When Nathanael Rafinejad first moved to Montreal, they loved the city’s nightlife and worked as a bartender and a waiter while studying business management.
But after catching COVID-19 in January 2022, the 29-year-old is now mostly confined to their apartment.
“I feel completely cut off from the world most of the time,” said Rafinejad. “I can’t walk anymore. I cannot stand for more than a few seconds at a time. I can’t sit for a long time. I have to use a wheelchair every day.”
Rafinejad is one of thousands of Quebecers with long COVID, a chronic condition that can prevent once healthy, active people from functioning properly.
Rafinejad is worried they’ll never get better.
When they first got sick, it initially felt like the flu. But by the fourth day, the fatigue was so intense, Rafinejad said they could barely move or speak.
“I was taken to the hospital because they suspected a stroke,” said Rafinejad.
In the weeks that followed, they developed gastrointestinal problems as well as tachycardia — a racing heart rate – that could last for hours, even when they were sitting or lying down.
When they’d stand up, Rafinejad said they’d often faint and sometimes experience convulsions.
Medication has helped manage their blood pressure and heart issues, but the fatigue, lack of stamina and weakness never left. Rafinejad said they cannot do many of the activities they once loved, like playing the cello.
At one point, Rafinejad was stuck in their apartment for four months because they couldn’t get up and down the stairs. They recently moved to an apartment with four steps, but even that can be hard to manage.
“I’ve been bedridden so often, I’ve lost a lot of muscle,” said Rafinejad, who largely relies on their partner for help and is being assessed for home care.
“I’ve lost a lot of independence because I can’t really take the bus. I can’t really take the Metro. So I have to do everything with adapted transport.”
Improvement seen around 2-year mark
No one knows for sure how many Canadians developed long COVID, but according to a 2023 Statistics Canada report, about one in nine adults have experienced long-term symptoms from COVID-19.
That amounts to 3.5 million Canadians.
Almost 80 per cent of those people reported symptoms that lasted six months or more.
Dozens of symptoms are associated with long COVID, but extreme fatigue, brain fog, memory and concentration issues, body pain, shortness of breath and an elevated heart rate are common, said Dr. Emilia Liana Falcone, an infectious disease specialist and director of the post-COVID research clinic at the Montreal Clinical Research Institute (IRCM).
Any exertion — be it mental, physical or psychological – can incapacitate patients for hours, days or even weeks, she said.
Falcone said some of the patients her clinic has evaluated have had to change jobs, reduce their work hours or quit their job altogether to cope. Others are on prolonged sick leaves or have taken early retirement.
Although there are some people who get better in the first three to six months, Falcone said a good proportion don’t improve until around the two-year mark.
Falcone said some studies suggest that people who suffer from long COVID could have some underlying immune dysregulation.
But further investigation is needed to determine if these disturbances were pre-existing and may have made them more susceptible to developing long COVID.
“We have to go back into the biobanks of samples from individuals that were followed before the pandemic and then see of those individuals who went on to get long COVID, how certain biomarkers in their blood or other tissue would have evolved over time,” said Falcone.
In addition to the IRCM, there are 14 long COVID clinics in Quebec that focus on reducing the frequency and intensity of symptoms.
Patients are first screened for other conditions such as diabetes, heart disease, low iron or thyroid problems, which can be treated, said Falcone.
Symptoms like extreme fatigue are trickier to manage, harder to predict and may require lifestyle changes.
As of December 2024, more than 2,300 people were being actively followed in the clinic network, with another 1,700 on a waiting list, said Marie-Christine Patry, a spokesperson for Quebec’s Health Ministry.
The wait time varies by clinic, but on average, it can take nearly six months to be seen.
“We cannot let go of these initiatives,” said Falcone. “They have to be maintained, if not augmented.”
She expects there will soon be more pharmacological interventions.
Low-dose naltrexone, which reduces the symptoms of certain autoimmune diseases, is being studied. Antihistamines are also being looked at because of the overlap between long COVID and other conditions such as mast cell activation syndrome (MCAS).
‘A lot of people act like I am disposable’
It took about two years for Oana Silaghi-Bedikyan to recover from long COVID.
“It was very humbling,” said Silaghi-Bedikyan, 47, who lives in Baie-D’Urfé, a suburb of Montreal. “It’s changed my life.”
The mother of two caught COVID-19 at the beginning of the pandemic.
Simple tasks like making breakfast, taking her daughters to the park or grocery shopping wiped her out. Acid reflux made it difficult to eat. For months, she’d wake up every night with a racing heart.
“I was scared to go to bed because it was so scary to wake up in that way,” said Silaghi-Bedikyan.
Within three weeks, she lost 25 pounds.
“None of my clothes fit me anymore and I couldn’t walk,” said Silaghi-Bedikyan.
It took about a year before she could walk around the block, and she still struggles with a lack of stamina.
Although she’s followed by a cardiologist and gets regular ultrasounds to monitor fluid that developed around her heart during her COVID-19 infection, she does not have a family doctor, which is a source of frustration.
Silaghi-Bedikyanlike would like to see a public inquiry into Quebec’s COVID-19 strategy.
“Was it the best thing to do and what do we do going forward?” said Silaghi-Bedikyan, who thinks the province needs to focus on hiring doctors and other health-care professionals.
“You have God knows how many people – because we still can’t track it – who are suffering, and not only are they suffering, they can’t get care because they don’t have doctors,” said Silaghi-Bedikyan.
Rafinejad also questions some of the decisions that were made by the province.
Shortly before Rafinejad got sick, Quebec broke the record for the highest daily provincial COVID-19 case count in Canada. It also loosened COVID-19 restrictions during the 2021-22 holiday season.
They said they thought they were doing everything right and kept up with their vaccinations. But they believe they were infected in the waiting room when they went to get vaccinated.
The Health Ministry said several investigations have already been carried out that looked at the province’s pandemic response.
When it comes to the difficulty some people have had in accessing medical care, the ministry said it has made “every effort to respond adequately to the pandemic crisis, including announcing numerous measures to attract, train and retain personnel,” said Marie-Claude Lacasse, a spokesperson for the ministry.
Rafinejad finds it distressing that there is so little discussion now around prevention.
“I’m terrified of having another infection and potentially losing even more function,” they said.
Rafinejad is studying to be a social worker and would very much like to be part of the world again. But they think that will take a shift in mentality.
“A lot of people act as if I’m disposable, like I’m a necessary sacrifice for life to go back to normal,” they said.
