Different symptoms, same story: the medical establishment ignoring Black women’s suffering from long COVID ( Photo: tommaso79, Getty Images Signature).
This article was originally published on Word In Black.
In March 2020, Margot Gage Witvliet had managed to board one of the last flights leaving Amsterdam to return to her family in Houston, Texas. It was very good luck: as the COVID-19 pandemic raced around the globe, states, localities, and entire countries were closing down, and airlines were stopping their operations.
A university professor and social epidemiologist, Gage Witvliet understood exactly what it meant that a new virus was making people around the world very sick—and, in many cases, killing them. What she didn’t know was that, 10 days after that flight, she would get the flu-like symptoms of COVID-19 infection.
“I am not someone who has struggled with a chronic illness, in fact I have rarely been sick with the common cold or flu. I have never broken a bone and I had no comorbidities,” she says. “I have two healthy children and before COVID-19, I was a hands-on active mother. Women in my family have consistently lived into triple digits. By the second week of March, all of that changed.”
When Gage Witvliet came down with COVID-19, however, she also joined the ranks of countless Black women whom medical professionals treated as if their illnesses weren’t severe or were just bad cases of anxiety. In short, they became victims of what Gage Witvliet calls “medical gaslighting.”
“I was not listened to by doctors, not taken seriously, and infantilized,” she says. “Doctors tried to make me believe that my illness was all in my head.”
At one appointment, “the doctor spoke the entire time with my husband, instead of speaking with me — the actual patient who was a 38-year-old woman with a Ph.D. in social epidemiology and public health,” Gage Witvliet says.
At that time, the medical community believed that a fever and cough had to be present for a patient to have COVID-19. But Gage Witvliet didn’t have either one.
“Hard Time Being Believed”
“This made an already stressful medical situation even more horrendous,” she said in a published medical journal article, “How COVID-19 Brought Medical Gaslighting to the Forefront and Made Invisible Illness Visible: Lessons from the BIPOC Long COVID Study.”
”I joined a COVID-19 online support group, where I witnessed woman after woman, irrespective of their socioeconomic status, race or country location, share stories about how doctors were not believing them about their COVID-19 symptoms,” she wrote. “Early in the pandemic, sharing your COVID-19 status publicly was taboo in the rural Southeast Texas town where I reside. But I decided that I would use the small platform that I had as an assistant professor to come forward about my health status and shed light on the fact that doctors were not believing women, and that women of color were having a particularly hard time being believed.”
But her saga with the healthcare system dragged on.
As part of having COVID, Gage Witvliet’s glucose levels rose, but it wasn’t taken seriously. Despite having been an athletic person before getting COVID, she says, her doctor told her she had a poor diet and lacked exercise.
“I knew that prior to my COVID-19 infection I was a healthy person, and that my elevated glucose levels were not because of poor diet or lack of exercise, but that this doctor was attempting to make me doubt my own experience, which is a common characteristic of gaslighting,” she says.
Bias in medical care is a long-reported issue and there is evidence that these biases regularly show up in doctor-patient interactions.
A 2022 data analysis conducted by a University of Oregon researcher found that bias in medical care could be tracked when reviewing the language doctors from one hospital used in written reports about their interactions with patients.
Assistant professor David Markowitz, a psychology of language researcher, analyzed 1.8 million medical records for the language doctors used when interacting with their patients and discovered distinct differences in how they communicated with them.
“What was most surprising is how clear the signals were in the data,” Markowitz says. “It really paints a picture that bias is not just a one-off phenomenon among certain physicians or individuals. Bias is systemic, subtle and consequential in medicine.”
The study found that doctors focused on symptoms and scientific diagnoses with male patients, but focused more on emotion when treating women. Doctors also focused less on the actual pain their Black or Asian patients were experiencing than they did for white patients, and used the least positive descriptions when dealing with Black women.
“When looking at gender and ethnicity, physicians demonstrated the greatest need to work through diagnoses for Black women, whereas patients of other genders and ethnicities received less questioning and required less cognitive effort from caregivers,” Markowitz’s study found.
Sexism and Racism in the Healthcare Setting
Experiencing that sort of bias from doctors treating her led Gage Witvliet to join an online support group in 2020, where she found dozens of women from all walks of life sharing how their doctors didn’t believe their reported COVID symptoms. In Spring of 2022, Gage surveyed members of the online group that was renamed the BIPOC Women Long COVID support group that was featured in the Washington Post.
Most of the women who completed the questionnaire were Black and college-educated. Almost two-thirds of the respondents reported their doctors didn’t believe their health complaints, and almost 20% of the women who went to the hospital said they were tested for narcotics.
Long COVID can include a range of ongoing health problems and create chronic conditions that require comprehensive care. These conditions can last weeks, months, or years and create disabilities that disrupt the patients’ lives and livelihoods. Women in the BIPOC long COVID group have helped highlight the mistreatment women with similar invisible diseases, such as chronic fatigue syndrome, are experiencing.
As of March 2024, 7% of all adults, or about 17 million people, reported that they suffer from long COVID, according to CDC data analyzed by the nonprofit health policy research organization KFF. Roughly 3 in 10 people who reported they had COVID-19 also reported having long COVID, and about 1 in 10 reported currently having it.
Although she’s still going through the ordeal, Gage Witvilet says her experience, and the experience of other women in the group, has brought an important but overlooked problem to the forefront.
“The COVID-19 pandemic shed a huge spotlight on the sexism and racism prevalent in healthcare settings,” Gage Witvilet says. “To this day, there are women in the group reporting that they are experiencing medical gaslighting” even though they’re still sick — and more is known about COVID-19.
Not being taken seriously by care providers “causes emotional distress, anxiety, and depression in the patient, and it ruins patient-doctor trust,” she says. “There are women in [the] group who feel isolated and alone because the world has moved forward, but they are a causality of the pandemic, and for long COVID survivors, COVID-19 is still a big deal.”
Ultimately, “Bias in healthcare is a real problem that is detrimental to public health,” Gage Witvilet says. “I believe that if we work to reduce bias in healthcare, we will see a direct positive impact on public health.”
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