For her 30th birthday, Netia McCray asked her partner to help her put her affairs in order and make a will.
McCray had been suffering from Covid symptoms for weeks. Unable to get meaningful treatment, she felt close to death.
McCray, a Black Boston resident, and other people of color who have had long-lasting symptoms they ascribe to coronavirus, are struggling to find doctors who will believe them and treat them. They not only face the challenges of “long-haulers,” as long-term patients are called, but they are experiencing the toxic effects of racism in healthcare.
The medical profession has frequently been accused of disregarding patients’ complaints about Covid, perhaps because the disease is fairly new and not a lot of medical research has been done. But long-haulers, and especially long-haulers who are Black and brown, are different. They report that healthcare professionals continuously ignore their complaints, diminish their concerns and send them home. Many say doctors told them their problems were all in their heads, or prescribed anti-anxiety or anti-depression medications as a solution to their physiological health problems.
McCray was even sent home from an emergency room without significant treatment, after a referring doctor determined she had either just had a heart attack or was at imminent risk of one.
First of a series
Disparities in treatment and outcomes
The differences in treatment and outcomes in healthcare between white patients and patients who are BIPOC (Black, indigenous, and people of color) continue to be huge. The race and sex of a patient can have a significant effect on whether that patient gets advanced care, studies have found. Other research has shown that Black patients and Hispanic patients are often prescribed less pain medication in comparison with white patients with similar complaints. Black women die in childbirth in the United States at three to four times the rate of white women.
It is also clear that Black and brown people have suffered worse consequences from the coronavirus, becoming ill at a higher rate than white people, and dying at a higher rate than white people.
McCray’s nightmare started in the middle of March, as she described it in this Twitter thread over at @netiamccray.
McCray, who runs Mbadika, an education nonprofit in STEM (science, technology, engineering and math) she founded as an undergraduate at MIT, went on lockdown with her partner. She began experiencing fatigue, then gradually shortness of breath and chest pain. Her partner then started coughing. They decided they would hold off seeking treatment until symptoms worsened.
A week and a half after the first symptoms, she woke up at night and couldn’t catch her breath. Neither could her partner. “So we’re both just staring at each other like, time out. No, this is not anxiety. This is not a cold. This is something completely different.”
They ventured out of their home to get a test, and after several hours of traveling through Boston and finding multiple closed clinics, they went to Massachusetts General Hospital, at the Chelsea branch, with an appointment to get tested. It was a Thursday. The test, they told her, would take 24 to 48 hours to return.
No News
She waited and waited for results. The following Wednesday, she said, her primary care provider called to say that her Covid test was negative. Furthermore, her doctor had received the results on Thursday night, but because it was negative “she didn’t feel it was urgent” to report back to McCray. The doctor said all she needed was fluids and bedrest.
“I said, ‘I can’t breathe, and the E.R. won’t admit me until I have a positive Covid test. I don’t think we’re at the fluids and bedrest stage of treatment.’” But the doctor said there was nothing more she could do, and felt the symptoms stemmed from anxiety. She also said the Covid tests need to be reserved for people who are showing actual Covid symptoms or have a point of exposure.
That night, McCray said, she went to the bathroom and passed out. “And that was the moment I said, ‘O.K., we’ve gone from a healthy 29-year-old woman — I ran a mile every morning, so it wasn’t like I had any health or breathing issues — no asthma, no underlying conditions.’”
Passing out
For the next three weeks McCray passed out in front of the bathroom, struggled to catch her breath, and stopped breathing on occasion during the night. Whenever she had the strength, she would call her doctor to describe her worsening condition, and to ask for a virtual appointment, but got only busy signals or messages that the phone was disconnected. But she learned through her insurer that the office was still open.
McCray said she decided just to let her doctor’s behavior go for the time being, and to focus on what she could do to guard her health. She had also decided that she needed to put her business on hiatus after six weeks of illness.
As her 30th birthday on May 17 approached, her partner wanted to make it special for her. “I said, ‘Could you help me write my will and designate what stuff I want my family to have, and what I want to happen to my current company when I’m no longer here?’”
Around that time, she said, she saw a New York Times article by Mara Gay, a member of The Times’ editorial board, titled “The hidden face of COVID-19.” Black and 33 years old, Gay wrote about how she had been very ill and unable to write for weeks while recovering from Covid, despite not having a positive test.
Gay wrote that she was athletic and healthy, and that her symptoms did not include coughing. McCray said, “It seemed to be that a lot of the news cycles were ignoring millennial women — in particular millennial Black women – and the particular symptoms they were going through.”
She recalled her mother, a nurse, telling her about the American Heart Association’s delayed realization that when Black women have heart attacks, they feel pain in their back, not in their chest, and are often not properly diagnosed.
McCray realized Covid-19 victims have been whitewashed, in the sense that the only victims recruited for studies are primarily wealthy and white. “They were not the health profile of me and other women like Mara Gay.”
She realized that the CDC was describing Covid symptoms that did not reflect hers, and that her doctor was not up to date on current research. “The more I read the article, the more I was like ‘I am not crazy. This actually exists.’”
No response from doctor
She sent the article to her doctor but got no response. A week or two later, on June 4, the Atlantic published one of the first widely read articles about long-haulers, by Ed Yong. She sent that over to her doctor also, again receiving no response.
From interacting with people tweeting about Gay’s article, McCray said, “I realized not only was I not alone and crazy, there were thousands of women of color, in particular Black women, who were like me” — unable to work since March, with a doctor who did not believe her and would not refer her to an expert, and an insurance company effectively forbidding her to change doctors. Through social media, McCray said, she found support groups, and saw research that people were creating for themselves about their symptoms.
McCray moved to Florida July 8 to be with her family. Three or four days later, she felt the worst she had felt since her battle with Covid-19 began. Worried that she’d been reinfected, she got a Covid test, which was negative. When she got a chest X-ray and EKG, her urgent care doctor told her she had severe heart inflammation and sent her to the emergency room, as her aorta was enlarged — a sign, the doctor said, that either she had had a heart attack or was about to have one.
She spent four or five hours in the hospital waiting room. Another Black woman came in, gasping for breath, and McCray said as the woman begged for help, it sounded like a death rattle in her lungs. “They told her, ‘Oh, just sit here in the waiting room and we’ll have someone come to see you.’ I stood up to give her my space. That woman sat there with me for at least an hour and a half. I was just hearing her dying in that waiting room.”
Finally, after a wait of six or seven hours, McCray received chest X-rays and blood work and so on.
Chest wall pain
“The ER doctor comes in and he goes, ‘All you have is chest wall pain. So you need to stop lifting heavy objects.’ I said I was sent over here because I have an enlarged aorta, which is the sign of an upcoming heart attack. He said, ‘An enlarged aorta can be a sign of chest wall pain. So you need to just ice your chest for 2 hours a day and it should disappear within a week or two.’ I was sent home.”
She received a bill for $2,000 and called her insurance company, Blue Cross Blue Shield, to make sure that it was correct, and that she indeed had to pay. They said that they had already paid $20,000.
“I was like wait, I’m sorry, what? So I just paid for a 2018 Toyota Camry to be told I had chest wall pain and to be sent home without even an ice pack? And I’m still unable to breathe?’ And now I have a new symptom, which is poor blood circulation. I could see the tips of my hands and my feet turn blue. And I wasn’t able to walk at some points.”
She tried to get the Florida emergency room records sent to her primary care provider but encountered a string of roadblocks. The hospital told her the doctor’s office had refused to receive the records. Eventually, after four weeks, she did manage to get the records transferred, and she requested and received a virtual appointment with her doctor.
‘I’ll put that in your chart’
“I’m thinking, yes, now she’s got to pay attention, I have all these medical records,” McCray said. During the visit, she said, her doctor said, “Oh, yes, your symptoms do align with post-Covid, and I’ll put that in your chart.”
“So then I asked what are our next steps? She said, ‘Oh, there are no next steps — there’s nothing more that I can do for you.’ She told me she didn’t feel comfortable ordering labs because I was in the state of Florida. Before we ended, I asked her, ‘Could you at least tell me, now that I know you have other long-term Covid patients, what has been working for them?’ She said, ‘Well, exercise seems to be doing well for them.’”
McCray said from April to June that she felt she had been sent home to die, that her primary care provider may have felt she wasn’t worth treating.
“I’ve heard from women in Baltimore, in New York, the same story,” she said. While the initial coverage of the pandemic was of white people getting sick, Black and brown people started filling up the hospitals in New York, in Atlanta, and in Texas. After that, she heard white colleagues complain about the economy shutting down. She saw doctors and researchers failing to study Covid’s effects on Black and brown women, who were suffering acutely from the virus and its short- and long-term effects. “It was almost like, ‘Well, we are doing all this, denying ourselves everyday pleasures and interactions, because Black and brown people are sick? Screw that. We will treat them like we did the AIDS epidemic or Ebola and everything else. Their death does not impact our lives.’”
The situation mirrors what Lyme disease sufferers encounter, she said, “especially for women — our pain isn’t believed, our symptoms aren’t believed. It’s always, ‘Oh, you’re just stressed. Oh my God, you just need your fainting couch to get through.’”
‘I don’t see you because I don’t interact with you’
McCray is now seeing many of her peers almost being threatened if they don’t go back to work, yet they are most at risk of getting sick, having their symptoms ignored, losing their jobs and insurance, and needing elderly at-risk relatives to take care of their children. Many white people don’t realize how their everyday lives revolve around Black women — from going to Starbucks and getting your cup of coffee to making sure your office is clean or teaching your children, McCray said. “There’s the ‘I don’t see you because I don’t interact with you and have you in my circles, so I don’t understand your contributions to my life,’” she said.
“I am now seeing a lot of my peers who would have normally hidden their illness — I’ve now seen them go ‘I have been sent home to die.’ They are quitting jobs, trying to file disability, or coming back to family homes and living with partners and going ‘You know what? I can’t do this anymore. I can’t carry this. I have to recover.’”
The pandemic is decimating Black and brown communities, people who are struggling to find medical treatment in the face of medical racism, she said. “And it’s starting to decimate other communities that depend on Black and brown labor. Because the most important people in Black and brown communities are Black and brown women. We are the caregivers. We are the breadwinners. We are the ones who support the household. If we can’t work because we’ve been hit with long-term Covid, everything falls down.
“When the pandemic focused on white individuals impacted in New York City, it was more ‘Grandma didn’t deserve to die. Grandma still had two to three years of life left.’ Those are the stories I keep hearing, as opposed to the stories of Black women suffering from long-term Covid, being evicted, despite there being an eviction moratorium, or Black women not being believed and losing a job, and their credit score is going down so they can’t get another apartment, so now their family is homeless living in a car. That’s the reality I see every day.
“I am blessed because I work for myself — I’m the executive director of my own organization. When it comes to Black women, I’m in the top 1% of wage earners. I am not pressed to go back and work in a classroom again. My team is not pressed to go back. But I have peers who have cancer, who have lupus, who have autoimmune diseases, who battle long-term Covid-19 — going, ‘Here’s a selfie of me in the classroom with my 12 students with this little piece of plexiglass.’ And setting up Go Fund Mes because they know their funeral’s on the way.”
‘All my black peers know a friend who has died’
White people have a very different experience of the pandemic from Black and indigenous people and people of color, she said. “I can tell you in my white professional groups they don’t know a single person besides myself who’s been sick, let alone died. I know five at this point, and all of them are Black women, all of them under the age of 45. All of my Black peers know someone, a friend who has died. Not gotten sick, but died. And dozens at least who are long-term Covid patients.”
We told McCray that we’ve been looking for people of color to tell us their stories. She said many are afraid they’d lose their jobs if their employers found out they had long-term, expensive health issues.
Beyond that, she said, the long-term implications of Covid infection are unknown. If people need organ transplants, and they are considered as having pre-existing conditions, they may not be able to switch jobs or insurers. “So there’s a lot of risks with people talking to you,” she said.
McCray hopes that telling her story will allow others to tell their stories. “If I can have someone realize she’s not alone, and the typical medical racism we already deal with is being compounded, and she’s not imagining the new monsters, then at least I am being useful, versus contemplating my future, and how to continue to leave my mark with what time I have here,” she said. “It is my privilege to be able to talk for those who can’t. So that is what I’m doing.”
Some possible solutions
We asked her if she had any solutions to suggest. First, she said, the people who do not have a positive Covid test are denied entry to clinical trials or denied a post Covid-19 diagnosis. That makes it impossible for them to explain to employers why they can’t do their work. They’re also often shut out of disability or unemployment if they can’t work. Of course, the testing for Covid has been documented to be unreliable in many cases, meaning that people could actually have the disease, yet receive a negative test.
The second thing, she said, is allowing people to file for disability or unemployment if they have underlying health conditions and are at high risk for Covid-19. “Given the anecdotal evidence we now have, there has to be evidence to show proof” of what ages, races, and genders are at particular high risk.
Her third suggestion is for Covid-positive patients to access anecdotal research on what’s working well and what isn’t, in real time. It’s a shame, she said, that she learned only from a New York Times article, not from her doctor, that sleeping on her stomach could help her breathe. ”My PCP didn’t even know it. It’s August. She still doesn’t know that. I’ve had to DM people on Twitter saying they can’t breathe at night and tell them, ‘try sleeping on your stomach.’”
McCray said her faith in the medical establishment has been shaken to the core. “In my family we now have a rule,” she said. “If I go downhill, you’re not to send me to the emergency room, but just call the funeral home.
She would rather her family have money to pay off the car or the house. “Use my savings account for my casket, rather than give money to a medical establishment that does not care for me and my family,” McCray said. “And I am not the only one having these conversations.”
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More in our series on Black long-haulers:
Coronavirus (Covid-19) and the activist: A Black patient’s journey through the system
Coronavirus (Covid-19) and race: Determination defeats despair for the ‘Black female nerd of Covid’
