In late April, Chimére Smith, a 39-year-old Baltimore woman, addressed members of Congress over a virtual hearing. Sitting at home, wearing strings of pearls and a blue top, Smith described the condition that had turned her life upside down, forced her to leave her job and pour her savings into finding health care. After becoming infected with COVID-19 in March 2020, Smith was still sick more than 400 days later.
“I am now a poor, Black disabled woman living with long COVID,” she said, going on to describe feeling ignored and disrespected by her doctors and driving hours to find another doctor who would accept her as a patient and listen to her concerns.
After hearing her testimony, California Democratic Rep. Anna Eshoo told Smith, “If there’s anything you’ve driven home to members of the committee it is, you have not been listened to.”
Photos: America’s Pandemic Toll
Long COVID is a condition that occurs when individuals sickened by COVID-19 don’t recover fully after a few weeks or manage to recover, only to have symptoms of illness appear weeks or months later. It can affect anyone who has had COVID, even if they had mild or no symptoms.
Experts can’t yet prove whether people of color have been disproportionately affected by long COVID, but researchers suspect that’s likely the case given they are among the groups hardest hit by the pandemic. Meanwhile, Black long-haulers like Smith say they have struggled to access care and have felt ignored by providers. Their stories draw attention to the country’s long history of medical racism as well as modern day disparities in health care quality.
Below are the stories of Smith and two other Black women fighting for recognition in the long COVID space and advocating for long COVID patients.
(Schaun Champion for USN&WR)
When Smith turned 38 in 2020, she was just months out from her initial COVID-19 infection. Deep in the throes of post-COVID symptoms, which, for her, included sensitivity to light and sound and a cataract in her left eye, she sat in her dark bedroom, holding a slice of cake. In the darkness of her bedroom, she ate it with just the light of her phone to guide her.
“It was an emotional memory because I couldn’t even see out of my left eye,” she says.
Smith is originally from Washington, D.C., but moved to Maryland’s Prince George’s County, right outside the district, when she was 10. She went on to move to Baltimore for college and never left, becoming a middle school teacher. It was a tough job, she says, but one she loved dearly.
But in March 2020, she began to feel what she describes as someone pouring hot water down her spine. Her vision began to blur. She was exhausted, had diarrhea, and a tickle in her throat grew into a full-blown sore throat. Then she began to get short of breath.
What followed, she says, was the first in a long chain of providers who refused to take her seriously despite her best efforts to advocate for herself. She called her doctor to ask for a COVID-19 test as lockdowns gripped the nation.
“He was like, ‘Well you know you have a history of sinus infections. This is a sinus infection,'” she says. Smith was baffled. She’d never had a sinus infection that felt like this. He prescribed her an antibiotic despite Smith’s doubts that it would work. That night she went to an urgent care center where doctors told her they wouldn’t give her a COVID-19 test because she wasn’t showing the symptoms they had been told to look for.
Between March and July, Smith visited the hospital for continuing symptoms, including gastrointestinal issues and a feeling of paralysis in her face. Her brain felt like it was on fire. By then, Smith had begun to read about long COVID and hear from other patients who suspected their initial COVID-19 infection had caused long-term symptoms.
“That’s the thing about long COVID patients … we’ve had to navigate this on our own,” she says. “We’ve had to become master scientists of our bodies.” She began to bring up long COVID to her doctors, including a male doctor in July 2020 who told her COVID-19 didn’t cause neurological problems, despite evidence suggesting otherwise. Doctors, she said, were treating her so poorly that she hasn’t returned to a hospital since last year. One doctor, she says, spoke to her like she was a 5-year-old.
“He was talking to me very slowly … with so much condescension,” she says. He told her she just had anxiety.
Because Smith had never been able to get a positive COVID-19 test, it took her more than a year to finally get diagnosed with post-COVID syndrome. This helped her submit a long-term disability claim which is currently pending.
Smith is now on a mission to see long COVID care be more inclusive and accessible to people from low-income backgrounds as well as people in communities where accessing COVID-19 testing was a challenge early in the pandemic.
She founded a long COVID support organization that will be housed in a church in western Baltimore. Her hope is to invite small groups every other Saturday to meet and connect with other Black long COVID patients, caregivers and their families. She also hopes to include providers, including mental health therapists and specialists, who can speak to treatment options. Recently, Smith added two Black physicians to her care team, who acknowledged her experiences.
“It is my hope to aid Black people in the western Baltimore community who need mental health resources, who need a community of people to be compassionate about their situations, who need medical resources counseling, food and health supply and information,” she says.
She sees the long COVID initiative at the National Institutes of Health as a great start, but hopes creating safe spaces like hers will allow researchers greater access to the Black community.
In May 2021, Smith celebrated her 39th birthday. This time, she was with a few friends in a COVID-safe environment. It was a far cry from her 38th birthday when she couldn’t even believe she was still alive. Instead, she was celebrating how far she’s come. “I don’t want to wait for 40,” she says. “I want to celebrate now.”
Beverly Hills, California
(Nolwen Cifuentes for USN&WR)
Ashanti Daniel never contracted long COVID, but her experience with another illness pulled her into long COVID advocacy. In 2016, the registered nurse was just months shy of her 36th birthday when she got an unrelated respiratory infection. She ended up hospitalized for a week as she recovered.
Except, she didn’t fully recover. The Beverly Hills, California, nurse was accustomed to feeling tired after working night shifts, but the fatigue she experienced in the weeks after her infection was far different. Being tired, she says, is a light summer breeze. Fatigue is a tornado.
Nine months later, she would be diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS, a condition that top infectious disease experts say can be similar to long COVID.
Those similarities are how Daniel, now 40, got involved in long COVID advocacy; she wants to make sure people with long COVID, especially other Black people, aren’t subject to the same medical experiences she had. She says ME/CFS, which primarily impacts women, has been seen as a white women’s disease, leading some Black patients to struggle to get diagnosed.
“Now we’re adding a significant number of Black COVID long-haulers to a health care system that is already inherently biased towards us,” Daniel said during a press briefing of long COVID and ME/CFS advocates in March. “The COVID-19 pandemic illustrates the intersection of structural racism and health and highlights why we need to address structural racism now.”
As a nurse herself, Daniel felt immune to medical racism. She thought she could advocate for herself, she says. But in the months after her initial illness, she describes doctors refusing to physically examine her and writing on her medical records that her symptoms were likely psychosomatic.
In one particularly distressing instance for Daniel, she was in the hospital for acute respiratory failure. After a traumatic two-week stay, Daniel was ready to be discharged. But a white nurse had asked to deaccess a port-a-cath, a device which had been implanted into her chest to allow for medications, blood draws, immune globulin infusions and IV fluids at home. As a nurse, Daniel had been able to manage the port on her own and knew she had a right to reject care. That nurse, she says, wouldn’t accept no for an answer. It became what Daniel calls a power struggle between her and the nurse.
“She even threatened me and told me that they were going to hold me down to deaccess my port,” she says. Her mom, who was with her, began to push Daniel in a wheelchair out of the hospital with her discharge papers. But the white nurse followed, using her body in an attempt to block Daniel and her mom from leaving.
In the midst of the incident, an administrator-on-duty for the hospital called and said Daniel could leave. Had she been white, Daniel says, that experience might never have happened.
“It’s a historical experience that white people tend to feel like they should have control over Black bodies,” Daniel says. “So this nurse did not view me as a fellow nurse. She did not view me as a human. She viewed me as property to be controlled. And that’s exactly how she behaved and it was completely, I mean, I’m traumatized from that experience, actually.”
Now, Daniel wants to make sure long COVID patients don’t experience this, too, particularly Black long-haulers. As a Black woman, and one with a medical background, she wants to be an advocate and speak to doctors about examining their implicit bias. That’s how she got involved in ME/CFS advocacy, which has aligned itself closely to long COVID advocacy in the past year.
Like Smith, she wants to see more research on Black people with long COVID as well as people without positive COVID-19 tests. Requiring positive tests for care or research, as some long COVID clinics have asked for, Daniel says, excludes people who lacked the privilege to find a test.
She wants policymakers and providers to know that medical racism is a public health crisis, one that endangers Black patients, even those like Daniel with a medical background. “Even as a health care professional, I’m still a Black woman before that,” she says.
Los Angeles, California
The nation was in the middle of its first coronavirus lockdown in April 2020 when Ashley Jackson, a 22-year-old actress in Los Angeles, California, felt a low-grade fever, headache, trouble breathing, chest pain and fatigue. She soon after tested positive for COVID-19 and continued to struggle with breathing problems.
In the few months following her diagnosis, she could hardly walk around a grocery store with her mask on without struggling to breathe. Her muscles would start tensing and vibrating randomly and she’d get shooting pains through her body, as well as fatigue. Her doctors told her they suspected fibromyalgia, a muscle pain condition.
Like Smith and Daniel, Jackson says being a Black woman added another painful layer to finding treatment: Not only did she have to seek out answers herself, but she also had to convince doctors to believe in her symptoms.
“I need support. I need help. And then the people that could even possibly be of service are just looking at you like you’re kind of crazy,” she says. Doctors would often tell her she was anxious and send her home, she says.
“So I recently had to become my own medical advocate. At 20, this is not something I could have ever imagined for myself.”
As Jackson battled for answers, her mom encouraged her to join a support group to meet other young people like herself with long COVID. That’s how she found Body Politic, a broad collective of long COVID advocates, which helped her meet others and hear from other Black women who had had similar experiences. The group also established a private group chat for Black women with long COVID.
“Having this section dedicated to Black voices and Black experience was absolutely wonderful,” Jackson says. She was able to connect with other young Black women with chronic illness, who she has leaned on for support and friendship. She’s since managed to connect with a post-COVID care team at the University of California-Los Angeles, which she says sees and understands what she’s going through.
“I can now see the difference,” she says. “So I know that what I was experiencing was real, because I now have something very different where I’m not having to explain what’s happening with my body.”
Jackson’s hope is to help other Black women demystify the medical system and find care teams that work for them. She says it’s particularly important for Black women that there be “an amplification of acknowledging the fact that young people can develop chronic illness.”
Jackson’s recovery isn’t over yet. She still uses an inhaler and often has flare-ups of pain. But she also recently celebrated two major milestones: She turned 22 and graduated from Spelman College. She worked closely with her care team and her therapist to manage her pain and reduce her anxiety around flying and being around people.
Her birthday celebration, “was kind of a way to really acknowledge the survival of the past year,” she says. “Hey, I still made it.”