Doubted and dismissed: COVID-19 'long-haulers' share their experiences

Stephanie had been feeling unwell for a few days last March when she went to bed with a fever, feeling short of breath. 

In the middle of the night, her heart started pounding — fast. And then her whole body started to shake.

"That scared the crap out of me," said Stephanie, a resident of Coquitlam, B.C., whose name CBC News has agreed to withhold because of the stigma she says she continues to face as a COVID-19 sufferer. 

The episode was the first of many times the 41-year-old has feared for her life in the past few months as COVID-19 ravaged her body, leaving her to endure a myriad debilitating symptoms that have ranged from exhaustion so severe she couldn't even watch TV to hair loss and tinnitus.

Stephanie was an active mother of two young children who enjoyed working up a sweat at spin class, hiking and walking. Now, there are days when she can barely shuffle out the door.

"You think you're getting better and then all of a sudden you just crash," she said.  

Treated like social pariahs

Stephanie is one of thousands of Canadians who identify as COVID-19 "long-haulers" — people who have experienced an often bizarre array of symptoms for months.  

Like many long-haulers, Stephanie says she feels dismissed by medical professionals who have left her feeling crazy instead of cared for, telling her what she was experiencing was all in her head.

A lot of long-haulers say they also feel treated like social pariahs by friends and acquaintances who don't believe them or don't think the coronavirus is that severe.

Many long-haulers say their situation is made more maddening because they have never tested positive for the disease.

COVID-19 tests weren't widely available at the beginning of the pandemic, and a test administered weeks or months later can come back as negative even when someone is still symptomatic because they're no longer contagious.

The first time Stephanie went to hospital, she was told to go home because her oxygen levels were fine. She says she was refused a test for the virus. She did get a test when she returned a month later, but it came up negative.

Although a test has not confirmed COVID-19, practitioners said her symptoms are likely a result of the novel coronavirus.

'Harder to understand'

The B.C. Ministry of Health says it's continuing to adapt its response and treatment as health officials in the province — and the world at large — learn more about the virus.

"Working with our research partners in B.C. is a crucial way to understand the experience of these people, learn from it and use that to support others," the ministry said. 

A global online survey of almost four million people suggests that five per cent of people who contracted COVID-19 reported persistent symptoms one month later.

According to a study recently accepted for publication in the European Respiratory Journal, 75 per cent of people admitted to hospital in Vancouver for COVID-19 continue to experience symptoms more than three months after the onset of symptoms. 

Christopher Carlsten, professor of medicine at the University of British Columbia, was one of authors of the study. Carlsten says there is still much the medical community needs to learn about long-haulers — especially those who were never admitted to hospital.

"Their symptoms and their presentation might be less dramatic, but that also makes it harder to understand and in a way more frustrating for them," he said.

Carlsten says he and his colleagues have never worked so fast to try and develop guidelines for family physicians to better recognize the complex ways COVID-19 can manifest itself. 

'I honestly felt like I was going to die'

Susie Goulding runs the COVID Long Haulers Support Group Canada on Facebook, where nearly 4,000 people share symptoms, medical studies and media stories. 

Goulding says the way health officials count "active" and "recovered" COVID-19 cases leads people to misunderstand the severity of the coronavirus.

"'Recovered' just means that you got a negative test," she said. "It doesn't mean that you're not living with those symptoms, doesn't mean you're back to your regular self."

Vancouverite Jonah McGarva, 41, joined Goulding's Facebook group as a source of support and information after months of up to 80 symptoms at a time. 

"It just it felt like everything was shutting down in my body," McGarva said. "I honestly felt like I was going to die some nights."

At first McGarva's doctor told him his symptoms were likely because of allergies, which he's never been diagnosed with. The doctor then prescribed him medication for anxiety, and told him his symptoms were caused by stress. 

The solutions McGarva is looking for don't include a miracle cure. Instead, they involve a more basic need: less doubt, and more compassion. 

"We can't be spending our time fighting this battle with other people to get heard when we should be fighting for our own health," he said.

McGarva says he's been off work for months, and now he's worried about losing his job as an audio technician. He manages his symptoms with about five different medications, and adjustments to his diet.

He's seeking a second opinion from another doctor who he hopes will be more understanding.