For Marjorie Roberts, it started on March 26.
The healthy, 59-year-old life coach in Atlanta says it started as a normal day. She went out to get the mail. As she walked back to her apartment, she lost her balance. Odd for her, but she didn't think much of it.
By evening, "everything came down on me like a ton of bricks," she says. Extreme fatigue was the first symptom among several. Her long ordeal was just beginning. "I had no idea what I was in for."
On April 23, Natalie Nowell, 34, had a similar experience. A mom of three in Memphis, Tenn., she spent most of her time running around after her children. Her family had been quarantined for over a month.
Then, seemingly out of nowhere came a heaviness in her chest — and a feeling of deep unease. She told her husband she needed to rest. It was worse when she woke up. Awful chest pains "like there was a ton of bricks sitting on my chest," she says.
That hasn't been the case for Roberts or Nowell. Months later, both women are still experiencing symptoms of COVID-19: shortness of breath, chest pains, vomiting, and neurological symptoms that range from headaches and fatigue to hallucinations and jumbled words.
Support groups on Facebook include thousands of people who say they have been wrestling with serious COVID-19 symptoms for at least a month, if not two or three. The groups have coined a name for themselves: "long-haulers."
While both Nowell and Roberts visited the emergency room early in the course of their illnesses, neither was admitted to an ICU. Doctors determined neither of them needed a ventilator; their cases technically counted as "mild."
But their lives have been irrevocably changed by the onslaught of symptoms — relentless and rolling waves of fever, headache, nausea, and the terrifying inability to catch their breath. For Roberts, it's robbed her of time. "I was so good. This COVID-19 has stolen my life," she says.
Weeks after her initial symptoms, Nowell could barely walk from room to room in her house. Roberts, too, struggled to breathe.
Long-haulers are often left out of the COVID-19 narrative. Data sheets count cases, hospitalizations, recoveries and deaths, but Roberts and Nowell don't fit neatly into any of these categories. Neither woman initially tested positive for the disease. They both went to the hospital for a test when their symptoms became too much to bear, both tested negative, both were told to go home and just rest. Both women dealt with doctors who didn't believe them until finally both got confirmation they did have the virus.
Many long-haulers say their doctors doubted their symptoms were as severe as they were saying. Roberts says her original primary care physician insisted it was just stress and suggested she watch Lifetime movies and do puzzles to calm down. "I know stress," Roberts says. "This was not stress."
Nowell, who at that point couldn't form words to read bedtime stories to her children, begged her doctor to help. "He said, 'Well, maybe you have a UTI. Or maybe it's a stomach infection. Let's call it a sinus infection.' "
Both women eventually found doctors who believed them, and that made a huge difference.
"I was relieved because I felt like I was going to get taken seriously for how sick I felt," Nowell says. "And then the other part of me was terrified. Because the whole world is dealing with this, and now all of a sudden it's in my home, it's in my body and that was scary."
That was a few months ago. More than a hundred days from their first symptoms, Roberts and Nowell still struggle to breathe through constant congestion. The headaches come and go, and so does the nausea. Roberts' lungs are so scarred she had a biopsy in early August to get a better picture of her prognosis. She's still waiting for the results.
Nowell says she's doing better, but it's been slow going.
The heartbreaking loneliness of the pandemic has been difficult enough for healthy people. But it's been a terrifying challenge for those like Roberts and Nowell who also must live with foggy minds, intense fatigue and continual fear of erratic symptoms. Roberts says she's still afraid to go anywhere because the worst symptoms still come on so fast.
They both get through the day with a mixture of hope and prayer. Nowell has Bible verses she relies on. And Roberts says, "I pray they find a cure."
RACHEL MARTIN, HOST:
The number of COVID-19 deaths in the United States now tops 160,000. We've had 5 million confirmed positive cases. The majority of people who get the coronavirus eventually recover, but there are many people who are suffering week after week, month after month.
Today, we're going to hear stories from two women. Natalie Nowell is a 34-year-old housewife in Memphis, Tenn., the mother of three young kids. Marjorie Roberts is 59. She was just starting a life-coaching business in Atlanta, Ga., when she started to feel symptoms. Both women got sick in the spring, and they are still fighting the virus today. They each remember when things began to change.
NATALIE NOWELL: It was in the end of April, about April 23. It was in the evening. And I just all of a sudden felt heavy, like something was...
MARJORIE ROBERTS: March the 26 is a day I'll never forget. Everything came down on me like a ton of bricks.
NOWELL: ...A ton of bricks sitting on my chest. I had shortness of breath. My neck was killing me. My back was killing me. And the fatigue was so strong at that point.
ROBERTS: By the time the sun went down that night, my whole had changed, and I had no idea what I was in for.
(SOUNDBITE OF MUSIC)
NOWELL: So I went to the ER.
ROBERTS: No one could go in. They just kind of had to drop me off on the sidewalk. It just took my scariness to a whole 'nother level.
NOWELL: It was almost like a flu test. It was one of the really simple nose tests.
ROBERTS: And he stuck it up my nose real quick.
NOWELL: And from their end, I looked fine.
ROBERTS: Your test is negative, and you have an upper respiratory infection, and you just need to go home and just drink plenty of water because you're not having this COVID, and you're not sick enough to be admitted.
NOWELL: And I was like, OK, well, good. I don't have COVID-19. That's great. But over the next few days...
ROBERTS: I got even sicker - diarrhea, shortness in the breath, throwing up. And I was having real scared nightmares. And it was just so many different things going on.
NOWELL: I began to have hallucinations at night.
MARTIN: What'd you hallucinate about? Do you remember?
NOWELL: There was someone in the room looking over us, somebody trying to get my kids. I would wake my husband up, and I'd try to explain what I was feeling, but I was basically nonsensical and trying to breathe. And so I would sit up really fast. I would beat my chest, just trying to get some air. I truly was afraid to go to sleep because every night was so scary.
(SOUNDBITE OF MUSIC)
NOWELL: I didn't want to leave my babies. I didn't want to leave my husband. I didn't feel like I should be fearful because I'd gotten a negative test, and I didn't want to seem like I was being overly dramatic. It was frightening. It was definitely frightening.
ROBERTS: And the second time they took me to the emergency room, they was like - really like, you don't need a ventilator. We told you that you didn't have COVID. And I'm like, well, something is wrong with me; please help me. So they sent me home again, and they told me to get in touch with my primary doctor.
NOWELL: So I reached out to my physician again. I don't know if, because I had a negative test, he didn't believe that I was as sick as I was.
ROBERTS: She didn't help me at all. She was really like, you're not sick. And she told me that I was mimicking what I was seeing on television and that I needed to watch good - Lifetime feel-good movies to get myself out of the funk.
(SOUNDBITE OF MUSIC)
NOWELL: He said, well, maybe you have a UTI, or maybe it's a stomach infection; let's call it a sinus infection. I was like, OK, so you're not going to be the one to help me get well.
ROBERTS: You're stressed. You're stressed. She kept saying I was stressed and it was all in my mind.
NOWELL: I started talking to my parents, to my husband. And...
ROBERTS: I was blessed to find a new doctor.
NOWELL: And she was like, I am certain you have COVID-19. And she sent me to a testing site, and I got tested, and I had the positive test.
ROBERTS: And they took the blood. The next day, she called back. She said, my suspicions were correct, and I need for you to see a lung specialist.
NOWELL: I was relieved because I felt like I was going to get taken seriously of how sick I felt. And then the other part of me was terrified.
ROBERTS: Petrified - because it's being told to me what I already knew, you know? I'm like, oh, my God, this COVID got me; it got me good. Then when I went to the lung specialist, it was revealed there was scar tissue in my lungs. And I was like, all this? All this is going on in my body?
(SOUNDBITE OF MUSIC)
MARTIN: What's a regular day like today?
NOWELL: I'm still congested. I definitely still deal with fatigue. And I'll have days when I can't put all the words together that are in my head. I can't get them out. I'm reading a book to my kids, and my son will say, mom, why can't you read anymore? That was really scary because this is weeks - well, months, really, by this point. And I started having a pain in the back of my head to where I would feel like I could black out. And my doctor sent me to have an MRI done, but I've had no injury. I have not been hurt in any way. I've just had COVID-19. And it's done that much to my body, three months after I tested positive.
ROBERTS: This is 18 weeks. This is 18 weeks that I have been suffering. The shortness of breath comes when it wants to - don't know which symptom is going to come back. If I have a headache, I get scared because I know the headache can be so intense. If I cough too much, I cough up blood. And I just pray that they find a cure.
MARTIN: That was Marjorie Roberts and Natalie Nowell talking about living with long-term COVID symptoms. I want to bring in Patti Neighmond now. She's a health policy correspondent for NPR. And, Patti, you were just listening to those stories with me. It's excruciating at points to hear how these two women are describing just persistent pain and suffering over months and months. I mean, Patti, do we know how exceptional or typical these two experiences are?
PATTI NEIGHMOND, BYLINE: Well, let me just first say, Rachel, it's just heartbreaking and so hard to hear these stories. It's just so sad. And they are actually examples of everything we don't know yet about this disease. We just do not know the natural history of the infection. We don't know why some people have prolonged symptoms. We know a little bit about why some people suffer more severe complications, but it doesn't sound like either of these women had underlying medical conditions...
NEIGHMOND: ...Or Were at an age that would put them at that risk. But both are saying now that they still suffer symptoms - fatigue, headaches, tingling in the hands and legs, shortness of breath, a sort of mental fogginess. There is something interesting about the mental fogginess. It seems, from some suggestions, that the virus is somewhat unique in that it attacks not only the lungs but it can also attack other organs, including the brain. Now, doctors don't know how it might do that. There's been some suggestion it has to do with perhaps increased inflammation or changes in blood vessels. But, again, the disease remains a mystery.
MARTIN: Yeah. I mean, do we know anything - is there any data about what the average recovery time is?
NEIGHMOND: There are some trends that doctors do report, but we don't know much. But there are some trends. There are some averages. It seems that young people, college-age students, who get sick, they get better pretty quickly - within a week - and many feel back to somewhat normal within one to two weeks. But if people are sick enough, like the two ladies we've just heard from in this story, if they're sick enough to get tested, recovery can take up to four weeks, maybe more. And then, of course, if patients are hospitalized, it can take six weeks or more. And if they end up in intensive care, that recovery can take months. And for many patients, depending on age and underlying medical conditions, they may never get back to where they were before the virus.
MARTIN: Yeah, So we didn't go out looking for people who had false-negative COVID tests; it just so happened that this was the experience of these two women. Do we have any idea how common that is?
NEIGHMOND: Well, again, not very common. We don't know exactly why, but it is not very common. It could be that, in the early days of testing, there was less accuracy. But there have been improvements to today's testing. It's more rigorous and accurate.
NEIGHMOND: But even now, results can end up being wrong. And that's not particularly common, but it can happen.
MARTIN: So I guess the question - trying to be positive, trying to look forward - I mean, how can scientists, medical researchers, how can they learn from people like Marjorie and Natalie, people enduring long-term COVID-19 symptoms?
NEIGHMOND: Studies, studies, studies. I mean, they need large groups of people who have been infected with the virus - 10,000 or more at least, says one scientist I spoke to - and they need to follow them for at least a year, ideally more. And during that time, they would track the symptoms, if new symptoms appear, symptoms that continue and prolong. And they'll check in with them every month or so to see who's developing them and why.
And the goal here is to be better able to predict who's at risk for prolonged symptoms. There have been suggestions it might have something to do with blood type or race or gender, but no one really knows. So large long-term studies can offer some answers and help doctors diagnose and treat patients who are at risk of prolonged symptoms and possibly prevent that.
MARTIN: NPR's Patti Neighmond from our science desk. Thank you so much for that context and reporting. We appreciate it.
NEIGHMOND: Thank you, Rachel.
(SOUNDBITE OF GUSTAVO SANTAOLALLA'S "ALMA") Transcript provided by NPR, Copyright NPR.