When I tell people that I was two years old when my arthritis was originally diagnosed, the reaction is usually shock. In this era of everything-we-want-to-know-at-our-fingertips, I am surprised by how many people still don’t realize that arthritis is a disease that can afflict all ages. In fact, according to the Arthritis Society Website “it is estimated that as many as 24,000 Canadian children aged 18 and under live with a form of arthritis.”
Yesterday I attended a fundraising luncheon hosted by the Manitoba chapter of the Arthritis Society. The goal of the luncheon was to raise funds for Childhood Arthritis Camp—an initiative that has been around in other parts of the country for a while and, thanks to the generosity of many donors, will be happening in this region for the first time this July.
One of the features of the luncheon was the opportunity to meet a group of young ambassadors—kids living with Childhood Arthritis—who openly and articulately share their stories to offer a glimpse into the impact of this disease on their lives. These are kids who are dealing with daily pain, mobility challenges, physiotherapy, fatigue, and some pretty heavy-duty drugs. I know what they are living, because I’ve lived it. But they are also kids who play hockey and basketball, who take dance lessons and gym class, and who are really excited about going to camp with other kids who comprehend the unique challenges they face.
Fifty years ago, I would have given anything to know another child with arthritis. There was no Arthritis Camp in the ‘60s and ‘70s when I was navigating school with an invisible disability that no one seemed to understand.
My primary school music teacher clearly did not understand how painful it was for me to sit cross-legged on the cold, tile floor for the duration of music period.
My elementary school teachers clearly did not understand how the practice of inviting students to “pick teams” for a gym activity can quickly become a form of teacher-sanctioned bullying.
My junior high gym teacher clearly did not understand that there were better ways to accommodate my limitations than relegating me to the bench.
To this day, I feel a residual discomfort in school gymnasiums, and I avoid any sort of team-based physical activity because I carry the deeply ingrained assumption that I will be a liability.
I’m fortunate to have had five decades of good medical care, and no shortage of good friends. And I did go to camp. But I have never had a community in which I could look around and see my experience of living with childhood arthritis reflected back in the experiences of my peers. I envy these kids that, even more than I envy them the huge leaps in medical research and awareness that have occurred in the past 50+ years.
My parents didn’t have the benefit of that community either. Which is why I made a point of introducing myself to the mom of one young ambassador. Why I took the time to tell her that, just like her son, I was a toddler when I was diagnosed. And that here I was now— A successful professional. A parent. A happy and healthy adult with my arthritis well-managed and having minimal impact on my day-to-day existence.
One thing I’ve learned from living a story that others didn’t always understand is the importance of telling that story. And telling it again. And again.
Telling it, so the people who have never lived that story can grow to understand. And telling it so the ones who are living it will know that they are not alone.
Do you have a story that someone needs to hear?
For more information about Childhood Arthritis Camp, or to donate, click here.