Every month, it seems, there is a call to action to advocate for a specific disease. Social media explodes with ribbons of various colors representing different types of illness. There are posts on victories, stories of defeat, facts, statistics and figures. It’s a grand opportunity to add our voice, share our experience, invite people into our world and help them see chronic illness in a new light…
“Facts and figures are just ghosts on the page – it takes people to bring them to life.”
When I was first diagnosed with RA, my medical team taught me all about my disease, explained what was happening inside my body, taught me about different types of medication and how they work. In terms of science, I felt I understood what I was facing, but I didn’t know what it would be like to live with it. I needed to peek through the windows of those living with chronic illness and see how they managed ordinary life. I didn’t want the science – I wanted the experience. When I started writing about RA, I tried to focus on the day-to-day challenges my medical team didn’t talk about – what it felt like to get up in the morning, the new challenge of opening a jar and picking up mugs, going for walks, exercising, typing, working, my physical body and how it changed. I wanted to figure out how to live. It didn’t take me long to find my answer.
May is arthritis awareness month and this year, (according to social media), I was missing in action for most of it. I didn’t have time to participate in the chats, saw only glimpses of new blog posts, and spent but a few seconds a day retweeting the occasional tweet. Life had swept in like a tsunami and pitched me headlong into work, projects, deadlines, and family events…
“When I finally landed on the muddied banks, arthritis awareness month was almost over, and I hadn’t so much as raised a purple ribbon.”
For a moment, I was disappointed. I didn’t engage in my community, I didn’t share my story, and I missed out on supporting all the amazing people I learn from everyday. How had I let arthritis awareness month pass me by?
We all advocate in various ways, and each journey is very personal. I didn’t have time to engage in social media, because I was out walking on the shore watching the sun set into the ocean with my best friend; I was hiking in the woods and listening to the rippling song of a waterfall; I was spending valuable time with my partner, reading, watching movies and going for twilight walks; I was visiting family; I was seizing an opportunity for my future.
I just spent 31 days engaging in life…
In my latest post for CreakyJoints you can read about my perspective on arthritis awareness:
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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.