Arthritis Awareness Month: Managing What You Can’t See

The fall equinox rode in swiftly on the back of a rainstorm and took up residence. I love autumn. The way the leaves transition to a myriad of orange, red and yellow; the sunsets are deep crimson, and the air is fresh and crisp as the hot summer temperatures begin to drop. The mornings burst from the horizon in a splash of pink streaking low across the sky. It’s clear and cool, with a hint of rain lingering in the air. It’s a time when day and night are in balance, a time to sweep away the negative energy, pull back the veil and allow our ancestors to guide us into a new season. September is also Arthritis Awareness Month and one of the challenges I face living with rheumatoid arthritis is leaping over the hurdles of symptoms you cannot see.

Autumn is my most active time of year and my schedule is filled with writing conferences, festivals, grant deadlines, and theatre rehearsals. My favourite celebration, All Hallows Eve, happens in the fall and I start getting into the mood early for this deliciously spooky season with a countdown to Halloween movie fest, drawing a film title from the witch’s cauldron on nights we are at home. I am also preparing a presentation of one of my favorite authors for a book event I was invited to read at in mid-October. I am fortunate and so grateful for this full creative life, but I am mindful of how quickly things can change with a chronic and unpredictable illness.

Most people are aware of the pain and damage arthritis causes, but one of the biggest factors with living with RA is what cannot be seen. On the surface, it looks like I have a very active life, and I do, but what isn’t obvious is the phantom lurking underneath, ready to knock me off balance with a storm of unpredictably. I cannot predict how I will feel from one day to the next. I may look well to the casual observer, but I wake up the next day feeling like a I fell off a cliff while I slept – because of this I need to work at managing my time, my health and doing my best do avoid burnout. So how do I do that?

I write down my goals in a daily planner which helps me organize my time, however, I am always aware that not everything will get done. RA is a fickle beast, so I plan, but I also plan to not follow my plan – follow me? I build an escape hatch into my schedule and treat it as part of my goal for the day. I listen to my body. I determine what is realistic for me to complete. It’s hard not to judge what we feel is a lack of productivity, but I would argue part of that productivity is taking care of our body and mind. I ease into my tasks carefully, looking for any hint of fatigue, pain, or brain fog. If any of these things are present, I slip into my escape hatch – I take a break, nap, read a book, have a hot bath, and manifest some restorative energy.

Arthritis never looks like what you think it should. It has many colours and many faces. Fall is a good time to reset our lives, and part of that reset is making space for ourselves. Today the rains have arrived after a long dry spell, and I find myself taking respite under a warm blanket with a cup of tea and a book, restoring my energy for a busy week ahead. I am looking forward to shorter days, misty mornings, and stormy nights, to moments of quiet satisfaction and the power of maintaining balance in an unpredictable world.

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About me

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.