Chimére Smith started getting sick in March. Smith, an English and language arts teacher from Baltimore, Md., says she will never forget the moment she first started to feel it — a strong burning tickle in her throat. She is prone to sinus infections at that time of the year, so she tried to convince herself that it was simply another sinus infection. But at the back of her mind, she feared that it might be Covid.
The next day, a Monday, she began to feel incredibly fatigued. She put off a scheduled visit with her aunt, and spent much of the day lying down, on the couch, the bed, the floor. “It almost felt like I was possessed or something,” Smith said. “It was a tiredness I had never experienced before.”
She also began to feel severe back pain, a minor cough and a strong feeling of malaise. On Tuesday, she went to see her primary care provider, and was told that she had a sinus infection. “He’s been a very loyal and dedicated physician,” Smith said in a video interview. “I wanted so very desperately to believe him.”
She still felt seriously ill, however, and that night she went to Patient First urgent care to try to get a second opinion. She was told again that, because she was prone to sinus infections, it was probably another sinus infection, and that she could not get a Covid test because she did not have a fever.
On Wednesday, she felt so weak she was hardly able to lift her head. Still believing that there was a possibility she might have Covid, she decided to start quarantining herself away from her boyfriend. He told her she was overreacting, and probably just experiencing anxiety. Resolute in her decision, however, she went that night to go stay with her godmother. She says she has been extremely sick ever since.
That very night, Smith began to feel as though her lungs and throat were on fire. She went to St. Agnes Hospital in Baltimore. As she sat in triage, she overheard the doctors exclaiming at how high her white blood cell count was. When they came into her room, however, she said, they told her that her bloodwork looked good, and that they would not give her a Covid test. They told her to go home and quarantine for two weeks, and that she would feel better after that, she said.
Smith went back to the same hospital the next day when she began feeling as though there was a golf ball in her throat, and that she couldn’t swallow. She was told that she had acid reflux and was sent home. She went back several days later, struggling to breathe, feeling disoriented, and terrified that she was dying. She was given medication for constipation, which she was experiencing at the time, but was told that everything else looked fine, and was once again sent home.
She cried on the drive home. “Everything is not fine,” she said, “because I don’t feel like Chimére.” St. Agnes Hospital did not respond to multiple requests for comment.
Then she fainted
Two days later, she fainted while cleaning her bathroom. “I’m not a fainter,” Smith said. “That’s when I really knew how sick I was.” On April 3, she called the Maryland Health Department and lied, telling them she had a fever of 100.3 – the only way they would allow her a Covid test. She received her results two days later, and they were negative. At first she was relieved. But then symptoms lingered and lingered.
Smith finally decided to go to Johns Hopkins University Hospital, hoping that she might receive better care, given the hospital’s reputation. While there, a white male doctor sat her down and spoke slowly to her, “as if I had a comprehension problem,” Smith said. “What is going on with you?” the doctor said. “We’ve tested you for Corona, you don’t have it. You need to go home and you need to rest.”
“Since about April,” Smith said, “I’ve been in a battle with Johns Hopkins to get the care that I feel like I deserve. And it has been a difficult, humiliating battle for me. I have been dismissed on every single level by these hospitals. I thought that Johns Hopkins was one of the best hospitals in the country, if not the world, and I have been treated like scum on the street. All because I want so desperately to heal myself.”
On April 21, Smith said, she woke up blind in her left eye. She went to the Johns Hopkins Eye Clinic, and was told that she had dry eye and sent away. She had to return and insist on an eye exam before they actually examined her and diagnosed her with an advanced cataract that would require surgery to remove. (In February, Smith, 38, had a small cataract an eye doctor said would not need surgery for at least a decade.)
Smith has since tested negative for Covid multiple times, but what bothers her is that she was never presumed positive. At Johns Hopkins, she said, she saw white and Asian people who came in experiencing symptoms being told that they would be presumed positive for Covid, and treated as if they had it, while she, who was also experiencing multiple symptoms, was told that she was fine and sent home.
‘As a Black woman, that’s humiliating’
“As a Black woman,” Smith said, “that’s humiliating. I can clearly see the races of the people across from me. I’m not blind. I can see what’s happening.”
On one early visit to Johns Hopkins — she has vowed not to return there unless it is to see a specialist or someone who will take her seriously — she was told that her Covid test was negative, but that they could refer her to a mental health professional.
She was also turned away by neurologists, one of whom told her that her cognitive functions were fine, despite Smith telling her that she was experiencing memory loss, confusion and difficulty grasping words.
Another neurologist was simply dismissive. “One of the leading neurologists at this hospital refused to believe I ever had Covid because he couldn’t verify it through tests,” Smith said, “although I informed him that many long-haulers were receiving false negative Covid test results. He was extremely curt and uncaring.
“As I drove home, I cried in my car,” said Smith, “Because, once again, my hopes were dashed. Every time I go [to the hospital], I would always hope in my heart and my soul that somebody would help me.” After that visit, however, something changed.
A change in perspective
“I woke up that night in early June and I said to myself, I have got to do something to save my life,” Smith said. “For months, I thought I was going to die. And I said to myself for some reason, I’m not going to die from this. I don’t know, I’m a believer in God and the universe, but it was something that happened inside of me and I said, I am not going to die from this damn virus. Somebody is going to help me.”
From her bed, for the next two days, Smith wrote to anyone who would listen.
“I wrote to the patient relations person at Johns Hopkins, the guest representatives at St. Agnes, Baltimore City Council members, Maryland State delegates, newspapers, television stations. I wrote to anybody I felt who would listen to me, because I was determined to get this story out about all of the things that were happening to me and all of the symptoms that I had experienced.”
Four local politicians responded to her and put in a case for her at Johns Hopkins. Smith said that Baltimore City Councilman Kristerfer Burnett and Councilwoman Mary Pat Clarke, as well as Maryland State Delegates Nick Mosby and Stephanie Smith, helped bring Smith’s concerns to the attention of health authorities at Johns Hopkins. With the additional help of a patient advocate, Smith has been able to make appointments with specialists and doctors at Johns Hopkins who are willing to see her.
‘Stop sending away people who are sick’
“I hope that you know,” Smith wrote to Hopkins, “that as a person who knows I have COVID I was treated horribly. And I hope you also know that I am concerned that people who look like me are going to come after me to this hospital, and they are going to be mistreated. And they may not even understand that they’re being mistreated, because these are people who have already in this city been disenfranchised, because they are poor, because they are Black or Latino, because they have language barriers, because they can’t speak as articulately as maybe even somebody like me. First of all, please do not assume that just because you test negative, that the tests are accurate. Second of all, stop sending people away who are sick.”
That is the message she has since been spreading where she can on social media. “I am not ashamed anymore,” Smith said. “I am a smart, working, loving, compassionate Black woman who pays into her union, and I pay for my insurance, and I have been treated horribly.”
In response to a request for comment from Johns Hopkins in September for this article, Kim Hoppe, vice president of communications at Johns Hopkins Medicine, wrote in an email: “Our Patient Relations team has been working with Ms. Smith with the goal of getting her the best possible care as quickly as possible. We would encourage Ms. Smith to continue with that process, as it would not be appropriate to debate details of a patient’s treatment in the media.”
Smith did ultimately have cataract surgery at Johns Hopkins on Sept.. 3, and says she is doing fine. She has also continued other treatment there with specialists, she said.
Online groups
Through online outreach, Smith has joined Covid long-hauler groups and come into contact with people all over the world who are experiencing similar symptoms and similar disparaging stories of being dismissed by doctors. She has noticed a trend, however — most of the groups are run by white women.
“Thank God for them,” said Smith. “I’m glad that they have taken the reins on such an important issue. We need it. But I don’t see my homegirls, my sisters…I don’t see people like me. I joined three groups, and the first thing I remember thinking when I joined, damn! I think I’m the only Black person here! And for a second, I was going to let that sway me from interacting. And then I thought to myself, why? Talk, share your story. Somebody else in here has experienced the same things that you have, even if you don’t look like them. And what I found was yeah, we share the same symptoms.”
There are people in these groups, Smith said, who want to die because they feel there is no hope. That’s why she believes it is more important than ever to share her story and help people like her know that they are not alone.
The Missing Long-Haulers
There are reasons, Smith said, why you don’t hear as many people of color speaking out about their experiences with Covid. The first reason, she says, is shame.
“People of color, Black and Latino people, I know for sure, we have been taught for years and generations, that when you get sick, you do what we call, push through,” Smith said. “When you’re sick, you go to work. When you’re sick, you still take care of your family, you take care of your friends and your community. When you’re sick, you still live your life as if you’re not, because being sick is a sign of weakness. It’s a sign of vulnerability. It’s a sign of ‘we can’t do it on our own.’ We’re very independent people, so there’s a shame wrapped around being sick like this, especially having a virus that we don’t know anything about.”
The other reason, Smith said, is that they’ve been taught that doctors can’t help them. “When we go to the doctor,” she said, “we are told that we’re just fine or just passed off. It’s like a two- fold thing. We deal with the stigma from our community, and then we deal with the stigma from the medical community, the dismissal.”
Doctors, Smith said, often don’t take people of color, particularly Black women, seriously. “If I speak passionately like this,” she said in the interview, “I’m seen as aggressive and someone that needs to calm down.” She at one point arranged a telehealth visit with a renowned neurologist from Chicago. He stayed on the call for about three minutes, she said — enough time to tell her that she might have coronavirus, but that he could not help her and could not write her prescriptions because she did not live in Chicago. Smith, however, knows two white men who have seen this same doctor. Neither of the men live in Chicago, and the doctor has filled prescriptions for both of them.
“I’m afraid for my students,” said Smith, who, when healthy, teaches in a middle school. “These are kids who are fighters. They’re strong. They’re smart, street-smart kids. They don’t know every medical term. They don’t know how to tell you, I’m having abdominal pressure or brainstem pressure. They just know, look, my stomach hurts and my head hurts. But they’ll go to these hospitals and they’ll be turned away because they don’t have insurance, because they can’t properly express their symptoms to a doctor.”
What Doctors Can do Better
Smith believes people like her, who are extremely sick with multiple symptoms, should be presumed positive, as happened with white and Asian patients she saw at Johns Hopkins. Tests are important, she said, but not necessarily a definitive indicator of sickness.
“There’s still not a lot of doctors that are willing to stick their necks out to say, hey, you’re presumed positive,” said Smith. “A presumed positive could be the difference between me getting taken seriously at the hospital, or by my primary care physician, or when I fill out paperwork for disability at my job.
“It would make a huge difference in the way that we are perceived, and the way that we are treated by medical professionals and even our employers. It will make a difference in how we are treated by our families, because there are some of us, thankfully not me, who are not believed by our families that we have this virus, because it takes on so many different forms.”
Next, she said, long-haulers need doctors to code COVID in their medical records, to prevent astronomical bills.
“I’m paying five separate bills, because none of those doctors who saw how sick I was, who knew what my symptoms were, coded me as having Covid. They coded me as having a persistent cough, acid reflux, anxiety, a headache. Say I have Covid, because you know I have it! That’s what they can do. They can code it as Covid because it would maybe dial down some of the cost, and it would help me if I’m trying to get long-term disability. I need that. It may help as far as our resources are concerned, what we are able to get, and maybe some of these insurance companies might be a little bit more sympathetic.”
Third, Smith said doctors need to provide better explanations for test results and blood work. Countless times, Smith said she would be told by doctors that her bloodwork was fine, but upon examining the papers herself, she would notice potential issues, such as elevated glucose levels.
‘Don’t send me home with a lollipop’
To doctors, Smith said “keep it real with me when you come in. Now I’m an expert on my own body. I understand some of this terminology.” She thinks doctors presume Black and Latino people are not as well-versed as white people in health issues.
“So when you come into my room, you think that you are pacifying me by telling me ‘your blood work looks fine.’ We need better explanations. Take the time, take an extra five minutes to say, ‘Hey, this is what’s going on with your cholesterol or whatever. Here’s how your echocardiogram looked.’ Don’t just send me home with a lollipop and think I’m O.K.”
Finally, Smith hopes that doctors can learn to be better partners with, and more open to learn from, their patients. Because Covid is so new and unknown, there are many things that patients can teach their doctors about the virus.
Smith told her primary care doctor she wanted to partner with him to find treatments for her lingering symptoms. “There are times with this virus that I will have to be the teacher,” she said, “because he may not be well-versed on new research or articles like I am, because I read them every day. I’m the Black female nerd of Covid.”
She and her doctors have to be partners, she said. “And if we can’t partner with each other, I don’t need them.”
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More in our series on Black long-haulers:
Coronavirus (Covid-19) and race: A Black long-hauler hears ‘There are no next steps’
Coronavirus (Covid-19) and the activist: A Black patient’s journey through the system
