‘I was in denial about it’: actor Matt McGorry on having long Covid | Well actually

On 28 October, Matt McGorry posted a video to Instagram. “This is definitely the most vulnerable thing I’ve ever shared, and is a conversation I haven’t even had with a lot of my closest friends,” he said.

The actor, known for roles in Orange Is the New Black and How to Get Away With Murder, revealed he had “never fully recovered” after two Covid infections. “Long Covid has dramatically changed my life,” said McGorry, describing symptoms including debilitating fatigue, depression, dysautonomia, Raynaud’s disease and brain fog, which he called “a cute little name for brain damage”.

“Some things that I love that I can’t do any more are exercising, lifting weights, hiking and reading an hour a day,” he said. In early November, McGorry posted another video, in which he encouraged people to mitigate risk for themselves and others by wearing a mask in essential places like doctors’ offices and pharmacies. “Having to still think about Covid fucking sucks. Trust me, I get it,” he said. “But empathy alone is not enough without actions of solidarity.”

According to one report, 400 million people have been affected by long Covid. But it is under-diagnosed and misunderstood. McGorry said in the video he hesitated to speak publicly about his health “primarily because of fear of career discrimination and also people making assumptions about what I can and can’t do”.

I spoke to McGorry over video chat in mid-November about his diagnosis and sharing his story. “I want able people to learn from disabled people,” he said, listing Alice Wong’s Disability Intimacy and Leah Lakshmi Piepzna-Samarasinha’s Care Work and The Future Is Disabled as useful books.

“I’ve been organizing white people for anti-racism for quite a few years,” he said. “Those conversations are so different than a conversation where your own life is impacted. I’m happy to say, here are the resources, but having to convince people that accessibility and disability justice are social justice issues in the first place is incredibly dehumanizing and exhausting and usually very fruitless.”

This interview has been edited for length and clarity.

How did you decide to share your long Covid experience publicly?

The first time I got Covid was 11 days after my dad passed away. I was feeling fatigue and brain fog, which I thought were probably associated with the grief.

I was in denial about it, because I knew there’s no easy fix. I knew that if I did have long Covid, that I probably couldn’t afford to get it again, and if I couldn’t afford to get it again, then everything in my life wouldn’t have to change. Breaking out of that denial was the first step.

I also wanted to wait until my health wasn’t actively declining, and understand where I was with my relationships in my life. Stress, at least for me, is an activator of symptoms.

Being somebody with a public profile, were you worried about criticism? Was there a negative response?

In my personal life, I tell everyone that I have long Covid, because I want everyone to know that it exists. The guy who’s taking 27 vials of my blood in a lab, he’s like, “Damn, that’s a lot of vials.” And I’m like, “Yeah, it’s for long Covid.” [With a wider audience,] it’s really more about the fear of people making assumptions about my abilities, and therefore my ability to work.

One of the most common ways disabled people are discriminated against is people making assumptions about their capacities and not consulting them about it. But what was even more vulnerable, honestly, was the second video: making asks about people in my community wearing masks in essential places where disabled people have to be.

I’m new to experiencing it first-hand, but a lot of the systemic oppression that disabled people face is neglect. It may not be outright vitriol. If you don’t take the action to make the space accessible, we can’t be there, or we can’t be there safely. We have to risk our lives. If you cut the funding for programs that people need to survive, you just get people who kind of fall by the wayside, in the words of Anthony Fauci.

What made you first suspect you had long Covid?

Fatigue is still the main symptom. If everything else stayed the same and the fatigue went away, or even improved by half, I would feel extremely grateful for that. Learning about pacing was pretty huge for me.

I was also using stimulants to be able to get through my day. I’d have a scoop of pre-workout in the morning to answer emails. If I push up to the point where I get brain fatigue, I start to feel like shit, basically. The fatigue becomes exponential very quickly. It wasn’t until later that I realized that when I reach the limit, that is because I’ve gotten beyond it, and that has a cost. Starting to use wearable tracking [devices] allowed me to see, like, my heart rate is tachycardic when I have this caffeine.

Memorizing lines was becoming hard. Or doing cold reads, where you get handed the script, which requires a lot of multitasking: you’re looking at the script, engaging with the person, hitting the marks. I felt like I kept missing the turn, you know: driving by and you’re like, shit, that’s my turn. Some of that cognitive stuff has gotten better, but it’s incredibly scary. I can still do my job as an actor as long as it’s safe for me. The long Covid itself doesn’t preclude me from being able to do it.

I went to a long Covid clinic in Los Angeles about a year ago. They had a long survey [about symptoms]. The amount of things that I was saying yes to validated that all these different things are connected.

We’re used to being told that you get healthier by putting in effort. But with long Covid, to recover, many experts say to do less and rest.

I was a personal trainer for a decade, including during my first two seasons of Orange Is the New Black. I was heavily indoctrinated into diet culture and thin supremacy. We’re taught you just have to keep pushing. A person that I help care for is mostly housebound, and often bed-bound. I was in a session with them with a neurologist recently, who was like, “But you should get up and walk around the block.” So it runs deep.

Long Covid is a relatively new disease, and the science is developing. You say in the video you had to become your own expert. What does that mean?

Part of it is doctors only have so much time – particularly long Covid clinics. Even for people who have access to resources, like hiring a concierge doctor, there’s only so much that they can do.

Most of the disabled people I know who have long Covid probably read more studies about it than most doctors. I’ve started keeping a health journal. Once a week, I do a self-check-in: these are the meds that I’m taking or that I’ve changed dose on; this symptom seems new or different.

As an able-bodied person, you trust that your doctor is going to steer the ship if something pops up. But if I were to wait for them and not be proactive, my health would have continued to decline. So, for me, it looks like reading studies, following people who are at the forefront of the science, and cross-referencing with other people in the [long Covid] community. There’s a group in Los Angeles called the Wayside, after Dr Fauci’s comment. We share resources and talk about what’s working and what’s not working, and how to navigate the systems.

Before I had long Covid, when I was unconsciously invested in ideas of health and goodness and virtue, there was pride in being a good patient at the doctor. They’d be like, wow, you’re so fit, or whatever. The more you have a complex illness, the more you end up having to push and advocate for certain things, including masking in the offices, which is absolutely exhausting.

I had been dealing with a vascular lesion in my quad for a year and some pain in my knees. The orthopedist said, “Your cartilage is worn down.” We didn’t do a scan or anything. So I went to rehab for eight months. I ended up basically asking, “Can I get a scan?” There wasn’t a cartilage issue – I had a torn meniscus. The doctor assumed that I had a cartilage issue because of my higher body weight instead of scanning for something that could actually be fixed.

With the quad, the doctor said it could be cancer. Wildly, I thought, well, maybe if I have cancer, at least people will listen to me. Before going to the oncologist’s office, I’d asked if he could wear an N95, and the staff said he’s not really a masker. He walks in the room and he starts putting the mask on. And he says, “We’ll do this quickly before I suffocate.”

I think people don’t understand that. You’re asking, “Hey, would you mind protecting my life?” When someone’s like, “Oh God, what a pain in the ass,” experiences like that make you reticent to ask in the future.

You mentioned being a caretaker for someone who also has long Covid. How does care work affect your life?

The most challenging part about it is witnessing the ableism that person experiences. Having felt how terrifying it is to feel like your health is free-falling in a world, a system, a country that does not value disabled people and does not value people without their labor has been clarifying to me on how I want to be able to show up for someone else.

When I have my own limited energy, it’s hard to want to be able to do more, and feel like the capacity is not there. That becomes more and more scary, the more disabled someone becomes, because they inevitably need more support.

It’s extremely challenging emotionally and physically, and also, I recognize, some of the most important work that I’ve been involved in. There is a beauty in access intimacy, where because you both are dealing with the same thing to varying degrees, you have some ability to understand what the other person needs. Not having to ask for every single thing is a way of feeling seen that is really beautiful.

How has your experience of chronic illness changed your idea of health and your relationship to it?

My relationship to that had been evolving for a long time. I was a trainer and competitive power lifter – very invested in one vision of health. And I was starting to question some of those ideas, how a lot of the things that I was doing were actually antithetical to health. I was becoming interested in the health-at-every-size movement, and anti-diet ideas.

If we’re only focused on individual change and not on the systemic issues that actually have a larger impact on health, like poverty and lack of access to medical care, then what we’re doing is not really about health. It’s about thinness and desirability and social status.

If we don’t have accessible healthcare, both for cost and when people feel safe to show up and not get infected, what we’re doing is not health. We’re excluding the people that actually need it the most, which in any other social justice issue we would understand is a huge fucking problem and that something needs to be done about it.

What does risk mitigation look like for you, and what did you want people who don’t have long Covid to take away from the video?

The risk mitigation in my life is very high. When your health is taken away from you, you realize how important it is. There’s not much that feels worth the risk of another Covid infection.

I don’t necessarily expect that everyone does or should do what I’m doing, but the number one thing is having a very well-fitting respirator. For maximum protection, you need something that forms an airtight seal. While you may get some protection from a surgical mask, if you’re already taking that step, it makes sense to find something that seals to your face. I wear the Flo mask, which is a reusable mask. People definitely look at it, and I have all sorts of feelings about that. I used to love to people-watch, and now I don’t any more, because people are watching me.

And then, whenever possible, using Hepa filters. There’s an engineer in China named Adam Wong who is making some really great products, one that breaks down and collapses into a carry-on with you. It’s extremely powerful and cost-effective.

But it really comes down to respirators and getting updated vaccines, which most people just do not do these days. The science is really clear that getting Covid over and over again is not good for anyone. It feels like where the climate movement was like 10 years ago, where the scientists were saying things and people were not really listening. And I understand that it emotionally costs something – to admit that there is a risk disrupts the illusion of denial and back to normal.

Local mask blocs are doing really incredible work with getting masks to people in communities that might otherwise not be able to afford high-quality masks. There’s a lot of clean air clubs popping up, bringing Hepa filters to events and building the world that we want to see that is safe. Covid Action Map is a resource where people can find their local communities.

My asks are very simply masking, at the very least, in places where disabled and immunocompromised people have to be: grocery stores, medical settings such as doctors, offices, pharmacies, hospitals, and transportation like planes, trains and buses.

Even as an act of solidarity, picking a couple of those places, making a commitment to that and making that known is incredibly important. As someone who feels extremely isolated and abandoned by the rest of society, I don’t have the capacity any more to ask individual people in my life if they will take this home. That’s what the video was for.