It’s become an oft-repeated pandemic talking point: we won’t know the true impact of COVID-19 for years to come.
But one societal change has come into focus, due to the huge numbers of Americans now suffering from long COVID. This population has unburied a conversation about chronic illness historically relegated to the margins of mainstream discourse. In our lifetimes, we have never had to collectively contend with illness at this scale. Many of us are turning away from the realities of COVID after two-plus years of constant anxiety and hardship, while some never looked fully at them to begin with. But the story of long COVID is too big to be wished away.
For a recent episode of the podcast Tested, I interviewed science communicator Eleanor Spicer Rice about her experience having long COVID. I sat in the studio with her, wearing my professional interviewer’s hat, asking warm-up questions and checking levels on the mics — and another, more distant self observed in disbelief as we began to discuss brain fog, and chronic fatigue, and the gaslighting which becomes a daily reality for chronically ill people. Eleanor detailed how she can no longer follow recipes or make lists, how words on a page sometimes transform and look like something completely different to her brain. She told me about forgetting entire afternoons of her life, and seeing red traffic lights lit up instead of green and vice versa. As she described symptoms that wouldn’t be out of place in a sci-fi or horror film, I shared that I’d had my own journey with a disease that made me feel like I was living in The Twilight Zone. And I wondered, was this frank conversation really going to be a feature on the radio, and a news story on our website?
The long haul syndrome affects up to 1 in 3 people who come down with COVID. The sheer number of people experiencing it means that there are many public catalogs of the pain, the fatigue, the loss of function and the slipping away of reality that characterizes chronic illness for millions of Americans. More public oxygen than I’ve seen in my lifetime is being devoted to people who don’t fit into the fascist parameters of glowing health as defined by “wellness” culture.
In this country, sick people don’t get to be real people. Sick people are statistics, are death tolls, are survivors, are burdens. Those disabled by acute illness are held up as saints and martyrs so the rest of society can take a guilty breath of relief for their relative health; the chronically ill might as well be invisible. Not for nothing are conditions like fibromyalgia and chronic fatigue syndrome often referred to as “invisible illnesses.” Sick people are not us, but them.
Watching and listening to coverage of long COVID over the last year and a half has made me feel like the world has tilted sideways. I don’t know how to feel about the types of symptoms I first began to experience twenty years ago suddenly being legitimized in common parlance. Back then, when I told people what I was going through — whether doctors, acquaintances, friends, family — their reaction was overwhelmingly an implication that I was making it up, or at least exaggerating. And this is for a condition that showed physically on me as extreme skin inflammation and swelling, that forced me to drop out of school multiple times and live in almost total isolation for many years. And my parents and I had access to none of today’s resources as we navigated a dark tunnel with no exit, riddled with gaps in the road ahead so that one wrong step would mean falling down a pit it would take months to climb out of. Eleanor shares a metaphor for experiencing long COVID as crossing a path of skipping stones in which stones will be missing with no warning, plunging her into dark water, which deeply resonates with me.
I nodded as Eleanor told me that people often don’t believe long COVID symptoms are real. She recounted that someone she knows, upon seeing her, commented, “You don’t look sick.” I did look sick, but I still often received rolled eyes or the silent treatment from those around me because what was happening to me was too weird, too upsetting, too baffling for them to easily categorize. So they undermined it instead. Unlike Eleanor, who bravely tells people about long COVID at every opportunity, I did not find instant camaraderie with others in the same boat everywhere I went. Nor did my community rise up to fill every need my family and I were suddenly facing, amid the avalanche that flattens you upon the arrival of severe illness. I was in alone with a few stalwart loved ones, floating in isolation among a constellation of others suffering from barely-understood chronic illnesses like ME/CFS, fibromyalgia, and environmental illness. We hung in a dark sky of pain, as distant from being in community with each other as stars.
I’ve mostly left behind that dark tunnel of terror that consumed eighteen years of my youth. I’m active, creative, and living a full life with my family and friends. I love my work. I travel. I even volunteer! Maybe I do too much these days — but I feel like I’m making up for lost time, and I can’t escape the lingering urge to pack every moment full of the things I want to do. I learned early on that nothing is permanent, or as Eleanor put it, that reality is so very fragile.
That lesson lingers with me, even as I have reached a point in my recovery that allows me to live what most would consider a relatively normal life (ableist as that notion of “normal” might be). Our lives hang by a thread. Many of us walk around as though we imagine ourselves gods, invulnerable to the demands and vagaries of our bodies — until we are forced to reckon with them. One thing amongst many that has enraged me since the beginning of this pandemic is the callousness on the part of both individuals and institutions toward our most vulnerable populations: the immunocompromised, the chronically ill, the elderly, the disabled. People like me. It was breathtaking to witness such blasé acceptance of the collateral damage we would need to take on so that the “healthy” majority could avoid being inconvenienced, letting COVID spread unchecked at a level no other country in the world allowed — because only these vulnerable populations would die, it was assumed, and we were of less value anyway. (Add to this the later revelations that COVID was killing Black and brown people at a higher rate, and any hope that the Trump administration would take COVID seriously evaporated.)
Looking down your nose at disabled and chronically ill people means despising your own future. We aren’t separate from each other; there is no bright dividing line between being ill and being healthy. It’s more a spectrum of ability, and where we are along that spectrum changes throughout our lives. All of us will experience a deterioration of our physical and/or mental health at some point. If we don’t cultivate compassion for ourselves and each other in these moments when we need support, our society will eventually cease to function for all of us. And that’s aside from the moral imperative here, which should be obvious.
And so the emergence of long COVID does give me a small amount of hope. The people who spoke to us for the podcast made it clear that treatment is actually available. There are barriers to receiving that care because of inadequate healthcare infrastructures, but doctors and nurses are actually listening to patients. They’re providing them with effective symptomatic relief as they work tirelessly on figuring out why this baffling post-viral syndrome behaves the way it does. The sufferers of long COVID I interviewed reported compassion from their doctors rather than gaslighting. There’s a general acknowledgment by doctors that just because long COVID doesn’t show up on any tests or scans, that doesn’t negate the real experience of illness patients report.
That’s revolutionary compared to what I and many other chronically ill people dealt with in the past. Perhaps more than any other kind of patient, we need medical professionals to listen to us, to trust our experience of what it’s like to live in bodies that are constantly changing the rules for what we’ll be able to do each day. Maybe long COVID will increase legitimacy and awareness for other chronic illnesses as well, both in the public sphere and in the medical community, and we can at least begin to have conversations about how we feel, what we need, and what has to change.
Anisa Khalifa is a producer at North Carolina Public Radio, WUNC. In addition to the episode she references about long COVID for WUNC’s Tested podcast, she highly recommends this episode of the show 1A.
