This fall, activist and actor Matt McGorry disclosed on social media that he has Long COVID in an educational, two-part video series. In the videos, shared with over a million followers, McGorry talked about his experience with the disease and summarized key scientific information. He described the project as a “catch-up” for viewers unaware of Long COVID and as a way to preserve his emotional and physical energy in explaining the disease for people in his life.
Known for his work on popular television shows “Orange is the New Black,” “How To Get Away with Murder,” and “Archive 81,” McGorry is also a longtime activist. He’s advocated for police reform and abolition, working with groups like Showing Up for Racial Justice and the Los Angeles chapter of White People for Black Lives, among other causes.
McGorry spoke with The Sick Times over the phone while in New York. He discussed his experience with Long COVID and how the disease — as well as the stigma and denial that surrounds it — has affected his work as an actor. He also called on society to show solidarity with disabled people by continuing to take COVID-19 precautions like masking. This interview has been condensed and lightly edited for clarity.
Key points you should know:
- Actor and activist Matt McGorry recently shared a viral two-part video series about his experience with Long COVID. The videos aimed to help people unaware of the disease “catch up” with a summary of research and the ongoing risks of COVID-19.
- In an interview with The Sick Times, McGorry reflected on the widespread denial about the disease, both personally and in society, emphasizing the emotional labor often involved in educating others about Long COVID.
- Discussing his baseline, he talked about how wished he had adopted pacing and energy conservation techniques earlier on. If he started using these techniques earlier, he might not have as low of a health baseline now, he said.
- McGorry also discussed the intimate experience of caregiving for a loved one with more severe Long COVID, as well as for his father, who passed from pancreatic cancer in 2021.
- Lastly, he discussed how Long COVID and a lack of COVID-19 precaution measures in the film and television industry have affected his work as an actor. He called for greater protections for people with disabilities, advocating for wearing high quality masks to protect yourself and others from COVID-19.
Miles W. Griffis: You created a two-part series on Long COVID that went viral and reached a wide audience on social media. It was very informative, including extensive research and citations. What inspired you to publicly share your experience with Long COVID in this educational format?
Matt McGorry: Thanks for doing the interview. I really appreciate the work The Sick Times is doing.
I wanted to create a way of basically getting people up to speed with what they would need to know from me — that wouldn’t require me to constantly have to do that sort of emotional labor every time — in addition to a tool that other people could use for that same purpose.
In my personal life, I talk a lot about Long COVID pretty much everywhere I go. I mask in public, so there’s ample reason to to bring it up.
Whether it’s the supermarket checkout person or someone who’s drawn 27 vials of my blood, I always bring it up. I consistently find people who don’t know what Long COVID is, and who think that the only negative outcomes of COVID are either death or hospitalization and don’t understand that actually the much higher likelihood is being disabled. I try to spread that word as much as possible.
It’s been basically a little more than a year since I was first diagnosed with Long COVID and [started] trying to figure out how to live my life. It’s been an incredibly difficult and traumatic year.
MG: I’m so sorry to hear it. I think both videos did a great job explaining it and giving people the opportunity to catch up on the research and stigma about the disease. Did your background as an activist help you prepare at all to do this kind of advocacy and educational work for Long COVID?
MM: From my organizing and activist background, particularly with Showing Up for Racial Justice and the LA chapter of White People for Black Lives, we talk about having different “on ramps” for people at different stages of their journey. What I’ve found effective, in terms of both my own unlearning and what I expect from others, is learning from other social justice movements.
A key lesson I’ve taken away is that when you hold privilege in a certain area, it’s not the responsibility of the marginalized person to educate you, right? This applies across all systems of oppression. I’ve internalized this for myself too — if I don’t owe anyone this kind of emotional labor, I expect the same from people in my life.
I’ve had to set clear boundaries, even with people I care about. For example, I had a painful breakup with a best friend a few months ago. He was genuinely trying to learn more about disability justice, but I told him, “I can’t be your educator on this.” It costs too much emotionally, especially when he was still micro-aggressing, despite his intentions. The relationship ended, though I left the door open if he was truly ready to take this on.
Sharing my medical history and trauma with, say, a rideshare driver, in the hope of sparking some understanding, became too exhausting. The cost of constantly educating people felt too high. I realized I needed to focus on protecting my peace.
The cost of constantly educating people felt too high. I realized I needed to focus on protecting my peace.
Matt McGorry
MG: Another big topic in your video was your original denial about having Long COVID, and also society’s denial of the disease. Why do you think there is so much denial about Long COVID and the ongoing pandemic?
MM: I think it’s easy to be in denial about it. It’s rare to find a doctor who really understands Long COVID. If a doctor doesn’t acknowledge it, people often assume it’s not real. The fact that there’s such a wide range of severity of symptoms and presentations also make it hard to recognize. What’s missing as a part of that equation often is that [more mild forms of Long COVID can get worse] when you get reinfected.
One thing that I’ve been thinking about is how people might think that because there aren’t any approved treatments or cures, there’s nothing to be done about it. And I think for people who are new to it, that can take on the meaning of, therefore, there’s nothing to do about it.
A friend of mine who is an actor, messaged me after the video and said that he feels like he’s been in denial of about it, that he might have some post-COVID, Long COVID stuff, but said he knows that there’s really nothing to do about it, basically. He said he’s going to start masking more in public places and appreciated the reminder [of my videos].
Even for myself, when I first realized I had Long COVID, I [thought], “okay, I guess they don’t have any approved treatments.” It was stressful. It’s so stressful and such work to take on a complex chronic illness and try and figure out what to do when it’s already hard to access care. But still, while there are no approved treatments, there are things that can be done to help at times. It really is a trial and error approach, to mitigate things from getting worse. [It’s so important] to be conservative about one’s energy if you have myalgic encephalomyelitis [ME] and Long COVID.
If I had discovered and really understood pacing sooner, I feel like I probably would have a better baseline than I do right now. I was still working out, lifting weights, even going to physical therapy for [an injury]. If I had had that knowledge sooner, I think it would have been helpful, and perhaps, saved me some decline.
MG: For sure, I feel the same way about that too in my experience with Long COVID and post exertional malaise [PEM.]
You mentioned that your friend, who is also an actor, messaged you after seeing your video. Over the past four years, many musicians, actors, athletes, and other well-known people have cited illness and long-term illness and many have pulled out of events. We know COVID and Long COVID aren’t the reason for all of them, but it’s clear that there’s a high prevalence of Long COVID — we’ve seen these high rates for numbers for years, from 7% to as high as 30% and know that more than 400 million may be affected around the world. What do you think it will take for more people with influence to bravely “come out” like you did?
MM: Yeah, I mean, I wish I knew. I think about the denial — it’s a huge factor, right? People don’t want to identify as sick. I’m grateful that, through my activism and even before becoming disabled myself, I learned about disability justice. I read the book “Care Work: Dreaming Disability Justice” by Leah Lakshmi Piepzna-Samarasinha — it was right before the pandemic started — and it really clarified for me that being disabled isn’t something to be ashamed of. In fact, there’s a powerful and beautiful line of activism, culture, and wisdom that comes with it.
There’s also the fear of not being seen as hirable if you identify that way. And I understand that fear; it’s very real. I also think part of the denial comes from the assumption that Long COVID — or whatever manifestations of it — are temporary. I thought that too. But as time’s gone on, and my recovery has been slow, I’ve realized that it might not get “better” the way I once imagined. I didn’t want to make a big “coming out” video only to be fully recovered the next month. The more time that passes, the more I realize that’s not likely to happen. I think that’s part of it.
Another piece is the fear of getting COVID again, especially in a world that seems to think it’s fine to get COVID again. Or that we should just believe in this magical in-between where it’s not really a thing anymore, but if you’re aware of it, that makes you scared.
Breaking the denial comes with a high cost — especially in the beginning. I empathize with that, because I understood that for myself too. As social animals, we often assess risk by looking at what others are doing. If everyone else is doing it, maybe it’s not so bad, right?
So when all these factors come together, I get it. I understand that the denial is real. The cost of breaking it is high, and it’s hard. Even for someone like me, who is relatively well-resourced financially and has had access to therapy and coaching for most of my life, it’s been by far the hardest thing I’ve ever done. So I understand why that denial is so strong.
Even for someone like me, who is relatively well-resourced financially and has had access to therapy and coaching for most of my life, it’s been by far the hardest thing I’ve ever done.
Matt McGorry
[Editor’s note: Matt and Miles took a 15-minute break to rest and pace before completing the rest of the interview.]
MG: You talked a little bit about caretaking for a loved one with Long COVID in your video. We’ve been seeing more of this over these past couple of years in the community, often a more “mild” or “moderate” person with Long COVID taking care of someone more severe. What has the experience of being a caretaker of someone with more severe Long COVID taught you?
MM: In some ways, there’s a beautiful intimacy about it. I just finished reading Alice Wong’s “Disability Intimacy” and she talks so much about this, the access to intimacy when you both have the same umbrella condition of something like Long COVID, even though there’s a lot of different [severities] of it. There’s really a beauty of being able to see and understand what another person needs. And understand to some degree the psychological impacts of being in this very isolating and lonely place.
My first sort of experience with caregiving was in 2022. My dad got sick with pancreatic cancer and passed away six weeks after.There’s both equal parts pain and also a closeness that comes with caregiving. In the case of my dad, who we knew was dying, [there was] clarity of being able to want to say everything I wanted to say, and to show up for another human being in that way.
I think caregiving is a really powerful antidote to this way that we are socialized in our society, in this individualist way where we’re supposed to always intend to be happy. All of these things are definitely not a happy time, but can be a very meaningful time.
Caring for this person in my life with Long COVID as well, it’s really painful and hard to watch how debilitating [the disease] can be, and to watch that sort of decline happening. And also with it, the greater difficulty of accessing things like medical care and community.
MG: Thanks for sharing that, Matt.
COVID-19 is a big workers’ rights issue, but is often heavily under-acknowledged by unions. Whether it’s film and television or basically any other industry that has people working together in person. Why do you think COVID-19 precautions in the workplace are ignored by so many organizers? Even often by leftists.
MM: These are huge workers rights issues.
I think in the leftist organizing, it really is just a matter of ableism. A lot of times in non-disabled organizing spaces there’s a lot of talk about ableism, but without wearing a mask, which is perhaps the most concrete way of affecting the material reality of disabled people. [It] feels hypocritical.
I don’t think that we’re at the point where [the left] understands that non-disabled people should be dismantling ableism and be allies of the disabled community. And I think part of that is just because they lack the power in terms of both financial and cultural power. Also, a white person who’s anti-racist, there is even social capital in that, right? Or as a man who practices feminist politics, right? There is social capital in that. But there is no social capital really yet in a non-disabled person practicing anti-ableism.
In fact, it’s the opposite, right ? Wearing a mask associates you with disability, associates you with the idea of “being afraid.” … We need, specifically, the solidarity of people wearing those masks, primarily, of course, to prevent killing and disabling people through spreading COVID. Also in terms of just renormalizing mask-wearing and challenging the idea that it’s not an individual problem, but everyone’s.
We need, specifically, the solidarity of people wearing those masks, primarily, of course, to prevent killing and disabling people through spreading COVID.
Matt McGorry
MG: A lot of people are curious to know about what kind of COVID-19 precautions the film and television industry are taking these days. I know earlier in the pandemic my partner worked on film sets and would test people for COVID-19. It was taken very seriously with robust measures to make sure everyone was safe. And I know these precautions continued for a while. Is that still something that is common now?
MM: No, not at all. Unfortunately, it’s just not at all a consideration anymore.
I think on some productions if they have people who have power on those productions [who are concerned about COVID-19] that there would be some accommodations that could be met. There’s stuff that I would like to say, frankly, that I feel like, unfortunately, for the sake of my career, that I can’t even really say publicly.
The ADA [American Disability Act] works the way it does — that you don’t have to disclose the need for accommodations before having a job — because we know that when that happens people do discriminate, whether they realize it or not.
As an actor, you’re essentially a freelance person. It’d be one thing if you worked in a corporate job and disclosed once and then worked at that job for 10 years. Most acting jobs are not 10 years. It’s a really gnarly situation and particularly because as an actor, you have to be unmasked to do the job, which is the only job on set really that you have to be unmasked to do right now. And one of the few jobs in general that you really have to be unmasked to do. Of course, there’s a lot of social pressure in other fields and even financial pressure and all of that to conform.
But yeah, it’s disappointing. I hope that it’ll change and I’m still thinking about ways to change it.
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