‘Gaslighted by the Medical System’: The Covid-19 Patients Left Behind
By: Melinda Wenner Moyer
Tags: Healthcare, Health, Science, Coronavirus, Covid 19

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.