For Karine Giboulo, a Montreal-based visual artist, reinventing herself as an artist is something she does constantly. It's a mindset that keeps her art exciting and thought-provoking.
But the 42-year-old never expected to have to reinvent herself in her personal life.
When Karine got pregnant with her first son twelve years ago, she started to feel tremendous pain in her back and found it extremely difficult to move around.
She originally thought it was caused by the pregnancy, but as the years went by, the pain didn't recede.
"I would still get massive pain flares that would completely handicap me," she explains "I wouldn't even trust myself to get out of the house, for fear of falling, or being suddenly incapacitated. Something was off."
"It took over nine years between my pregnancy and my diagnosis. So much trial and error before nailing a diagnosis down. It got to a point where it was a relief to learn I have ankylosing spondylitis. At least now we can treat it for what it is."
While Karine felt some happiness about the clarity, it also came with the sombre realization that ankylosing spondylitis, a type of inflammatory arthritis that affects the spine and nearby joints, is a permanent disease. That was a tough pill to swallow.
"I grieved," she says. "It brought a lot of self-doubt and loss of self-esteem. The pain and fatigue would stop me from doing simple stuff, like packing my son's lunchbox. I started to believe I was lazy, or selfish. It wasn't pretty."
Expressing the pain
After finally landing on medication that mostly kept her symptoms in check, and after finding comfort and inspiration in Arthritis Society Canada's ambassador stories like this one, she saw a shift, and started to reinvent herself.
"I couldn't do the things I used to do, in the same way. But I learned to organize differently and be mindful of my energy reserves. I work mostly from home and plan more workdays to meet my otherwise stressful deadlines. I also plan days off following an injection," she says.
Eventually, chronic pain became part of her artistic expression, too. Karine has gained particular attention across North America for her dioramas of miniature human environments.
Her current exhibition invites visitors into an immersive reimagining of her home, brought to life by over 500 miniature clay figures. It includes an intimate scene set in the bedroom of the clay version of herself, showcasing the vulnerability arthritis has dealt her. Her body, morphing into something strange.
"I was shy to do it at first. But many people live with invisible diseases," she says. "I wanted to raise awareness of that fact. Once I did, people started reaching out, sharing their journeys with me. It's been a positive experience."
Perhaps one day, a whole exhibition will be dedicated to life with chronic illness.
"I am certainly considering it!" she says.