The frightening symptoms began in early March, when Ailsa Court of Portland, Oregon, suspects she caught the coronavirus from someone at work. More than four months later, she still has shortness of breath, achiness in her lungs, and a strange tingling in her calves.
But doctors have downplayed Court’s concerns as her health problems have dragged on. At one point, her primary care doctor suggested that perhaps she was just “stressed because of the economy,” she said.
And during a visit to an urgent care center in May — when she feared she might be having a stroke or other neurological problem because she was having memory loss and a crippling migraine, in addition to chest tightness and numbness in her legs — a physician rolled his eyes at her, Court, 35, said. Her issues were nothing more than acid reflux, he told her in a dismissive tone, plus maybe a vitamin deficiency.
The doctor’s diagnosis infuriated Court, a commercial makeup artist, who felt a male patient who went to urgent care with the same set of health concerns would have been taken more seriously.
“‘Gaslighting’ is the word I’ve been using repeatedly,” she said, referring to the psychological tactic of making a person second-guess whether something they know to be true is real. “I’m so ill and some people are telling me this is a figment of my imagination. It truly feels like a nightmare.”
Court is not alone. Across the country, many coronavirus survivors with long-lasting symptoms, particularly women, are dealing with dual frustrations: debilitating health conditions that won’t go away, and doctors who tell them the issue might be all in their heads.
Despite their oath to do no harm, medical professionals’ judgment can be inadvertently altered by deeply ingrained unconscious biases, experts say, and the “hysterical female” patient has long been a dangerous stereotype in medicine.
While there are no studies on how female coronavirus patients are treated compared to male ones, past research reveals a disturbing pattern. Women who are in pain are more likely than men to receive sedatives instead of pain medication; women with the same type of pain as men who go to an emergency department have to wait longer to be seen; and women are up to three times more likely to die after a heart attack than men as a result of unequal care.
In addition to gender, race and ethnicity are major contributors in the type of medical care people receive: Data show that Black patients in acute pain are 40 percent less likely than white patients to receive medication, and Latino patients are 25 percent less likely than white patients.
And while income, education and other socioeconomic factors explain some differences in health outcomes for minorities, experts believe those alone don’t account for all disparities — including the significantly higher rate of maternal mortality among Black women in the United States. They point to implicit biases on the part of health care providers as one explanation.
Dismissed as a ‘mental issue’ or anxiety
Alisa Valdés, 51, an Albuquerque, New Mexico, novelist who, along with her 19-year-old son, Alexander, has been sick since mid-March, has been told by doctors that her problems were a “mental issue,” despite what she says are very real physical complications of her illness, including emergency surgery to remove her gallbladder. The doctors, she said, have been “minimizing me as a woman, minimizing me as a Latina.”
“Nobody is going to come right out and say that they’re discriminating against you for those reasons,” she said. “So what do I have to go by? Intuition, instinct, past experience. The attitude of certain providers. The way they look at you. The way they don’t look at you. The way they shrug you off.”
Valdés’ symptoms have included extreme burning in her digestive tract, unbearable pain in her sternum and upper back, and a loss of appetite. She feels doctors’ biases have influenced the way they treat her son, too: When she took him into the emergency room two months ago because his heart was racing, she said she was stunned when doctors automatically assumed his heart rate must be elevated because he was on drugs, which he has never taken.
Other coronavirus survivors say it is hard to parse out whether their gender or race factored into the response they got from doctors. All they know is they have had their symptoms written off.
Adrienne Crenshaw, 38, of Houston, who is Black, says she has not witnessed explicit racism or sexism during the multiple trips to the emergency room that she has made since she got the coronavirus in mid-June. She has had shooting pains around her heart, skyrocketing blood pressure and tingling in her arms and legs, and has gone to the hospital several times worried she might be having a heart attack.
Doctors have prescribed anti-anxiety medications to Crenshaw, a bartender and former fitness competitor, despite her insistence that her symptoms are not a result of anxiety. Her father died of the coronavirus July 10 — but she has learned not to mention that to her medical providers, since it usually prompts them to suggest her problems are a manifestation of grief and stress.
On one trip earlier this month, she overheard a doctor talking about her to his team with disdain, but she didn’t know why.
“He said, ‘The girl’s perfectly normal, there’s nothing wrong with her,’” she said. “And in my head, I’m like, ‘I’m not perfectly fine. I don’t just go in the ER to take a room up.’”
An effort to help coronavirus ‘long-haulers’
The medical community as a whole has not ignored these so-called coronavirus long-haulers. Health care providers throughout the United States have been working to figure out why they are not getting better, and a handful of post-COVID clinics have sprung up across the country for patients who are having neurological and physical difficulties months after they first got sick.
And in recent weeks, to the relief of long-haulers, top public health officials have recognized that COVID-19 symptoms can last for lengthy periods of time. On Friday, the Centers for Disease Control and Prevention acknowledged in a report that as many as a third of individuals who were never sick enough to be hospitalized are not entirely better up to three weeks after their diagnosis. Meanwhile, Dr. Anthony Fauci, the nation’s top infectious diseases doctor, has said more research is needed on individuals who appear to be suffering from a post-viral syndrome.
Experts say there are many reasons why doctors do not have solutions for patients experiencing prolonged complications from the coronavirus, starting with the obvious: The virus has not been seen before, and they are learning about it in real time.
Dr. Jessica Dine, director of the advanced consultative pulmonary section at Penn Medicine and a pulmonologist who has been treating patients whose symptoms have not let up, said even if a clinician has not seen a set of symptoms associated with the coronavirus before, there are ways to show patients they are still being heard.
“The first step is to recognize that these symptoms are real,” said Dine, who along with her colleagues, has seen patients with ongoing respiratory issues, as well as many of the problems cited by the women interviewed in this story: tingling and numbness in their hands and feet, heart rate and blood pressure fluctuations, and extreme fatigue and dizziness.
“The frustrating part for the patient and the clinician is, we don’t know if this is going to get better and when,” she said.
Carrianne Ekberg, 37, a social media consultant in Gig Harbor, Washington, said she has not received that kind of sensitivity from her health care providers. She tested positive for the coronavirus April 1 and still has times when the shortness of breath and back pain she experienced when she first tested positive return. She also still has days where she is so fatigued, she can’t get out of bed. But doctors have said there is nothing they can do for her and have suggested perhaps she caught another virus on top of the coronavirus or is suffering from anxiety.
“I know they’re probably under a lot of stress and seeing a lot of patients, but it’s so easy to just write, ‘You’re probably going to be okay, this seems to be normal, don’t worry about it, let’s talk again in a few months, keep me posted,’” she said. “That is the type of response I think COVID survivors want to hear, not ‘you have another virus’ or ‘you need to seek mental health help because you’re probably crazy.’”
Avoiding implicit bias
To combat unconscious biases that can affect treatment, clinicians typically are given protocols to follow — checklists to run through to make sure they don’t miss a diagnosis, said Dr. Melissa Simon, a professor of obstetrics and gynecology and the director of the Center for Health Equity Transformation at the Northwestern University Feinberg School of Medicine. When someone goes into the emergency room with chest pains, for example, there is an exhaustive list of laboratory tests that need to be ordered and vital signs that need to be checked to run through possible diagnoses.
With the coronavirus, and the problems it is causing long term, there is not yet a protocol to follow, Simon said.
“We are constructing that list and that differential as we are literally flying the airplane,” she said.
Still, it is within a patient’s rights to ask a doctor why they arrived at the conclusion they did, or to inquire what other diagnoses were ruled out, she added.
Simon said it did not surprise her that women with long-term coronavirus symptoms were having a hard time getting doctors to believe them.
“There are long-standing biases that are omnipresent,” she said.
And while it’s hard when a coronavirus patient is already stressed from being sick, “we have to acknowledge that what the patient is telling us is real, and we have to seek to understand how best to address it,” she said.
Court, the Oregon makeup artist, has been hesitant to contact doctors again after they dismissed so many of her symptoms. Her situation has been compounded by the fact that she never got a positive COVID-19 test: When she first got sick in March, several days after close contact with a woman at work who was sneezing and coughing and had just returned from Italy, then a coronavirus hot spot, her doctor repeatedly refused to give her a test, saying the state did not have the testing capacity. By the time Court arranged to pay for one out of pocket from a private company one month later, the result was negative; she is still certain that she, as well as her husband and two kids, had the coronavirus nonetheless.
The rest of Court’s family has since recovered, but she lives in a state of unknown with her health. Some days, she loses her breath doing household activities, or gets a fever that tops 100 F; on other days, she feels OK. This makes it difficult for her to commit to work. A runner, she is no longer training for a half-marathon like she was before she got sick, and now finds herself panting even from a walk in the woods with her family.
But what has been most frustrating to her is that doctors have doubted her so many times that she has started to doubt herself. Her husband, a former Army combat medic, has been a reality check, reminding her how severe her symptoms are and how many nights she has feared she will die in her sleep.
“I have to remind myself I’m not making this up,” Court said.
She feels the political debates across the U.S. over the coronavirus are making it even harder for patients to be believed.
“Everybody is in this state of questioning reality,” she said. “From the get-go, this country has been gaslit about COVID, and now on an individual level, patients are being gaslit.”