My storytelling journey began in early childhood. I enjoyed playing with words, sculpting them onto the blank pages of a new journal and wondering what they would become – they became many things: memoir, poetry, essay, sketches, and stories. I wrote for entertainment; I wrote to say thank you; I wrote to express what I saw; I crafted my future hopes and dreams. I had many aspirations for my cherished works, but it would take several years and the advent of RA before my words found a home.
RA is a complex disease that is often misunderstood. It never presents how we imagine it should and it is particularly adept at concealing its presence. In the months after my initial diagnosis, I struggled to find a way to regain control of a life altered by chronic illness. I needed to bring RA to the surface, give it a voice, a personality and exploit its flaws. I gave it a name – The Old Lady in my Bones – and used words to lift it out of the shadows. Along the way, I had the honour of meeting others with the same purpose. I was not alone in my crusade.
Everyone’s experience with RA is unique. The disease is the common denominator but how we manage it and how it manifests in our bodies is always changeable. We all have different methods and treatments for managing – what works for one person, may not work for another, but through our stories, we can discover techniques we never would have thought to try.
Sharing our stories is empowering. Stories connect us. There’s nothing more thrilling than to discover that “a-ha” moment and say “yes, that’s exactly how it feels”. Our stories help dispel the myths and the presumption of living with disease. They influence, entertain, inspire, teach and motivate us. Through the experience of others, we learn how to cope with our individual challenges and, by the same turn, we can offer our own insights to others. Stories expose fresh perspectives on subjects we never would have tackled; they help us see the humanity of chronic illness, not just the facts and statistics. They reveal the hidden strength we possess and help bring it to the surface.
Our stories make a difference. They help paint a new picture of disease. Sharing my story gave me the control, not just to manage RA, but to curb its power over my life. My story is one of thousands. What is your story?
My story on Health Central:
“You have to be so patient learning to live with a chronic condition. You know, there may be things that can’t do again, or things that you might not be able to do very well again, but that doesn’t mean there aren’t other things that you can do. Attitude is huge. You can’t just focus on the illness. Pay attention to what is good in your life. Give yourself permission to check out for a while – you don’t have to be present 24 hours a day.”
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J.G. Chayko is a writer, actress, and international arthritis advocate who’s been involved in theatre for more than 30 years and has published poetry, fiction, and creative non-fiction.