Tracey Thompson's home is filled with notes. Post-it notes and sheets of paper are pinned to her fridge and bookshelves, reminding her of doctor’s appointments, errands, and tasks. The 57-year-old says her brain can no longer keep track of these details. Five years after the COVID-19 pandemic began, Thompson has become a prominent voice for those suffering from long COVID, a condition that has affected thousands of Canadians.

“I understand why more folks aren’t willing to be interviewed because they can garner a lot of negative attention,” Thompson said. “While telling my story can feel repetitive and is often stressful, there are still folks who don’t know what’s wrong with them or what the risks are, so I feel obligated to keep talking.”

Thompson's experience is not unique. Long COVID, also known as Post COVID-19 Condition (PCC), affects many individuals who continue to experience symptoms three months after their initial COVID-19 infection. According to the World Health Organization, these symptoms can last for at least two months without any other explanation. Common symptoms include fatigue, cognitive issues like brain fog, and shortness of breath. The U.S. Centers for Disease Control and Prevention notes that symptoms can appear, persist, disappear, or reappear after recovery, varying in severity.

As of June 2023, approximately 19 percent of Canadian adults who contracted COVID-19 developed PCC, translating to around 3.5 million people. At that time, 2.1 million Canadians were still living with long COVID. Many individuals, like Thompson, feel increasingly abandoned as funding for COVID-related initiatives in Canada diminishes.

Susie Goulding, a 57-year-old resident of Cambridge, contracted COVID-19 early in the pandemic. She experienced severe brain fog, which left her unable to remember her son’s name. Despite seeking help from medical professionals, Goulding often felt dismissed. “I had been to a neurologist, and she just wrote me off and gaslit me,” Goulding said. “It was really scary, to not know what is going on and not have people believe you that something was going on.”

This experience is common among long COVID patients. About two-thirds of Canadian adults who sought healthcare for long COVID reported not receiving adequate treatment or support. Robby Nieuwlaat, an associate professor at McMaster University, noted that while more healthcare professionals are beginning to understand long COVID, many still do not.

“People with suspected or confirmed long COVID are still experiencing a lack of understanding and empathy whereby their symptoms are not taken seriously and may be dismissed as a mental health condition,” Nieuwlaat said.

In response to the lack of medical support, Goulding created a Facebook group for individuals experiencing similar challenges. Her COVID Long-Haulers Support Group now has over 20,000 members. “It was really wonderful to be able to be believed by other people who were experiencing the same crazy symptoms and to come together to advocate for ourselves,” Goulding said.

The financial impact of long COVID is significant. A study published in Nature estimated that long COVID costs the global economy $1 trillion annually. In 2023, around 600,000 adults in Canada missed work or school due to long COVID symptoms, averaging 24 missed days. Additionally, about 100,000 adults were unable to return to work or school because of their symptoms.

Despite these challenges, funding and support for long COVID patients in Canada remain limited. Dr. Angela Cheung, a clinician-researcher at Toronto’s University Health Network, noted that Ontario lacks a coordinated approach to long COVID care. “While some providers are responding to the immediate demand for post-COVID care, these offerings are insufficient, fragmented, and unsustainable without dedicated funding,” Cheung said.

Many patients requiring rehabilitation services, such as physiotherapy or speech therapy, must pay out-of-pocket, which can be unmanageable for those unable to work.

Thompson, a former chef, first contracted COVID-19 in March 2020, expecting a quick recovery. Instead, her symptoms worsened, leaving her bedridden. At her lowest point, she struggled to care for herself and considered medical assistance in dying (MAiD). “I was so ill. I was looking at homelessness. So I thought my choices are: end my life at home or die in an alley somewhere,” she said.

After going through the application process for MAiD, Thompson ultimately chose to continue living. “I’m still not incredibly hopeful, but I am a lot more hopeful than I was at the time,” she said.

Despite finding a supportive medical team, Thompson still faces challenges. While prescribed medications help manage her symptoms, they do not address the underlying causes. More than five years after her initial infection, she remains mostly confined to her bed and has been relying on crowdfunding to pay her bills.

Dr. Cheung emphasized that there is no cure for long COVID. The best approach for many patients is to learn to manage their symptoms. “Resting and pacing is a big piece of it,” she said.

Nieuwlaat’s group has developed guidelines for managing PCC, but many recommendations require funding to implement. “COVID is still around, people are still dying from it, but all the support has been taken away,” Goulding said. “The pandemic still isn’t over, but everybody’s acting like it is.”