At the beginning of the coronavirus pandemic, both government and medical sources reported that recovery for people with mild symptoms would take around two weeks, and for people presenting with more severe symptoms, three to six weeks. Over the past several months, there has been a growing concern about those of us who are remaining ill past the predicted recovery period, now known as COVID-19 long-haulers.
In this article, we share the story of one such COVID-19 long-hauler, longtime HIV activist and artist Pato Hebert. An associate arts professor at Tisch School of the Arts at New York University, Hebert’s work explores the aesthetics, ethics, and poetry of interconnectedness. He also allies with social movements and community organizations to develop innovative approaches to HIV mobilization, programs, advocacy, and justice.
This article is a transcript of an interview with Hebert conducted by our correspondent Terri Wilder. It has been edited for clarity and narrative flow.
COVID-19 long-haulers experience a longer duration of symptoms, including headaches, shortness of breath, sleep disturbance, and pain. While not every long-hauler experiences the same symptoms, we are becoming more vocal about our need for increased awareness around and research into our specific challenges with COVID-19.
I received my COVID-19 results on March 27—and I went public a day later. I’ve been sick for about nine months now, and, while I am definitely better month over month and week over week, I still have weekly sore throats, especially after too many Zoom calls. I experience fatigue still and struggle with short-term memory, motivation, and organizing thoughts. I stumble through my weekly relapses, even though they’re less intense and a little less frequent than they were months ago.
This is my personal journey with COVID-19, navigating health care, and finding community and space for art through illness.
My Decision to Go Public With My COVID-19 Diagnosis
I’ve worked in HIV for two and a half decades, mostly on the prevention side—working to build community with folks and to hold space for people, regardless of their HIV status—but certainly in ways that counter the immense stigma and discrimination against people living with HIV. The frameworks that I have, that were given to me and that were collectively developed over years around disclosure really come out of those decades of HIV work, understanding that disclosure is not right for everyone at every time. In fact, it can be extremely dangerous, whether that’s around immigration status, or maintaining employment, or your intimate relationships with friends or lovers or family. It’s an extremely personal decision. I’m HIV negative but have learned so much from the choices that people who are living with the virus have made.
In March, there was so much not knowing and uncertainty-cum-confusion about COVID. For a lot of people, it just wasn’t real. I knew that going public would help to ground it and make it real, and to counter the stigma that was already brewing, particularly the kind of racist and xenophobic stigma that was attached to it.
At the time I went public, I’d already been sick for two or three weeks, and it seemed very mild, so I felt like I wasn’t overly scared. I didn’t have that question of, “Do I go public from the ER?” My harder symptoms came later, ironically, after I disclosed. Within a week of going public, things got much harder for me and my ability to process the energy coming at me—mostly, the love, care, and concern from people in my life. I was overwhelmed.
At the time I went public, it felt like a way to contribute to a public conversation that was just beginning. On some level, it was a way to honor the decades of community that I’ve been building with many kinds of people who build community towards wellness, despite great challenges. I wanted to call forth that possibility of support for myself, even as I wanted to open up a space where it was OK to begin to try to talk about this thing that none of us really understood at the time.
“Many People Know Many People”
Despite and through all the love and care that I’ve gotten for months, underneath it is a profound fear and anxiety that many people continue to have, understandably, about getting infected. There’s this incredible desire to care for me, but the complexity of doing that from afar, through text, video, a letter, a care package, or a call.
Then, underneath that, is an intense curiosity—especially because I got infected early, back in March—about the symptoms. Some of that is connected to the fact that most of what we were seeing at the time was that you were either asymptomatic or mildly flu-like—or you were on a ventilator and then, quite quickly, you can die. There was no room for this vast gray area in the middle of that continuum that was more than mild, but less than ICU. That happened to be the space I ultimately, fortunately, fell into.
At the same time, in March and April, people were scared. Underneath the “How are you doing?” was this deep anxiety of, How am I doing? Meaning, how were they doing? No one had heard of long-haulers at that point. We still were under the operating assumption and messages in the media that this was a two- or three-week recovery. When I continued to be sick, deep into April and May, people’s combination of fear and incredulousness started to creep up.
Now, all these months later, I find that when people ask, “How are you doing?” they’re much more sensitized. There’s a broader continuum of experience that people have been exposed to. In March and April, many people told me I was the first person they knew personally who was infected with COVID, and now that’s, sadly, very untrue. Many people know many people.
But despite all that shift over the last four or five months in people’s consciousness and exposure—meaning, familiarity—to the virus, I find that what’s underneath the question of, “How are you doing?” is, Please reassure me. I’m now having to pivot into this decision time of how honest am I going to be, and how full an answer, because most of what I have to say isn’t going to simply be reassuring. My shorthand is, “I’m better, but not fully well. And I’m better week over week.”
Trying to Make Sense of My Lingering COVID-19 Symptoms
My most constant, ambient symptom is sore throats. It makes it hard to do my work, because a fair amount of my work involves facilitating, or engaging people, or teaching, and I need to be verbal a lot of the time. The headaches are less frequent now, but when they come, they can be unpleasant. The hardest thing is the fatigue. While it’s nowhere near what it was in the spring, still, once or twice a week, I will have to stop talking and doing what I’m doing and lie down.
What’s more common is that I will hit a wall in the late afternoon, or have trouble just getting going in the morning. If I have a particularly stressful or intense series of activities, like my art or community organizing, I can be worn down for a couple of days. It’s not a hangover, in the sense of alcohol or substance use, but, rather, the hangover in the body in a sense of inflammation and intense flaring—and it takes a long time to then subside.
I’ve come to call it the Lingering, which is the name of an emergent series of images I’ve been making on my daily walks in Los Angeles’ Elysian Park. It’s this sense of lingering that’s no longer as sick as it was, but is not healed. It’s recovering as an active, ongoing, unclear process, rather than recovered, past tense.
Therefore, I don’t know what healthy looks like anymore. I know what I thought it was. I have fantasies of what it could be. But I’m, week by week, less and less invested in an expected notion of what healthy looks like. What I can do is say, How do I feel compared to last week? What are the next steps or stretches that I might be able to do, to improve that in the coming days or week?
Navigating the Landscape of COVID Care
At the time I got sick, doctors were telling you that if you don’t have super-severe X, Y, Z, don’t come in. Many of my symptoms weren’t recognized as COVID symptoms. I had a sore throat and a cough with phlegm. I didn’t have a temperature. I only had one or two nights of intense night sweats. Fatigue and shortness of breath were not as pronounced.
I got tested on March 24, and within the week, I began having trouble breathing. I wasn’t wheezing and didn’t have intense chest pain, but I could not sleep. I was scared because I was watching the headlines and I knew where it could go. Later the next morning, I took myself to urgent care.
I was grateful that people were doing their job at a difficult, scary moment in the pandemic. When I arrived, I declared that I had COVID. I had a mask on, and I wanted to announce it to them so that they knew, because I knew they were putting themselves at risk. The first nurse I encountered—she was on the front line, meeting people at the doorway in these series of kind of spatialized entrances into the urgent care—she had a very strong, visceral, negative reaction. “You need to go over there. You need to do this.” She was giving me the directive she needed to—but her fear and discomfort were palpable and, in my vulnerable state, was not what I needed.
Then, the doctor I saw was exhausted. I could see the immense fatigue in her face, and I lovingly commented on it. “Thank you so much. You just must be so tired, working so hard.” She kind of smiled a weary smile and said, “You’re fine. You’re fine. You’re going to be fine.” She meant it as reassurance, but she was also already almost out the door.
I asked, “So, there’s nothing on the X-ray?” She said, “Nope. It’s totally clean. You’re going to be fine.” Then I said, “Thank you. That’s a relief. I have to say, however, that I can’t breathe really well.” So I basically had to advocate to get myself an inhaler. To her credit, she was willing to give me that.
At that point, their diagnostics and their sense of the nuance and spectrum of how COVID could manifest in the body was so uninformed. It’s not their fault—they just hadn’t seen enough cases. At each of those junctures—the young nurse at the front and the elder, working-so-hard, deeply tired doctor—neither of them could add much more.
I’ll say that I thought I might have had a mini-stroke related to COVID in mid-June. I was dizzy, had vertigo, and couldn’t see well. Only in late June and early July did I start reading about strokes being not uncommon for people with COVID. So, many weeks after this episode—that went away quite quickly and that I thought was just some rare, weird COVID thing—I decided that I should approach my primary care provider.
My provider, being very informed about COVID, to their credit, said, “We should get you checked for neurological problems.” They couldn’t see me in-office because I was still presenting symptoms four months in, and so they sent me to urgent care. I got lucky—the doctor who I happened to see at urgent care had COVID himself. His bedside manner, thoroughness, empathy, and understanding were just what I needed.
That process has now led me to many more encounters. Now, I’m fortunate to be engaging a great doctor who’s part of a brand-new COVID care unit for outpatient folks. We’re going through a process of CT scans and trying to get to the bottom of whether there is any structural damage.
Lessons for COVID-19 Treatment From Inside HIV Care and Community
I think advocating for myself—in this case, for an inhaler and discussing my X-ray results in urgent care—comes out of trying to support people as they navigate the continuum of HIV care. It comes from tons and tons and tons of friends, community members, and clients, when I worked inside of HIV NGOs, and hearing people’s horror stories. Trans folk, sex workers, and substance users facing a nonstop barrage of judgment, stigmatization, outright racism, sexism, homophobia, and transphobia had to develop skills just to access care. I am continually grateful to be connected to the HIV community, queer community, and feminist community and for all the lessons, all the listening, all the shared strategizing, all the learning.
At the same time, I am deeply concerned that thousands of our fellow folks in this country and around the world do not have that support and advocacy. Both diseases—HIV and COVID, and many others—reveal the phenomenal inequities in this culture, the political choices, and the kinds of social, cultural, and structural isms that continue to alienate, harm, and literally kill people.
Some of the strategies and tactics for advocacy, for building community, for mutual aid—those to me are not unique to HIV but are certainly lessons that are passed on, just as HIV learned from second-wave feminism; from early queer mobilization; certainly and particularly in communities of color, from the processes that AIM [the American Indian Movement] and the Black Panthers were enacting towards holistic wellness, including free breakfast programs and food lines. These are waves of political processes. We can go back much further to all the labor organizing and the feminist and anti–racist-violence organizing that was happening in the first part of the 20th century.
One of the things I’m learning from the communities that I’m beginning to connect with beyond the HIV community is how many lessons and practices we can build upon and collaborate with, and to think about other [diseases]—chronic fatigue, Epstein-Barr, and lupus. Disability activists have been pushing out, in concert with, but often parallel to, and sometimes separate from, the HIV community over the last three or four decades.
COVID is an incredible moment where we see this converging in ways that it hasn’t as fully in previous times. You see in the case of, for example, adrienne maree brown’s work and other activists, this holding of queer feminist pleasure activism and practices of shared wellness. There are so many people who talk about somatics and attending to the affective role, the space of feeling. You combine that with what disability activists have been doing—tireless years of advocating for policy change—for a totally different sense of what’s possible with the care system: a client-centered and community-driven notion of health care and wellness. This moment allows us, through COVID and through coronaviruses, in general, to think and act on a much more coordinated scale.
Raptors, Lizards, Condoms, Masks, Gloves, and Spring Flowers
I got my start in HIV work in 1994, co-teaching photography class for Latinx folks, before we called ourselves that, in the San Francisco Mission District. Art was my entrée into HIV and HIV organizing.
The power of image-making, storytelling, coming together—sometimes HIV would be talked about explicitly, and sometimes it wouldn’t. Having space with others, I learned how powerful that is and what it can mean—the spaces that art opens up, sometimes at the level of language and what can be spoken or said and, often, not. Or at the level of the body or feeling or temperature—and how important it is to make that kind of space for things that are so hard to talk about, or maybe can’t be spoken.
That was an early lesson in organizing and in art that has stayed with me all along—certainly, in the projects I’ve done over the years with others around HIV, but also with my own work. Part of that practice for me is, I compulsively make images—always have—because photography’s important to my practice. Now, with phones, we can have that capacity in our hands that, in a way, I still find kind of extraordinary.
I also write a lot in a journal. Turning to words and images as a space to be in is a way to come to understanding. It’s not always that pronounced—sometimes it’s just a space to be in, with words and images as a way to be in the world and then, maybe over time, engage the world and make sense of it. That’s an old process for me, with others and by myself.
When I got sick, I couldn’t be out here working. I couldn’t be working in my studio. I couldn’t be making sculpture. I had to stop these paintings I was working on for a show back in February. There are lots of other kinds of work that I just didn’t have the energy to do. In fact, I could barely do much at all. Sometimes I couldn’t even write in my journal. I was just too tired. I could not find my way to that space.
But once or twice a week, I could write something. And sometimes I would post that. The response was really moving. People said, “This is so important. We need to hear from people who are sick. We need to mark this for history.” That was encouraging—that this bleed between what might otherwise stay on my phone or in my journal could also be communal because of social media.
That, in turn, led to a series of invitations. There were a few things I already had on the docket as an artist. I took some of those existing opportunities—some of them related to HIV, some of them not—and then used it as an occasion to give what I was calling illustrated performative readings. I would read things I had posted or written in my journal, showing them against the backdrop. Or I would speak over the top of images I’ve been making—images from getting tested, or images from the park I walk in here in LA to rebuild my lungs. Initially, I took one very slow, 15-minute walk—I wasn’t even sure I could finish it. Then, I would slowly build up five more minutes each day. I had my phone with me, so I’m making pictures of raptors, lizards, condoms, masks, gloves, and spring flowers—this incredible abundance of life, and this incredible presencing of the pandemic in this park—that was a lifesaver for me.
Then I was able to sort of combine those two, because I had these public occasions once every two or three weeks to give a talk over Zoom or be on a panel. People were generous enough to let me mess with the format a little, and show images, read, and perform.
During one call, I broke down. It was still early in my speaking publicly. I’d been posting publicly, but it was different than speaking. There were several people on the call who knew me and that I had a deep, loving history with. It was an extremely emotional, tender experience for many of us. I’m very grateful for the organizers who held that space and allowed me to do that, and for the community that showed up.
That led to invitations to do some writing and editing. It seems like there’s a lot of energy around that right now. There’s a little less on the gallery and museum exhibition tip, and more on the text and image space. Some combination between social media, Zoom, and print seems to be where the energy is right now for me in the world and my practice. I’m trying to embrace that as best I can.
What COVID-19 Long-Haulers Need in the Long Term
Ableism assumes that you’re supposed to get well, and that wellness looks like A, B, or C. And there’s not a lot of room outside of that, because ableism is the assumption and the imperative. This is a really significant opportunity we should not waste to address and take apart ableism, and to think about our very notions of what is healthy. That, in turn, can help us rethink a health care system in this country, and in too many parts of the world, that’s predicated on the market.
When you have health care that is tied to employment, as we’re seeing right now, as so many people are losing their jobs, the small trickle of resources from D.C. are dried up right now, and people are in grave danger on a daily basis, because they can’t access health care. Rethinking what we understand health care systems to be and rethinking ableism as an orientation and a frame and an injustice are very deep, long, macro things that we can all be working on, on a daily basis on a bunch of different levels.
Long-haulers will need to continue to understand that there is this vast continuum between asymptomatic or mild, or ventilated or in the ICU, or heaven forbid, dead. Right now, we don’t easily fit inside those schema. At the same time, we don’t have enough research and enough outpatient care units. We need both of those. We need to build the collective body of knowledge, through science and through community organizing, about what it means to be a long-hauler. There are an infinite number of experiences, and no one person’s symptoms look the same.
You can begin to aggregate and help to understand so that there’s shared knowledge. But you can’t have that and be legible to the health system unless you got a test. If you can’t get access to a test because you live three hours away or you can’t afford it or it would expose you around your job or your relationship or your immigration status—or you were sick at a certain point in time in the spring, and can’t prove on paper that you had it.
All of these reveal the kind of deep inequities in those two orientations of ableism and market-based health care. They prevent, precisely, long-haulers—who may have to deal with long-term questions of disability—from accessing different kinds of emotional and mental care over time. What does that mean, if we can’t work at the same capacity, an assumed ableist capacity, but have to work at a different level?
We need structure around policy change. Then at the community and the social levels, we need a deeper understanding. We need to hear from people who have COVID—not just the fears of people who don’t want to catch it. We need to hear the wide range of experiences of now millions of people who have it.
I Googled “Los Angeles COVID.” On the left-hand column, it says, “Total Cases.” On the right-hand column, it says, “Deaths.” In the middle, it says, “Recovered”—and that column is blank. That’s where long-haulers fall. We don’t have frameworks yet to even understand recovering, active, present, ongoing, possibly chronic, and recovered. That’s where the work has to happen. We have to fill in that column with what it means to be recovering, if we have any hope to together be recovered—and in a new, much more just kind of way.