The summer is burning out in deep crimson streaks of early twilight. The leaves are starting to turn, and last night the skies unleashed a torrent of rain, finally breaking the cloying humidity. Fall is delicately balancing on the horizon as we shift into September and Arthritis Awareness Month.
Arthritis Awareness Month comes around every year. For 30 days social media is flooded with stories, research and data on living with all types of arthritis, and then, just like that, it’s over – at least for the rest of the world. When the last day of September disappears into a new dawn, the healthy people move on with their lives – but we continue to live with it for the rest of the year.
What is arthritis awareness? Why do we need it? We need it for all of us who are judged by an invisible disease. We need it so friends and family can understand why we say no; so employers understand why we’re sometimes not at our best; we need it for the thousands of newly diagnosed people who are unaware of all the research being done to give people with inflammatory arthritis a better life.
Arthritis has merged into my life like a puzzle piece making it completely invisible. So, the question is – how can I keep it visible when the thirty days are over? I do it by living the best life I can in the face of disease and changing the perception of what arthritis looks like today. It’s not your grandmother’s disease anymore – children have it, teenagers have it, young adults have it and a 37-year-old actress, dancer and writer who never thought it could happen to her. On the surface, I don’t look like I have chronic disease – I go to work, perform on stage, write and go to school. I have a busy life – but there are limitations. I work part-time, I do one show a year instead of two or three; I take self-care days and ask for help when I need it; I talk about life with RA with those around me, and they in turn, will talk about it with others.
We can spread the message that arthritis is not what it appears to be by living a life that is at odds with what society thinks arthritis should look like and sharing that experience. Don’t just be the messenger – be the example. Expose the myths and demonstrate what an invisible disease really looks like in your life. Keep fighting for arthritis awareness, for education, for knowledge, and for research – but most of all, fight for your own extraordinary life with RA.
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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.