‘Gaslighted by the Medical System’: The Covid-19 Patients Left Behind
When there’s only so much care to go around, the medical system leans too hard on test results — and prejudice
Jessica Kyle took one look at her best friend and began to worry. Kyle, 34, had just arrived in Charleston, South Carolina, to attend her cousin’s funeral. She had arranged to stay with her best friend Leah, whom she hadn’t seen in nearly two years. Immediately after arriving, Kyle saw that Leah was coughing.
It was March 15, 2020, the week when everyone seemed to begin taking the coronavirus seriously. That was the week when many U.S. schools shut down, when news broke that Tom Hanks had Covid-19, and when the NBA suspended its season because a player tested positive. Kyle had already been taking precautions. She made the nearly five-hour drive from her home in Atlanta to Charleston in one shot, not wanting to stop somewhere and potentially get exposed.
Leah, who asked that we use only her first name, did have Covid-19 symptoms: cough, fever, and shortness of breath. She’d gone to see a doctor the day before, but the physician reassured her that she didn’t have the coronavirus. He didn’t give her a test, even though she asked for one. The doctor was so dismissive about the possibility that she could have the coronavirus, “he kind of made it seem like I was crazy,” she says.
Kyle was uncomfortable with the idea of staying with her sick friend but didn’t see any other choice. Then, her worst fears materialized: Two days after returning home to Atlanta, she developed the same symptoms. “I had a real heaviness in my chest,” she recalls. “Every breath was a chore.”
Kyle got worse, and on March 24, she went to urgent care. It was cold and raining, and she had to wait outside in a crowded tent. There, a nurse took her blood pressure and temperature and, as Kyle recalls, told her, “You have a cold. Go home.” Kyle asked for a Covid-19 test but didn’t get one.
Over the next few days, Kyle began feeling better — until she didn’t, and the pain in her chest intensified. She had to sleep on her stomach to breathe. On April 3, she drove herself back to the urgent care, where a doctor told her the same thing the nurse had: She had a cold, maybe bronchitis. She begged for a Covid-19 test but again was denied. In desperation, Kyle posted what she was experiencing on Facebook. Some physicians she knew, who ran a private clinic, offered to save her a test. The next day, she got tested, and on April 7, the test came back positive.
That’s when everything changed. Doctors stopped scoffing at Kyle’s symptoms; soon after, she was diagnosed and treated for pneumonia, a staphylococcus skin infection, and a kidney infection—all possible Covid-19 complications. Her boss, who had laughed at her when she told him she suspected she had the coronavirus, apologized profusely. He started checking in on her, which he hadn’t done before, even though her symptoms hadn’t changed. “It was like night and day,” Kyle says. With the positive coronavirus test in hand, “no one was dismissive of me or what I was experiencing.”
In the early days of the pandemic, few Americans with coronavirus symptoms were able to get a test. On February 27, the CDC announced that Covid-19 was spreading person-to-person within the country, yet over the next week, according to the Covid Tracking Project, the nation tested only 2,319 people. By comparison, South Korea tested more than 66,650 people during its first week of suspected community transmission. Unless Americans were sick enough to be hospitalized, “the recommendation was you discharge them — you don’t test them — because you just say, ‘Go quarantine,’” says Jonathan Ilgen, MD, an emergency medicine physician and researcher at the University of Washington Medical Center in Seattle.
In theory, testing status shouldn’t matter: When individuals are sick, they should be evaluated and given necessary supportive care. But many patients who spoke to Elemental for this piece — most of them women — said they felt dismissed by doctors and nurses when they did not have a positive coronavirus test, even when they had symptoms consistent with Covid-19.
Making matters worse, new research shows that some coronavirus patients develop long-lasting, debilitating symptoms. In a study published in July, a team of researchers from the CDC and a handful of U.S. universities reported that 35% of Americans who had tested positive for the coronavirus still had symptoms two to three weeks later. Another small, more worrying study found that among patients in Italy who had been hospitalized for the coronavirus, 87% still had symptoms 60 days after they started feeling sick. And a small study conducted in Germany found that 78% of Covid-19 patients still had lingering heart problems two to three months out.
It’s unclear as yet just how many coronavirus “long-haulers,” as they call themselves, are out there — in part because few researchers are studying them, and because governments have been slow to recognize them. But if Facebook groups are any indication, hundreds of thousands of Americans could suffer from persistent Covid-19 symptoms, a number that grows every day. A recent article in TIME magazine argued that since more than 5.5 million Americans have now been confirmed to have had the coronavirus — a number that is almost certainly a vast underestimate — even if 10% of patients have persistent symptoms, that’s still more than half a million people.
Even in normal times, persistent mysterious symptoms, combined with an uncertain diagnosis, can be a recipe for stigma — but the pandemic may be worsening this phenomenon. In a study published on July 25 that hasn’t yet been reviewed by other scientists, Natalie Lambert, PhD, an associate research professor at the Indiana University School of Medicine, surveyed more than 1,500 long-haulers who were members of the Facebook group Survivor Corps, now more than 96,000 members strong. She found that although many patients reached out to their primary care physicians for help, some doctors were, in Lambert’s words, “unable or unwilling to help patients manage [their symptoms] due to lack of research.” Another survey conducted by volunteers from the Body Politic Slack group was published without peer review in May. It found that among a sample of 640 suspected Covid-19 patients in which more than three-quarters did not get positive test results, 71.5% felt that medical staff had been either not attentive or only somewhat attentive to their needs. “Respondents who felt unsupported often reported having been dismissed or misdiagnosed by health professionals,” the authors wrote. “They were told to stay home, and sometimes denied resources such as prescriptions and further testing.”
“It feels like being gaslighted by a disease — or by the medical system.”
In many ways, it is unsurprising that these patients are not getting sufficient care and attention. It’s unclear how to treat some mysterious Covid-19 symptoms, given that the coronavirus is still poorly understood. And as has been covered at length, U.S. doctors are stretched extremely thin right now; they do not have the tools and resources they need to treat their patients or even protect themselves, and they are dealing with death and grief on a daily basis. They are forced to ration care, sacrifice their own needs, and keep up with ever-changing recommendations and rules. Yet the unfair pressures and expectations the pandemic has placed on physicians have real impacts on patients. Many patients feel slighted, as if they weren’t sick enough to warrant attention or help, especially if they didn’t have positive coronavirus test results. These patients are not only suffering but also scared, unsure of how to manage their confusing and debilitating symptoms alone.
Becca Blackwood, 34, who lives in Montreal and tested positive for the coronavirus in March, says she hears horror stories from the friends she has made in coronavirus-related Facebook groups, including Survivor Corps. “We talk a lot about how I was ‘lucky’ enough to get a positive test, because at least I can get health care now,” she says. “There are so many people globally that are just not able to access proper treatment; they’re being denied referrals.” And, she says, many of them had the exact same symptoms she did.
Patients who do get tested but whose tests come back negative also report being stigmatized. “It feels like being gaslighted by a disease — or by the medical system,” says Jessica Standifird-Rich, 48, who lives in Portland, Oregon. In mid-March, Standifird-Rich, who is at high risk for coronavirus complications because she has Type 2 diabetes, went to her local urgent care with a sore throat, cough, high fever, and shortness of breath. There, a doctor diagnosed her with pneumonia. She was not given a coronavirus test despite asking for one, and her visit summary did not instruct her to quarantine. She finally got a coronavirus test five weeks later, when she was still feeling sick, and it came back negative. She recalls an urgent care clinician telling her that the negative result was definitive. “We have the best tests there are,” she recalls him saying.
In fact, many people who actually have the coronavirus get negative test results. In a meta-analysis and systematic review of studies published in May 2020 in the Annals of Internal Medicine, researchers at the Johns Hopkins School of Medicine and the Johns Hopkins Bloomberg School of Public Health found that coronavirus PCR tests have the highest chance of working — coming back accurate and positive — three days after a person develops symptoms, but that even on this ideal day, the tests incorrectly come back negative for one out of every five coronavirus-positive patients. On a person’s first day of symptoms, the tests come back negative 38% of the time, on average, and on a person’s 16th day of symptoms, the tests are incorrectly negative 66% of the time. “Those RT-PCR based tests are really the best tool we have,” says Lauren Kucirka, MD, PhD, study author and Johns Hopkins Medicine physician, but they have a “high false negative rate. There’s kind of no getting around that.”
That women without positive test results feel dismissed by doctors does not come as a surprise to researchers who study bias in medicine. Decades of evidence show that doctors treat patients differently depending on social characteristics, such as gender and race, as well as medical characteristics, such as whether symptoms can be explained or tied to a particular diagnosis. “All these things are nested in each other that matter for what someone gets diagnosed with, and therefore how they get treated — and it goes way beyond the signs and symptoms of their disease,” says Karen Lutfey Spencer, PhD, a health and behavioral scientist at the University of Colorado Denver who studies medical decision-making. “Who the patient is, who the doctor is, what the setting is that they’re seen in, all matter a lot.”
Sexism, for one, is a huge problem. Women have long been treated dismissively by doctors, and their symptoms are more often attributed to psychological causes, such as anxiety and depression. “Women’s complaints get discounted as minor, while men’s complaints get taken quite seriously and sometimes more seriously than they warrant,” says Irena Stepanikova, PhD, a medical sociologist at the University of Alabama at Birmingham. Studies have shown that women in pain have to wait longer than men before they’re given painkillers, and women are more likely than men to be prescribed sedatives — drugs used to treat anxiety — rather than painkillers. Women also must wait longer to be diagnosed with deadly diseases, including cancer and heart disease. One study Spencer co-authored found that women were twice as likely as men to be misdiagnosed with a mental illness when their symptoms were, in fact, caused by heart disease.
“Women often get persecuted, particularly when there’s an illness that occurs that doesn’t have a definite cause,” says Leonard Jason, PhD, a psychologist who directs the Center for Community Research at DePaul University. Doctors say, “It’s hysteria, it’s depression — get on with your lives.”
Physicians “have to be able to hold the abnormal result in their hands. And if they don’t, they say, ‘Well, all the tests are normal, so nothing’s wrong. Must be in your head.’”
Many women interviewed for this piece say doctors told them that their coronavirus symptoms were all in their head. WhiteFeather Hunter, a 47-year-old who lives in Quebec, Canada, never got a positive coronavirus test and says several physicians told her that her symptoms — which included blood clots and pericarditis, an inflammation of the lining of the heart — were caused by anxiety. “The last of the four male doctors who told me it was just anxiety was extremely condescending and exasperated, told me to go off all the medications I was taking, and when I asked for further advice, he said to speak to a psychologist. I felt extremely demoralized, stepped on, and angry, and at a total loss for what to do,” she says. Hunter has reason to believe she could have been exposed: In the months preceding her symptoms, she had been renting a room in a house in Australia, which had a frequent turnover of travelers from around the world. Also, a few days before, her partner had returned to Australia from Cyprus, where he had been visiting an ailing relative.
Certainly, some patients without positive coronavirus tests didn’t have the coronavirus. Many viruses can cause fevers and respiratory symptoms. But regardless of the cause, patients’ health issues should be taken seriously. And researchers say they have no doubt that test-related bias exists. If two patients have the same coronavirus symptoms, but one has a positive test result and one doesn’t, “I have absolutely no doubt in my mind that they are going to be treated differently,” Stepanikova says. Benjamin Natelson, MD, a neurologist who runs the Pain and Fatigue Study Center at the Icahn School of Medicine at Mount Sinai, agrees. Physicians “have to be able to hold the abnormal result in their hands,” he says. “And if they don’t, they say, ‘Well, all the tests are normal, so nothing’s wrong. Must be in your head.’”
Since the coronavirus can incite vague, hard-to-measure symptoms, such as fatigue, headache and brain fog, it is the perfect type of ailment to inspire physician disbelief.
Some doctors haven’t completely dismissed their patients’ symptoms but attributed them to other, more common ailments — even ailments that don’t make much sense. On April 23, Natalie Nowell, a 34-year-old who lives in Memphis, Tennessee, developed classic coronavirus symptoms: fever, shortness of breath, and chest tightness. She made a telehealth appointment with a doctor in her primary care practice, who suggested she go to the emergency room for a coronavirus test. There, she tested negative. Over the next week, she felt worse and worse. “I truly thought I was going to die in my sleep because of how unable I was to breathe,” she says. Nowell then made another telemedicine appointment with the same physician she’d seen initially, and when she mentioned her negative test result, the doctor suggested she might instead have a urinary tract infection. “It’s bonkers to me, since he specifically asked if I had pain while urinating, and I said, ‘No, no issues at all in that area,’” Nowell recalls. “He then said, ‘Well, let’s just call it a UTI, or maybe a stomach infection, or a sinus infection.’” A few days later, Nowell was able to get another coronavirus test. She tested positive.
Since the coronavirus can also incite vague, hard-to-measure (and treat) symptoms, such as fatigue, headache, and brain fog, it is the perfect type of ailment to inspire physician disbelief, especially among women. “If there hasn’t been enough medical research about a disease yet, there are a lot of patient reports that [doctors say] the problem ‘isn’t real,’” Lambert says.
Take fibromyalgia, a disease that causes chronic debilitating pain. It was long dismissed by the medical community, in part because there’s no diagnostic test for it, women are more commonly affected by it than men, and physicians didn’t know how to treat it. It was “pooh-poohed by doctors because there was nothing they could do about it,” Natelson says. “But now they have these FDA-approved drugs, so the doctor says, ‘Well, you know, I think fibromyalgia is real, because I can treat it.’” (Complicating matters, research suggests that viral infections themselves can incite fibromyalgia and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). In a 2009 study, researchers followed up with more than 230 survivors of the 2003 SARS epidemic in Hong Kong and found that 27% met criteria for ME/CFS. So it’s possible that even after some patients fully recover from the coronavirus, they will go on to experience persistent fatigue and pain.)
In her book Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick, journalist Maya Dusenbery explained that Western medicine has become so focused on causes and explanations that it often dismisses or misinterprets unexplained symptoms, especially in women. “Patients’ subjective reports of what they felt — pain, dizziness, nausea, et cetera — were becoming ‘complaints’ that became symptoms of a disease only once their doctor — assisted by the ever-growing arsenal of laboratory tests and technologies he’d begun accumulating by the beginning of the twentieth century — found an objectively observable cause that explained them,” she wrote. “Any symptoms it couldn’t yet see and explain — particularly those that occurred in women — could be blamed on the unknowable ‘unconscious mind,’ a theory that medicine has liberally utilized whenever it comes against the limits of its knowledge.”
Again, there’s a critical reason why doctors aren’t able to prove the level of care patients need right now: They are stressed and exhausted, and they don’t have the resources to treat all patients thoroughly. They have essentially no choice but to send home patients they know are sick but are probably healthy enough to survive so they can focus on patients most at risk for dying.
“In the context of vague complaints — particularly complaints in somebody who’s otherwise pretty well — it is quite possible that things were minimized or things were blown off,” Ilgen concedes. “Work in the emergency department right now is really, really hard. It’s really hard. And I have no doubt that the care that’s being delivered is different.”
Some patients told me that doctors advised them to eschew further tests and treatment in order to avoid being further exposed to the coronavirus in the hospital — so it’s possible that some of the dismissiveness patients experience stems from good physician intentions, even if the advice may be misguided.
Still, there’s no question that overworked physicians are less effective physicians. Research has shown that health care workers make more medical mistakes and provide poorer care when they experience high levels of stress. Studies also find that when physicians are pressed for time and have limited medical information about a patient, they rely more on stereotypes and make decisions colored by those stereotypes.
In a small 2014 clinical trial, doctors read vignettes about Black or white chronic-pain patients under one of two conditions: In the first, the doctors felt pressured for time and had to split their attention between the patient and something else. In the second, the doctors weren’t under time pressure and could focus singularly on their patient. Researchers then analyzed how the doctors in the two conditions recommended treating their patients. They found that male doctors in particular were less than half as likely to prescribe painkillers to Black patients when they were feeling stressed. As the study concluded, “male physicians were using controlled processes to ‘correct’ for racial stereotypes when they had sufficient cognitive resources to do so but were influenced by racial stereotypes in their decision making when deprived of such resources.”
Harried physicians may well be providing poorer medical care to people of color and women right now; Black and Hispanic Americans are indeed more likely than white Americans to die from the coronavirus.
Add diagnostic uncertainty to the mix, and bias only worsens. A 2003 Institute of Medicine report argued that when doctors have “difficulty accurately understanding the symptoms” a patient has, they put more weight on stereotypes or other preconceived ideas they have about the patient. “The consequence is that treatment decisions and patients’ needs are potentially less well matched,” the report concluded.
Importantly, though, no studies yet show that coronavirus testing status has been biasing treatment decisions and outcomes on a broad scale. It may well be that the patient stories told in this piece are unfortunate but as yet highly uncommon. Still, given the pernicious history of bias in medicine, the ways in which doctors have historically treated new and uncertain conditions, and the possibility that many thousands of coronavirus survivors could suffer from mysterious symptoms for months, researchers say it’s prudent to at least investigate the issue.
There is some good news in all of this: Coronavirus tests are much easier to come by than they used to be. A much higher percentage of coronavirus patients today get tested and test positive. Still, this doesn’t solve the problem for the thousands of Americans who had the coronavirus early on, couldn’t be tested, or got a false negative result and feel they have been dismissed because of it. And testing is not equally available to all: A July investigation by ABC News and FiveThirtyEight reported that there are fewer testing sites in U.S. areas inhabited by racial minorities, and that these testing sites are understaffed and have longer wait times.
Moreover, the symptoms doctors ignore due to stress, preconceptions and diagnostic uncertainty can sometimes be life-threatening. Lisa O’Brien, 42, who lives outside of Salt Lake City, Utah, has never had a positive Covid-19 test, but she experienced an array of symptoms starting in early March that included a sore throat, shortness of breath, body aches, nausea, rapid heart rate, and fatigue. Ten weeks in, she noticed a lump in her arm that she worried might be a blood clot — a common complication of Covid-19 — and made a telemedicine appointment with an urgent care physician. After telling him her concerns, the doctor asked if she had a history of mental illness, told her that viruses don’t last 70 days, and declared that she definitely didn’t have a blood clot in her arm. He did, however, give her a phone number for a local therapist so she could get psychological help.
O’Brien then went to a different urgent care center the next day, where doctors immediately diagnosed a blood clot in her arm. Just over a week later, she was back in an ER again, because her heart was racing and her oxygen levels, as measured with a pulse oximeter, were worryingly low. There, doctors told her she was probably just suffering from anxiety. She begged them to give her a test known as a D-Dimer test, which she had heard from other coronavirus survivors can identify hidden blood clots. They did — and it identified a pulmonary embolism, a blood clot in her lung. “I joke that it took me 10 weeks and two blood clots before my family, friends, and doctors believed that I had Covid,” O’Brien says.
The stories of Jessica Kyle and her friend Leah also drive home the range of experiences people can have — even with the same symptoms. Leah, who still has a cough, never had a coronavirus test. She requested one multiple times, but doctors never said yes. She is certain she had Covid-19, but her doctors, as well as friends and family members, communicate their doubt through their words and body language. Kyle, on the other hand, has felt vindicated ever since getting her positive test in April; her medical complaints have been taken seriously, and she’s finally starting to feel better. Even though Leah may have infected her, Kyle feels for her best friend. “She has felt just all alone,” Kyle says. “She just feels completely dismissed.”