Before the pandemic, Adriana Patino would spend hours in the pool training as a competitive swimmer. Now, the 37-year-old can barely walk to the front door of her apartment.
Patino has long COVID-19, a condition with more than a hundred symptom that, for some, can be devastating.
In Patino’s case, she suffers from extreme fatigue, shortness of breath, heart pain, neurological issues and blurred vision, among other symptoms. It’s left her unable to work and unable to leave her apartment, except for her twice-weekly trip to the front sidewalk for five minutes.
“It’s been 20 months now of never-ending hell,” says Patino.
Patino was a patient at St Paul’s post-COVID recovery clinic in Vancouver, but after 18 months of treatment, she was told she could no longer be treated.
It’s just one example of the way long-haulers — the term used to describe people suffering from long COVID — feel they’ve been abandoned by the government and health authorities to suffer in silence.
“People shouldn’t be suffering like this. We shouldn’t have to see our own lives completely destroyed in front of our eyes and not having anyone to help us,” said Patino, through tears.
It’s unclear exactly how many Canadians suffer from long COVID, but early pandemic data from the Public Health Agency of Canada suggests that long COVID symptoms have been found in up to 30 to 40 per cent of individuals who were not hospitalized for their initial COVID-19 infection.
In B.C., the Post-Covid Interdisciplinary Clinical Care Network [PCICCN] operates five clinics to treat long-haulers.
Almost 3,000 patients have sought treatment at the clinics, which focus on long COVID research and patient care by connecting long-haulers with experts including physiotherapists, occupational therapists and specialized physicians. The Ministry of Health says more than 6,000 patients in B.C. have been referred to the clinics.
Michelle Malbeuf, project manager for the clinics, says their work is aimed at equipping patients with the tools to live with long COVID, while also working toward recovery.
“Recovery looks different for everyone,” said Malbeuf.
“We want people to make a full recovery but even just improving those symptoms and improving that quality of life is a win.”
But Patino says her time at the clinic was too short and she wasn’t able to learn those skills and strategies. She says her 18 months of treatment involved a handful of phone calls, a pair of blood tests and an MRI scan.
Before she knew it, she says she was told there was nothing else the clinic could do for her.
“There’s a sense of abandonment by the people who should be taking care of you and should be helping you,” said Patino, who is the administrator of the long COVID Canada Facebook group, which has more than 3,500 members.
“I’m still quite sick and I’m not getting help from everyone. And I’m not the only one.”
Malbeuf says the 18-month treatment limit is a policy at all five of the network’s clinics.
“The clinicians, as they’ve learned about managing long COVID, they really felt that if at 18 months those strategies and tips aren’t helping a patient with their recovery then there’s likely a better place they can be managed and supported,” she said.
It also comes down to capacity, says Malbeuf, adding that treating patients for sustained periods limits the number of new patients the clinics can treat.
So far, 37 per cent of post-COVID clinic patients have been discharged, according to Malbeuf, either due to improved symptoms or meeting the 18-month limit.
The financial impact of long COVID
Along with the physical symptoms, long COVID can cripple people financially.
Surrey-resident Hannah Lohnes, 24, has been dealing with long COVID symptoms ever since November 2020.
She has remained a post-secondary student throughout her entire illness, in part so she can receive student loans to support her recovery.
“It’s partially necessity at the moment. I do want to learn and be in school. But I physically can’t work a full-time job right now,” said Lohnes.
Her illness has gutted her savings, now she has to rely on help from her family and her loans to make ends meet.Fortunately, through her recovery, she’s now able to work three, minimal part-time jobs like tutoring to earn a little bit of money. But, it often leaves her exhausted in bed for the rest of her day.
It’s a similar experience for Patino. She hasn’t been able to work at her benefits consulting company since her symptoms began. She, too, has blown through her savings and has had to sell many of her belongings.
She barely scrapes by on long-term disability, turning to family and friends for financial assistance.
“It’s been a huge struggle. I have a humongous amount of debt now because I have to take out new credit cards to help cover expenses, especially on my therapies,” she says.
A constant complaint in Patino’s Facebook group is the challenge many Canadians have experienced trying to access long-term disability assistance.
Aside from those who qualify for disability assistance, there is no financial aid available to long-haulers in B.C.
More government support needed: long-haulers
Both women are calling on the government and health authorities to increase support for people suffering from long COVID.
“[It] would be a game changer for a lot of people. Taking that pressure off of them to work would allow them to focus more on that healing,” said Lohnes
They would like to see better education, acknowledgement and awareness around the risks of long COVID.
“It’s not black or white. Not everyone recovers or dies. There’s these numerous shades of in-between where life just sucks,” says Lohnes.
In a statement, the Ministry of Health says it is “supporting and caring for every person who gets COVID-19, including people experiencing longer-term symptoms,” pointing to its network of recovery clinics.
It says officials are examining new treatments and looking at therapies that show promise but admits there is no single treatment for long COVID.