My Year, And Counting, Of Long COVID

March 6 was my COVID anniversary—a week or more earlier than most Ontarians. That was the day my long COVID symptoms started last year, and I’m still working my way back to normal.

It started rather innocuously, with a sore throat that felt very much like post-nasal drip irritation. So I shrugged it off and went about my Friday routine. (I’m self-employed and work from home, so it wasn’t like I was going into an office.) But it didn’t clear up, and by Monday, I was also battling fatigue and my sinuses were completely congested. I was definitely sick—and the unusually slow onset gave me the sinking feeling it was not a cold or flu.

I had a doctor’s appointment scheduled for Tuesday to get a prescription refilled, so I called Monday to see if I could avoid going in. The receptionist asked if I’d travelled in the last couple of weeks. I hadn’t, so I was told I’d just have to put on a mask while in the office.

By Tuesday, my lungs were feeling tight and irritated when I drew a breath. But the nurse and my doctor, as well as the Telehealth nurse I spoke with five days later, all seemed to view my lack of travel history as a good sign. COVID was extremely unlikely, they all said.

About two weeks into my illness, my lungs and cough were getting worse by the day, and I was really starting to get worried, so I called my doctor’s office and spoke with a walk-in doctor. When she told me I didn’t qualify for a COVID test because my temperature of 37.8C did not meet the threshold of 38C, I broke down and cried.

There I was, alone in my apartment, scared and just waiting to see if I’d get better or worse. Once the typical duration of a flu had passed, and I still had active flu-like symptoms that were getting worse, not better, my doctor diagnosed me as a presumptive COVID case. And thus began our regular check-ins.

I’ve spoken with my doctor a lot over the past year, and I often think about what it’s like to be on the other end of those calls—to be the doctor whose patient has COVID. My doctor is now on leave, so I spoke with Dr. Jennifer Kwan, a family physician in Burlington, Ont., about what it’s like to treat COVID patients by phone. “We have to be comfortable with uncertainty,” she says, noting family doctors often provide support to patients when answers aren’t readily obvious. COVID, however, was a bit of a different matter. “Early on we did feel helpless, but we were also learning and trying to provide the best care regardless of whether we had the usual tools or not. We do the best with what we have, but we don’t always have the answers.”

Like Kwan, my family doctor was very up front about the fact new information was emerging and medical protocols were changing daily. I appreciated her candour, and I think she appreciated that I knew and understood there wasn’t much either of us could do but wait and see.

Having COVID was sort of like riding a daily rollercoaster of irritated lungs, awful fatigue and (at least for me) anxiety, among other symptoms. You’ll feel awful, so you’ll call your doctor, but by the time your phone appointment rolls around a day or two later, you’re feeling a bit better.

My weeks in isolation revolved around the times I had enough energy to cook and eat basic meals, and, because I felt worse in the afternoon and early evening, I ended up going to bed around 1 or 2 a.m. and waking up between 10 and 11 a.m. I also had to figure out workarounds for simple life tasks. Friends and neighbours generously picked up groceries before I clued into ordering through Instacart. I even washed a set of bed sheets in my bathtub (never again).

As cases were exploding in New York City, and doctors were reporting younger adults—people my age (I was 36 at the time)—were dying from strokes, I began to realize the anxiety from the news was aggravating my symptoms. So I ditched the doomscrolling and voracious news reading in favour of anything funny or fluffy on Netflix and Amazon Prime. It was a better distraction, anyway, from the miserable afternoons of coughing and utter fatigue. And at night, I’d watch puppy videos while lying on my stomach before putting on a guided meditation to quiet my racing thoughts as I nodded off to sleep.

***

The weird and complicated thing about getting COVID in early March—before the pandemic was even officially declared—was that patterns in symptoms were emerging as I was experiencing them. Even the terms long COVID and long-hauler emerged as I was in the thick of it (post-COVID syndrome has more recently joined the pack). There’s no definitive definition of long COVID, but it’s generally accepted as referring to COVID patients who continue to have symptoms four weeks after they fall ill. It’s been estimated that about 10 percent of COVID patients will have long COVID, but some studies are beginning to suggest the number may be higher.

A small study out of the University of Washington found about 30 percent of 177 patients with lab-confirmed COVID had lingering health issues between three and nine months after their illness began. Meanwhile, the U.K.’s Office for National Statistics estimates around 20 percent of COVID patients who are not hospitalized have symptoms for five weeks or longer, and 10 percent have symptoms for 12 weeks or longer.

The most common lingering symptom cited in numerous studies is fatigue, but an ever-widening range of symptoms have emerged from surveys with patients. The Patient-Led Research for COVID-19 team released a preprint of results from its international survey of 3,762 patients in December, and patients collectively reported 205 symptoms across 10 organ systems. (Full disclosure, I completed this survey.) But we still have no idea what the long-term prognosis and treatment is like for long COVID patients.

We are starting to see clinics dedicated to helping long COVID patients open up across Canada. The University Health Network’s Toronto Rehabilitation Institute launched its virtual outpatient COVID-19 Rehab Clinic last summer, with a focus on treating symptoms and helping patients reach their goals, whether it’s returning to work or running a half marathon. Rehabilitation specialists are used to treating medically complex patients, but COVID is different. “We’re learning alongside our patients what it means to be recovered from COVID, and what the rehab looks like,” says Dr. Alexandra Rendely, a physical medicine and rehabilitation physician at Toronto Rehab. “What our clinic is hoping to do is treat their symptoms and get them back to doing the things they enjoy, restore their function and quality of life and help guide them through these difficult times and uncharted territory.”

Fatigue, shortness of breath, joint and body pains and brain fog are the most common issues the clinic is seeing in its patients, and there are a range of other symptoms as well, some of which are constant while others come and go from day to day. And there’s no playbook for treating patients—unlike stroke rehabilitation, for example, we don’t have data-backed expectations for treatment outcomes.

“It’s hard for me to say what’s going to happen in six months or a year, because we don’t necessarily have a large cohort of patients who’ve had these symptoms for a year that we can draw upon,” says Rendely. “We can use our best-educated guesses from other populations, but I don’t always have all the answers for how this might look down the road.” Just as with our understanding of the virus’s impact on the body, only time will tell.

There’s no doubt we’re going to need a lot more long-COVID rehabilitation clinics and programs as total case numbers continue to rise and variants of concern make younger people sicker. “We are seeing that this is an emerging rehab space that needs further funding,” Rendely says. “We don’t have that right now, and it’s hard to scale it without opening more centres.” Already, Toronto Rehab’s COVID-19 Rehab Clinic is at capacity, and it has had to restrict its intakes to referrals from within its own network.

***

In the first two months or so of my illness, I developed just about every non-critical COVID symptom you can get—sore throat, dry cough, lung irritation, intense fatigue, stuffy nose, diarrhea, conjunctivitis, loss of smell, body aches and pains, and an elevated temperature of 37.8C (now recognized as a fever in COVID patients). At times, I’d feel like there was a band of tightness around my ribs—like wearing a too-small sports bra—and while this was just another symptom on a growing list when I was experiencing it, we now know it warrants a trip to the hospital. If I’d gotten COVID just two months later than I did, I would have qualified for testing and very possibly would have been told to head to the hospital. Instead, I rode it out at home.

The reality is, while we know a lot more today, if you get sick with COVID, you’re still at the mercy of luck. “Not much has changed in terms of outpatient treatment,” says Kwan. “Now that we understand a little more, the threshold to send somebody to the hospital is a little lower. And we can try puffers now that we know they’re safe—before, we didn’t know if they were going to make it worse.”

I finally seemed to be turning the corner in early May last year, two months after I first felt sick, but I’d been burned by that notion before, so it took a while to trust that I was, in fact, improving. After no new symptom onset for a few weeks and a fairly consistent, if miniscule, improvement week over week, I was given the okay to stop isolating on May 23—78 days after my COVID symptoms started.

Even with doctor-approved freedom, it was another week before I ventured out. I had a lot of anxiety about going out into a world where I could get reinfected—something we were starting to hear rumblings of at the time (we now know it’s rare, but does happen). My first walk in early June was amazing, but strange. I’d gone into quarantine in winter, when everything was frozen, and emerged with spring gardens in full bloom. I distinctly remember the joy of feeling the wind on my face as I walked down my street.

But even as I had this new freedom, I was still dealing with lingering issues. I’d get fatigued easily, my lungs still hurt and my heart would race and pound at times. It took a few months for my digestive system to level out. I’ve had an ECG, bloodwork and allergy testing (following an inexplicable food reaction), but the results showed nothing of concern. And I’m not alone in knowing something’s wrong despite seemingly normal test results.

When one of her COVID patients was still dealing with symptoms several months after infection, Kwan ordered a range of tests. “Everything seemed normal, but she wasn’t feeling better. She still had chest pain and trouble breathing—and we’re talking about a [previously] healthy, young adult. Why is this person so sick?,” Kwan says. “We involved specialists, and nobody could really find any problems, but the symptoms are real.”

Acknowledging long COVID patients’ symptoms—even in the face of seemingly normal test results—is important. “It’s validating for patients to know that we hear them,” says Toronto Rehab’s Rendely. “Even though we don’t know exactly what the reason is [for], we do believe that their symptoms are real.”

I’ll be the first to admit I’m faring a lot better than the many long COVID patients who are suffering with debilitating effects. For some people, the fatigue is so overwhelming it’s an effort to just get dressed. Some patients’ lungs are so ravaged they need to be on oxygen. And others experience intense brain fog that keeps them from going back to work. Then there are the long COVID patients who have heart damage, chest pain or a disconcertingly high heart rate all day, every day. Intense tinnitus (ringing in the ears) is also a serious problem for some. (American restaurant CEO Kent Taylor died by suicide in March after his post-COVID tinnitus became unbearable.)

I know I’m extremely lucky. The brain fog I dealt with as my work picked up has faded. The constant sore throat finally went away in December (although it makes surprise encores from time to time). And I noticed I had a big bump in my energy in January. But it would be nice if I could just shake those last lingering issues.

The suggestion that getting the COVID vaccines might be helping long COVID patients recover faster is a real bright spot for those of us living with these strange issues that are hanging on and, in some cases, can’t be explained. But until it’s my turn to be vaccinated, I’m riding the long COVID rollercoaster. I’ll feel pretty good, like I’m 95 percent—so close to normal—and then suddenly, my lingering issues will pop up. And just like that, I’m back to the twisting and turning, climbing and dropping, with no apparent end in sight. I might feel bone-deep fatigue on a Sunday afternoon. Or my allergies will go into overdrive mid-week. My hips will ache after a long walk. My lungs will feel irritated or my heart will pound and race randomly. I’ll have incredibly itchy patches of skin. And then it will be gone, as suddenly as it appeared. Until the next time.