What It's Like When COVID-19 Lasts For Months
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."
Copyright 2020 NPR. To see more, visit https://www.npr.org.