This is a special post for RA Blog Week, a wonderful week of sharing stories and connecting with other bloggers in the arthritis and chronic illness community. In this post, I combined two blog topics, the story of my diagnosis and being active in taking charge of my life with chronic illness.
RA or “The Old Lady in My Bones” as I have named her, had her beginning in the spring, as so many things do. I didn’t recognize her presence right away, and certainly wouldn’t have called her RA. After all it was only a swollen elbow – an overused right elbow that puffed up from too many spins in the dance studio or born from the repetitive motions of working on a keyboard. She was falsely identified as “tennis elbow” or lateral epicondylitis if you prefer. I wrapped her in a brace and carried on with classes, rehearsals, and work, and she eventually faded away, slipping into the shadows backstage.
In the summer, my left elbow leapt from the wings and joined the dance. I recognized the motion, and fell into the familiar rhythm of that throbbing pain and assumed I knew the cause – and so I slapped a brace on the left one and spun her offstage. The rest of the summer slipped by with an even tempo – I worked, I wrote, I spent my evenings rehearsing for shows in the theatre and drove home beneath clear nights bubbling with the champagne of starlight. I celebrated my strength and my youth. I played on the stage, blissfully unaware of what was waiting in the wings.
On a gloomy autumn morning I woke swollen and feverish, my limbs heavy, weighed down by a crushing exhaustion. Clearly I had caught the latest flu virus making its way through the cast. I drank fluids, consumed chicken soup, slept and waited for it to run its course. I trudged through rough mornings with swollen stiff joints for six weeks before going to my doctor. In one hour I was suddenly recast in a new part. I had become a victim of early RA – it was no longer my “grandmother’s” disease – it burst through the curtains and into the spotlight of my life.
Nobody expects to deal with chronic illness at any phase in life. I was diagnosed with early RA in my thirties, at the peak of my theatrical life – I had barely finished the first act. I was given medication to manage my symptoms but medications could only go so far. It was up to me to figure out the rest. I cut back on work, theatre commitments and dance classes while I tried to figure out my new limits within the world I had built. I put myself and my health first. I took part in research projects, physiotherapy and occupational therapy classes. I found new ways to keep moving, and enjoy activities to which I had grown accustomed. I worked on writing a new script to get back to the life I knew, even if it was on a smaller scale. I focussed on positive aspects of my life beyond my disease. I gave myself permission to take time for myself when I needed it and not feel guilty. And I rediscovered an early aspiration that was waiting patiently to make its debut – I became a writer.
“There are things I may not be able to do well or ever do again, but that doesn’t mean there’s nothing I can do. There are always new goals that replace the old ones. And even when I try and fail, I can still find some small consolation in the effort. The world is full of possibilities and I won’t let chronic disease stop me from exploring – because I know I can.” (I Think I Can, I Know I Can).
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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.