Covid "long hauler"
by John Hilton
From the November, 2020 issue
"I spent quite a while not thinking I had Covid," Stephen Joy remembers. On March 19, he developed a cough. But he had none of the other symptoms people were being told to watch for at the time, like fever or shortness of breath.
For almost two weeks, it was just a cough. Then, at dinner on March 31, "it became clear I was struggling to swallow." His throat hurt, and when he looked in the mirror, he could see that it was swollen.
He took a Claritin and within minutes the swelling and pain went down. But Joy, who has a PhD in chemistry and works as a research investigator at the U-M Life Sciences Institute, had never experienced anything like that before. Thinking he might have developed a severe food allergy, he was concerned about anaphylactic shock and considered going to the emergency room. But "I literally thought, 'No, I shouldn't, because probably there's Covid in the air. What if I get Covid by going to the ER?'"
Instead, he left a message at his doctor's office. She called back and told him, "We think you may have Covid."
Tests were hard to come by then, so he just let his wife, Anne, and his co-workers know, then isolated at home. To his relief, none of his colleagues got sick.
Thinking back, his hypothesis is that he was exposed on March 13. He and his wife had already begun social distancing, but they'd also been stocking up in expectation of a shutdown order, and he'd made a grocery run that day. Masks weren't even recommended at the time, much less required, and no one, including him, was masked.
Symptoms for a mild case of Covid typically resolve in a couple of weeks. And around the middle of April, Joy actually met what at the time was considered to be the threshold for recovery: three consecutive days without symptoms. When he finally got a Covid test toward
the end of the month, it came back negative.
But then, on April 28, "I was sitting in my living room, and the only way I can describe it as is, I suddenly felt like something bad was happening in my head," he says. "It felt a bit like something had cracked open and started leaking in my brain."
He felt extreme vertigo, then "one of the worst headaches I've ever had. I basically went from totally fine to dizzy, headachy, light sensitive, and even sound sensitive."
He knows the exact dates because, with a scientist's precision, he kept a log of his symptoms, starting with that first cough.The headaches began on Day 41.
A medication his doctor prescribed helped with the pain for a while, but then it returned. And the vertigo and light sensitivity never let up. He couldn't ride his bike, and for a while, he says, "I even had to stop riding in cars." For six weeks, he spent "a lot of time just kind of sadly lying down in a dark room."
In May, an antibody test confirmed that he had been exposed to the novel coronavirus. At that point, he heard from the health department.
"The county was actually alarmed, because the nurse said they had never encountered any other patients like me who tested positive for antibodies, but were still sick ten weeks, twelve weeks into this illness."
Joy, thirty-five, is a "long hauler." While most people who survive Covid-19 recover fairly quickly, an unknown number continue to experience debilitating symptoms months later.
The headaches finally let up on Day 119. "July 15 is the very first calendar day I had where I woke up in the morning without a headache and I went to sleep at night without a headache," he says. After more negative Covid tests, he was cleared to return to work later that month. But it's been a long road back.
He's had to rebuild his stamina slowly. His first day back, "I only stepped in for about an hour or two just to sort of start getting reacclimated. When we spoke ten weeks later, his timesheets showed that he's missed 340 hours of work. It would have been more, but he has administrative tasks at the lab that he's able to handle remotely.
"I've been very fortunate," he says. "My boss at work has been unbelievably supportive. All my coworkers have been doing extra things to help like pick up the slack while I'm struggling through this." And "this would have been horrible to go through without my wonderful wife."
He and Anne met salsa dancing as undergrads at the University of Chicago and have been together for eleven years. The couple have a big vegetable garden and a large collection of board games. "I'm so lucky to have a supportive partner," he writes in a follow-up email. "Being alone [through the illness] would have been torture."
Still, Anne asked that her last name and profession not be included in the article. She's job-hunting, and they both can imagine insurance issues down the road, with prospective employers being concerned about taking on someone whose spouse has a pre-existing condition.
Joy says he also hesitated to talk publicly about his ordeal, but felt it was needed to raise awareness of what some are calling "long Covid." He's especially conscious that many patients are not as well supported as he was.
The New York Times reported recently that for many long haulers, "their biggest challenge is getting other people simply to believe them." The paper quoted one woman who'd gone to an urgent-care clinic with difficulty breathing, only to be told she was just anxious. "The medical professional's advice? Go home and have a glass of wine."
As a chemical biologist, Joy has a professional as well as personal interest in the condition. "I'm extremely fascinated by my own illness," he admits. Though the challenges long haulers face are belatedly being recognized, little is known yet about how a viral infection might cause a chronic illness.
Meanwhile, his recovery continues. He got back on his bike for the first time in August. When we talked in early October, it was Day 209--and it had been two weeks since his last headache.
[Originally published in November, 2020.]
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