It was the phantom smells that first troubled Courtney Evans: the pungent scent of black pepper when no one was using it, the reek of burning cigarettes even though no one in the house smoked. The Takoma Park mother of two then developed a low-grade fever; a “noisy gut,” as she calls it; and a food aversion to everything but oranges. In late April 2020, about two weeks after her symptoms began, she was tested for COVID-19. The test came back negative.
Her doctor at the time assured her that, at 38 and healthy, she would surely be feeling better soon, she says. Instead, her symptoms dragged on, and new ones emerged. Fevers began setting in daily, and so did excruciating headaches, gastrointestinal issues and dysautonomia—a nervous system disorder that affects involuntary functions like heartbeat, breathing and digestion. She developed heart palpitations that kept her from sleeping and cognitive disorders that would “come on like a fog,” she says, and leave her staring blankly at her computer screen. Some of her symptoms would abate, only to return a few weeks later.
She was sure these were residual symptoms of COVID, but her doctor pushed back. If it had been COVID, she would have gotten better by then—or ended up in the hospital, Evans recalls her then-doctor telling her. “The gaslighting was just terrible,” Evans says, looking back. “Knowing what we know now…it’s unsurprising that I had a negative nasal swab after 10-plus days of symptoms.”
In December 2020, she met with doctors at the now-shuttered George Washington University COVID-19 Recovery Clinic in Washington, D.C. They clinically diagnosed her with Long COVID and referred her to a new primary care physician, she says. Eventually she began seeing a speech therapist who helped her with the cognitive challenges she’d been experiencing—what many people refer to as “brain fog,” a condition that she now knows is common among Long COVID sufferers. “It was good to be validated,” she says.
Yet more than two years later, Evans, now 40, has not returned to her pre-COVID health. She still suffers from extreme post-exertional malaise, low-grade fevers and other symptoms that plague her in waves. A political assistant with the International Association of Fire Fighters in Washington, D.C., she filed for Americans with Disabilities Act accommodations so she can continue to work remotely, even as her coworkers have started to return to the office. Now she sleeps during the day when she’s too exhausted to tackle a project, and crams late into the night in between “crashes” to meet deadlines. Earlier this year, she pulled back her application for a promotion when she realized the position would require travel—something she is unable to do easily.
“They’ve been very, very gracious with their accommodations,” she says of her new supervisors at work, who have given her extra lead time on projects and emailed her detailed written instructions, rather than relying on oral ones, since her cognition is still weak.
To keep her home life together, her in-laws moved up from Alabama and bought a house nearby. Now they come over practically every day to help out. Evans’s husband, Sterling High, 39, transitioned to part-time status as an intelligence analyst at the National Geospatial-Intelligence Agency. That way, he can take care of her, the house and the couple’s two kids, who haven’t gone back to in-person school since the pandemic began. The children, who fell ill with COVID at the same time as Evans, have lingering symptoms too, she says, including dysautonomia and fatigue.
Four-year-old Milly has yet to start preschool and 8-year-old Ethan is going to school remotely through Montgomery County Public Schools’ Virtual Academy. “On days when he’s crashing sometimes, he gets these headaches and these stomachaches, and he has to lie down for a little while,” Evans says.
Evans’s husband’s switch to part-time status meant a 25% drop in his salary as well as lost medical and other benefits that are offered only to full-time employees. “We’ve taken a pretty big financial hit,” she says.
But what’s most “terrifying and frustrating and demoralizing,” she says, “is that it’s like walking across a trip wire, and you don’t know where it is. … I can have a good day, like a really good day, and I do things and I try to catch up…and I won’t find out until two to three days later when I start to crash that I had overdone it. … All I can do [then] is drink a lot of Pedialyte and rest and just wait it out.”
Evans is one of an untracked number of COVID “long haulers” in Montgomery County whose COVID-related symptoms have persisted or worsened in the months—and in some cases, years—following their bout with the virus. Though many people refer to the syndrome as Long COVID, its official name is Post-Acute Sequela of COVID-19, or PASC. It’s estimated to affect between 10% and 30% of all post-COVID patients, potentially affecting up to 23 million Americans, according to the U.S. Government Accountability Office. Studies show it can strike anyone who contracted the coronavirus, regardless of the strain they had or the severity of their original illness. In fact, 32% of the long haulers who participated in a University of California study published in March 2021 reported being asymptomatic at the time of their initial diagnosis.
Hospitals around the country have opened support clinics targeting Long COVID sufferers, but none of these programs are offered at hospitals in Montgomery County, according to local hospital and county officials. Medstar Health’s National Rehabilitation Hospital, in Washington, D.C., runs a COVID Recovery Program for Maryland, Virginia and D.C. residents struggling with Long COVID symptoms. GWU’s COVID-19 Recovery Clinic, where Courtney Evans was treated, closed its doors on July 1, after nearly two years in operation, says Dr. Jillian Catalanotti, associate professor of medicine and of health policy and management with GWU Medical Faculty Associates. “We’re all really realizing that Long COVID is potentially a chronic condition,” Catalanotti says. “Like all chronic conditions, we feel strongly that it’s moving into the purview of primary care physicians.”
Experts say Long COVID is particularly tricky to diagnose because of the sheer number of symptoms it encompasses. In July 2021, The Lancet’s eClinicalMedicine website published the results of an online international study led by University College London that involved nearly 4,000 Long COVID patients from 56 countries. The study found that participants experienced more than 200 different symptoms—with an average of 14.5 symptoms per person—affecting virtually every organ system in the human body. Six months after recovery from COVID, the most frequent symptoms study participants reported were fatigue, post-exertional malaise and cognitive dysfunction. More than 85% experienced regular relapses, with exercise, physical or mental activity, and stress as the main triggers. Nearly half reported needing a reduced work schedule, and 22% said they had to stop working altogether due to their health conditions.
“The misery that imbues COVID knows no bounds,” says Diana Berrent, the founder of Survivor Corps, a global, grassroots organization that compiles COVID-19 data and research tools—and that hosts a Facebook forum for long haulers to share their struggles. Berrent, a former photographer and attorney who divides her time between Bethesda and Los Angeles, founded the organization shortly after she contracted COVID in March 2020. Her symptoms lingered for nearly a year, but she doesn’t consider herself a long hauler. “We have 200,000 members, each with their own stories, and each one is heart-wrenching,” she says.
In February 2021, the National Institutes of Health (NIH) announced a $1.15 billion federally funded research study on Long COVID. But Berrent—who has played an advisory role on several NIH committees related to Long COVID—says the pace of the project is unacceptable. “Millions of Americans are languishing and need immediate relief,” she says. “We need multi-pronged inquiries into both the mechanism of [the] disease and potential remedies.”
“I would love to snap my fingers and make it all happen,” counters Dr. Walter Koroshetz, director of the National Institute of Neurological Disorders, and a co-director of the NIH initiative. “We’re not exactly sure [of Long COVID’s] biological basis,” and until that’s figured out, finding a cure is unlikely, he says. Koroshetz admits that COVID presents a unique opportunity for researchers. “You have millions of people infected and most of them get better, but a percentage of them don’t, so you can actually do a comparison …We’ve never had an opportunity to do what we can do now.”
With chronic Lyme disease and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), people are often diagnosed years after their symptoms first appear, hindering advancements in treatments and cures, Koroshetz says. “COVID is actually a natural experiment,” and the “best chance,” he says, to figure out why some infections—COVID, Lyme disease, ME/CFS and more—trigger “a cadre of [long-term] symptoms” in a subset of people. But he “can’t be confident in something no one’s ever done before,” he says. “[There are] a lot of diseases where we have no treatment …I just hope this is not going to be one of them.”
Unlike with most diseases, “patients have become the true experts on Long COVID,” and the medical community is learning from them, Berrent says. For example, she says, after her 12-year-old son lost an adult tooth nine months after recovering from the virus, she posted on Survivor Corps to ask whether anyone else had experienced a similar dental phenomenon after their bout with COVID. “The answers came pouring in …teeth falling out, crumbling, cracking, all with no blood loss,” Berrent says, pointing out that “we really can’t rely on even clinical physicians for this [type of] data because they are not seeing enough people, and the symptomology can be so varied from person to person.”
Last year, Berrent’s organization partnered with scientists from Yale University and the University of Pennsylvania to study two of the virus’s symptoms that she believes cause the most human suffering: Parkinson’s-like tremors and feelings of internal vibrations. These symptoms are among those that led to the suicide in June 2021 of acclaimed Hollywood screenwriter Heidi Ferrer, according to Ferrer’s husband, Nick Güthe. In newspaper and magazine articles, he says that his wife, a writer on television shows Dawson’s Creek and Wasteland, suffered for 13 months with Long COVID before taking her life. “Watching Long COVID systematically take her apart, organ system by organ system, was the most terrifying deterioration of a human being I have ever witnessed,” Güthe wrote in January 2022 in The Guardian.
“With COVID it’s a multi-system inflammatory disease,” adds Dr. Walter Faggett, a pediatrician and former chief medical officer for the DC Department of Health. He’s concerned that many patients with serious Long COVID symptoms show up in the emergency room and ER doctors are not sufficiently familiar with the syndrome. Long COVID patients, he says, “present a real diagnostic challenge.”
Antonio King, a 47-year-old voiceover actor and security supervisor now living in Silver Spring, spent nearly a year as an inpatient at four facilities across the greater D.C. region after he contracted COVID in August 2021. A single parent of a 13-year-old son (he also has two daughters in their 20s), King and his son were staying with his girlfriend in Woodbridge, Virginia, at the time of his diagnosis. He was not yet vaccinated (now he is), and days after he contracted the coronavirus, his breathing became so labored that he was admitted to a nearby hospital. There, he suffered a collapsed lung, spent two months in a coma and ended up needing an emergency tracheotomy.
He was eventually transferred to a rehabilitation center near his girlfriend’s home, then to another Northern Virginia hospital (after contracting pneumonia), and then to FutureCare Pine-view, a rehabilitation center in Clinton, Maryland. In April 2022, nearly nine months after his original diagnosis, he checked out of that facility, and he and his son moved into the two-bedroom apartment shared by his 64-year-old mother, his sister and her husband. King’s son had been staying with friends and relatives during his time as an inpatient. “We’re technically homeless,” King says of himself and his son.
Physically unable to work for many months, either as a voice actor or at his job at Allied Universal Security Services, he now uses a cane to get around. Balance, muscle wasting and shortness of breath are his most challenging symptoms, he says. “My voice is not where it used to be, and I pretty much hobble everywhere…it’s overwhelming and frustrating.”
King says he was in excellent health before contracting COVID and that he worked out regularly. His internist, Dr. Kathryn Kelly, gave him the names of some physical therapists to help him improve his balance and regain his strength, but he has yet to contact any of them, he says.
Kelly, whose office is in Silver Spring, says she has a diverse array of patients, and those who didn’t have access to quality health care before the pandemic often have pre-existing conditions that make it hard to know whether their symptoms were due to COVID, aggravated by COVID, or not related to the coronavirus at all. She says that several of her asthma patients who had COVID are now having more significant issues with their breathing. But “they’ll say, ‘I’m feeling short of breath with my asthma,’ ” she says. “They wouldn’t say, ‘I have Long COVID,’ ” even if the virus was a contributing factor.
Long COVID is easier to confirm in patients who had no underlying conditions before their coronavirus diagnosis, Kelly says, estimating that about 5% of her patients overall are clearly Long COVID sufferers. “Most of them,” she says, “are having trouble with brain fog and they have trouble with executive functioning.”
On a sunny day this past April, Michael Clark, 33, is relaxing on an Adirondack chair on the front porch of the Clarksburg home he shares with his wife and 4-year-old son. He’s sipping herbal tea—he gave up caffeine and alcohol as part of a long list of diet and lifestyle changes that he made after Long COVID took over his life nearly two years ago. He estimates that he’s spent nearly $20,000 of his savings on counseling, hyperbaric oxygen, intravenous vitamin therapy, acupuncture and a handful of other remediations that have helped mitigate some of his symptoms.
A certified public accountant, and controller and director of finance for a biopharmaceutical company, Clark has created a five-page, single-spaced guide for newly diagnosed long haulers. It begins: “Welcome to Long Covid 101.” He’s posted it on several Long COVID support-group websites in hopes that his advice will save other long haulers from making the same mistakes he made early on. His first recommendation: “Rest, rest, and rest!”
For Clark, who used to be “at the gym at 6 a.m. and at work by 8,” he says, his journey with COVID started when he began experiencing shortness of breath, chest pain, fatigue, and dizziness in March 2020. The one symptom he didn’t have was a fever, he says, so he wasn’t eligible for a PCR (polymerase chain reaction) test—the COVID test that is considered most accurate but must be performed in a doctor’s office or lab.
Over the next several weeks, a handful of telehealth doctors on his medical plan told him to “give it time,” he says, so he tried to maintain as normal a schedule as he could. But the fatigue was so debilitating, he often went to bed at 8:30 at night, and still needed three or four naps spaced throughout the day to stay on top of his work. And his shortness of breath sometimes felt “terrifying,” he says.
Eventually he met in-person with a general practitioner, an asthma and allergy specialist, and a pulmonologist, and was clinically diagnosed as having contracted COVID. He says he was one of the first patients to sign up for Penn Medicine’s Post COVID Rehab Clinic, in Philadelphia, where the focus was on in-person physical therapy and strength reconditioning. But long after he completed the program, he’d still find himself relapsing, having days where he’d sleep 16 hours and still be exhausted.
He’ll never forget the afternoon he spent two hours standing in his kitchen, chopping vegetables to make soup. The process left him so exhausted that he couldn’t stay awake. The next morning, “my whole body was sore, as if I ran a marathon,” he says. He remembers thinking, I used to run; I used to lift weights… now making vegetable soup makes my muscles sore.
Since then, he says a cardiac MRI has revealed scarring on his heart from COVID-induced myocarditis (inflammation of the heart wall); he’s completed voice and speech therapy for muscle tension dysphonia (a hoarseness of his voice caused by many months of throat constriction); and he’s started taking beta blockers to help manage his coronavirus-related tachycardia, or rapid heartbeat. Without the medications, he says, “If I were to stand up, my heart rate would jump up 30, 35, 40, 45 beats per minute.”
One of the saddest parts of his illness is that he can’t play with his son the way he’d like, he says. “I can take him to the playground, but I can’t run around with him. We can go on walks, but I can’t chase after him. Even just picking him up sometimes…I’ll feel strain in my chest.”
Clark has written essays about his Long COVID journey that he shares online with fellow sufferers. One of his essays begins: “How do you heal from that which is presently untreatable? How do you wake everyday living in disharmony with nature: a body that betrays you; a psyche that distorts; emotions that have run amuck.”
Still, he says he’s one of the lucky ones. “Every day on my support groups, people post about how they lost their job, they’re selling their house, they are selling their car, because they are too sick to work,” he says. “A lot of [finding relief] is experimenting and trying on your own as to what you can do and what you’re willing to do. I am fortunate enough… that I have the financial means to put some money into experimenting, but you think about how many people can’t.”
This story appears in the September/October 2022 issue of Bethesda Magazine.