Denied COVID-19 tests four months ago, they’re still sick
Dozens have experienced symptoms but weren’t diagnosed with the virus
It started with an excruciating sore throat and 10 days of headaches. Then, a dry cough — a classic sign of COVID-19 — crept in as well. WhiteFeather Hunter has been battling with persistent symptoms consistent with the novel coronavirus for months but was not initially tested for the virus when she fell ill in March.
She’s not alone. Alongside 51 other Canadians, Hunter has signed an open letter to Dr. Theresa Tam and each provincial chief medical officer calling for support for those struggling with persistent COVID-19 symptoms.
The group, who connected through an online support network for those who contracted the virus, are asking for the greater public awareness about the possibility of prolonged symptoms.
Without broad access to testing in the early days of the pandemic, people that signed onto the open letter say they were presumed positive or had close contact with a confirmed case, but fell into a grey area where they could not access a test. Due to the persistent symptoms, they are unsure if they remain infectious and cannot pass screening questionnaires that could allow them to access certain medical services.
Additionally, the pervasiveness of false negative tests could mean that those struggling were incorrectly diagnosed. A study published in early May has shown that testing can produce false negatives, particularly in the early days of illness. After 21 days from symptom onset, the chances of a false negative can be as high as 66 per cent.
The Star has spoken to three people who signed the letter that have all experienced symptoms consistent with the illness but were never diagnosed with the virus.
Hunter, who was working on her PhD in Australia at the time she first fell ill, had no fever and no travel history, though her partner had recently returned from a trip abroad.
“We went to the COVID clinic together and they wouldn’t test us,” she explained to the Star by phone Tuesday. “And their reason for not testing me was because I hadn’t travelled, even though my partner had travelled. And they wouldn’t test him because he didn’t have a fever.”
Over the course of several weeks, her cough seemed to abate. The couple returned to Canada in early April. “Within … three or four days, all of my symptoms came back,” Hunter said. “I started getting really severe chest pain and pressure on my chest, feeling like someone was actually standing on my chest.”
The pain was so intense that it felt like a heart attack, prompting her to take an ambulance to the hospital. Though she was denied a test while in Australia, Hunter was finally able to be tested for the virus in mid-April, afull month after her symptoms originally appeared. “A few days later, the test came back negative,” she said.
“I was perfectly healthy before this. I was cycling 200 kilometres a week when I was in Australia. I was kind of at the peak of my health,” Hunter said. “I’ve never had health issues like this. I’ve never been a sick person.”
Elisa Harvey-LaPlante became ill at the same time the Ontario began to shutter for the lockdown. She has been riding out residual symptoms that have never cleared and wasn’t tested until the end of May. That test came back negative.
“I still definitely also have like a small coughing fit every day. I definitely still have phlegm in my lungs. That is not great. And I don’t know what that means long-term.”
She said she wants to see broad health care support offered to people that have experienced persistent symptoms but do not have a positive test.
Emily Shepard became sick toward the end of March. It’s not clear where she became infected, and initially she thought it was the remnants of a cold. With no sense of smell and a pressure in her chest, Shepard began to suspect that she had COVID-19.
She was not tested for the virus, following the advice of doctors to self-monitor and isolate at home. Shepard said that her symptoms match those of people who were able to test positive for COVID-19.
Weeks on, Shepard continues to have fatigue, dizziness and shortness of breath due to her illness. Several times, she has thought her symptoms were over only for them to return.
“I would get better and think, ‘Yeah, I’m on the mend,’ and then I would go back to being worse,” Shepard said. “I stopped even updating on Facebook, because I just thought, I don’t want to say that I’m getting better when clearly I don’t know what’s going on here.”
Shepard was healthy before she got sick. “At this point in the summer, I would love to be out on my bike on the lakeshore or in the middle of the woods,” she said. “My symptoms have stopped me from doing that.”
All three hope that coming forward with their stories and the open letter can prompt government research into the longterm repercussions of COVID-19 and an updated public health policy that reflects the possibility of prolonged illness.
“If the government does listen to us and does do something about the public health policies or other systems to support people in an ongoing way, that will be amazing,” Shepard said. “But if they don’t, the least I hope we can do with our letter is to let … people know, if they don’t already, that they are not alone.”