The future looks starkly different for 15-year-old Charlise Bruchet.
The Chestermere teen used to be active in athletics like volleyball, basketball and sailing. She was also planning on going to university to study engineering and law.
Now, going for a brisk walk now leaves the Chestermere teen out of breath. And persistent brain fog has impacted her grades.
“I can’t do any of it. I tried out for my basketball team and I made it and I had to drop it. I couldn’t breathe while I was playing,” she said. “I had to drop out of gym class, as well.”
Having to stop playing sports at the start of senior high was “really upsetting.”
“Sports were my life. They really helped me in school, too. They helped me de-stress, think about other things and just bring me a lot of joy — especially team sports.”
And the trajectory of her academic career has changed markedly for her.
“I’ve never had such a hard time with school. I’m putting in more hours than even I did in the last couple of years,” Charlise said. “It’s just been really frustrating because I like to excel in my academics.”
Before catching COVID-19 in April 2021, the Grade 10 student expected to continue excelling in the classroom and sports, graduate from high school and continue on into university. That future is now uncertain.
“Right now, we don’t really know,” Charlise said. “I don’t know if next year I’m going to have to take spares to nap and whatnot. But hopefully, if I start to feel better, I’d love to go into engineering and then become a lawyer afterwards.”
“It’s sad because prior to this, Charlise was already in the driver’s seat. She had schedules. She was super-organized. She did everything on her own. She always spoke for herself. She always talked to everybody on her own,” mother Nina Bruchet said.
“And now I feel like I’m going back to having a small child because there’s so much that’s coming at her and I have to try to sift through what’s good for her and what’s not so good for her.”
At the time of her infection, Charlise wasn’t able to be vaccinated against COVID-19. In the year since, messaging from public health authorities has changed from “bend the curve” to “living with COVID.”
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Chest pain, an elevated resting heart rate, rapid temperature fluctuations and lower leg pain – without exercise – are symptoms Charlise has been living with for more than a year. And she’s not alone with her symptoms.
A recent study from Denmark’s State Serum Institute showed nearly a third of people who caught COVID-19 in that country still had lingering effects six to 12 months later.
While an initial infection can have symptoms that end in as little as two weeks, symptoms lasting for a month or more is known as post-COVID syndrome or simply “long COVID.”
More than 200 symptoms have been identified as part of the sequelae (the medical term for conditions that result from previous injury or infection) of long COVID. The most common are fatigue and post-exertional malaise, but they can affect 10 systems in the body, including cardiovascular, musculoskeletal, gastrointestinal, reproductive, neuropsychiatric or entirely systemic.
Unlike the connection between pre-existing health conditions and severe infection of SARS-CoV-2, predicting who will develop long COVID is more of a challenge. Some studies appear to show mild symptoms frequently develops into post-COVID syndrome.
One U.K. study published in January backs up the anecdotal evidence that being fully vaccinated can help with symptoms in long COVID patients.
Two years a long-hauler
Hannah Wei was working with a client in Taiwan early in the pandemic’s development. A qualitative researcher with clients in North America, western Africa and Asia, Wei was used to international travel as part of her job.
An Ottawa resident and Canadian citizen, Wei’s flight home on March 10, 2020, was where she suspects she caught the original strain of the virus. The World Health Organization declared COVID-19 a pandemic the next day.
In a pattern that’s now well-known but was novel two years ago, Wei started getting flu-like symptoms five days after landing. But it wasn’t long before she needed to go to hospital.
“It started off with just fatigue. I thought it was jet lag and naturally so — after a couple of days of international travel, you don’t feel the greatest. But it gradually became a worse cough and by day four, day five, I felt tightness in my chest and it was very difficult to breathe. I ended up having to go to the ER to get some help,” Wei told Global News.
It was an April 2020 New York Times op-ed by Fiona Lowenstein that put Wei on the path to finding support for the novel coronavirus and ultimately putting her skills to use for an exponentially-growing community. She joined online support groups and eventually found the Patient-Led Research Collaborative, which she now co-leads.
“The Patient-Led Research Collaborative was born out of the Body Politic Support Group, and this support group came into being during the pandemic when people like myself have not been able to find resources and help to manage our symptoms,” Wei said.
Six weeks after her initial infection, Wei thought she was in the clear, as her chest pain and shortness of breath went away.
“I was still getting fatigue, but I felt that some of my symptoms went away and if I just push through the next couple of weeks by catching up on the work that I missed, I would be fine,” she said. “Turns out I was not fine.”
Charlise received similar “just push through” advice from her doctor soon after her infection, advice that left her requiring days to recover from a previously leisurely run for the 15-year-old.
Post-exertional malaise — tiredness that comes after a level of activity that is nearly too much — left Wei bedridden for most evenings and weekends in the summer of 2020. That malaise is another common symptom experienced by long haulers.
“It wasn’t only the physical exertion that brought on post-exertional malaise, but also the cognitive exertion, so this not only impacts workers who have physically demanding jobs,” Wei said. “That’s an obvious reason why there are a lot of teachers, health care workers, chefs, cooks in our communities who are no longer able to work. But also this condition impacts knowledge workers.”
Through 2020, Wei had to cut her client list by two-thirds, with resulting income loss. Being a professional that could do some of her work remotely, Wei didn’t face the same sort of dilemma facing wage workers with long COVID.
“Even if you work the same hours — and we’ve seen this in our surveys and other studies — you have to take a longer time to recover. So that means your weekends are gone. That means your nights — you can’t spend time doing your hobbies. A lot of people just come home and lay on the bed.”
“People think that this is something that you can either exercise yourself out of or work yourself out of, and gradually it’ll get better,” she said. “But what we see in the (long COVID) community is that people become a little bit cyclic: it gets a little worse and then you rest for a couple of days or a couple of weeks and then somehow it gets a little better,” Wei said, from her home office in Ottawa. “So it’s a relapsing-remitting illness, and that has become one of the most difficult realities of trying to recover from this condition.”
Two years later, most of the symptoms for the co-lead of the Patient-Led Collabrative have resolved.
Wei said the science around long COVID, while still evolving, has come a long way since the first wave of the pandemic, including better recognition of the syndrome and courses of treatment available for doctors to take patients through.
“But I think that patients still carry the burden of educating their care providers as to what’s going on in their bodies and how they are recovering in terms of their pace.”
— with files from Reuters
This is part one of a three-part series on Long COVID. You can read part two here and part three here.
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