Long COVID patients in N.L. say they're tired of suffering in the dark

Ever since Dara Barrett of St. John's contracted COVID-19 in early February 2022, she says she's been suffering from a plethora of long COVID symptoms, including exhaustion and joint pain.

The mother of three says hersymptoms make it difficult to do things like type, walk and talk on the phone. She hasn't been able to work since June, she says, and was recently approved for long-term disability benefits.

"I remember crying as I tried to bend my leg to get into the car, because it just hurt so much and was so stiff," Barrett told CBC Newsover Facebook messenger.

"It's hard to explain the exhaustion that comes with this disorder."

Long COVID, also known as post-COVID condition, is a term thatdescribes a condition in which a cluster of symptoms persist long after an initial infection of COVID-19. People with post-COVID-19 condition can suffer from a wide range of symptoms, which can vary from person to person.

Although many are now familiar with the term long COVID, "long-haulers" as people with the condition are called like Barrett say the condition is often misunderstood and difficult to treat.

Being diagnosed with long COVIDisa "diagnosis of exclusion," said Dr. Kieran Quinn, a Toronto clinician who treats people with long COVID. Essentially, doctors can complete diagnostic tests to determine if an individual suffers from any other illnesses or virusesbased on the symptoms they have;if all other viruses are ruled out, a diagnosis of long COVID can be made.

However, because there's no internationally accepted diagnostic definition of long COVID, said Quinn, it can be challenging to track, diagnose and treat the condition.

"Long COVID is a new condition, and we're still learning about it every single day," said Quinn, who is also an associate professor in the University of Toronto's department of medicine.

"We need to educate ourselves as health-care providers to listen and validate our patient's feelings when it comes to this difficult condition to diagnose."

Gaslighting and stigma

Corner Brook teacher Stacey Alexander says she's been suffering from long COVID for more than two years.

She says she used to love going for runs, but because of ongoingsymptoms, includingmuscle tremors and nervous system dysfunction, she says it's sometimes challenging to go on a short walk.

Alexander says she was diagnosed with long COVID in 2021aftera year of what she said was continuous "gaslighting" by health-care professionals who told hershe didn't have long COVID, and that her symptoms may be from stress, anxiety or early menopause.

It was only after months of research and conversations with numerous health-care professionals and a visit to an endocrinologist in Ontario that she wasdiagnosed with long COVID.

"It feels extremely isolating," said Alexander, who says she doesn't visit indoor public places like grocery stores or restaurants, because catching a viruscould trigger a flare-up of her symptoms.

"I'mnot just OK with the fact that I was a healthy, fit, early-30s individual [and now]it seems like almost every body function had an issue."

Quinn says Alexander's experiences with misdiagnosesis a common reality for many COVID long-haulers, because the condition is still not fully understood.

"It's unfortunately a sad story and one that I hear too often in the patients that I look after," he said.

Katie Walker, who lives in Pouch Cove with her husband, says she's one of the lucky ones.

Walker, who contracted COVID-19 in March 2022, says she suffered long COVID symptoms like brain fog and shortness of breath for months. While most of her symptoms have subsided, she says her heart rate increases much more than it used to during strenuous physical activity.

Walker says she's fortunate to have a family doctor in the province who diagnosed her with long COVIDand who helped treat her symptoms. But she remembers how frightening it was to not fully understand what her body was going through.

"It's scary 'cause you don't know when your life is going to be able to go back to normal," she said.

More information is needed

Although many like Walker have been diagnosed with long COVID, Quinn says the diagnoses are often not tracked becausethe condition's diagnostic criteria continueto evolve.

In a statement to CBC News, Eastern Health said long COVID is not reportable to the government, and that because there are no standard diagnostic criteria for the condition, it remains unclear how common it is.

The health authority also says there is no specific physician designated to care for long COVID in the province, and that individuals with prolonged COVID symptoms are encouraged to "follow up with a primary health-care provider."

The provincial government's Department of Health and Community Service also said in a statement to CBC News that it does not track cases of long COVID.

"The focus of Public Health remains on detection, prevention and responding to infectious diseases and community health," said the statement.

Quinn said it's "critically important" to track any disease or condition to understand how it evolves and what health resources are needed to support people with the condition but it's difficult to do when it comes to long COVID.

"The issue with surveillance or tracking is that you need to have a good case definition to be able to accurately identify and track that," he said. "I think that's where the challenge is right now at the system level, is that without a clear case definition that everybody can agree upon, your surveillance efforts are very challenging."

Although there are still many unknowns, Alexander says one of the main reasons COVID long-haulers feel they're suffering in the dark is because the government hasn't made data, research and information about long COVID publicly available.

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She said many people join Facebook groups, where they are able to share their experiences and research with others. Because many in the province don't have a family doctor, she said, Facebook groups can also help people identify and understand their symptoms.

But the onus shouldn't be on those suffering to diagnose and treat themselves, she said.

"It's been a struggle," she said. "The number of hoops that I had to try to jump through, you wouldn't want to wish on anybody."

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