Medical professionals are used to being believed, but as patients, they found that their expertise didn’t matter.
By Ed Yong
Before she caught COVID-19 at a wedding in March 2020, the physician associate spent her days diagnosing and treating people; after she was infected, she turned to her own colleagues for that same care. “At first,” she told me, “I felt a kinship with them.” But when her tests started coming back negative, her doctors began telling her that her symptoms—daily migraines, unrelenting vertigo, tinnitus, severe crashes after mild activity—were just in her head. (I agreed not to name her so that she could speak openly about people she still works with.)
When she went to the emergency room because half her body had gone numb, the ER doctor offered to book her an appointment with a counselor. Another doctor told her to try removing her IUD, because, she remembers him saying, “hormones do funny things to women.” When she asked her neurologist for more tests, he said that her medical background had already earned her “more testing than I was entitled to,” she told me. Being part of the medical community made her no different from any other patient with long COVID, her eventual diagnosis. Despite being a medical professional, she couldn’t convince her own physicians—people who knew her and worked with her—that something was seriously wrong.
I’ve interviewed more than a dozen similar people—health professionals from the United States and the United Kingdom who have long COVID. Most told me that they were shocked at how quickly they had been dismissed by their peers. When Karen Scott, a Black ob-gyn of 19 years, went to the emergency room with chest pain and a heart rate of 140, her physicians checked whether she was pregnant and tested her for drugs; one asked her if her symptoms were in her head while drawing circles at his temple with an index finger. “When I said I was a physician, they said, ‘Where?’” Scott said. “Their response was She must be lying.” Even if she had been believed, it might not have mattered. “The moment I became sick, I was just a patient in a bed, no longer credible in the eyes of most physicians,” Alexis Misko, an occupational therapist, told me. She and others hadn’t expected special treatment, but “health-care professionals are so used to being believed,” Daria Oller, a physiotherapist, told me, that they also hadn’t expected their sickness to so completely shroud their expertise.
A few of the health-care workers I talked with had more positive experiences, but for telling reasons. Amali Lokugamage, an ob-gyn, had obvious, audible symptoms—hoarseness and slurred speech—so “people believed me,” she said. By contrast, invisible, subjective symptoms such as pain and fatigue (which she also had) are often overlooked. Annette Gillaspie, a nurse, told her doctor first about her cough and fast heart rate, and only later, when they had built some trust, shared the other 90 percent of her symptoms. “There was definitely some strategy that went into it,” she told me.
For other medically trained long-haulers, the skepticism of their peers—even now, despite wider acknowledgment of long COVID—has “been absolutely shattering,” says Clare Rayner, an occupational physician who is part of a Facebook group of about 1,400 British long-haulers who work in health care. “That people in their own profession would treat them like this has led to a massive breakdown in trust.” Having dedicated their working lives to medicine, they’ve had to face down the ways its power can be wielded, and grapple with the gaps in their own training. “I used to see medicine as innovative and cutting-edge, but now it seems like it has barely scratched the surface,” Misko told me. “My view of medicine has been completely shattered. And I will never be able to unsee it.”
Medical professionals have a habit of treating themselves. Daria Oller, the physiotherapist, was following her training when, after she got sick with COVID, she pushed herself to exercise. “That’s what we tell people: ‘You have to move; it’s so important to move,’” she told me. “But I kept getting worse, and I wouldn’t acknowledge how poorly I was responding.” She’d go for a run, only to find that her symptoms—chest pain, short-term-memory loss, crushing fatigue—would get worse afterward. At one point, she fell asleep on her floor and couldn’t get back up.
At first, Oller didn’t know what to make of her symptoms. Neither did Darren Brown, also a physiotherapist, who tried to exercise his way out of long COVID, until a gentle bike ride left him bedbound for weeks. He and others told me that nothing in their training had prepared them for the total absence of energy they experienced. Fatigue feels flippant, while exhaustion seems euphemistic. “It felt like someone had pulled the plug on me so hard that there was no capacity to think,” Brown said. “Moving in bed was exhausting. All I was doing was surviving.”
But these problems are familiar to people who have myalgic encephalomyelitis, the debilitating condition that’s also called chronic fatigue syndrome. Physiotherapists with ME/CFS reached out to Oller and Brown and told them that their symptom had a name: post-exertional malaise. It’s the hallmark of ME/CFS and, as that community learned the hard way, if you have it, exercise can make symptoms significantly worse.
Brown has spent years teaching people with HIV or cancer about pacing themselves, mostly by divvying up energetic tasks throughout the day. But the pacing he needed for his post-exertional malaise “was totally different,” he told me. It meant carefully understanding how little energy he had at any time, and trying to avoid exceeding that limit. Brown, Oller, and other physiotherapists with long COVID co-founded a group called Long Covid Physio to discuss what they’ve had to relearn, and they’re frustrated that others in medicine are still telling them, people whose careers were built around activity as a medical intervention, that long-haulers should just exercise. Ironically, Brown told me, doctors are loath to prescribe exercise for the HIV and cancer patients he regularly treats, when clear evidence shows that it’s safe and effective, but will readily jump on exercise as a treatment for long COVID, when evidence of potential harm exists. “It’s infuriating,” he told me. “There’s no clinical reasoning here.”
Neither Brown nor Oller knew about post-exertional malaise or ME/CFS before they got long COVID. Oller added that she initially thought little must have been written about it, “but no, there’s a whole body of literature that had been ignored,” she said. And if she hadn’t known about that, “what else was I wrong about?”
Long COVID has forced many of the health-care workers I interviewed to confront their own past. They worried about whether they, too, dismissed patients in need. “There’s been a lot of Did I do this?” Clare Rayner told me, referring to the discussion in her Facebook group. “And many have said, I did. They’re really ashamed about it.” Amy Small, a general practitioner based in Lothian, Scotland, admitted to me that she used to think ME/CFS symptoms could be addressed through “the right therapy.” But when Small got long COVID herself, some light work left her bed bound for 10 days; sometimes, she could barely raise a glass to her mouth. “It was a whole level of bodily dysfunction that I didn’t know could happen until I experienced it myself,” she said, and it helped her “understand what so many of my patients had experienced for years.”
ME/CFS and other chronic illnesses that are similar to long COVID disproportionately affect women, and the long-standing stereotype that women are prone to “hysteria” means that it’s still “common to write us off as crazy, anxious, or stressed,” Oller said. This creates a cycle of marginalization. Because these conditions are dismissed, they’re often omitted from medical education, so health-care workers don’t recognize patients who have them, which fuels further dismissal. “No one’s ever heard of POTS at med school,” Small told me. (POTS, or postural orthostatic tachycardia syndrome, is a disorder of the autonomic nervous system that is common in long-haulers.) It doesn’t help that medicine has become incredibly specialized: Its practitioners might have mastered a single organ system, but are ill-equipped to deal with a syndrome that afflicts the entire body.
Health-care workers were also overburdened well before the pandemic. “People with chronic disease need time to really open up and explain their symptoms,” Small told me, and health-care workers might be able to offer them only a few minutes of attention. “Because we work in a stressed system, we don’t have the time or mental space for those diagnoses that don’t have easy answers,” Linn Järte, an anesthetist with long COVID, told me. At worst, the pressure of medicine can sap the clinical curiosity that ought to drive health-care workers to investigate a set of unusual symptoms. Without the time to solve a puzzle, you can quickly lose the inclination to try.
Those puzzles are also extremely challenging. Small remembered talking with patients who had ME and “seeing this multitude of issues that I couldn’t even begin to scratch the surface of,” she told me. Her frustration, she imagined, must have come across to the patient. Admitting to a patient that you don’t have the answer is hard. Admitting it to yourself might be even harder, especially since medical training teaches practitioners to project confidence, even when in doubt. “It’s easier to say This is in your head than to say I don’t have the expertise to figure this out,” the physician associate told me. “Before COVID, I never once said to a patient, ‘There’s something going on in your body, but I don’t know what it is.’ It’s what I was trained to do, and I feel terrible about it.”
Over the course of the pandemic, waves of frustrated, traumatized, and exhausted health-care workers have quit their jobs. Several long-haulers did so because of the way they were treated. Karen Scott, the ob-gyn, left medicine in April even though she is now well enough to do some work. “Ethically, I couldn’t do it anymore,” she said. Alexis Misko told me that returning to the profession would feel “traitorous,” and besides, she cannot. She hasn’t been able to leave her house since December 2020. Other long-haulers have lost their jobs, their homes, or even their lives.
Those who recovered sufficiently to return to work are getting used to wearing two often-conflicting mantles: patient and physician. “We’re go-getters who made it to this point in our careers by getting through things at all costs,” Hodon Mohamed, an ob-gyn, told me. Even if health-care workers wanted to rest, medical shifts are not conducive to stopping and pacing. Annette Gillaspie, the nurse, still struggles with about 30 symptoms that make bedside nursing impossible; she’s back at work, but in a more administrative role. And the physician associate is still working with some of the same colleagues who belittled her symptoms. “There are people whom I don’t refer patients to anymore,” she told me. “I have a cordial relationship with them, but I won’t ever view them the same.”
As the pandemic progressed, health-care workers have felt more and more exhausted and demoralized. They’ve been overwhelmed by work, disaffected with their institutions, and frustrated with patients. These conditions are likely to exacerbate the dismissal that long-haulers have faced. And many health-care workers remain ignorant of long COVID. Meg Hamilton, a long-hauler, a nurse, and (full disclosure) my sister-in-law, told me that most of her co-workers still haven’t heard of the condition. Recently, a colleague told her that a patient who was likely a long-hauler couldn’t possibly have COVID, because the disease’s symptoms don’t last past a month. As a recent nursing graduate, Hamilton doesn’t always have the seniority to fight such misconceptions, and more and more she lacks the energy to. “Sometimes I won’t even tell people that I had long COVID, because I don’t want to have to explain,” she told me.
Others feel more optimistic, having seen how long COVID has transformed their own practice. Once, they might have rolled their eyes at patients who researched their own condition; now they understand that desperation leads to motivation, and that patients with chronic illnesses can know more than they do. Once, they might have minimized or glossed over unusual symptoms; now they ask more questions and have become more comfortable admitting uncertainty. When Small recently saw a patient who likely has ME/CFS, she spent more than half an hour with him instead of the usual 10 minutes, and scheduled follow-up appointments. “I never would have done that before,” she told me. “I would have just been afraid of the whole thing and found it overwhelming.” She and others have also been educating their colleagues about long COVID, ME/CFS, POTS, and related illnesses, and some of those colleagues have changed their practice as a result.
“I think those who are transformed by having the illness will be different people—more reflective, more empathetic, and more understanding,” Amali Lokugamage, the ob-gyn, told me. For that reason, “long COVID will cause a revolution in medical education,” she said. But that future relies on enough medically trained long-haulers being able to work again. It depends on the health-care system’s ability to accommodate and retain them. Most of all, it hinges on other health-care professionals’ willingness to listen to their long-hauler peers, and respect the expertise that being both physician and patient brings.