24/7Spring took a long time to arrive on the west coast. Months of overcast skies and cold damp days weighed heavily on my body, igniting the burning pain of RA flares. I struggled with morning stiffness, fatigue and swollen joints. My partner and I escaped from the water-logged month of April, and spent a blissful restorative week in the desert, and when we returned, I greeted May like a flower opening its petals to the sun. Cherry blossoms exploded from their buds, flushing the neighborhood in brilliant pink. Trees dressed themselves up in leafy green plumage and flowers burst from the moist ground reaching skyward as the sun burned away the clouds. I always thought of May as the month of healing and rejuvenation, the beginning of a season filled with new life, warmth and beginnings. May is also the month designated for arthritis awareness.

My social media pages bloomed with purple, indigo and blue ribbons.

Posts about victories, setbacks, research, statistics, facts and blogs, flowed before my eyes like specks of sunlight I couldn’t absorb. I had every intention of participating, but from the moment I stepped off the plane after vacation, I was launched into a whirlwind of work, deadlines and family events. I juggled new projects, did research, and composed an essay for a scholarship deadline. I poured over pamphlets and made travel plans for an upcoming writers’ festival, I met with an arthritis patient group and attended an event for arthritis research. I swam and did yoga in the mornings, attended birthday celebrations and social events. I slept, stepped away from my glowing computer screen, and went for twilight walks with my partner. My girlfriend and I took a day trip, hiked in the woods and watched the sun sink into the ocean. I cooked, I cleaned, and took time for my own self-care. The days surged forward like a spring flood and I was swept up in the torrent.

When I finally landed on the muddied banks, arthritis awareness month was almost over, and I hadn’t so much as raised a purple ribbon…. or so I thought.

JG and her girlfriend, Brenda. Photo credit: J.G. Chayko.

Inflammatory arthritis is a life-changing and misunderstood disease that is haunted by the misconception that it’s only for the elderly and further challenged by the fact that it’s an invisible disease. There are many ways to raise awareness for arthritis – through story, advocate groups, sharing experiences, and joining a community, but I think the most powerful method of raising awareness is how we conquer day to day living with arthritis. It’s about the 19-year-old with ankylosing spondylitis who graduates, works part-time and goes to college; it’s about the 30-year-old Mom with lupus who raises her kids and takes care of the house; it’s about an 80-year-old with psoriatic arthritis who gets up every morning and meets his friends on the golf course; it’s about the eight-year-old with juvenile idiopathic arthritis who goes to hockey practice before school. Facts and figures are just ghosts on the page – it takes people to bring them to life.

Arthritis awareness is about living the best life you can in spite of your disease. Celebrate every achievement, whether it’s getting of bed, taking a shower or training for a marathon. We don’t have to be defined by our limitations, we can just experience life on our own terms, share our stories and change the view of these invisible diseases.

May is almost over, and what did I do for arthritis awareness?

I lived.