“I’ve been living with rheumatoid arthritis for 30 years, and it never stops surprising me. I was first diagnosed just before my husband Jerry and I got married. We had recently bought our first house in Hamilton and we were doing a lot of the renovations ourselves. One morning, I woke up to find my hands and feet so swollen that I couldn’t even put my shoes on. At first, I chalked it up to working too hard on the house. But it kept happening, morning after morning.
When I finally saw my doctor, he told me I was just going to have to learn to live with it. That was the mentality back in the ‘90s when it came to chronic illnesses. Essentially, too bad — figure it out.
But I didn’t settle for that. After pushing for more answers, I was finally properly diagnosed and connected with a research rheumatologist. He found a medication that actually worked for me — at least for a while.
At the time, I had a demanding job in the agricultural chemicals sector, which required regular travel. I was pushing myself hard, often ignoring my body’s limits. Eventually, the fatigue caught up with me. One day, I started having trouble breathing and discovered I’d developed rheumatoid nodules on my lungs. I hadn’t even realized that could happen. People often think that arthritis only affects the joints, but it’s an immunological disorder that can impact the whole body. In my case, it certainly has.
“It always seemed like one thing after another.”
Throughout it all, Jerry and I have done our best to live our lives to the fullest. We moved to Marmora, joined a dog club, and got involved in Snofest, Canada’s longest-running dog sled race. But the medical complications and surgeries kept piling up. I’ve had tendon replacements on both of my thumbs, joint replacements in both of my knees, and now I’m waiting on a shoulder replacement. Jerry, too, has faced his own challenges. He’s been diabetic for as long as I’ve known him, and in early 2020, he had a stroke that left him in a wheelchair. It always seemed like one thing after another.
Then came the pandemic.
We had moved again — this time to a remote area in New Brunswick with our two dogs. Both of us were immunocompromised, and Jerry was still recovering from his stroke. We were very much dependent on homecare. It takes a village to run our home. But, due to the lockdown protocols, the amount of support we could get decreased dramatically.
It’s easy to understand why. Our homecare worker had to wear a complete suit — head to toe, mask, gloves, everything — just to come into our house. There are only so many hours a person can work in that get-up. As a result, much of the responsibility fell on me, despite my own physical limitations. I started getting very sick, and very fatigued. I couldn’t sleep. And then the snow came.
I know everyone felt isolated during the pandemic, but it’s different when you’re immunocompromised, disabled, and snowed into a remote home, cut off from most of the world.
Coming out of that experience, it was clearer to me than ever before that I had to focus my energy on making a better future for people with disabilities. I’ve always believed in helping others, so I joined the Coalition for Persons with Disabilities and became a patient partner with the Canadian Arthritis Patient Alliance. Patient justice and advocacy are now at the core of who I am.
I’m particularly passionate about standing up for people whose disabilities are invisible. People often can’t tell the full extent of my disability just by looking at me. They certainly can’t see how vulnerable I am to infection. And so I’m always on the lookout for those in my small community who might be struggling, who might need a bit of assistance, even if it’s not obvious at first glance. I know they’ll help me in return when I need it.
There are still so many changes we need to make in this province — and across the country — for people with disabilities, whether they’re immunocompromised like me or in a wheelchair like Jerry. Whether their disabilities are visible or not, the fight for equality and support is long and difficult. But I’m done with taking ‘no’ for an answer.”
Return to the Immunocompromised Voices collection.
The Canadian Immunocompromised Advocacy Network (CIAN) is working to unite and amplify the diverse voices of immunocompromised people living in Canada. In doing so, it envisions a world where immunocompromised people can thrive in safer, more inclusive communities. If you’d like to get involved with CIAN, either as an individual or a group, sign up here.
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