Changing a Familiar Story

Screenshot (9)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.Screenshot (11)

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.


“Hope is the thing with feathers

That perches in the soul

And sings the tune without the words

And never stops at all.”

– Emily Dickinson

6 thoughts on “Changing a Familiar Story

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  1. Thank you for sharing your story. Unlike you, I was diagnosed with JRA when I was 11 years old. It was the hardest barrier I ever had to face. I was just going to start middle school. Just that change in my life was stressful enough. When I started dealing with the pain and fatigue I wanted to die. Kids my age didn’t understand the torture I went through to get from one class to another. I couldn’t hold a spoon to eat by myself and my siblings would constantly make hurtful comments implying that I was lazy and wanted everything done for me. I was just 11 years old and I felt like my body was a jail. Before I was diagnosed I was a very physically active child. I jumped rope, was on the drill team, played ball for hours. The day my pain arrived, my life was turned completly upside down. The worst part of the whole experience is that nobody understood. I was expected to run and do the things I did before because I guess people around me thought it was all in my mind. It wasn’t . I am 45 years old and my hands, feet, knees, wrists, and other joints are severely disfigured. But for the first time in my life, I am taking the medication that has allowed me to get up and get through the day.

    It’s nice to know that someone understands that this is not made up.

    1. Mary, it’s stories like yours that bust apart the myths of this disease. Thank you for your courage and for sharing your story. I’m so happy you found a treatment that allows you to carry on with your day. Stay well.

  2. Wonderful video, J. You are truly eloquent as your writing shows. Good luck with your endeavors to live life to the fullest. We will not let this disease dictate our day-to-day lives.

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