By Rogene Teodoro

Disclaimer: A source in this article, Emerson Williams, is a contributor at The Eyeopener. She was not involved in the editing process of this article.

Saffron Binder learned about long COVID the hard way—by getting it. It was January 2022, two years before she’d enroll at Toronto Metropolitan University (TMU) and she’s sick with what she only suspects to be COVID-19.

Around the time she thinks she should be getting better, she starts having
unexplainable symptoms—respiratory issues, pain in her back, joints, muscles, neck and pretty much everywhere else. She also has fatigue, shortness of breath, postnasal drip and the most worrying to her—chest pain. 

Weeks go by, and alarmingly, her symptoms aren’t going away. It affects her ability to sleep, to work and to live her life as usual. She can’t even walk her dog around her neighbourhood without becoming exhausted. She’s desperate to understand what’s happening to her and her body. 

Binder turns to the internet and compares her symptoms to people who’ve had similar ones. After matching her symptoms with her findings, it all becomes clear to her—she’s dealing with a postviral illness, and she’s now confident enough to give it a name—long COVID.

Binder does what anyone might do in this situation and visits her family doctor. She shares her anxieties over the chest pain—aware that long COVID can increase the risk of cardiac issues. However, her doctor refuses to refer her to a specialist—not even for her other symptoms like joint and muscle pain. Binder then urges her doctor to approach the situation with more urgency, but this too gets her nowhere.

She begins to realize if she wants help, she’s going to need to look elsewhere.

Long COVID—sometimes called post COVID-19 condition—is defined by Health Canada as a condition where the symptoms of COVID-19 “persist for more than 12 weeks after the infection.”

Health Canada lists some of the most common symptoms in adults as fatigue, trouble sleeping, shortness of breath, general pain and discomfort, cognitive problems (such as memory loss or difficulty thinking and concentrating) and a variety of mental health symptoms—including anxiety and depression. These however are only a handful of the over 100 symptoms associated with the condition. One’s symptoms can also vary in severity—some disappearing, reappearing or worsening over time.

Long COVID is not uncommon either. Among Canadians who’ve had a confirmed or suspected COVID-19 infection, 16.7 per cent develop long-term symptoms. Studies have shown that every  infection of COVID-19, regardless of the severity, significantly increases one’s risk of developing a post-COVID-19 condition.

Symptoms can last far longer than 12 weeks too. Among Canadians who developed long-term symptoms, nearly half had them that last a year or longer, according to Health Canada. This can significantly disrupt the lives of those affected.

Long COVID can also be hard to identify. Those affected can show symptoms even if they weren’t formally tested and diagnosed with COVID-19 in the first place. Long COVID can also develop in patients who only had mild to moderate symptoms during their initial infection.

Dr. Jennifer Hulme, a physician in the Emergency Department (ED) at University Health Network (UHN) has seen this play out in many of her patients. 

She says many patients have trouble making the connection between their symptoms and their initial infections. 

“They might not even know they had COVID—they just know they had a virus and that they never got better,” she says. “Or, things crop up weeks to months later—and I think that’s really confusing,” she adds.

“…what matters most is validating and accommodating those facing the condition”

Hulme doesn’t just treat those with COVID-19 and long COVID—she also experienced it herself.

Her life was completely upended by the condition after she caught it from her kindergarten-aged son in April 2022. She went through months of seemingly-endless symptoms. While her initial infection was moderate, her health took a sharp turn for the worse nearly two weeks after she tested positive—around the time she should have been fully recovered.

Though she’d worked with hundreds of COVID-19 patients and knew anyone who caught the virus had a chance of developing a post-viral illness, she didn’t think it’d happen to her.

Her symptoms—including partial hearing loss, pulsatile tinnitus, fatigue, vertigo, brain fog, palpitations and memory loss—forced her to take nearly a year off work. During this time, she became increasingly interested in the illness and its cases.

Hulme admits that long COVID—and the lack of knowledge around it—worries her a lot. She stresses that there is an urgent need to find treatments for the condition and to mitigate the spread of COVID-19 as a means to prevent it. She also says the misconception that COVID-19 is only as severe as influenza or the common cold is still very prevalent. 

Hulme has dedicated much of her time to organizations which research long COVID, she’s now an expert in long COVID treatment. She helped write the Canadian Guidelines for Post COVID-19 Condition. This October, Hulme will be attending the third annual Canadian Symposium on long COVID in St. Johns, Nfld. The symposium’s goal is to bring together medical professionals, researchers and those who’ve lived with long COVID to discuss the latest on the condition.

Hulme also says as a medical professional, she’s been lucky to have access to treatments that likely would not have been available to her otherwise.

She has spent more than 40 sessions in a hyperbaric chamber, a pressurized enclosure which submerges the patient in 100 per cent oxygen, raising the blood oxygen level as a way to promote tissue healing and fight infection. She says this brought back hearing in her deaf ear. Another treatment she’s tried is ganglion blocks—injections of a local anesthetic in the neck to block groups of nerves as a means to diagnose or treat pain.

“My sense is that if I had not done those things, I would not be here—I definitely wouldn’t be working,” she says.

Hulme says that while these treatments worked for her, there isn’t a “magic bullet” that works for all long COVID patients.

She says, a lot of the time, what matters most is validating and accommodating those facing the condition—especially those whose lives are more likely to be upended by it, like students.

For students—including those at TMU—long COVID can make the already-stressful university life much harder.

Sometime between late 2021 and early 2022, now-fourth-year journalism student Emerson Williams catches COVID-19 for the first time. Her symptoms are intense.

“I was just like, insanely sick, I couldn’t get up, I was throwing up,” she says.

She recovers from the infection and her symptoms subside but they come back even worse when she catches COVID-19 a second, then third time. It’s after the second infection that she realizes her symptoms aren’t going away. During the third infection, Williams has muscle weakness in her legs and can’t walk for several days. Since then, she’s had ongoing symptoms that disappear and reappear frequently.

In fall 2022, she moved from her hometown of Elmira, Ont. to Toronto to attend TMU. However, she says her condition has held her back from experiencing university-life to the fullest—both academically and socially.

On more than once occasion she had to be carried out of her Pitman Hall dorm on a stretcher by paramedics due to her illness.

Williams also says she feels faculty can do more to support students with chronic illnesses like long COVID. 

According to Williams, her friends have been the biggest support during her illness. She recalls one friend, who is a nurse, helping her find new positions to comfortably sleep. Another time, when Williams was studying, a friend helped her through a period when she was coughing up mucus which had accumulated in her lungs. She says friends helped her pick up her prescriptions and supported her in small ways like sitting with her for hours when she felt too weak to move.

Binder is now in her second year of the public health program at TMU—a program she chose to enroll in because of a desire to learn more about disease prevention and mitigation. Before coming to TMU, she studied at the University of Ottawa for environmental studies but dropped out due to a lack of hybrid and online-learning options.

“I didn’t feel safe going to campus at that time,” she says.

The worst of her long COVID symptoms subsided after about two years but her journey to recovery was long and tumultuous.

After giving up on her family doctor, she turned to two separate clinics specializing in long COVID. She says neither of these helped her in a significant way. Binder’s appointments happened over video calls. She says one of the clinics insisted improving her exercise would improve her condition. Binder disagreed, believing what she needed most was rest. 

The National Library of Medicine says that in some cases, physical exercise has “decreased [the] duration and intensity” of long COVID in most patients affected by it. However, UCLA Health says recent studies show “strenuous exercise often leads to a flare of long COVID symptoms.” The researchers behind the studies found that although oxygen gained from exercise was “successfully transferred from the lungs and into the bloodstream,” the tissues inside the patients’ bodies are “unable to access and use it.” This is caused by abnormal behavior in the Mitochondria—which uses oxygen to generate what the muscles need for energy.

Hulme says what’s needed for most long COVID patients is rest.

“You need to rest and pace,” she says. “And the only way you can get out of this cycle of boom or bust, is to rest.”

In late 2024, Binder hears that students at the University of Toronto (U of T) are starting a ‘Mask Bloc’—a collective set out to “re-normalize COVID-safer practices at the university,” according to their Instagram. Members of the new group invite students from other post-secondary schools—including OCAD University and TMU—to discuss what the organization will look like. Binder attends the meeting and finds the work they’re doing to be incredibly inspiring, so much so that she and another student decide to bring the idea to TMU.

After suffering from long COVID for such a long time, she feels this is a chance to educate people and protect others from the illness.

In January of this year, they founded Mask Bloc TMU, an “autonomous disability justice collective” with similar goals as its U of T counterpart. They advocate for clean air on campus and provide COVID-prevention resources to students, such as free N95 masks and rapid test kits.

Today, Binder and the other members of Mask Bloc TMU spend a lot of time managing the group—tabling on campus and sharing with students the need to mask and test for COVID-19 regularly as a means to protect each other.

“She feels this is a chance to educate people and protect others from the illness”

“I think a lot of people really don’t understand the risks and the stakes and there’s a lot of misinformation out there,” she says. “So it’s hard to convince people to mask when they’re unaware of why you should be masking and the consequences if you don’t.”

Binder says one of Mask Bloc TMU’s biggest pursuits is working to ensure the air quality on campus is up to standard. 

In a TorontoMet Today article from fall 2021, the university said one of their steps to “ensure adequate ventilation in indoor spaces” is to install MERV 13 filters—air filters made for labs, hospitals and data centres that are meant to keep air clean. They also supplied classrooms with air purifiers, which are to be used to enhance the air quality where necessary. Binder, however, says since their introduction, she’s noticed that many of the air purifiers are either broken, turned off, or professors don’t use them. 

According to the Government of Canada, Canadians spend approximately 90 per cent of their time indoors. Because of this, indoor air quality can seriously affect health. The U.S. Environmental Protection Agency says the COVID-19 virus spreads “via airborne particles and droplets.” Indoors, especially in small rooms, the airborne particles and droplets can accumulate. This enables those within a room to have contact with the virus even if the infected person has left the room.

Binder says Mask Bloc TMU is in the early stages of their mission. Since their founding, the members of the collective are doing their best to keep their mask stations stocked—their main location is on the second floor of the Student Campus Centre—and spread awareness of the urgency of COVID-19 prevention.

Mask Bloc TMU has yet to receive student group status—though they are working on it. This means they don’t receive funding from the university. Instead, they are supplied with resources from community organizations like Mask Bloc Toronto and Canadian charity Donate A Mask.

“…when public health doesn’t protect us, we are able to protect each other”

Binder says Mask Bloc TMU has been met with a lot of support from students and community members alike. She says people are “very curious” when approaching them for information at tablings. She adds that the collective has also received support from professors at the university—some from the School of Disability Studies include Mask Bloc TMU as a resource in syllabuses.

Binder says the support from the community and other organizations gives her hope.

“I think [this is] a really good show of solidarity and they’re kind of proof that when the government doesn’t protect us, when public health doesn’t protect us, we are able to protect each other,” she says.

“I think it’s a great testament to how deeply people care about each other.”

During her long road to recovery, Binder turned to painting abstract acrylic art as a means to connect with her community. To Binder, art was a way to “express the pain and frustration and grief” she was feeling during this time.

Binder says she wanted to preserve the memory and emotion of the COVID-19 pandemic through her works. One of her favourite art pieces is Unfinished Painting by Keith Haring. Made during the AIDS epidemic, the painting represents the loss of life to the disease, including the artist’s own.

One of Binder’s paintings is titled Tests—showcasing 61 used test devices she accumulated over time. The piece features two parts, one of which holds 60 negative tests and one positive displayed on a canvas painted blue. The other part is a smaller canvas, painted red, with a single positive test for COVID-19. Binder’s artist statement reads “even if you test negative 59 times, all it takes is one positive to turn your life upside-down.”