Black Covid long-haulers felt invisible to the health care system, so they formed their own support groups

Chimére L. Smith, 40, thought her bout with Covid in March 2020 would pass within two weeks, as most mild cases do. But the Baltimore English middle school teacher found herself continuously experiencing extreme fatigue, diarrhea, dry mouth, brain fog and a sore throat, which she initially attributed to a possible sinus infection. By April, she couldn’t work or drive, had lost 30 pounds, had spinal pain and lost complete vision in her left eye. She even thought about taking her own life. Smith was experiencing long Covid. 

Smith said she visited hospitals a dozen times seeking help, but the physicians brushed her off, and one doctor labeled her “aggressive” when she insisted that severe headaches she experienced were due to Covid. She said she was repeatedly discharged with no resolution after each visit.

“I would come in with notes of my symptoms and share these symptoms with these doctors and they would not hear me. They wouldn’t listen to me. They would treat me as if I was a child and I didn’t know my body,” Smith said. “I wanted to die because I could not eat. I could hardly drink. I couldn’t think. Everything that I knew about my life within those first two or three months had been destroyed.”

That’s when Smith found the BIPOC Women Long Covid ‘Long Hauler’ Support Group, a Facebook group with hundreds of women of color with long Covid who meet virtually. Since joining the group in May 2021, Smith said she has been better equipped to advocate for her own care and that of  Black women living with prolonged symptoms of the virus. She’s one of many Black people across the country suffering from long Covid who have found solace in communities of people having the same experience. Similar support groups have popped up  in many states since the pandemic began, with Black people uniting to tackle everything from lingering symptoms to disparities in the nation’s health care system.

Long Covid — or post-Covid —  was first identified in the U.S. in the months after the pandemic began in March 2020. And now, two and a half years into the public health crisis, a lot remains unknown about the prolonged illness that affects up to 23 million Americans. Symptoms of long Covid vary from person to person, with people reporting experiencing everything from fatigue and cognitive impairment to tissue damage and organ injury, according to the U.S. Government Accountability Office. Like most of the pandemic’s fallout, Black people are bearing the brunt of long Covid, with the group making up a majority of long Covid hospitalizations and researchers even projecting that Black people’s life expectancy will drop significantly in the next five years as a result. As a way to counter the troubling data, Black people have formed these support groups in hopes of making sense of the illness and to find the help they need.  

“I am very proud to be a part of that group,” Smith said of the Facebook community. “As a matter of fact, that group is where I now spend a lot of my time because we become family, because we all share the same experiences.”

Dr. Margot Gage Witvliet, a social epidemiologist and assistant professor at Lamar University, created the support group Smith is a part of in July 2020 after struggling with her own prolonged Covid symptoms. Witvliet, 40, contracted Covid in March 2020 and spoke about her experience in a TED Talk. She told VFAB News that her husband and two children also contracted the virus, but her symptoms were the worst. She said in the TED Talk that she had trouble breathing and even suffered a seizure. Witvliet, who lost her grandmother to Covid, said she is just happy to be alive. Witvliet still endures chronic pain, fatigue and neurological issues, including short-term memory loss. Like Smith, Witvliet said doctors dismissed her symptoms and “infantilized” her. She said, on one occasion her glucose levels rose, which she believed to be a result of the virus, and a doctor told her to stop eating fried foods. In another incident, Witvliet was rushed to the hospital for a seizure, and was attended by a  physician who asked if she had used drugs, she said. “I was not treated with dignity,” she said, adding that on one occasion her husband, who is white, accompanied her to an appointment. And the doctor would only address him. “Yet, I am the one who is a health expert with a PhD and I am not a child.” 

After hearing multiple women of color share similar stories of seeking treatment for their long Covid symptoms, Witvliet decided to create a safe space where their voices could be heard.

“I wanted to be able to use the fact that I was a professor and a social epidemiologist to really help these women who were suffering,” Witvliet said. “So that’s what this group has done. And I’ve met some really phenomenal women, and we have lasting friendships in this group because we’re all unified by this trauma that’s happened to us.”   

The Facebook support group has nearly 400 members, all women of color, and they discuss ways to monitor and alleviate their symptoms, and speak with doctors about long Covid diagnoses. Witvliet also invites experts to discuss self-care and health challenges related to Covid. As for Smith, who is an active member of the group, she said she helps members file paperwork to claim disability benefits because many group members are rejected. (As of July 2021, long Covid is considered a disability under the Americans with Disabilities Act.)

Barriers to long Covid care 

Although there is no official test to diagnose long Covid, Dr. Sabrina Assoumou, an infectious diseases physician at Boston Medical Center, said that doctors  look for symptoms like prolonged fatigue, cognitive dysfunction, shortness of breath and “lingering pulmonary symptoms” to determine whether a person is experiencing long Covid. She added that the same structural racism that makes Black people more susceptible to Covid than other groups are the same inequities that create barriers to receiving long Covid treatment. These barriers include, inadequate health insurance coverage, lack of access to long Covid resources and lack of primary care doctors.

Assoumou praised these long Covid support groups and provided advice for the communities as they navigate the illness and medical racism. She recommends that the group learn about the symptoms and long Covid definitions provided by the Centers for Disease Control and Prevention and be sure to document their experiences. 

“Sometimes it can be overwhelming when you go see a doctor,” Assoumou said. “Take good notes and write down your symptoms over a certain period of time so when you’re in the office with the doctor you have your information ready and organized. Document your own history in your own words,” Assoumou said, adding that patients should prioritize long Covid clinics over general hospitals or urgent care centers. 

“Inquire about these multidisciplinary clinics that help streamline things because they’re like one-stop shops where you get to see multiple specialists. It’s helpful for these groups to know these clinics exist and are available.” 

Another leader helping the Black community navigate their long Covid symptoms is Yvonka Hall, executive director of the Northeast Ohio Black Health Coalition. Hall, 54, said some of her relatives contracted Covid and endured severe symptoms, like her uncle, who lost an arm as a result of blood clots, and her niece, who required emergency surgery due to a bowel obstruction. Hall contracted Covid in February 2020, before the vaccine was available in her predominately-Black Cleveland community, and said that she still struggles with brain fog, stomach issues and joint pain as a result of the virus. 

In March 2021, Hall started a support group of about 10 members who continue to meet virtually for one hour each month. Hall’s group exists under the Northeast Ohio Black Health Coalition, a social justice organization Hall founded in 2011. Similar to Witvliet’s group, members can hear from experts who help them learn how to manage their symptoms and answer questions.

“When we get finished at the end, you can see some of the looks on people’s faces,” Hall said, “where it looks like a heavy burden has been lifted.”

Hall documented the group’s experiences with Covid in a documentary called “Black COVID, ‘The RONA.’” One member, Joncquil Hope, 38, of Campbell, Ohio, said she joined Hall’s support group earlier this year after contracting Covid in December. She said she suffered headaches, fatigue and brain fog, and still struggles with her memory. In the group, she’s able to openly discuss her symptoms while learning about new ones that may occur.

“It’s nice, because not only can we hear from people who may have experienced things similar to what I have, but it’s also nice to hear about people that are experiencing things that are different,” Hope said.

The fight for care and resources continues

Throughout the pandemic, the Northeast Ohio Black Health Coalition has provided some 60,000 masks to residents and 200,000 meals to disabled families. “We had families that were sharing masks because they didn’t have the money to get masks,” Hall said. The coalition also set up vaccination clinics where locals could learn about the long Covid support group, misinformation, and receive Covid vaccinations with a free meal. More than 170 people have been vaccinated at these clinics since Hall launched the effort in November 2021, and they plan to set up another clinic in October. Despite all the organization’s success, Hall said the community is still in need of supplies to protect against Covid and, ultimately, long Covid. 

As for Witvliet, she said she’s focused on conducting research about long Covid in Black communities, and recently conducted a survey among more than 100 Black women with the prolonged illness. She asked the women about navigating the illness and their experiences with doctors. Witvliet said the research will help Black women deal with  the symptoms of long Covid and she hopes her efforts will prompt the medical community to reconsider how they interact with patients of color. 

Witvliet said Covid researchers may not understand the particular struggles of women of color. “We’re not honing in enough on how the social determinants of health are going to impact the recovery process — and that’s going to look different in different subgroups. And I think that that’s like an elephant in the room that’s not being discussed,” she said.

Meanwhile, advocates like Smith are calling on the government to address health care disparities. In April 2021, Smith testified about her illness at a congressional hearing, delivering a speech in front of Reps. Anna Eshoo, D-Calif., and Ayanna Pressley, D-Mass., both of whom said they had a lot of compassion for her, Smith recalled. Smith said she wants to help push the “TREAT Long Covid Act,” a bill that requires the Department of Health and Human Services to award grants to create and expand long Covid recovery facilities. 

“Many of us have lost our health care because of long Covid and because we don’t work anymore,” Smith said. “We need quicker turnaround times for social security decisions and actual acknowledgement from our federal government — that long Covid is a condition and it’s a medical diagnosis.”

While dealing with long Covid has been an ongoing challenge for Smith, she said there’s also been some bright spots. Smith said she has grown closer to her family and others dealing with long Covid through the support group. She also received a lot of financial support from people online through Facebook, CashApp and other digital payment apps after sharing a video asking for help when her bank account went down to $10 in 2020. Smith, who can no longer work and receives disability benefits, said former co-workers and students reach out to her to express how much they miss her.

Meanwhile, Witvliet said the steady improvement of her symptoms has helped give her hope. 

“I am not in the same situation that I was at six months, 10 months or 12 months or 18 months,” Witvliet said, “and that’s what people need to know. You will get better. You have to believe it.”

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