A world forever transformed: Life with Long COVID

Long COVID can change the landscape of your life, leaving you wondering ‘is this going to be forever’?

[Jawahir Al-Naimi/Al Jazeera]

In the Before Times, Meg St-Esprit would have defined herself as an “extrovert to a fault”. The mother to four kids under 10 and freelance journalist based in Pittsburgh, Pennsylvania, was the type of person who never really stopped moving. But that was before. Before COVID, yes, but, specifically, before her own case of COVID. Meg came down with the sometimes-fatal virus almost exactly one year ago, just before Thanksgiving, 2020.

COVID is a virus of vicissitudes. For some, the experience is minor, painless, barely noticeable. For others, it is comparable to the flu, but on steroids. Still countless others – in the United States, 775,000 at last count – have lost their lives to a disease that scientists are still learning more about each day. For Meg, who developed a secondary syndrome known as Long COVID, the road to recovery has proven arduous and life-altering.

Although it is hard to trace, she believes she accidentally contracted COVID last November from her mother, who had been unwittingly exposed and who was assisting with childcare. From there on, the virus spread to Meg; her four children, Eli, Naomi, Ezra, and Naarah (one of whom, Eli, who battles asthma, suffered the worst of it); and then, on the final days of quarantine, to her husband, Josh. All told, her house was quarantined for nearly a month.

As members of her family began to recuperate, Meg noticed something curious: she didn’t seem to be recovering. “We were all in such a similar timeline,” she said. “Now my mom was driving a car again.” Meanwhile, she was struggling with basic ambulatory tasks, like walking up the stairs.

Alarm bells didn’t ring until a few weeks later. In mid-December, COVID-free and hungry for distraction, Meg took her kids to Pittsburgh’s Carnegie Science Center. “It has this big spiral ramp between the floors,” surrounding a large space capsule, she said. That is when the normally fit and one-month-well Meg encountered a problem. “I couldn’t make it up the ramp,” she said. At the top, her heart rate continued to soar, even after minutes of rest. Then, she realised she was facing a different complication.

A follow-up visit to the doctor revealed a series of life-threatening problems. Her haemoglobin – the iron-transporting protein found in red blood cells – read at 4 grams per deciliter; anything below 12 in an adult female denotes significant anaemia. More dangerous was a swollen arm that masked nascent blood clots. She was admitted to the hospital, where she stayed for the better part of a week. “Couldn’t see my kids, no one could come visit,” she said. “They gave me lots of units of blood, lots of iron. And then they had to put me on Heparin for a long time, and that means they have to take your blood every couple hours.”

That was over a year ago, but Meg’s medical problems have not subsided. Both the anaemia and threat of blood clots persist, and she is still on medications and undergoes regular ultrasounds on major veins every couple of months to monitor her clotting concerns. She also developed myocarditis, an inflammation of the heart muscle often related to viral infection.

But one of the most life-changing lingering effects of COVID, which Meg still battles daily, is the so-called brain fog. An October neurological study, released by JAMA Network, confirmed that some patients recovering from COVID are likely to experience cognitive impairments for months after the virus has resolved. These impairments include attention deficit, memory recall, word recall, and category fluency. “In this study,” Jacqueline H. Becker, PhD, Jenny J. Lin, MD, MPH, and Molly Doernberg, MPH, wrote, “we found a relatively high frequency of cognitive impairment several months after patients contracted COVID-19.”

But some patients are experiencing these types of COVID-related issues a year or more after contracting the virus. An understanding of COVID is ever-evolving. So, too, is an understanding of how long and persistent these aftereffects may be for those who suffer from them.

Meg describes her brain fog the way one might the beginning stages of age-related cognitive decline. She has trouble finding the right words sometimes, a liability in her profession as a writer. Tasks that used to come easily are more of a challenge now. Her work volume has declined. She has taken on, she estimates, 40 to 50 percent fewer assignments this year, a decrease in workload that has impacted her family’s financial solvency. One piece she has been working on for months for a major national publication – a data-driven piece requiring deep reporting – has suffered delays. “It’s so mentally taxing,” she said of that type of work.

[Jawahir Al-Naimi/Al Jazeera]

Long-term studies regarding Long COVID don’t exist yet, meaning that Meg and others like her – she participates in online forums that connect sufferers – have no distinct answer as to when (or if) symptoms will subside. Meg only recently began viewing her condition as a chronic illness. “My friend, who has chronic illness, she said something to me: ‘Now that you’re dealing with chronic illness, you’ll just have to learn that some days you don’t have the spoons to do everything you need.’” Meg did not consider herself chronically ill. But then her friend raised a salient point. “She’s like, ‘You’ve been ill for over a year,’ And that’s really hard to take.”

Meg now battles with the idea that her condition may be permanent. “Is this going to be forever? Is it going to clear up? Are they going to figure it out?” she has found herself wondering. “They enrolled me in the Long COVID clinic, but it really just seems like they’re just trying to gather information more than solve things.” This articulation may be the most important when it comes to this condition – a condition that, a recent study conducted by Penn State College of Medicine determined – impacts more than half of those diagnosed with COVID-19. There is not necessarily an end in sight to some of these less tangible ailments, ailments that affect how patients communicate, express themselves, and operate their day-to-day lives.

And beyond impacting the ability to earn a living in a profession rooted in cognition, Meg has found that Long COVID has reshaped the landscape of her social and family lives. Her capacity, she noted, is diminished. A memory on social media recently reminded her of a night, not so long ago, where she took the bus into the city, saw a play, and went for drinks with a friend. The idea of a similar social gathering today, in the aftermath of the virus, feels untenable. “I thought: that sounds overwhelming and exhausting,” she said. “I wouldn’t want to do that now.”

That sense of exhaustion has filtered into her everyday life, too. COVID had already exposed a brittle reality for American mothers, many of whom left the workforce en masse (a 2020 report by the Census Bureau revealed that roughly 3.5 million women with school-age children exited the labour market in the early days of the pandemic). Meg, who homeschooled her children for the majority of 2020 and 2021, assumed multiple roles: parent, teacher, full-time caretaker. With a new set of health-related circumstances added to the mix, parenting has become an unintentional minefield of emotion.

On a recent evening, she came home to her house full of children after an iron infusion, one of the medical procedures she now requires regularly. Her 8-year-old daughter held a library book. “She asked me what the title page said in this book,” Meg said, but she lacked the bandwidth to offer an answer. Instead, she lost her temper. Meg, whose children are adopted, puts pressure on herself, she said, to perform as a parent. “They [their birth parents] chose me to be their mom. I need to be the best mom I can be. And then, to just feel myself crumbling to even do basic things sometimes… I feel like I’m letting them down on what they deserve.”

Such is the thickness of Long COVID, a set of maladies with no clear resolution. For Meg, it is a weight, bound by no set moment in time. She can tell you when it began, of course, but not when it will end. Some days, she feels angry – angry that her caution surrounding COVID resulted in illness anyway, angry that the vaccines came a moment too late, angry that others in her life have not taken the pandemic as seriously as they should.

There is also a vulnerability to the aftershock of Long COVID, to suffering from a disease that appears on medical records like a spectre. Is it there? Can we prove it? Long COVID’s symptoms are amorphous, its timeline indistinct. There exists no scientific explanation for why some may develop it while others may not – for her part, Meg had no risk factors associated with a severe manifestation of the virus.

What is left, she said, is a world forever transformed, a world where she wonders if she should stop trying so hard. This is her new reality, formed from one virus, one moment, one November a year ago. “I think a lot of parts of it will get under control,” she said of Long COVID. “But the fog and the word searching… I really question if that will ever get better.”

Source: Al Jazeera