With lupus, I reframe my work life around small, creative endeavors

“The body keeps the score.”

Before I was diagnosed with systemic lupus erythematosus, I’d never heard that saying. Over the years, though, I’ve found it to be true. Yes, the body does keep the score, and, unfortunately, the body’s limitations dictate the day. Its disabilities and diseases alter careers, relationships, and futures. We who live with lupus and other rare, chronic health conditions must be mindful of the way lupus changes our ability to work, eat, love, move, win, and so much more. It’s a never-ending lesson.

Despite these limitations, I still notice my purpose at times when my body has commandeered my work for the day.

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For example, I’ve started completing puzzles, not because it pays to keep the lights on, but because it’s become one of the anchors that can help settle the start of a flare. It can temper the fight-or-flight sensor that accompanies the onset of lupus symptoms. So I’ve started the habit of sitting with a puzzle, sprawling the pieces across a piece of cardboard, and being distracted by the colors and cuts of beautiful art. I’m hoping that it will redirect my sympathetic nervous system. If I’m lucky, connecting the pieces brings a small celebration, a quiet victory during a moment that is dominated by limits I cannot control.

Gardening helps, too. I do more soil-watching than actual digging, telepathically willing the seeds to break through rather than bending down to coax them. I marvel at the small miracles of nourishment and food pushing upward, and in doing so, I discover a different task my body can perform.

Putting together jigsaw puzzles has become a creative way for columnist Candace Semien to respond to lupus flares. (Photo by Candace Semien)

Audiobooks have become my co-workers. I carefully listen and sometimes repeat passages multiple times, giving my brain a chance to catch up. Words sink in gradually, patiently, making me acquiesce to the fact that comprehension doesn’t always happen at the pace I once demanded of myself. My body keeps the score, and its limits dictate everything.

Any day I can do a puzzle, garden, or listen to a book is a day worth celebrating. But that’s not because of productivity or because it’s an accomplishment on the career-minded world’s terms, nor does it bring a paycheck or the recognition that self-employment might.

While an uptick in flares, pain, or cognitive failure can limit my career, I’m learning to reframe my work life day by day, thanks to therapy and bullet journaling. I’m learning that disability doesn’t negate my purpose or my creativity. It may make me pause, but I eventually find the courage to continue. I notice the sparks of wisdom, the flickers of joy, and the resilience that emerges when I accept the pace my body and mind allow.

I know it’s not work in the typical sense, but it’s still living, whether in a bed or at an office.

Each puzzle I solve, every seed that pushes through the soil, and each passage of a book that finally settles in my mind is evidence that I lived today, despite the massive limitations.

As you read this and perhaps think of your own small victories, celebrate with me. Celebrate your persistence. Celebrate that you can choose to reframe the days of immobility as days of patiently healing. Recognize those tiny triumphs. Let’s honor the moments reminding us that life continues, even when it asks us to move slowly, gently, and with care.

Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to lupus.