For us COVID long-haulers, disease hardships could last years

Post-Acute COVID Syndrome, a chronic reaction to the virus, has upended the home lives of millions — including me

Published May 23, 2021 7:30PM (EDT)

Woman Holding Thermometer While Lying On Bed (Getty Images)
Woman Holding Thermometer While Lying On Bed (Getty Images)

"I spent many days as a potted plant."

This is how Jamie Rosica, a 46-year-old woman from New Jersey, describes living with long COVID; she's joking, of course — making light of the very real anguish she feels as a fitness instructor and once-active mom of teen girls who now struggles to get off her couch. Meanwhile Rebecca, 39, from Ohio, likens the intense fatigue she feels to a carnival ride — "the one that sucks you to the back of the wall as it spins" — except in this case she's being sucked into bed, "and it doesn't end, and it isn't fun." Besides fatigue, Alexis, a 38-year-old mother of two small children from southern California, experiences cognitive difficulties, and often struggles to find the right words. "My wit and insight were part of my identity that was stripped from me," she says.

Like the myriad effects this still-baffling virus has on the infected — why do some remain asymptomatic, while others (often young, with no pre-existing conditions) get sick and die? — Post-Acute COVID Syndrome, or "long COVID," also manifests in a staggering array of symptoms. Fatigue, headaches, and brain fog are among the most common — also breathing difficulties, and post-exertional malaise. But some long-haulers experience tremors, dizziness, gastrointestinal issues, even psychosis. Their one unifying trait may be the psychological burdens they carry: fear over the lack of answers about their conditions; frustration over finding themselves suddenly dependent on caregivers; and guilt over the effects their illnesses are having on the lives of those closest to them.

Thirty-two million cases of COVID-19 have now been reported in the U.S.; long COVID affects up to a third of those who've had the disease. And while many herald a return to normalcy, millions of long-haulers and their caretakers must face the possibility that their lives will never be the same.

Widespread concerns about the impact that COVID may have on the nation's workforce — as employees struggle for acceptance and accommodations, and employers face potential spikes in medical leave and disability requests — are heightened by reports that our already overwhelmed health care system is unprepared for such an influx of the chronically ill. But what about the effects long COVID is having on long-term relationships — on our marriages, our families? What, if anything, can be gleaned from this collective trauma, even as we move toward the uncertainties still ahead?

As a long-hauler myself, I have more than just professional interest in this topic. In attempting to find meaning in this experience, I'm perhaps illustrating resistance to what Dr. Karla Thompson, neuropsychologist with the COVID Recovery Clinic at UNC Hospital in Chapel Hill, sees as one of the broader impacts of the past pandemic year: awareness of my own lack of control.

"Everyone who isn't a COVID denier has a heightened awareness of their own vulnerability and mortality now," she says. "That's definitely something that young, healthy folks have not had to confront in the past. COVID's brought home to us the randomness through which we can contract a life-affecting illness, through no real fault of our own."

Despite my family's best attempts at vigilance — we masked, we distanced, we worked and schooled from home — I was infected with COVID-19 in late July of 2020; my husband and kids somehow managed to avoid it. The acute phase of my illness was considered mild; though I was bedridden for about a month with exhaustion, cough, and headaches, I was never hospitalized. Once released from quarantine, I thought at first that I was just recovering slowly, that my lingering exhaustion was normal post-viral fatigue. It took months to realize I was getting worse, not better; it took even longer for me to see the impact my prolonged sickness was starting to have on my family.

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On the days I was incapacitated — lying in the dark with screaming headaches at least twice a week, if not more — my husband not only had to work a full-time job, but also supervise virtual school, moderate frequent sibling fights, cook meals, and handle all the other day-to-day drudgework that keeps a household functioning. He was happy I'd survived COVID, of course, and never complained about this considerable burden — but he was understandably stressed and frustrated. Meanwhile I felt helpless, guilt-stricken, ashamed. When I asked one night how he felt about our predicament, he recalled the mind-set he'd once used on road-cycling trips through the mountains — in particular how an hours-long, all-uphill climb necessitated a particular kind of endurance, a sort of relinquishment of hope that there might be an easier way. He was in effect comparing our current life to a tedious, uphill slog, with no relief in sight; I was dismayed, but the description was not inaccurate.

The challenge of adjusting to a difficult medical diagnosis — whether a devastating injury or chronic illness — is certainly not unique to long COVID. Neither are lingering post-viral symptoms, which can arise from a variety of infections, some as commonplace as strep throat. But there are elements that make long COVID unique.

"First of all, the scale," says Dr. John Baratta, Co-Director of the UNC COVID Recovery Clinic. "It's affected such a large amount of people throughout the world, at all life stages." He adds that "there are also so many [long-haulers] who are younger, in the prime of their lives, balancing work and a family, who would not normally be affected by disabling conditions."

With the onset of any mysterious and debilitating illness, day-to-day experiences and relationships are suddenly and fundamentally altered; we all know this, but it's something that healthy people don't like to think about. Imagine being an able-bodied an active person, in the prime of life — a fitness instructor like Jamie, for example — and suddenly finding yourself bedridden for not only days or weeks, but months. "Sometimes I even needed help walking to the bathroom or getting back into bed," Rebecca recalls of her worst days. "I became so light sensitive, our bedroom was pitch black for months. I was too sick at times to talk." Heather Hogan, a 42-year-old writer and editor in New York City, recalls slipping into depression after her initial COVID symptoms refused to go away. "I am usually the most hopeful, optimistic person," she says. "Finding me without any hope at all was horrifying and terrifying for [my wife] to watch, especially because there was nothing she could do."

Fiona Lowenstein, journalist and trailblazing COVID activist who founded the Body Politic support group for long-haulers, notes that the prevalence of long COVID amongst relatively young people "is forcing folks to have to grapple with issues they did not imagine dealing with until old age." She and her partner, both 26, were unprepared for navigating chronic illness and caregiving, in part because "no one really prepares you for these things, and society likes to ignore the existence of caregiving, illness, and disability, even though pretty much every human on Earth will deal with [them] at some point."

Working from home as an adjunct professor was the only thing that enabled Rebecca's fiancé, Scott, to care for her fulltime over the past year. "I cannot imagine what life would have been like," he says, "if I were juggling a full-time job. I think I our home life would have just imploded. I think it would have broken me — or, rather, broken any remaining sense of normalcy... Something would have to have radically changed."

Like me, many of the long-haulers I talked to resist resorting to platitudes like "what doesn't kill you makes you stronger," or the audacity of seeking silver linings in a pandemic that continues to traumatize the world and has taken half a million American lives. But besides the extreme challenges so many face, there have also been many beautiful and heartening discoveries. Many reported gratitude approaching awe for their caregivers, with more than one expressing the conviction that not everyone would stay with someone so sick. "There's an intimacy that comes from caring for someone and accepting care," Rebecca says. Heather and her long-term partner, Stacy, even got married during lockdown — "in our living room, sitting down, on Zoom." While Rebecca's wedding planning is still on hold due to illness, her relationship is stronger than ever. "I now know the answer," she says, "to whether or not my partner will stay with me in sickness or health."

This time of plague has touched all our lives, exposing flaws and cracks in society's foundations that we now must decide how to repair. A recent article in the Atlantic magazine posited that without grasping the effects of long COVID, we can't fully understand the scope of the pandemic. "Living through [this] has given lots of us an opportunity to reflect on our support systems, or lack thereof," says Dr. Thompson. "I understand the appeal of wanting to think that this is something we will one day be done with, but I don't think that's a realistic appraisal. We won't be shut down in the same way, but I do think our society has fundamentally changed. For one thing, emphasizing preparedness for other potential pandemics — that's not going to go away. We recognize how vulnerable aspects of society are. People who never thought they would be caregivers have been called upon to be caregivers; people who never thought they would need to be taken care of now rely on assistance. Losing the fantasy that you were invulnerable and immortal…That's profound."

Bleak as some days still feel for us long-haulers, there is reason for hope. In February, the National Institutes of Health announced a $1.15-billion initiative to study COVID-19's long-term effects. Meanwhile, guidance on how health care providers can identify long COVID is said to be forthcoming from the Centers for Disease Control and Prevention. Some long-haulers report marked improvement in symptoms after getting vaccinated, and Baratta says "for most COVID-19 survivors, we are still expecting a very significant, perhaps full recovery." Whether this is true or if long-haulers face more serious health concerns as they age, how we care for those around us — and to a larger extent, how we tend to our communities during our time together on Earth — will shape the future. Perhaps, as Lowenstein writes, "Young people coming of age during the COVID-19 pandemic might have a unique opportunity to witness the craft of caregiving, and learn from it."

By Meaghan Mulholland

Meaghan Mulholland is a writer based in North Carolina. More work can be found at her website.

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Covid-19 Disease Essay Health Long Covid Pandemic