Ankylosing spondylitis is hard to pronounce – and sometimes harder to diagnose accurately. Just ask Jacquie Shinkewski.
Jacquie had just entered her 50s when she was first diagnosed with the disease back in 2016. But she had been plagued by the disease’s painful symptoms since she was a teenager. At that time, the orthopedic surgeons she consulted dismissed her agonizing flare-ups as ‘growing pains’. Gastrointestinal issues in her 20s couldn’t be pinpointed, either.
By her early 30s, she could only sleep two hours at a time due to the pain, and she had trouble walking. “I was told that not sleeping was normal because I had little children,” says Jacquie. “I figured I would be in a wheelchair by 40 if I just lived with it, so I went to a chiropractor, hired a personal trainer and got my mobility back.
Jacquie went through several years where she felt well and strong, but as time went on she experienced a slow and steady decline. At her peak she had run three half-marathons, but her times were getting slower and she was finding running more and more difficult as the pain in her lower back grew more intense and more constant.
“I was spending between two and four hours awake due to pain most nights,” Jacquie reflects. “I was getting crabbier and losing my patience with people. Inflammation in my body was out of control and I was experiencing all the problems that come with that, including respiratory issues.”
Everything for Jacquie now revolves around pain management. She has changed careers from teaching elementary school to working from home as a multi-media manager for a dental practice – the flexibility has worked out well. She is also about to follow BC’s recently announced program of switching from a successful biologic to a biosimilar.
In practical terms, Jacquie has introduced many modifications to her daily life, including a sit-to-stand desk, an e-bike with ergonomic hand grips and a gel seat, a heated massage seat and a shoulder massager. Taking part in a modified aqua running and strength program has also paid dividends, as has yoga.
However, those physical modifications don’t help Jacquie with her mental health, which is one of the hardest challenges many people with arthritis face. Fear, worry and anxiety became all-consuming. The support of her family, husband Daryl, son Jamie and daughter Kelsey, has been vital.
“Thanks to my family, I never felt alone,” says Jacquie. “Most importantly, I learned to ask for and accept help when I’m struggling. This disease affects them too and I appreciate that they live this as much as I do. They can see the invisible.”
Jacquie has also worked hard at helping herself. She read books by other people who live with chronic pain and illness and incorporated their techniques into her daily routine. She practises mindfulness and meditation, using gentle music and distraction to ease her mind. “I let go of many things and simplified. Most importantly, I forgave everyone, everything and myself.”
Once she was finally diagnosed, Jacquie got involved with the Arthritis Society so she could connect with local people who understand her situation. She has attended and facilitated workshops, and been a keen supporter of the Walk for Arthritis in Kamloops.
The lack of knowledge about ankylosing spondylitis (AS) in the wider world, even among health professionals, meant it took decades for Jacquie’s condition to be identified. However, recent breakthroughs should improve that experience for others, as researchers work to develop a reliable blood test to help doctors detect the disease much earlier.
As many as 300,000 Canadians live with AS, but some 6.5 million Canadians experience chronic back pain. Understanding how to tell the difference is important, because each requires different treatments. Getting an early and accurate diagnosis of AS can help avoid significant and lasting spinal damage.
Jacquie has always loved the outdoors: being on the water, hiking, biking and playing pickleball. Another passion is music: she plays the French horn in a brass quintet and played for many years in her local symphony orchestra in Kamloops. She is determined to embrace life. “Arthritis won’t stop me from living, having adventures and making memories.”