I first started showing the symptoms of Juvenile Rheumatoid Arthritis (now called Juvenile Idiopathic Arthritis or JIA) when I was 14 years old. It happened in the summer between grade eight and nine as I was entering high school. I couldn’t lift my leg up the stairs or put my arms over my head without a huge amount of pain. I was a competitive dancer, so I withdrew from a few dancing competitions that summer. It quickly spread to other parts of my body – knees, feet, ankles, wrists, hands - and next thing you know, I couldn’t make it from Geography to Math class during the 15-minute school break period.
I won’t lie. This new reality was really hard to deal with and I didn’t fully accept JIA until I was in my mid-20’s. I had supportive parents who did everything they could for me. My friends were supportive and when the high school vocal group performed at Walt Disney in Florida, my friends pushed me around in a wheelchair to make it easier for me to keep up my stamina. But it’s just really hard to be so different from my peers, especially as a teenager when “fitting in” was all I cared about.
Times were different then – I was diagnosed in 1991 when Methotrexate was just beginning to be prescribed for inflammatory arthritis and TNF had been discovered by Drs. Ravinder Maini and Feldmann for the treatment of Rheumatoid Arthritis. My parents were frustrated with the care I was getting, and we bounced around with three adult rheumatologists before I turned 16. My sister lived in Ottawa and found a local newspaper article about a pediatric rheumatology clinic at the Children’s Hospital of Eastern Ontario – we finally ended up in the right place.
I have lived most of my life with inflammatory arthritis. I navigated high school and university accommodations, Methotrexate hangovers combined with Friday night parties, and dating while living with a chronic illness. I have lived through meeting future in-laws where there were fleeting, discrete glances of my hands, noticeably affected by the years of active inflammation. I have found a partner who understands and supports me in my never-ending journey with JIA. I have travelled extensively and lived in France for six months bringing a huge supply of my biologic on a plane and hoping the customs agents didn’t ask any questions! I navigated job interviews where I hid my hands and visible rheumatoid nodules to evade possible judgement. I finished university and established a career in Human Resources. I navigated workplace accommodations and found employers, managers and colleagues that understood and were flexible in removing workplace barriers.
I was in my early 20’s when I started wondering – will having JIA affect my ability to have a child? Can I physically care for a baby? I was stressed and super anxious – not exactly the idea of what “motherhood” or “parenting” is all about. The ironic thing is that as a new parent and in navigating pregnancy, I flexed the same skills I had developed since my diagnosis. I like to think that my children are kinder and more considerate than their peers and grow up understanding that differences are okay.
In reflecting on my 30+ years of living with JIA, all I can see is the strength of living with this disease and the positives it has brought to my life. Living with JIA makes us more adaptable and capable of taking on life’s challenges. I have met an amazing community through my work with the Canadian Arthritis Patient Alliance, in my roles as a patient research partner, and now work as a disability and health policy consultant. It has changed my life course, but I think it’s because it has created the circumstances where I learn life’s lessons early. Wisdom can come from navigating life’s adversity.
You may not realize it now but living with JIA is a superpower.