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Imagine RA Network: Chronic Illness in a Pandemic Life

Wednesday, October 14, 2020

PREFACE

The Imagine RA program aims to strengthen relationships between Canadian rheumatoid arthritis (RA) advocates and raise their voices to inspire others in the community to seek a better condition experience. Sharing insights and personal strategies for thriving with RA, advocates – collectively known as the Imagine RA Network – fuel meaningful conversation among peers and work to generate awareness of RA among the general public.

Advocate and Imagine RA Network member Julia Chayko shares her story on maintaining a positive outlook on life in the face of a chronic illness and global pandemic.

 

Imagine RA Network: Chronic Illness in a Pandemic Life

Written by: J. G. Chayko

The sun rises over the mountains painting the beach in a crimson blush. The breeze cleanses our skin with the light scent of salt and brine. A pair of eagles sit high up on the bluffs looking out over the ocean. The crowds that usually flood the beach are still sleeping, perhaps just waking up to a new day. A skein of geese skims over the water just before the bride and groom take their vows at the water’s edge. I reach out, take the hand of my new husband and together we walk over the sand, leaving behind the imprint of our new beginning in an unfamiliar world.

We never saw it coming. We never could have guessed that a virus would change our world. The possibility only existed in movies, and there was always a dynamic hero that came to the rescue with a cure. In our isolation, we learned how to re-invent our lives, just as those with rheumatoid arthritis (RA) or other chronic conditions have to do with a new diagnosis. As important as it is to remain connected with each other during a pandemic, the same can be said when living with RA.

It can be hard to find the support you need when family and friends don’t get it. That’s why community support, such as the Imagine RA Virtual Workshop*, is a lifeline when trying to navigate the rough seas of a new or existing diagnosis. The virtual workshop was a recent event which brought together a group of individuals living with RA to discuss ways to support the community. Connecting with other patients, advocates and healthcare workers is extremely rewarding. We can share our experiences and catch a glimpse into the individual lives of those living with the same disease. RA is a very personal disease and our experience with it is never the same. Listening to the stories of other patients inspires us, makes us take that second look at something we never would have considered, in trying to cope with our own condition.

RA touches the lives of millions1, but like trying to navigate this new pandemic world, many people don’t understand it2. They hear the word “arthritis” and immediately think of their grandparents. They don’t see the pain and inflammation; they don’t see how it swamps our body with crippling fatigue, how it affects our daily lives, or how it tears us down. RA is hard on the body and our mental health, making it difficult to work, to care for our home and families, enjoy social events and complete the day-to-day tasks others take for granted. Coping with disease and trying to find a way to live a fulfilling life in a pandemic makes it even more challenging.

Our pandemic world pushed me to find a better way to live with RA. It forced me to slow down and appreciate the simple things that were often overshadowed by my hectic life. My insular life provided an opening for more creativity. The pandemic forced me to become more active and invest in my own self care, and as a result, I am thriving better with RA than ever before.

The important thing to remember in living with RA is to celebrate every accomplishment, no matter how insignificant you think it is. Any achievement in the face of disease is worth celebrating. Let go of the guilt around saying no. Be kind to yourself. Don’t be discouraged by setbacks - let them happen and start again on a new day. Don’t put pressure on yourself - it’s okay to slow down and take time for you. Living with RA is not the same today as it was in the past. Life is not stagnant - it flows and bends, and there in the creases is where we’ll find the strength to live our best life.

 

*Disclosure: The Imagine RA workshop was organized by Pfizer Canada and participants were compensated for their time spent participating in the workshop.

1. World Health Organization. The Global Burden of Disease 2004 Update.

2. Pfizer. Imagine U Workshop Outcomes & Brainer Brief. 2019