If I had to have rheumatoid arthritis, I chose a good time to have it. Today we have more choices for treatments, education on management, advocacy, community, inspiration and medical teams that help us live the best life we can.
I am fortunate to be part of a patient advisory group with Arthritis Research Canada. Over the years, I have read about and participated in research projects. Knowledge is power. The more I know about my disease, the easier it is to control.
Three years ago, I shared my story at the ARTthritis Soiree, an event designed to bring the community together and show them the importance of ongoing research for arthritis.
Changing a Familiar Story
It all began one soggy morning, not long after the leaves began to turn. My eyes were caked in sleep dust; I was feverish and thick with swelling. I felt like someone had anesthetized me during sleep. My movements were stiff, like I was slogging through mud, and my bloated joints resembled marshmallow puffs. It was unusual for me to wake up already exhausted. I was the ultimate morning person. Instead of jumping into my workout clothes, my normal routine, I trundled out to my living room and sagged onto the couch, sliding into a murky world of black and white. Outside my window, a vibrant earth glowed with brash colors of crimson and orange. I figured I had caught a virus. It had been a busy few months – I was doing several dance classes a week and had just finished a four-week run of a theater production. The next morning was the same – and the morning after that. For six weeks I lumbered through days of joint pain and fatigue. I made an appointment with my doctor. He referred me to a rheumatologist who diagnosed me with early RA, and that’s where it all began – the start of a new kind of life.
It seemed I aged overnight. I lost the energy to exercise in the mornings; painful joints hindered my dance life with partners who had no awareness of the agony they inflicted when they clutched my hands or elbows; I lacked the drive for performance and fatigue quietly pilfered my concentration for memorizing lines. I left theatre life for a while, struggling to find a way to control my symptoms. I got lost in the forest of infirmity, treading paths strewn with ice packs, heating pads, medication, pain and fatigue. This was not the life I envisioned – and it certainly wouldn’t be the life I’d accept. I needed to learn other strategies for living and coping with this disease – and I found it with the assistance of arthritis research.
Arthritis research has come a long way in discovering new methods for arthritis sufferers to manage their disease on a daily basis. Research scientists all over the world work hard to find the techniques and treatments to help patients cope with their disease beyond the limits of medication. Through Arthritis Research Canada I was given the opportunity to share my story as part of an annual event to raise awareness of the importance of arthritis research. My story is not an original one. Thousands of people live this story every day. My three-minute video doesn’t even come close to summarizing my struggles and victories – it does, however, give me the opportunity to express my appreciation to all the supporters of arthritis research.
Arthritis research has made it possible for me to restore pieces of my old life. Two years ago I returned to the stage. This past summer I played the love interest in a romantic comedy. In the fall I am returning to the stage as a lead in a family drama. I have a long way to go to triumph over my disease. I still fall into potholes along my journey, but each small victory buoys my confidence. Each time I take a bow on stage I am thankful to the scientists and patrons of arthritis research for changing my story and providing hope for a brighter future.
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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.
J.G. I do not know when you were diagnosed, (For me it was 2000) but that is exactly what my first rheumatologist said. I agree it is the best time to have RA, if I am to have RA. The next generation will be even better.
Thanks for your work as a patient advocate.