The cameras are set up in a room surrounded by large windows, filtering in what little daylight the gray clouds will allow. The last days of sunshine and blue skies have drowned in the rain that now pummels the ground with an angry windstorm. The anticipated outdoor shots of me have dwindled away in the dreary weather. A sound technician attaches a tiny microphone to the collar of my blouse. The cameramen set the camera in the best position to capture my image as I tell my story. The director chats with the producer about what questions to ask and how the story should be weaved together. I patiently wait, accustomed to the sometimes long preparation in film work, but this was no ordinary shoot – this was not a movie or a television show. Today is not about performance – it is about sharing my story living with arthritis, and sadly, I am not the only one with this story….
It was a night of glamour and glitz, smart suits and lavish dresses; a night of champagne, red roses and tango. It was the world of chronic illness brought to life through the therapeutic medium of art – stunning paintings surrounded the room in various shades of yellow, purple and crimson, reflecting the temperature of hot swollen joints; plush red roses dripped from ceiling fixtures, vibrant dancers took to the stage to entertain and a glow of hope ignited the room. It was an evening of connecting with old friends and colleagues, sharing and nurturing – but more than that, it was a critical gathering to spark an awareness and raise funds for a cause that is often lost in the shadows of chronic illness – arthritis.
There are over 100 types of arthritis – it has become the most expensive disease in Canada and only 3% of medical research dollars are allocated to arthritis research. It’s due to research and the diligent work of scientists that we can better manage our disease through the development of tools, technology and treatments. I couldn’t imagine having to live with this disease today without the help and support of arthritis research. It is a disease deeply rooted in social myth, often described as only for the elderly and as an “invisible disease”, because we often can’t, or won’t, see the negative impact it has on people. Arthritis is everyone’s disease, not exclusively reserved for an aging population. It not only damages the body, it damages relationships, employment, economy and self-worth. Once people begin to understand arthritis and all its traits, it will create a better world for people coping with arthritis. They will have the ability to rediscover themselves and take back what they have lost without judgement.
After the speeches, they play the video of my story. It’s surreal to see my face up on the screen, talking about my diagnosis and the changes to my life. As it plays, the room is silent and I wonder what people are thinking – are they moved by my story? Are they surprised at my youth? Are they skeptical of the fact that I don’t look sick? Are they becoming aware that arthritis belongs to everybody? Do they comprehend that, in spite of what I have lost, I have been able to salvage parts of my life due to arthritis research?
Things have changed over the years thanks to the diligent work of scientists finding new ways to manage and control this disease. There is still so much work to be done. It’s time to put the spotlight on arthritis, to draw it from the shadows of invisibility and expose all its secrets. My story is only one of thousands; we all fight the same monster, even though it manifests in different ways. Only by listening to the stories can we bring about changes in attitude towards understanding arthritis. One day I hope we can vanquish the stigma that arthritis belongs only to the elderly, that, in all its cloak and dagger forms, it’s not as invisible as we believe, and once those notions have vanished in people’s minds, the spotlight will begin to fade, burning out in the bright hope that one day, the disease itself will evaporate into the myths of the past.
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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.
What an amazing evening and how wonderful (and BRAVE!) of you to share your story. Sending hugs.
Hugs right back to you Carla. You’ve endured trials with just as much bravery, if not more.
Thank you for highlighting the need for funding for a disease that can affect any one at any age and is often misunderstood. I pride myself as a determined woman and I have never let arthritis rule my life. In fact, for many years I wasn’t even aware that was what I was “fighting.” For the first time in years, I broke down in the specialist’s office. I was overwhelmed that day, just tired of arthritis, tired of the struggle to stay fit, and tired of the pain that can accompany it. It was a brief, passing moment but on that day, the brave girl was hiding somewhere else. So thank you for bringing awareness to this disease.
Thank-you for sharing your experience. This disease is a daily battle and sometimes, just waving the white flag is all we can do. But we will always pick ourselves up again, so be kind to yourself. X.
I love the pictures. Thank you for continuing to share your experiences with everyone.
Thank you for your support. It’s always lovely to have you here and I’m thrilled to be a part of following your journey 🙂
You’re welcome. I’m happy to be a part of yours.