The Longest Road
When chronic illness stops everything —
except the world around you.
Four stories of people advocating for healthcare equity and their quality of life during a pandemic.
The onset of the COVID-19 pandemic in 2020 brought a new chronic disease into circulation: Long COVID.
There have been 1.8 million cases of COVID-19 in Canada as of December 2, 2021. 10 to 20 percent of those people are estimated to have symptoms that linger or worsen after three months.
The enormity of Long COVID's impact on communities and individuals around the world have shaken something loose in the chronic illness community and beyond.
Patients and advocates have been able to reach through the fogged glass of their own illness to connect with the separate but similar experience of other chronic illness patients as they try to navigate a healthcare system that they often say has set them up to fail.
Advocates for invisible, untreatable, underfunded, and under-researched chronic illnesses — like myalgic encephalomyelitis, fibromyalgia, postural tachycardia syndrome, and Lyme disease — describe feeling sidelined by the heavy focus on COVID research and treatment.
Now the world is bracing for the arrival of yet another new COVID variant, Omicron, and chronic illness advocates and patients are left to imagine a world in which they also receive the acknowledgement they want, and the care they need.
Here are some of their stories.
SUE KHAZAIE
Sue Khazaie was formally diagnosed with Myalgic Encephalomyelitis (ME/CFS) in 2016, but says she suspects she first became sick 19 years ago following a post-surgical infection.
ME/CFS is a debilitating and complex multi-system chronic illness with a range of symptoms that severely reduce activity in most patients. It includes cognitive impairments, sensitivity to light and sound, chronic pain, and the worsening of symptoms following even minimal activity.
ME/CFS is highly misunderstood and under-researched chronic illness, but patients have described significant overlaps with Long COVID. Of the 50 percent of those infected with COVID-19 who experience symptoms for longer than three months, 10 per cent will go on to meet the diagnostic criteria for ME/CFS.
Five years ago, Sue suffered a severe “crash” that left her bedridden in near total darkness for almost two years. During that time, the only thing Sue saw most days were the trees outside her window.
“Time gets a new dimension when you're living like that.
You know how we mark time by events? When you don't have events in your life, it just all drifts by in a big fog. And it's an odd thing. I used to lie in my bed and look out the window at the trees.”
Sue says that she doesn’t go into her bedroom much anymore.
Despite a battle with cancer this last year, Sue says she is feeling much better lately. She is mostly housebound but she can tolerate light again and can have visitors. She can even go on trips outside the house about once a week.
"I can remember being at the checkout of a grocery store, and it was probably one of the first times.
I was almost in tears and thinking, ‘Why is there not a marching band?’ It was just such a phenomenal feeling, and everybody else was just getting their groceries."
Sue worked in early childhood development before she retired. She says that the years she spent navigating bureaucratic spaces in government and non-profit work during her career have prepared her somewhat serendipitously for her current work with the ME/FM Society of BC.
“I think there’s some meaning behind why I’m here,” she said.
The relative tsunami of press attention devoted to Long COVID may splash over to benefit the ME/CFS community in the future. But for now, Sue says they haven't seen any payoffs. Non-COVID ME/CFS patients aren’t able to access the handful of Long COVID rehabilitation centres that have emerged across the province. Although Long COVID patients also won’t receive any curative treatments at these centres,
Sue calls them “Cadillac services” compared to what’s available for ME/CFS patients.
The Complex Chronic Diseases Program is the only program available to the 77,000 suspected ME/CFS patients in the province under the provincial healthcare system.
Their wait-list is two to three years long.
Sue’s advocacy is focused on getting ME/CFS patients equitable treatment. She says "things aren’t tolerable the way they are, they need to change.”
When times are hard Sue remembers these two stuffed toys that she was given on her birthday. She calls one “Joy” to remember all of the vitality her life had before ME/CFS, and the other “Hope” for the future she still has.
Personally, Sue feels fortunate this year. The move online has made her life a lot fuller. She’s been able to access museums and concerts from the comfort of her own home and she says that her friends were more inclined to keep in touch when everyone was asked to socially distance. But she has been fearful during the pandemic that her husband, her primary caretaker, would get sick.
“You realize how fragile your world is when you’re so dependent on another person."
She says she believes that “there’s a certain wisdom in hope.”
For now, she says to treat every occasion like a special occasion.
“Don’t wait. Always get out the good china.”
JONAH McGARVA
Jonah McGarva has been an advocate for Long COVID patients since June 2020. After getting sick with COVID-19 in early March of 2020, he has yet to fully recover. “At one point I had over 83 symptoms,” he says.
He still struggles with many symptoms such as extreme fatigue, brain fog, and post-exertional malaise - a worsening of symptoms even after minimal activity. Jonah’s also recently been diagnosed with early onset emphysema - a condition that this previously healthy 42 year old didn’t have prior to COVID.
Despite his numerous health challenges, Jonah spends about thirty hours a week on advocacy - liaising with officials and media, compiling research, and contending with a steady barrage of misinformation on the online support group that he runs, Long COVID Canada. The group currently has more than 2,800 members.
Jonah was let go from his job as an audio engineer for a local news media organization when he became too sick to return to work.
With 200,000 people and counting in Canada currently living with Long COVID, Jonah says that accessing adequate disability income support is going to be one of the next big hurdles.
“A lot of Canadians are being forced to go back to work and work through their symptoms, which is making them sicker and they’re crashing harder.”
The challenges patients with a new and mysterious chronic condition are numerous. For months, Jonah says his symptoms were dismissed by doctors as anxiety.
“Even just dealing with doctor’s can be traumatic if you’ve been disbelieved enough times.”
Coming to terms with his new life has been incredibly challenging. In his darkest moments, Jonah says he’s relied on music to get him through.
“Music saved my life throughout this whole process,” he said.
“I was in a dark space… and not sure what my future held. I needed something to dive into that wasn’t serious.”
Jonah has been collecting records for most of his life, and he says sifting through each of the more than 2,000 records in his closet was a way to revisit happier memories.
“One of the reasons I’ve continued to go down the advocacy route is because it’s not just about me. It’s about the community but it's also about honouring my mom’s memory.”
Jonah’s mother suffered from ME/CFS, fibromyalgia and PTSD from living in residential school.
“My mom was half Native Hawaiian, but was given up for adoption by her biological parents,” Jonah says.
“The B.C. government saw dark skin and sent her to residential school.”
Jonah says he spent most of his childhood taking care of her.
“What I’ve been through with Long COVID is very reminiscent of what she went through in the 90’s - being disbelieved, being told it’s anxiety, and prescribed antidepressants. I think at one point one of her doctors even said it was because she did too much acid in the 60’s.”
Living with Long COVID for nearly two years has been a challenge.
“It makes me feel like a shadow of what I used to be, I can’t even do the dishes without having to take a nap after.”
But Jonah says he feels hopeful.
“I’ve got a good doctor, great friends, an amazing wife - I’ve got a lot of good support now. It really boils down to resolve and acceptance - and I’ve been pacing a lot.”
KATI DEBELIC
In 2009, Kati Debelic was 39 years old and working as a registered nurse when she contracted Epstein-Barr virus from a patient. That diagnosis would later lead to another: ME.
Suddenly Kati’s experience with the healthcare system was flipped.
She was surprised to find that her word meant less on this side of the intake form.
Kati was unprepared for how difficult it would be to get support once she needed it. Between implications that she was faking her symptoms, to prescribing antidepressants when she continued to struggle, Kati said her workplace was “quite obscene.”
"I go on the other side, I become a patient, and I have no care at all."
Kati joined the MEFM Society’s board of directors in 2012.
“I still have a letter on my computer that I sent to the government," she said.
"And I was so well spoken, like, I had more brain power than I do now. So it's actually very hard to advocate when you're sick, because your brain is inflamed, then it's just hard. Just talking for me is a big effort."
Given the lack of research and treatment offered for ME patients, Kati has taken to doing her own but when it comes to getting validation from the government and other formal bodies, it's still a losing game.
“You're not listened to,” she said.
“You always, always get a no. You're always rebuffed. So it's terribly hard to get out of that and to make strides in advocacy. It's disheartening.”
Then the pandemic put ME studies on the back-burner, delaying experiments she was participating in, as researchers raced to understand Long COVID.
“We are still waiting for research and for improvement and for access to competent care,” she said.
“And all the while, in the last 18 months, there's been four clinics for Long COVID patients, lots and lots of research and support. And we still have nothing new for our program.”
Self-advocacy can become a full time job for many patients that can’t access services or treatment options.
“If you've had 30 months wait time, while sick, you're gonna actually self-educate yourself on the internet and everything from other patients. So that's frustrating. And I do not call this healthcare.”
“I really wish that my life mattered. That doctors did the very best that they could.
I'm kind of left to rot somehow, like, I’m basically losing my life.”
Before Kati had ME, she was an avid cyclist. Her tours included stints in Europe, across Canada, and New Zealand — sometimes biking for up to 52 days in one journey. She documented many of her trips in travelogue form.
Her bike now sits on her deck, weathered and unridden.
“All of us who got sick led vibrant lives.
The contrast between healthy and sick is vivid for us, though for people who don't know our old selves, we may look fine.”
The things Kati finds joy and connection through now are a little more static. When she has the energy, she heads to the greenbelt not far from her home where there’s a salmon run and plenty of birds to admire. In the summer she tends to her plots at the community garden.
On days when she needs more rest, her parrot Baby is the focus of her attention. He’ll spend hours preening on her shoulder, or napping against her cheek.
BILL AND ELAINE WHEELER
Elaine Wheeler can recall the exact day in 2009 when she was bitten by something while sitting in her yard. Her and her husband Bill recall the blood running down her leg. Three days later, Elaine went to the emergency room with flu-like symptoms and received her first of many diagnoses: hepatitis.
In 2014, Elaine was tested for Lyme disease in the US.
“I still remember walking out to the car and sitting there in Florida. And I went, ‘Well, looks like I've got Lyme disease."
“I think in a way it was a relief, to know that’s what I had, because nobody could figure out what was wrong.”
Even with the diagnosis, finding support in the medical community proved challenging.
“Lyme is just not acknowledged. It's denied over and over,” said Bill.
Elaine’s mobility is severely impacted by the disease.
“I would love to be able to walk, but I can't,” she said.
“The Lyme has destroyed my joints. I'd be lucky if I could get around the block.”
Similar to the experiences shared by others with chronic illnesses, a particularly good day is often followed by several really difficult ones.
“I can always tell if I'm feeling half decent, then, like most people, I run around doing things,” she said.
“I know the next few days that I've overdone it, like it just kind of makes you melt.”
Bill had to step up as a caretaker and an advocate. He said what he witnessed from the mainstream medical profession was “shocking.”
“There's this barrier, this brick wall. It's unbelievable,” he said.
“A lot of what got me motivated to be an advocate was the patient abuse, denial and mistreatment or misdiagnosis of Lyme patients."
Bill became so involved with the local Lyme community that he ended up inheriting the role of president of the BC Lyme Society.
“A lot of our members are told it's all in your head,” he said.
“If you came up with any other disease across the border, you name it, whatever the disease tests will be recognized here. You know, COVID, West Nile, malaria, you name it. Comes to Lyme, no recognition.”
Bill says the impact of having Lyme seeps out into other areas of a person’s life.
“Financial ruin, losing your job, divorce, losing their home — that's all part and parcel of having Lyme.”
Although Bill says that the first rule of being a Lyme patient is self-advocacy, he’s also a strong proponent of in person meetings and community building — an option that has been all but removed from possibility during pandemic times.
“Lo and behold, COVID hit. And that has really put a stress on the group. We were so fond of getting together,” he said.
For Elaine, those meetings were a somber reminder of the pain they all share.
“I don't do that anymore,” she said.
“I only did it once. I can't even go on. I just part of it makes me sad. Because I see these other people that are suffering more than I am. And it makes me sad that I can't help them.”
But it’s not just in person gatherings and meeting attendance that has taken a hit during the pandemic. Bill said the group has also had to pause some of their advocacy work and delay meetings with politicians.
“With COVID playing such a prominent part of all of our lives, there's no denying that it has really stolen our thunder.”
When Bill needs a pick-me-up or a moment to reset, he picks up his Fender guitar for some musical therapy or takes his skidoo out for a spin on the water.
For Elaine, her biggest outlet is investing her time in supporting others.
“I do get pleasure, if someone is in need, to help them a bit if I can.”
Special thanks to Mary Halton.
