In mid-March, Chimére Smith, a 38-year-old middle-school teacher in Baltimore, was the sickest she had ever been. Her body was racked with fatigue, her throat so sore she felt as if she had swallowed a golf ball. Because Chimére didn’t have the “typical” acute COVID symptoms of cough and fever, she couldn’t get a test in the early days of her symptoms’ onset. On her doctor’s advice, she quarantined and waited for them to pass, thinking she would be back to teaching soon.
But over the next few weeks and months, Chimére didn’t get better. Her symptoms worsened and eventually included tremors and heart palpitations, muscle spasms, and loss of vision in her left eye. The neurological symptoms were especially debilitating: brain fog and migraines and trouble focusing. At times, she felt so sick she thought she was going to die. But when she was finally able to get PCR and antibody tests, her results came back negative, and doctors continued to dismiss her complaints as psychosomatic. Eight months later, she still hasn’t been able to go back to work.
Thanks to an emergent body of research, we now know that symptoms like Chimére’s be indicative of post-acute COVID-19 syndrome, which can leave patients suffering from a long list of full-body issues for months after an initial COVID infection. Many of these people, like Chimére, have never tested positive, though research shows that those with negative tests can suffer from the same list of symptoms as those who tested positive. According to Dr. David Putrino, a neuroscientist and physical therapist at Mount Sinai Health who has spent the past few months working with long-haul COVID patients, for those individuals who get tested more than 12 days after infection, the false-negative rate can increase to over 60 percent. “That’s the moment where a whole lot of gaslighting starts happening,” says Putrino, who advocates for making clinical diagnoses based on symptoms instead of relying on test results alone. “When you have such a high false-negative rate, the idea of hanging a diagnosis on such an unreliable test is poor medicine, it’s poor science, and we deserve a class of doctors that doesn’t do that.”
This is what happened to Chimére, who ended up in the hospital more than ten times trying to get doctors to take her complaints seriously. Although some of their skepticism may have been due to the lack of knowledge and resources amid an emerging pandemic, entrenched structural prejudices were likely also at work. As experts have pointed out, there is less research on how illnesses affect women’s bodies, and women’s subjective experiences of pain are less likely to be believed. Women of color are particularly likely to have their health suffer because of bias and disparities in medical care; to take just one example, Black women are over three times more likely to die from pregnancy-related causes than white women.
Below, read about Chimére’s experience of being undermined by the medical Establishment and then listen to this week’s episode of The Cut podcast, which tells the full story of her fight for recognition and the online community that gave her the strength to keep fighting.
Since I got sick, I have been told over and over again that I have nothing, that I don’t have COVID, that I have anxiety, I have depression, that I probably need to visit a mental-health facility. I remember after one visit, I left the ER, and I got in my car and cried. I was like, Maybe you are crazy. Maybe you should check yourself into some mental-health facility, because clearly you’ve taken every test; every test has come back negative. Clearly, you must be the problem. I just felt so discouraged.
I’m very thankful and blessed that I have good family and friends and a support system where people love me enough to say, No, hold on, don’t give up, keep fighting. However, I will say this: I was so ashamed of having this virus. As a Black woman, we are taught to be strong — whether you’re tired, whether you have to work five jobs. I’ve always been pretty strong and independent, and I was afraid to share with my friends and family about my symptoms and my condition. For the first three and a half months, I really wasn’t sharing anything with my friends or family. I had completely shut them out. I was afraid of what they would think about me being disabled and immobilized by this virus.
This virus is hitting people of color way more than it’s hitting other demographics. We are tired of being dismissed by people that don’t look like us. As a Black woman going to hospitals, even being as knowledgeable and articulate as I am, I was dismissed and humiliated in ways I can’t even explain to you. Prior to March, I never had any experience with not being believed about this body, and now I finally know what it feels like to not only be a Black woman but to be a woman experiencing this. And I am floored. I’m afraid for this country. I know it’s been going on for centuries, but I’m afraid of the COVID patients who will come after me who look like me, who don’t have insurance, who may have language barriers, who can’t tell you their symptoms, but they know that they’re sick and they will not be believed by doctors.
I landed in the hospital for I think the tenth time in July. I felt like somebody had taken a lighter and had started in the back of my neck and had circled it all around my head. I felt like my whole head was on fire. That landed me in the hospital for eight days. But they never gave me a diagnosis. The doctor told me I was aggressive because I was challenging his knowledge of research on COVID and how COVID affects people neurologically. I was like, “Did you know that COVID affects people in the brain?” And he was like, “Well, I’ve been treating people with COVID for the past couple of months, but I’ve never treated anybody that had neurological symptoms.” They offered me a stay in the mental-health facility and wanted to know if I had a therapist and all these different weird things that I’d never heard anybody experience at a hospital. He was like, “Well, you tested negative for the virus.”
This was a male doctor that would not listen to me while I was in the hospital. He had five days to talk to me, to have a really good conversation with me about what I had and to treat me, and he never came to tell me that he agreed with me.
When I left the hospital that time, it was a déjà-vu moment. Once again, I was leaving a medical facility with no answers, no explanation, no compassion. I was furious. I was tired. I had gotten so tired of feeling very gaslit and dismissed by doctors. I couldn’t take it anymore. Here’s another person who was talking around this thing? And when you’re on the brink of death, you cannot afford to talk around something. I was in hospitals writing wills. I was writing out, specifically, here’s what you do with my belongings and my money when I die. I don’t have time for people to talk around me having a virus that I know I have. When I got tired of that, a light bulb went off in my head. And even in my most crushing fatigue, I took all of that passion, I took all of that anger, I took all of that frustration and that confusion, and I used my fingers to write. I had to make something happen.
To hear what happened next, listen below, and subscribe for free on Apple Podcasts, or wherever you listen.