Back in March 2020, Chimére L. Sweeney was a middle school public teacher in Baltimore. After students and teachers were sent home, she dropped off supplies, food, and homework to her public school students, expecting them all to return in two weeks’ time. That’s when she believes she got COVID-19. When her symptoms — including migraines, diarrhea, and constipation — developed into more serious issues affecting her sight, cognitive ability, and memory, she sought out medical advice.

“I stopped being able to speak and to think as sharply as I once did,” Sweeney says. “I wasn’t able to get out of bed. I could only take a shower, and the shower was the only way that I knew that I was still alive, because otherwise I would sleep 15 to 18 hours a day.” Over several months, her symptoms grew severe, and yet, no doctor believed her — she says she went to three hospitals and saw more than 10 doctors with over 12 ER visits. Most of them were white men, she remembers: “They would assure me that I was fine and pretended my symptoms weren’t abnormal during a time when many people were reporting prolonged COVID symptoms.”

It wasn’t until 2022 that Sweeney was officially diagnosed with long COVID, thanks to a Black woman doctor who Sweeney says “believed me.” “After emailing [the doctor’s] bosses, I was able to receive a formal clinical diagnosis,” she says.

Sweeney’s experience with long COVID is just one of the many stories from women who’ve continued to be impacted by the virus, even five years after the start of the pandemic. Since then, research has found that women are more likely to develop long COVID as well as develop infections during COVID peaks. There are some established reasons why: Women predominantly occupy the jobs with the most COVID exposure, including teaching, retail, and childcare, and women’s immune systems may make us more susceptible to developing long COVID.

Experts Featured in This Article:

Monica Verduzco-Gutierrez, MD, is a physiatrist and rehabilitative medicine physician who runs a COVID recovery clinic.

“COVID is a feminist issue,” says Dr. Monica Verduzco-Gutierrez, who had long COVID herself. She says her research has shown that “a great proportion of our patients are women who are impacted by long COVID.” Moreover, people with intersectional identities are disproportionately impacted by COVID. “We already know these are communities that may not have the same access to care and may have jobs that may put them more at risk for these types of infections in the first place,” Dr. Verduzco-Gutierrez says.

Five years after the pandemic, COVID continues to disproportionately impact women, and that’s likely to worsen under the Trump administration. According to The Sick Times, Trump has commanded the Department of Health and Human Services to terminate the advisory committee on long COVID. The publication reports there’s a lack of provider literacy happening, too, when training programs are much needed. Historically, medical research has left out women, and long COVID patients as well as medical experts are worried about what this means down the line.

As a Black woman, Sweeney says she was racially profiled when trying to explain her symptoms to doctors. “I had to force my way into a realm where doctors were listening to me and I had to bring paperwork with me everywhere,” she says. “I had to make them write in my chart if they denied me testing or service.”

At the same time, Sweeney became involved in an online community where people shared their long COVID symptoms and struggles. This helped her feel less alone, but most of the folks she was hearing from were white, she says: “I had to let people know about the Black long COVID experience because nobody was talking about that. And I did not want history to tell a story that wasn’t true about who was suffering.” From there, she launched a COVID advocacy career that’s still going strong today.

Dr. Verduzco-Gutierrez acknowledges that there’s “a lot of medical gaslighting and stigmatization and dismissal of patients, especially of women.” Like Sweeney, some are told their symptoms are psychological. “There’s been studies that show that there’s a high prevalence of patients who feel that they’re stigmatized when they present with long COVID,” Dr. Verduzco-Gutierrez says.

Fi Lowenstein, a 31-year-old living in New York City, was infected with COVID by a close friend on March 13, 2020. Most people weren’t yet wearing masks at that time.

When Lowenstein started experiencing shortness of breath, they were hospitalized. “I’m white and I’m young and there were various things about me that I think made medical professionals kind of prioritize me in a situation where a lot of people were not getting prioritized,” they reflect. Now, five years later, they live with a very mild case of long COVID.

Lowenstein, who identifies as nonbinary, acknowledges that dealing with long COVID disproportionately impacts folks who are marginalized: working-class people, people of color, and queer and trans folks. On top of this, Lowenstein says there’s the added issue of trying to access care for a chronic illness that’s not super well researched. While they say people claim this is because it’s still “new,” in reality, this has happened because chronic illnesses disproportionately impact women and people assigned female at birth.

“Experiencing long COVID definitely made me understand another level of marginalization in this society that I had not previously experienced — and how disabled and chronically ill people are so often forgotten, both in terms of governmental policies, but also in terms of societal and cultural norms and trends,” Lowenstein says. “Accessing healthcare, in particular, is obviously more complex if you’re not just nonbinary, but also living with a complex, often misunderstood complex chronic illness. But, again, I want to stress that I still experience a lot of privilege within healthcare systems as a white, thin, often cis-passing person with private health insurance.”

Many people also aren’t aware that they have long COVID, because of a lack of public education and media information on what it looks like and how to treat it.

“Long COVID is so heterogeneous and can present so differently and there is limited information out there,” Dr. Verduzco-Gutierrez says. “It is not time to downplay long COVID. We need to continue to educate our communities.” With a lack of education and resources, discussion of the illness has mostly faded into the background and now, five years later, sufferers are practically invisible. So where do we go from here? “We go from acknowledgement to action,” Dr. Verduzco-Gutierrez says. “The first step is to believe women with long COVID and advocate for research and policy change.”

Sweeney still has an aversion to seeing doctors regularly — especially after moving to NY. “I’ve been here for two years and am still establishing care with doctors I believe I can trust. More than half of the new doctors I meet are still not as knowledgeable about long COVID — even after five years.” Though she can manage many of her symptoms at home, she still must regularly see a cardiologist, neurologist, podiatrist, gastroenterologist, and psychiatrist to assure that these areas of her health are managed. “Most people don’t understand how tiresome and worrisome these doctors’ visits are.” Now, she’s afraid of what Trump’s budget cuts will mean for disabled people who have long COVID and depend on Medicaid, Medicare, and Social Security Disability Insurance benefits. “I can’t afford to have my SSDI check cut in any way,” she says.

Moving forward, her plan is to continue to aid Black people who need support in health advocacy. “I will always be a teacher at heart, so I intend to continue educating Black communities on how to advocate for equitable healthcare: we have the right to make sure doctors respect our needs and partner with us to establish long COVID symptom management and treatment.”

Sweeney sees addressing long COVID as an issue for women’s rights in general. “I think the beauty about feminism — in its truest form — is that it doesn’t idealize exclusion as much as we were all taught to believe,” she says. “It includes, fills, and examines the equality of everyone, while focusing on women being equal with men or any other gender.”

Sara Radin is a writer and publicist based in Philadelphia. Her writing on internet trends, style, youth culture, mental health, wellness culture, and identity has been published by The New York Times, Glamour, Self, Teen Vogue, Refinery29, Allure, PS, and many others.