Like, just, yeah, you, your body needs rest sometimes, especially if you’re sick.
Oonagh Cousins: Yeah
Miles: I do think people are coming to this idea both in and, like, even outside of the Long COVID community. There’s much less of a obsession with celebrity. It’s obviously still there in sport worship and stuff, but I think people are very much realizing, um, the importance of, like, supporting their own communities and, um, are falling out of love with the idea of capitalism that has been thrown on all of us for [00:33:30] so, so, so, so long
Oonagh Cousins: Yeah. Agreed
Miles: Um, you spend a lot of time explaining your illness to people who don’t understand it or don’t live with it, and you do this on a really large scale in the media, but that’s just something that our audience can really relate to. How do you cope with having to constantly explain yourself and your disease to people who maybe are inclined to not believe you or just really don’t get it?
Oonagh Cousins: Thank you. Yeah, it’s a good question. And I, it’s been a learning curve, to be honest. I- there are early interviews that I [00:34:00] did that I’m still, like, I don’t know if the word is traumatized, but I’m s- I’m still, like, really processing what I’m experiencing, and I kind of look at those interviews and I can’t really watch them back because they’re hitting stuff that I still haven’t processed, and so therefore can’t articulate an answer to.
And sometimes the questions that they ask are really… They really bring stuff up that kind of makes me freeze, and I can see it in the interview. Um, and so I have learnt to not [00:34:30] give interviews until I’m ready, and understanding what it feels like to be ready, um, which is something I didn’t know early on.
Um, and yeah, I mean, to be honest, I do find it tiring. I do find it tiring, and just like I, everyone else does, I guess, [in] explaining their illness. And I think over time I’ve gathered phrases and things that I can lean on that help, um, that you get kind of repeated questions that come up. And so I, there are things that I, uh, yeah, [00:35:00] repeat and I kind of lean, can lean on, which makes it easier.
Um, but I mean, I recently did an, a, a, quite a big interview for a, for a BBC podcast with Emma Barnett, and, like, that knocked me out for a day like… So I don’t really have an answer. I just, um, try and look after myself around it, I guess, and only do it when I’m feeling ready.
Miles: Thank you so much for taking the time to come on, taking the spoons. I know interviews are always, um, a big effort, so thank you so much for spending [00:35:30] some time with us today and sharing your experience and wisdom on Long COVID.
Oonagh Cousins: Thank you so much for having me. Um, interviews can be hard, but this is a very safe space to talk about Long COVID, so this was an easy one. Thank you.
Melanie Marich: A massive thanks to Oonagh for joining us and sharing her story. If you wanna follow her and her work, links will be in the episode description.
Research updates
Miles: This week in research: COVID-19 can cause long-term eye disorders. That’s according to a [00:36:00] cross-sectional study in Nature Communications. Researchers in Sweden compared one hundred people with Long COVID to thirty-two people who had COVID-19 and, quote, “recovered.” They found that immune dysregulation, dysautonomia, and nerve damage were linked to eye disorders, and the participants in the study had eye problems that were not detectable by standard tests.
Past research indicates that [00:36:30] retinal abnormalities could also serve as biomarkers to help diagnose Long COVID.
Melanie Marich: Long COVID may damage the dopamine system in your brain. That’s according to a small study in eBioMedicine that looked at brain imaging for 24 people with Long COVID and 24, quote, unquote, “healthy controls.” Researchers say these findings provide compelling evidence that Long COVID involves losing dopamine-releasing [00:37:00] neurons, but more research is still needed.
These findings could suggest dopamine signaling improvement as a target for potential [00:37:30] treatment
Miles: A U.K. clinical trial found that some repurposed drugs were not effective in treating Long COVID fatigue. The study looked at the blood thinner rivaroxaban, the anti-inflammatory drug colchicine, and a combination of the antihistamines famotidine and loratadine. Participants improved somewhat in the treatment arms, but so did those in the control arm, which means there were no significant differences between treatment and control, and the trial failed in its primary endpoint.
Researchers included nearly eight hundred people in the [00:38:30] platform trial, testing the drugs alongside a control arm of people who received, quote, “usual Long COVID care,” unquote, which included pacing support.
Outro
Betsy Ladyzhets: That’s all for this week’s episode.
Miles Griffis: In the meantime, we’ll continue reporting the information that you need.
Betsy Ladyzhets: Solidarity with everyone still here.
Melanie Marich: This podcast and The Sick Times are supported by you. You can help us keep this work going by donating on our website. Still Here is a production [00:39:00] of The Sick Times, a nonprofit newsroom chronicling the ongoing Long COVID crisis.
Our theme song for this episode is The Rude Mechanical Orchestra’s rendition of Which Side Are You On?, originally by Florence Reece. I’m Melanie Marich, and I produced this episode. Our engagement editor is Heather Hogan. Sophie Dimitriou designed our podcast cover art. And Miles Griffis and Betsy Ladyzhets are your co-hosts and The Sick Times co-founders.
Thanks for listening.
