Jan Willis is used to feeling on top of the world.
“I’m 66, but three years ago I hiked up Mt. Everest,” said Willis.
That was before March 2020, when a headache hit. That headache turned into a full year of COVID-19 symptoms.
“It’s been a struggle every day since,” said Willis.
“I feel like I’m on the mend now, but it’s been a year and I’m still experiencing symptoms.”
Willis is a COVID “long-hauler”, experiencing extreme fatigue, heart palpitations, and headaches, troubles regulating her body heat for a year since contracting COVID-19.
And she says her case, isn’t even close to the worst.
“I’m one of the lucky ones really, I haven’t had to deal with as much as many have. And because they don’t have energy, it’s hard for them to have a voice,” said Willis.
So she decided to speak for the silent 10 per cent.
In a recent report in the Journal of the American Medical Association, researchers estimate about 10 per cent of COVID-19 patients will become long-haulers.
Meaning worldwide, there are already, millions.
But despite those staggering numbers, there’s no clear diagnosis, no standard care, and no national guidelines for how these patients should be treated.
Instead, people like Willis search out answers, online.
“I could go on there and say ‘I’m experiencing this and it’s just such a bizarre thing’, and a whole bunch of other people were experiencing the same thing,” said Willis, speaking of the Facebook group “COVID Long-Haulers Support Group of Canada”, where she connected with thousands of other long-haulers like herself.
“So, you felt sane,” said Willis,
However, special clinics across Canada, including three on the lower mainland, devoted to monitoring long-term COVID-19 patients, are offering more insight.
“Where there is a ton of variability in the symptoms they’re experiencing, there’s a lot of consistency in the post-exertional post-stress flare in their symptoms,” said Dr. Jesse Greiner, the medical director of the COVID recovery clinic at St. Paul’s Hospital in Vancouver.
Doctors there are finding while symptoms vary for each patient, at the root of their flare-up of symptoms is always stress. And most patients able to lower their stress levels, have actually seen their symptoms decrease.
“Patients unable to do that, who are unable to actually reduce the amount of physical, cognitive, or emotional stress in their lives have a lot harder time,” said Dr. Greiner.
“They can experience these constant relapses and they get stuck in these repetitive flares of their symptoms.”
But Willis says, no matter how well a COVID long-hauler is able to maintain their symptoms, the financial strain is overwhelming.
“There are people who have had to sell their homes because they no longer have an income,” said Willis.
“There are people that are unable to work, who can’t even apply properly for the government funding CRB because that requires that they seek employment. If you can barely get out of bed, you certainly cannot seek employment.”
She says it’s time, not only for more medical help for covid long-haulers but financial help as well.
“A year has gone by, this needs to be addressed,” said Willis.
You can sign her petition addressed to MP Elizabeth May here.