COVID-19 ‘Long-haulers’ Face Uncertainty And Frustration

By: Alan Pollock

Topics: Health , COVID-19

Christine Menard is one of a growing group of COVID-19 “long-haulers.” ALAN POLLOCK PHOTO

 

HARWICH — Two years ago, Christine Menard was on top of the world, literally. Always fit and energetic, she defied the limitations of asthma and climbed Mt. Kilimanjaro.

Two years later, having suffered the ravages of COVID-19, she’s celebrating another achievement.

“I’m at Day 115, and it’s only now that I can get through a day without a nap,” she said. “That is a huge improvement, a monumental improvement.”

Menard, 60, is among a growing group of people who identify as “long-haulers,” people who recovered from COVID-19 – or in her case, never had symptoms at all – only to find themselves fighting debilitating fatigue, heart and lung problems, and a host of other unexplained symptoms. It left her feeling frustrated, desperate, and doubting her sanity.

In her job as executive director of the Family Pantry of Cape Cod, Menard implemented a host of safety rules to keep the organization’s clients, volunteers and staff safe during the pandemic. She was a bit of a tyrant when it came to enforcing rules about social distancing and mask-wearing, and when an opportunity arose to provide COVID-19 testing for Pantry workers, Menard signed up to go through the process so she could teach others how to do so. Having ventured out in public only five times since the start of the pandemic, she knew she had nothing to worry about – until her test came back positive.

“I literally picked up a laptop and a box of cookies somebody had given me, and I walked straight out the door. I said nothing to anybody,” Menard said. She wasn’t worried about herself, but worried her diagnosis might keep the Pantry from serving the crush of clients who were now visiting. “My worst nightmare had just happened,” she said. As it turned out, she was the only one at the Pantry who tested positive, and public health officials praised her and the organization for having stringent COVID protocols in place. The pantry always was, and remains, a very safe operation.

Menard notified public health officials and her doctor, followed the quarantine procedures, and wondered what might happen next. Having received her test results on a Thursday, she didn’t have to wait long.

“By Saturday morning, I knew something was up,” she said. Having never had a cough, a fever or other COVID-19 symptoms, Menard noticed that she got winded just walking across the yard. A lifelong asthmatic, she was used to watching for respiratory symptoms, and was aware of a new shortness of breath.

“After that, the fatigue starts and it’s unbearable,” she said. She was constantly tired, and began having heart palpitations, shaking and “brain fog,” as she describes it. When her quarantine period was over, Menard returned to work half-time for the first week, and by the second week she was limited to conference calls and answering emails. Even now, the shortness of breath means she has trouble holding a conversation while walking or even standing. Her doctors, and the specialists to whom they referred her, were perplexed. A battery of tests showed no obvious problems. One doctor was particularly frank.

“She said, ‘I can clearly see there’s something going on, but it probably won’t kill you,’” Menard said. Like all the other doctors, she recommended getting lots of rest and simply waiting for her body to get better.

Three months after her test results, she was admitted into a research group being run by Boston Medical Center, focusing on people who have similar symptoms after a COVID-19 diagnosis. The cross-disciplinary group of specialists went through her medical history and symptoms carefully. Menard felt it was important to share with them that she’s always been healthy, fit and energetic.

“I said, ‘I need to know that I’m not crazy,’” Menard recalled. “They said, ‘Well, the one thing we can tell you is, you are not crazy. And you’re not alone.”

Long-haulers like Menard often question their own sanity, when test after test fail to confirm any known illness. And the symptoms didn’t abate.

“Every day I’d wake up and it would be a different adventure,” she said. Some days she wouldn’t be able to breathe, others she’d have heart palpitations. Or maybe she would feel the fatigue or mental haziness. And then occasionally she’d have a good day, dash to work and work on a variety of important projects, “then you’re destroyed for like three or four days.” It was particularly difficult to feel like her condition might be improving, “and then you just crash. It’s psychologically devastating,” Menard said.

Though she wouldn’t wish her symptoms on anyone, Menard knows that there are other long-haulers out there, as evidenced by a growing number of discussion boards and social media groups devoted to the topic. Articles are appearing in major media outlets. As the pandemic continues, mainstream medicine will begin taking notice of long-haulers, she said.

Menard is conducting her own informal research study, keeping a journal of her daily symptoms and looking for correlations to things she’s eaten or done. With help from a holistic dietitian, she’s found some strategies that seem to help.

A person who values her privacy, Menard agreed to be interviewed because she hopes to reach others who might be experiencing similar symptoms.

“It’s starting to get out there. But the Cape has such a low incidence” of COVID-19, she noted.

For those people, Menard has simple advice.

“Just be patient. Take it easy. Know that you’re not crazy, and that it’s possible that all the tests will come back fine and you still feel bad,” she said. And though the process is very slow, she is feeling some improvement over time.

“I’m starting to see a light at the end of the tunnel,” Menard said.

For everyone else, she has advice that’s even more blunt.

“Wear a mask, for God’s sake,” she said. “I’ll do it for you and you do it for me.” Keep socially distant, wash your hands frequently and stay home when you’re not feeling well, she said.

“You can put a mask on, or you can spend the next 90 to 120 days feeling like hell,” Menard said.