How It Feels to Live Life in Snippets Because of Chronic Illness

When I was maybe 9 years old, my family spent a week vacationing in southern Spain. We practically lived in the swimming pool at our rented villa, and when we weren’t in the water, we were out walking through the white-stuccoed villages in the beautiful southern sun. A few days into our trip, I noticed that I had difficulty focusing my vision, and my eyes teared constantly. By the end of the week, I could barely open my eyes at all. All the bright sunlight had caused major damage to my eyes. It was several weeks before they healed fully.

I had nightmares for many years after that. In my dreams, I would try my hardest to keep my eyes open and take in everything that was playing out around me. But I couldn’t keep them open. I would watch the scenes disappear through my blinking eyelids until everything went black. When I could see again, everything had changed and the “plot” had moved on, leaving me struggling to understand what was happening. More often than not, I awoke feeling panicked.

Fast forward many years. I’m grateful that I don’t have massive vision impairments (although I frequently have trouble focusing, light sensitivity, and muscular issues with my eyes). Even so, I often feel I’m living out the nightmare scenes of my childhood.

I live with chronic daily debilitating fatigue. My days, especially the bad ones, are lived by ounces of energy, each one measured out carefully for the activities that are absolutely necessary. And in between, I am most often resting with my eyes closed or sleeping. It’s the only way I can survive my symptoms and get through my day.

The frequent periods of rest sometimes make my life feel just like the flickering scenes in my nightmares: small glimpses before my eyes again close and everything goes black. I sleep through family dinners, social gatherings with friends, evenings with my children, and would-be workdays. I close my eyes in the middle of church, for brief periods at my desk at work, in the middle of supper. My whole existence feels, at times, like a quick snapshot before everything is empty and dark again.

And just like in my dreams, the “plot” moves on while I’m away. I miss out on conversations, changes, and developments that occur. I play catch-up on things that have happened without me, and try to suppress the feeling of loss over things I’ve missed out on altogether. It can be a lonely, isolating, sad experience.

I know I’m not alone in this. Many of us in the chronic illness community feel we miss out on many things in life, and not just because of fatigue. My celiac disease diagnosis keeps me from enjoying the foods everyone else is eating at carry-ins and birthday parties, and dictates which restaurants I can eat at or where I can travel. We miss out on activities we love, such as biking, hiking, walking, or dancing because of chronic pain or fatigue. We live our lives in the little margins of what’s possible, the slivers of light before our illness shuts us off from the world again.

There’s no easy solution, and, to be honest, what we often need isn’t to be “fixed.” For me, it helps to know I’m not the only one living in the margins, seeing my world through my fluttering eyelids. If others are living this too, then I’m not alone. And that makes the darkness less lonely.