The last several months of 2018 were quite eventful for me. I traveled, worked, prepared auditions for upcoming shows, and spent three months on an application for an exclusive Writer’s Studio Program at a local university. In November I received amazing news: I got cast into a new show, and I got accepted to the Writer’s Studio program, but one of the most memorable moments in that month was an invite to be a panelist for a fabulous event called RA Matters at Work, hosted by Eli Lilly Canada and Women in Biz Network, moderated by Cheryl Koehn, the founder of Arthritis Consumer Experts (“ACE”), Canada’s largest running national patient organization.
RA Matters at Work consisted of patients and medical professionals gathering for an evening of information and inspiration on managing RA in the workplace and in life. The number one reason for disability claims in Canada is arthritis. This needs to change. There’s no reason we should have to lose our careers, work life and hobbies to this disease. There are adjustments that can be made in the home and at work to allow us to continue with our careers. This panel was about raising awareness on the complications and the difficulties, the limitations and the solutions discovered through living our lives.
Three patient advocates shared their stories living with RA – Maya Joshi, a student just getting started in the world; Spencer O’Brien, a World Champion snowboard Olympian; and myself, a writer and actress. We were joined by Dr. Diane Lacaille, a practicing rheumatologist and Senior Scientist at Arthritis Research Canada; Alison Stewart, a Vocational Rehabilitation Counsellor; and Flora To-Miles, an occupational therapist and PhD candidate at the University of British Columbia. Along with our personal stories of disappointments and achievements, our professional panel provided information on the tools and techniques patients can incorporate into their environments. Cheryl Koehn guided us through a riveting question and answer period on the impact of life with RA.
The three of us have very different paths but our challenges are similar, and some of our tips and techniques overlap. RA makes life unpredictable – it’s hard to make plans because I never know how I’ll feel from day-to-day. I arrange my tasks in order of importance, and schedule my time, allowing for those days when RA interferes. I focus on the moment and on the things I can still do. I celebrate my accomplishments, no matter how small, to inspire and empower me. I give myself permission to say “no”. I take self-care days and I don’t feel guilty when I must take a break or step back. I don’t put extra pressure on myself. Not everyone has this option, but I was fortunate to be able to switch from full-time work to part-time, which helped me find a balance in my life. These are just some of the adjustments I made to manage my life and work. It’s amazing what a difference even the smallest adjustment or concession can make, and each of us have our own discoveries of what works best.
We all share a common goal in that we won’t allow RA to dictate our lives, and small adjustments can go a long way in helping us keep our livelihood. Our work and our passions are important, and we shouldn’t have to lose them due to RA or any other inflammatory arthritis. There’s still a long way to go, but people with chronic illness are persevering and small changes are starting to emerge in the workplace as awareness grows. RA is only one aspect of my life – when I accomplish something in the face of it, I feel empowered, and ready to show the world that with a little planning, time and patience, I can achieve anything…and so can you.
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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.