This week, Off-Kilter returns to our ongoing series of conversations with social justice leaders digging into why, in the famous words of Audre Lorde, self-care is political warfare—and the role radical self-care plays in their own lives to sustain them in this work.

As we’ve explored a good bit in recent weeks as part of this series, the disability community harbors some of the greatest wisdom when it comes to radical self-care—with disabled people as modern-day oracles, as activist Alice Wong often puts it.

And to that end, for this week’s episode, Rebecca sat down with Lisa McCorkell, cofounder of the Patient Led Research Collaborative, a new organization that advocates for folks with long COVID; and Ryan Prior, a journalist-in-residence with TCF’s Disability Economic Justice Team, a board member of ME Action (which works to build awareness about a condition called ME/CFS), and author of The Long Haul.

Picking up on a conversation they had last July for the podcast about the patient advocacy revolution sparked by COVID long-haulers, they had a far-ranging conversation about what we can learn from the long COVID and ME/CFS communities when it comes to radical self-care, with a deep dive on the practice of “radical pacing”; the significance of self-care as political warfare to the chronic illness community; how patient advocacy itself is a form of self-care, particularly for folks with invisible chronic illnesses; the policy and cultural shifts needed to ensure basic practices like rest are universally available; and more.

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REBECCA VALLAS (HOST): Welcome to Off-Kilter, a podcast about the fight for economic liberation and what it will take to set us all free, powered by The Century Foundation. I’m Rebecca Vallas, and every week I talk with visionary leaders working to disrupt the off-kilter imbalance of power in the U.S. to build a society where everyone can thrive and experience the shared abundance we all deserve. And this week, we’re continuing Off-Kilter’s ongoing series of conversations with social justice leaders, digging into why, in the famous words of Audre Lorde, self-care is political warfare, and the role radical self-care plays in their own lives to sustain them in this work.

As we’ve explored a good bit in recent weeks as part of this series, the disability community harbors some of the greatest wisdom when it comes to radical self-care, with disabled people as modern-day oracles, as activist Alice Wong often puts it. And to that end, I really enjoyed sitting down with our next guests in that series: Lisa McCorkell, co-founder of the Patient Led Research Collaborative, a new organization that advocates for folks with long COVID, and Ryan Prior, a journalist-in-residence with The Century Foundation’s Disability Economic Justice team, a board member of ME Action, and author of The Long Haul. Picking up on a conversation we had last July for the podcast about the patient advocacy revolution sparked by COVID long haulers, we had a far-ranging conversation about what we can learn from the long COVID and ME/CFS communities when it comes to radical self-care, the significance of self-care as political warfare to the chronic illness community, how patient advocacy itself is a form of self-care, particularly for folks with invisible chronic illnesses, and the policy and cultural shifts needed to ensure basic practices like rest are universally available. So, without further ado, my conversation with Lisa and Ryan. Let’s take a listen. [upbeat music break]
Lisa, Ryan, it is so fun to be back in conversation with both of you, and it’s been a minute. It feels almost like it was just yesterday and yet several years ago at the same time that we had you both on Off-Kilter last July.

LISA MCCORKELL: Yeah, it does.

RYAN PRIOR: Thank you.

MCCORKELL: Time has really flown. [laughs] Good to be back.

PRIOR: Yeah, thank you for having us.

VALLAS: Well, and before we get into it, even though you’ve both been on the show, I do wanna give you each the chance to reintroduce yourself to Off-Kilter’s listeners. When I had you both on the podcast the last time, last July, it was part of our Americans with Disabilities Act, or ADA, anniversary series. And I’m really excited to have you both back on to actually kind of pick up the thread from that conversation and dig into some of the themes that came forward when we were in conversation in July as part of this ongoing series on radical self-care, because there was a lot in that conversation last year that really has a place as part of this series of conversations. And that was a big part of why I was excited to have you both back on.

But I do wanna give you both the chance to talk a little bit about who you are and how you come to this work to sort of remind Off-Kilter’s listeners who you are. So, I think I’m gonna turn it first to you, Lisa, and then to Ryan to talk a little bit about how do you come to disability rights and justice work? How do you come to patient advocacy work? And as you do a little bit of that sharing, I’ll ask you to talk a little bit about how you got involved with launching the organization that you represent, each of you. And so, Lisa, over to you first.

MCCORKELL: Awesome. Thank you. Yes, I’m Lisa McCorkell. I am one of the co-founders of Patient Led Research Collaborative, so that’s largely how I come to this work. Patient Led Research Collaborative is a group of people with long COVID who conduct research on long COVID and associated conditions. We are actually funders of research now, and we use our research as well as others’ research and patient experiences to advocate for better policies for people with long COVID, people with associated conditions like ME/CFS and dysautonomia, and all disabled people, since all of our fates are intertwined, and many policies that help one group help the whole group. So, that is what PLRC is about. And we came together in April of 2020 after many of us got COVID in March of 2020 and have not recovered since. And so, we all have long COVID, and that’s largely where I come to this work. That’s kind of how I got involved in patient advocacy.

I think I’ve had somewhat of a thread of it throughout my entire life when I really look back at my life. I was diagnosed with celiac disease when I was 12, which at the time, celiac wasn’t really known. All of the gluten-free food available with like complete trash, just so disgusting. And I joined, at that point, I joined some forums online that talked about celiac disease and really formed a community and learned a lot there. So, kind of I got an initial look into interacting with patients and really forming a community with patients early on in my life. And then my mom has multiple sclerosis and was diagnosed around the same time. And that really, I think, had a big impact on how I view disability, on how I view chronic illness, and got me interested in volunteering for organizations. I volunteered at the time for the National Multiple Sclerosis Society, and so kind of had this thread of being involved with patient groups as I got older but was really interested in policy. And so, went to policy school, got my master’s in public policy, and that’s what I was doing right as I got sick. I was just finishing up my policy degree. And so, I had been working at the State Department, the California State Department of Social Services, working on SNAP policies, food stamp policy, in the years between 2020 and 2022 and kind of doing the Patient Led Research Collaborative stuff on the side when I could. And then now I’m doing this work full time. So, I think—

VALLAS: And—

MCCORKELL: Go ahead.

VALLAS: No, I was gonna say, and we’re so lucky that you are, but I didn’t mean to interrupt you. Keep going, Lisa.

MCCORKELL: Oh, yeah. I just, I think all of that, all of those life experiences and the background of policy has really kind of brought me to where I am with this lens of disability justice and how do we ensure that the policies that we create are really going to be beneficial for the most marginalized in our society?

VALLAS: And we’ll get more into the Patient Led Research Collaborative and some of the story there and some of the work that you all have done as this conversation progresses, I’m sure. But I do wanna send folks to the episode in July, and it was part of a two-parter—and we’ve got it linked in show notes—but part of a two-parter series we did on long COVID back in July of 2022. So, for folks who were looking for more on the origin story of the Patient Led Research Collaborative, go give Lisa a listen in those episodes that we’ve got in show notes. I also just wanna note that I’ve had the pleasure of getting to work with you for the past year and change through the Disability Economic Justice Collaborative, and it’s been such a pleasure having you and the Patient Led Research Collaborative involved with that work.

And Ryan, you also are someone that I got to know a little bit through the Collaborative. You’re now a journalist-in-residence on a fellowship with the Disability Economic Justice Team at The Century Foundation, so I also have the pleasure of getting to work with you right now as a colleague. But you’ve also been involved with an organization called ME Action, and you have a little bit of a different story of how you come to this work. So, pick up where Lisa left off and share a little bit of your own story of how you come to patient advocacy and now to disability rights and justice work.

PRIOR: Yeah, thank you so much. And it’s been great getting to know you and working with you these past few months, and hopefully we can keep it going for as long as we can. But it started, for me, there’s a number of different starting points about where my story comes into health activism and long COVID and journalism and then ultimately this pandemic. But I’ll try. Just briefly, I came down with the post-viral illness myalgic encephalomyelitis, or chronic fatigue syndrome, when I was a high school student. And so, when I got to college, I spent a lot of time studying the medical humanities, and so, a number of really important literary texts: Susan Sontag Illness as Metaphor. And really, another important novel is The Death of Ivan Ilych by Leo Tolstoy. But one of the most important texts that I read when I first got sick was Walden by Henry David Thoreau. And that’s really a book about resting and about being meditative, about being separated from the rest of society, and forming oneself and thinking more about your vision for justice. And then that led directly into his famous essay, probably his most important work about civil disobedience. So, as I was thinking about my own selfhood and thinking about my relationship to society and thinking about how to pursue justice in the world, Walden and Civil Disobedience were two texts that were kind of forming the core of my being.

And I think throughout my work later on, graduating from college and then starting a documentary film production called Forgotten Plague and started my first non-profit, which is called the Blue Ribbon Foundation in 2013. And our documentary came out in 2015, and I joined the board of directors of a group called the ME Action Network. And that was modeled after the best practices from the Obama campaign, thinking about a digital first, scrappy political organization that was dedicated to health equity for people with our disease, ME/CFS. And for many years, that was what I did in conjunction with my, I was working full time at CNN and then on the side, was volunteering as a board member for ME Action. That was a new organization for the second half of the 2010s.

And going into 2020, we were starting to look like the veterans on the scene when this new disease, long COVID, emerged from the pandemic. And long COVID is not a new disease of all; it’s the new face of an older set of post-viral conditions, POTS and ME/CFS and mast cell activation syndrome and a number of other things that are part of long COVID. So, we were impressed when, to say the least, when Lisa’s group, Patient Led Research Collaborative, came along and was doing some of the really, really innovative work to characterize long COVID and changing the face of health activism and is similar to what happened with the HIV movement, with ACT UP and the Treatment Action Group in the 1980s. So, ME Action and PLRC and Body Politic Support Group are all very much aligned and figuring out how to channel patient voices and pursue a more just world.

VALLAS: With my thanks to both of you for sharing some of how you got to where each of you are now in doing this work, I’ll just note—and I did a little bit more of this up top in the intro—but my reason for wanting to come back together with the two of you— And actually, we were gonna have a third person join us who ended up being ill today and wasn’t able to join us, and I just wanna acknowledge her. That’s Netia McCray, who is with the Long COVID Advocacy Project, another leading organization doing this work. Let me get the name of that organization right, the COVID Longhaulers Advocacy Project. So, Netia, we’re missing you in this conversation right now. You’re here in spirit. But in the spirit of this conversation, we wanted to let you rest and do what you need to, to get better.
And so, with that as a little bit of segue, part of what I wanted to do in this conversation and part of my inspiration for having you both back on as part of this series about radical self-care is that you both bring not just policy and advocacy experience, but also lived experience, as you’ve both shared, of long COVID, and Ryan, in your case, ME/CFS. And there’s so much that we can and should learn from folks not just across the disability community in general, but in specific from folks with long COVID and ME/CFS, when it comes to radical self-care. Which to some people is a newer concept that’s starting to get a little more attention in recent years and is not at all a new concept for folks for whom this is everyday life. And what I would really love to do as we kind of move through this conversation is to give each of you a chance to be sources of wisdom for me to learn from, for others to learn from. And as I mentioned, I’m excited to pull on some of the threads from our conversation last July, which really is what inspired me to sit back down with both of you for this series.

So, the next question that I would wanna turn to both of you is in that vein. What is the significance of self-care being political warfare—that famous set of words from Audre Lorde that are really the throughline of this Off-Kilter series—what is the significance of self-care as political warfare to the patient advocacy community in particular? And Lisa, I’m gonna go back to you first on this by asking, what have you learned about radical self-care through your own experiences as an advocate and activist with long COVID, but also as a person with long COVID? And Ryan, you’ll get a chance to come in on this as well, but Lisa, over to you first with that.
MCCORKELL: Yeah, I think it’s really interesting. I mean, you touched on this. Part of, you know, in order to largely function, people with long COVID and ME/CFS need to pace and need to rest. That is how we’re able to get kind of anything done. And so, having that type of self-care is really what it is, is like knowing your body’s limits. It’s knowing when you need to rest and to really prioritize that above all else. And that is what’s going to enable you to live the rest of your life, essentially. And I think that is a really important aspect of this and is interesting ‘cause self-care is political warfare for everyone, but in particular for this community. Because we really can’t achieve what we want to without having that self-care and without prioritizing our own bodies first.

And this is something that I’ve struggled with. It’s not something that’s easy to do. I think I preach about it a lot, and it’s a lot harder to practice than to preach. And my COVID anniversary was a few weeks ago, and I set goals as part of kind of recognizing that anniversary. In previous anniversaries, I kind of looked back over what I had lost, and this anniversary, I really just found myself wanting to look forward. And how do I use this next year and how do I improve and how do I really take care of myself better? And one of those parts is practicing radical self-care. ‘Cause I’ve experienced, you know, advocacy, is just, it’s not easy in this world where we are constantly facing systemic barriers. We’re facing ableism. We’re facing all of these policies that are intended to kill disabled people and to make our outcomes worse. And so, it’s having that self-care is so needed, and it’s really difficult to implement. And I’m at the brink of burnout, as are many advocates, especially those of us who’ve been at this for three years. And I’ve just realized if I’m gonna be able to continue doing this work, I really need to prioritize the self-care and be able to really implement rest into my routine and to more practice what I preach.

And I think one of the things I’ve learned from other disability justice activists is how important community is in practicing self-care. And that while it is taking care of yourself, we need to rely on our community of other disabled people to enable us to do that self-care, right? I need to rely on my coworkers at PLRC when I know I need a day off, that they’ll be able, if they’re having a good symptom day, they’ll be able to kind of pick up my slack. Or that we don’t have really strict deadlines and that we are able to be flexible and just go based off of if we’re feeling okay and if we’re able to do what we’re able to do. And so, I think Leah Lakshmi’s book, Care Work, really talks well about this and the importance of creating care webs. And that while it is self-care, and we need to prioritize ourselves in resting and prioritizing our bodies, we also need to recognize how important community is in all of that and how we need to rely on each other to really prioritize our own self-care.

VALLAS: And Ryan, as I take that same question over to you, I’m gonna add a new wrinkle to it. So, same question. Would love to hear you react to the significance of self-care as political warfare to the patient advocacy community, which you are not just part of, but which you actually now cover as a journalist. But I wanna add the wrinkle of how is patient advocacy itself part of radical self-care? And I ask that question with the backdrop of not only my own awareness and my own awareness of the two of you having experienced what I’m gonna describe. But the last time we were all in conversation for this podcast, a big part of that discussion was both of you talking about what it looks like to learn to trust yourself as the expert on your own body and your own health, even in the face of what can sometimes be quite explicit gaslighting from medical professionals, and it feels like that’s got a place in this conversation as well. So, Ryan, your thoughts on how patient advocacy itself is part of radical self-care, and more broadly, the significance of self-care being political warfare to this community that you now cover as a journalist?

PRIOR: Yeah. So, yeah. In my career, I think of myself as a political journalist probably first and foremost, and then second, as someone who covers health and science. So, as a science writer, a lot of our job is to talk about why are people sick and how do they get better? And so, the point of health advocacy is really just about how do we cure diseases, is how I’ve thought about it for as long as I’ve been involved with it. And nobody would ever do health advocacy unless they had a personal need, either through theirselves or through a family member, so that at its heart, we’re trying to solve problems. And for me, dealing with a disease in high school that was incurable, I’ll come back to Henry David Thoreau again, a couple lines that really changed how I viewed my relationship to the world and then ultimately, the quest for my own health as a political act. One of them was this idea is simplify, simplify, simplify. As you simplify your life, the laws of the universe will become simpler as well. And what that meant for me was that the illness was a profound teacher. It was going to help me reset my own priorities in life, and it was going to make, in some ways, give me a set of principles or a reservoir of wisdom that many people weren’t gonna get until ten, 20, 30 years down the road. And I had the benefit of learning all these things as a teenager. And Thoreau talks about in this essay, Civil Disobedience, to live your life as a counter-friction to stop the machine. And that was really a line that stopped me in my tracks and really, I think, changed the way that I thought about the world. And if I was gonna live my life as a kind of friction to stop the machine, part of what that meant is I had to step away from the machine itself and form my own self, as I mentioned.

So, there’s a couple broad principles about how you improve when you have ME/CFS or long COVID. And a lot of it has to do with pacing. A lot of it is radical rest. And Ron Davis, who’s one of the, is a founder of the Human Genome Project, and he’s one of the most renowned ME/CFS researchers at Stanford, he told me an interesting story where somebody was disabled by ME/CFS, and they vowed to just do nothing for an entire year. And this was one of the few cases he’d ever encountered of someone mounting a full recovery. It’s totally impossible for most people to keep this vow to do absolutely nothing, to spend all that time in bed resting for an entire year. But I think it’s a useful parable to think about why these types of illnesses exist and how you do improve on it. And to the degree that it’s society itself that might have processes baked into it that make us more ill, I think that’s a profound philosophical viewpoint that all of us would have to absorb that radical rest is the way to get through not all illnesses, I mean, not most, but at least some. That this is how we cope with the world. And once you learn how to set your own priorities and build your own life outside of the standard processes, then you’re going to be that much more (audio cuts out) for people as an advocate for calling for change for everybody else.

 

VALLAS: And I wanna come back to that note about how rest is not something that is equitably distributed, to vastly understate the set of facts that we have with respect to our current public policy landscape. So, we’re gonna come back to that in some depth. But Lisa, I wanna bring you back in on that second piece that I just threw to Ryan, just to see if you have anything you wanna add around how patient advocacy itself is actually part of radical self-care. You spoke really eloquently and also quite disturbingly about some of your experiences when we spoke last July for the podcast around gaslighting early on in the COVID pandemic and not being believed by medical professionals. And of course, that was not just your experience. That’s a set of experiences that many, many, many people with long COVID have described. So, anything you wanna add about patient advocacy itself as actually being part of radical self-care.

MCCORKELL: Yeah, absolutely. I mean, I think Ryan touched on this. Many of us come to patient advocacy out of desperation and out of a need to improve our own outcomes. And that, I think, is, it is part of radical self-care. It’s kind of taking power back and trying to have input and some sway into what is going to happen to you and how your body is going to be treated and how society treats you. And so, I definitely feel that part of even starting Patient Led Research Collaborative, part of doing a lot of this advocacy work is yes, to benefit my community and to try to improve outcomes for people with long COVID and all disabled people. And it’s also to benefit me and to try to get treatments for myself and to try to ensure that if I am trying to seek care from a doctor, that their immediate response is not gonna be to dismiss my symptoms. And so, it’s a reactionary effort. It’s like a, it’s a reaction to facing discrimination, to facing barriers in society and is really trying to take back some of that power and to wield what we have as a community to improve all of our outcomes. And that’s, you know, I think there’s nothing more like self-care than that. Like, it’s something that is something we’re doing to try to survive personally and as a community.

VALLAS: And I wanna stay with you for just a moment there, Lisa, because a concept that both of you have now brought up, and it also came up last July, is this concept of radical pacing. And we’ll talk more about rest as well, and the two go hand in hand to some extent. But for anyone who’s not familiar with radical pacing, and maybe it’s clear just through the pairing of words, but maybe it’s not, for folks who are new to this, how does radical pacing show up for you, Lisa, as a self-care practice that allows you to stay engaged in activism work while you are also a person living with a serious chronic illness? And are there any lessons or tips or maybe anecdotes that you feel comfortable sharing about kind of how it has shown up for you as a self-care practice in your work?

MCCORKELL: Yeah. So, what pacing is, is it’s largely a management strategy for doing activity. And so, it’s really important for people to do who have the symptom of post-exertional malaise, which is the exacerbation of symptoms after any type of exertion. It’s usually delayed, and it can, it’s one of the most common symptoms of long COVID. It’s the cardinal symptom of ME/CFS. And one of the most effective techniques to managing post-exertional malaise is pacing. And that’s people who pace are people who rest when they’re unable to…when they don’t have the energy, when they’re feeling tired. They’re being more active when they’re able. But then the really important part of pacing is to rest even before and prepare for maybe more strenuous events and to rest after. So, it’s really kind of evaluating your life and your activities and planning around those and being able to schedule rest in and recognizing when your body needs to rest and honoring that instead of pushing through your symptoms. That’s really the most important thing.

And so, something that I’ve really learned from pacing is to honor my body, to honor the signals when it’s telling me it’s time to stop, to be communicative with my team, to communicate with any friends or family like, “Hey, I’m crashing right now. I need to rest.” Or okay, I need to go to the grocery store, or I need to run an errand that I know will be high energy. I know I need to rest ahead of time in order to hopefully prevent a crash after. And I think one of the things I’ve learned with pacing is what I try to do is to not just have those activities be work-based, you know, or work or life requirements like errands and stuff like that, but to also incorporate some of the things I love doing as some of those activities and trying to incorporate just going for a walk because I love going for walks and having it be something that brings me joy and using some of my energy to do activities that really bring me joy and pacing around that. And that has really been important to me as part of my radical pacing in order to really stay engaged in advocacy, to feel like I am able to bring my whole self, is to make sure that I’m still incorporating the things that I love.

And I also wanna mention I have mild long COVID, and so I’m able to do a lot more than many people with long COVID. And so, I feel very lucky that I can do a lot of like some things that I enjoy and that I’m able to pace around that. But I do think to the extent that it’s possible, when people can use some of their energy to do the things that they love to do, to really enjoy things, that’s a really important part of considering pacing in your life is to really focus in and incorporate those things that you love.

VALLAS: And I’ll be super honest ‘cause I’ve tried to be somewhat out and vulnerable in a number of these episodes throughout the series about radical self-care. But my own learning around the value of pacing, radical or otherwise, it didn’t come until I actually had burned myself out. I was in full burnout and was still working through it. So, I suppose some people would describe what I was experiencing for a number of years as functional burnout, but it took me actually burning out doing this work to start to realize what maybe would’ve been ideal for me to have learned quite some time ago in doing this work, especially as someone with chronic illness, and even just starting to learn how not to have my foot on the gas always at the same pace because of what had come to feel like what I needed to do to keep up with doing social justice work where there’s always a crisis, there’s always injustice, there’s always something to be fighting back against or fighting in service of. That was a learning that came the hard way for me, and it’s part of why I’m passionate about having this conversation as part of this series. Ryan, is there anything that you wanna add to what Lisa shared about radical pacing and how it shows up for you?

PRIOR: No. Well, yeah. I’ll add a couple little notes here is that how it showed up for me and how it frequently continues to show up for me is that if it’s impossible to, let’s say, run a half marathon or run a marathon, which might’ve been my previous set of goals for what I had been doing in my spare time in terms of intense athletic training, there’s other benefits of what do you do instead? And so, there’s, can spend a lot more time reading. And when I first got sick, I was in bed a lot. And therefore, one of the activities that was easiest to do with less sensory stimulation, ‘cause sensory stimulation is a big issue for people with ME and with long COVID, so I was deeply, reading was something that was the most resonant with the way that my mind and body were wired. And I think that that created a number of advantages for me, that I wasn’t doing as many sports as some of my peers were doing, but I was reading a lot of presidential biographies.

And I’m reminded of a young JFK who was frequently in the infirmary in his prep school, and he was always sick and always reading great books of history. And so, I think that there’s a lot to be learned about what an illness can do as far as forging one’s character and building experiences and wisdom that are useful longer range. And a lot of our greatest leaders have had similar experiences. Abraham Lincoln suffered from depression. FDR benefited, I don’t wanna say “benefited” from polio, but sort of was energized in some ways to change his own political agenda because of his own experiences with a disability. Bob Dole had a disability and used that as fuel for campaigning for the Americans with Disabilities Act later on. So, I think that you can use these experiences and harness them for good and become a better leader because of it.

VALLAS: I appreciate you throwing all of that in, Ryan, and I’m really looking forward to reading that piece that I know you’re researching and writing right now about disabled presidents. So, a nice little teaser there for that piece.

But I feel like the right place to go with this conversation next is we’ve been talking a lot about what are the practices, what are the ideal ways to engage with those practices, in service of self-care so that one is able not just to maintain one’s health at whatever status is possible, but also so that one can continue to do social justice and activism work sustainably. But what we haven’t acknowledged yet, and what we would be remiss if we did not spend some real time talking about, is the immense privilege that it requires to be able to do something like radical pacing or even to rest when you need to. And so, I wanted to spend some real time digging into that piece of the conversation as well.

And so, as I make that pivot, Ryan, I’m gonna take this to you first. A big learning since the start of the COVID-19 pandemic—which is unbelievably four years ago at this point, four years that we’re marking now just this past month—but a big learning since the start of the pandemic has been the importance of rest as one of the single most important forms of treatment for people with COVID and for minimizing the chance that someone is gonna end up with long COVID. And you mentioned this just a little bit before, Ryan, but I wanna give you a chance to talk a little bit more about this and to get into the broader social policy implications. Rest is not something that is equitably accessible in this country, in the United States of America, in 2023. Millions of people lack access to paid leave, lack access to paid sick days, and in some cases, even unpaid sick days, through their jobs. And we have huge, massive stinkin’ holes across our public policy fabric, which we spend a lot of time talking about on this podcast, that leave rest out of reach for, frankly, a huge swath of the population.

And we have been trying to bridge the micro and the macro throughout this series of conversations about self-care as political warfare, largely because self-care so often gets discussed as just something that’s an individual process or an individual choice. But as we sort of bridge the micro and the macro, it feels like we really need to bring in the lack of access that so many people have in this country to rest, despite the fact that it is not just a basic human need, but that it is such an important practice for maintaining health, whether or not someone is looking to recover from or trying to recover from a serious illness like COVID. And Ryan, I’m gonna take this to you first, in part because you wrote a really fabulous piece last year for The Century Foundation on this very subject. And so, talk a little bit about the importance of rest in the context of COVID recovery, and yet on the flip side, why rest is out of reach for so many people in the U.S.

PRIOR: So, the science would say that rest is the smartest treatment. And so, unfortunately, rest does not come in pill form. I would love if we could design huge clinical trials, and everybody gets ten milligrams of rest. And they take it for two weeks, and they get better. And we can just manufacture this and administer it in huge doses. Unfortunately for this disease, the standard of care isn’t one that we can obviously put into little bottles and ship out the pharmacies. So, how do you create a framework where people can rest? And in my own experience, I’ve benefited from a number of different policies. I was on a Hospital/Homebound program when I was in high school and then disability accommodations that gave me a leg up during college and then later on in my full-time job at CNN. That isn’t the case for people who, if you’re working full time and you’re not working for an employer that provides short-term disability insurance, or if you’re not able to get that signed off by a doctor who signs those things saying that this person is hereby prescribed bedrest for a month, that doesn’t really happen for a long COVID.
So, there’s a sh…. In the U.S. there is no federal short-term disability benefit, and that would be a policy innovation that would do a lot of good for a lot of people. It would fill a vacuum. Once you are disabled for a certain amount of time, you can qualify for long-term disability insurance, but many people who get ME/CFS or long COVID, if they don’t have an option to rest in the short term, then they’re gonna damage themselves and become potentially permanently disabled longer term. So, if you have this, if you figure out a way to fill this donut hole in between the paid sick days and then long-term disability, the short-term disability is an interesting place to play in the policy space.

A number of states—I forget how many off the top of my head now—do offer some form of temporary disability insurance, California being one of them. And so, I think you could figure out ways at the state level to improve the patchwork of policies that are already available. You could figure out ways to get more and more large companies to offer short-term disability insurance. And you could figure a way to do this ultimately at the federal level. I think it would be very helpful, and it would be also a good benefit available for more and more freelancers and gig workers in today’s economy who wouldn’t necessarily have the benefit of, in my case, I was working for CNN, which is owned by Time Warner or Warner Media, a large corporation. We had the resources available where employees could take short-term disability, and all I did was get a doctor to sign off on this. But your average Uber driver isn’t gonna be in a situation where they can qualify for those benefits. So, the piece outlines some ideas about where I would begin to start with designing a short-term disability policy for the U.S. It’s something that I advocate for building out further. But the core idea that I wanted to write about in that piece is that rest is the most recommended treatment for long COVID. And so, in order to actually make it available for the most people, if you can’t do that in a standard clinical trial (audio cuts out) a pill, but it could be done more in the realm of social policy.

 

VALLAS: And Lisa, I’ll bring you in there as well because as you referenced up top, you actually bridge the policy world and then also the specialized expertise that you’ve gained through not just policy and research, but also lived experience of long COVID. And talk a little bit about anything you wanna add in terms of our public policy landscape currently and what changes we would need to see to enable people to have access to rest in a more humane and equitable way.

MCCORKELL: Yeah, I am very passionate about this. It’s like having access to paid leave, sick days, disability, all of that would absolutely help. That’s not gonna hurt. Those are policies we all need and people have been calling for, for a long time. But it’s not the only piece of the puzzle for someone’s ability to properly rest. And so much of it has to do with the culture that we have in our society right now. It is not gonna be possible to rest without a workplace that creates the environment for it, so not only has the policies but encourages rest and really values rest. How can someone really rest if they’re worried about how they’re gonna pay their medical bills or whether their symptoms are gonna be dismissed? It’s not just creating the time to rest, but it’s creating an environment where it’s not just possible due to policies, but it’s encouraged to rest. And that that would really take a complete restructuring and change in values that would enable people to rest in the current society that we live in. So, it’s gonna take a lot to actually create that environment, and it’s gonna be against a lot of the structures that we currently have in place. But that is really what I see as what’s needed. It’s not just having the paid sick time and all of that, but it’s really reframing how we view work, it’s reframing how we approach healthcare, and giving people the tools and encouraging them to actually rest and to create a society where this is seen as valuable as it actually is for people’s well-being.

VALLAS: I really appreciate you bringing in the note on culture change as well, right? Because, of course, on this show we talk a lot about public policy, but it’s really critical to bring in where we have cultural limitations and cultural blocks that are actually further perpetuating social ills that are also traceable back to public policy failures, because it’s very easy to say, “Oh, okay, here’s the policy fix,” but then it ends up not being enough if we don’t have an accompanying cultural shift as well. And on the flip side, sometimes you can change culture while you still haven’t done all the things you wanna do to change public policy. And I feel like that’s just, it’s always a good reminder in all of these conversations around self-care, there is so much that each of us as individuals can do to actually bring about and foster and facilitate that type of culture change. Even if you feel like, “Oh, I’m just one person! What difference does it make if I’m just one person?” Well, even just making different choices yourself within the realm of whatever is possible for you based on the level of privilege that you have, those kinds of choices end up actually reverberating like throwing a stone into a pond, and you see the ripples come out in ways that other people see.

And I have to say, this is something that’s been a real learning for me since starting to make very different choices myself on the other side of functional burnout and coming through that my own self in these past few years. I mean, I have a number of people in my life who they observe. And it’s so interesting to me. Sometimes I’m surprised that people are even paying attention. It’s but, you know, people will observe—and this is just my own experience—when I make different choices than the choices I used to make. And for example, as I’ve mentioned on this show before, making the choice not to work while sick because working through illness is a badge of honor, culturally, in so many advocacy and activism and other professional workspaces. And so, even just making different choices as an individual can actually reverberate into culture change, let alone for anyone who’s listening to this episode right now and might be in a position of management or of leadership in some way of an organization or of a team or whatever entity or structure where they have the ability to make different choices when it comes to what that workplace looks like.

And I’ll just give a plug to The Century Foundation, which is probably the workplace that has been most supportive of rest that I have ever worked at. [laughs] And it was not something I was expecting when I came over to TCF about a year and a half ago. It’s a think tank that works in Washington D.C. and New York and lots of high-profile, powerful people doing national level work. And yet, credit where it’s due, this is a place that really, really values, and vocally values, rest and makes that part of the culture so it is possible to do and just to say that as an aside.

I also wanna note—and this is maybe a good segue into our last couple of questions here, while I still have both of you—but while we’ve been talking, a little reminder came in on my phone. I use reminders for not just tasks that I need to do, but also for things that I want to remember and keep front of mind in my conscious awareness. One of my reminders came through while we were talking that asked the question, “Am I in my body?” [delighted laugh] And that might sound a little weird as a reminder to have on your phone, but part of why I have that come through several times throughout the day is because I know that I can fall into the habit of being a mind that’s on top of a body that’s not in touch with my body and that ignores and doesn’t listen to the signals that tell me when I need rest. And so, sometimes actually seeing that reminder helps me have the moment of going, “Okay, wait! How am I feeling?” And then I feel into it, and I go, “Oh! I need to take a break. It’s been hours since I took a break, and I’ve been sitting in this one spot.” So, am I in my body? Answer? Yes, right now. But thank you, self, for asking that question.

So, I’m gonna take that into then, Ryan, back to you to ask, is there any wisdom that you wanna share about how advocates, and especially how patient advocates and folks with chronic illnesses and disabilities, can navigate self-care and these kinds of practices like rest and radical pacing and others that we’ve been talking about in the context of a pandemic? And I feel like, Lisa, you were just starting to get into some of this as well, and so I’ll bring you in on this, too. But there can be this feeling—and it’s understandable, and it’s justifiable in the context of a global pandemic that is not over—there can be a feeling of constant, non-stop urgency. There can be a feeling that it isn’t safe to rest while people are dying, while people are not getting what they need in terms of basic human needs if they have long COVID, for example. And this is also a pandemic that has caused it to become even more dangerous for disabled and chronically ill people even just to exist. So, any thoughts, Ryan, and then over to you, Lisa as well, when it comes to how advocates, and in particular chronically ill and disabled advocates, can navigate self-care in the context of a pandemic?

PRIOR: Yeah. I think it’s thinking about your own locus of control. Like, what do you actually have control over versus what is sort of a set of chaos that’s happening outside of you that you can’t control, is one bucket of that. A second bucket of it is how much of this is the news media giving you things to worry about versus what is an actual crisis that matters directly to you? So, filtering out the noise of compounding crises all over the place. And having been someone who my job was to go into a newsroom every day, and no matter what, something, some country had invaded some other country. Obama got off someplace. There was a mass shooting somewhere. There was always some horror happening somewhere. And we have a benefit now that we get alerts on our phone about something blowing up or our country invading another country. So, that is all (audio cuts out) ways that one could very much design their own digital hygiene to filter out. And what you mentioned just now about designing your own digital hygiene to prompt you about positive things, meditative mantras and the like, those are all ways, getting rid of all the notifications and the social media that is going to only add more clutter to your life. And then creating a digital presence where you’re building yourself up and building others up. And there can be a range of what, we could do a whole podcast about this specific question.

But then coming back to my previous point about what do you have control over? And I, having now finished my book and getting a new lease on life, I think, and having a lot more freedom, it gives me a chance to spend a lot more time reading novels, playing the guitar, painting, riding my bike. And for those who are immunocompromised or don’t wanna be in large groups of people, those are all activities that don’t require being around people. So, those are, it works both ways. But as you figure out ways where you can permit yourself to pursue your passions that don’t involve being in touch with a crisis, and yeah, build out a personal and digital life and make sure you build out your own spiritual life. A book I’ll mention is The Sabbath by Abraham Joshua Heschel, who’s a famous rabbi who marched with Dr. King. His most important work is The Sabbath, which doesn’t really have that much going on from a social justice standpoint, but it is doing social justice work by talking about the need to carve out our own space and our own time. And the sabbath being once a week for an entire day. And so, carve out a time every week where you’re free of these concerns, and that will enable you to get back into the next week all that much more stronger and empowered.

VALLAS: My Jewish side of my family thanks you for that answer. And my mom would really like to know why [laughing] I’m not coming over for dinner on the sabbath. So, thanks. Thanks and also not thanks for that, Ryan.

PRIOR: [laughs]

VALLAS: I say that mostly in jest. Love you, Mom.
Lisa, same question to you, and then you’re gonna end up getting the last word. So, I’ll also ask you, as you round us out, are there any other self-care practices in addition to the ones that we’ve talked about that you wanna plug that you found are important for you and for your success and sustainability in this work?

MCCORKELL: Yeah. So, I think, I mean, for your first question, it is really tough to practice self-care in an ongoing pandemic. I think particularly for people who don’t have the privilege of working from home or are forced to be out and a frontline worker and are being exposed to a virus that is killing and disabling our community, it’s really tough. And I think it’s important to acknowledge that and to recognize how difficult the last three years have been and how society has largely treated disabled people as disposable. And to recognize as part of your self-care just the impact that that has and that that is, it’s a traumatic thing to go through. It’s a traumatic thing to experience and to see your community be devalued. And I think to just like, to sit in that and recognize that, I think, is really important to do.
And then to also be in community with other people, whether virtually is one of the more accessible ways if you have Internet access, and to really be with people who align with your values, who align with your identity, and relying on your community. I think I mentioned this earlier, but such an important part of self-care is being in community with other people and having your community remind you to take care of yourself and to pick you up when you’re down and to take on tasks that you’re unable to and to provide mutual aid. Being open to those things, being willing to accept help is also part of self-care. And so, I think that’s one thing that I’ve learned and really tried to embed in my own life that I was not practiced in at all prior to having long COVID is accepting help and really counting and relying on my community to help me with self-care and to help me prioritize rest.

I love the reminder that you said that, “I am in my body?” I think reminders on your phone for checking in throughout the day, making sure you’re in an okay place and recognizing, okay, do I need to take a break right now, or “what does my body need right now?” and listening to that and honoring that is another really important piece of self-care. But yeah, I think it’s such a huge part of it is being in community with others and just recognizing the toll that this all has taken, I think, is something that I’ve really tried to embed in my life. ‘Cause otherwise it’s, you know, it feels like you don’t wanna minimize what is happening to you and to your community. That is kind of the opposite of self-care. So, acknowledging what’s happening and being in community with other people who agree with your views and are able to support you, I think, have been really critical for me over the last three years.

VALLAS: Well, huge gratitude to both of you for your work, for your wisdom, and for your being willing to come back on the show and to share so much of this wisdom with me, with Off-Kilter’s listeners. Last time that we were in conversation for the podcast, Ryan invoked an advocate named Rivka Solomon in saying, “The long haulers have all the political capital, but the ME patients have all the wisdom.” And I wanna just make a slight, friendly amendment to that and say that I feel at this point the folks with ME and the folks with long COVID are the ones with tons of the wisdom for other folks who are looking to play some catch-up when it comes to engaging with the concept of radical self-care in a way that doesn’t just look like bubble baths, but looks like helping ensure that we can be sustainably involved with this work.

Lisa McCorkell is co-founder of the Patient Led Research Collaborative. Ryan Prior is a journalist, a board member of ME Action, and also a journalist-in-residence at The Century Foundation. And I’m so excited to promote both of your work in our show notes. So, if you’re interested in learning more about those organizations or about Lisa or Ryan’s work, check out our show notes for lots more. Ryan is also the author of The Long Haul, which you can find a link to in show notes as well. Huge gratitude to both of you. And it’s always fun being in conversation, but I’m really looking forward to seeing both of you in person in a couple of weeks at the Disability Economic Justice Collaborative’s anniversary! So, excited for more to come, but excited for this conversation in the meantime. [theme music returns]

MCCORKELL: Thank you so much. Can’t wait to see you in person.

PRIOR: Yeah, thanks so much for having us.

VALLAS: And that does it for this week’s show. Off-Kilter is powered by The Century Foundation and produced by We Act Radio, with a special shoutout to executive producer Troy Miller and his merry band of farm animals, and the phenomenal Kings Floyd, who keeps us all in line week to week. Transcripts, which help us make the show accessible, are courtesy of Cheryl Green and her fabulous feline coworker, RouRou. Find us every week on Apple Podcasts, Spotify, or wherever you get your pods. And if you like what we do with the podcast, send us some love by hitting the subscribe button and rating and reviewing the show on Apple Podcasts to help other folks find the pod. It really does help. Thanks again for listening and see you next week.

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