Overcoming my fear of the future after a lupus diagnosis
Processing the uncertainty of life with a chronic illness takes time and effort
When I was diagnosed with lupus seven years ago, I wanted nothing more than to be in remission. But I longed for it knowing that it would likely ebb and flow. I believed I would spend a significant portion of my life chasing it, and once I achieved it, I’d probably lose it again. Then I’d have to start the race over again from square one.
My new companion came with a long list of potential symptoms and no way of knowing if or when they might make themselves known. For several years after my diagnosis, my ambitions were fueled by a different kind of fire. I felt a new sense of urgency. I didn’t know how good my quality of life would be in five, 10, or 15 years. I was only certain about how I felt in the present. So the time to do things was while I had the chance and the energy.
That old Joni Mitchell lyric is accurate: “You don’t know what you’ve got till it’s gone.” It wasn’t until after my diagnosis that I realized just how easy my childhood and teenage years had been. I didn’t acknowledge what I had until it was too late and too far out of reach. With that epiphany on replay in my head for months after my diagnosis, I vowed never again to take the present for granted.
I envisioned lupus to be lurking around a corner, just waiting for me to take a wrong turn. I didn’t want to wake up one day and wish I’d done more in my life. If I could guarantee only how I felt in the moment, I had to make the most of it.
In that era of my life, my mortality weighed heavy on my mind. I looked at my life and all I wanted to achieve and no longer felt certain about my timeline. Scared that I didn’t have the same amount of time I once did, I forced everything feasible into the now.
Slowing down the pace
I spent a considerable amount of time feeling like a video game character. You know the one — that crazy little monkey running around with a panicked expression and a ticking time bomb. Like the monkey, I felt like it was only a matter of time before I had an explosion on my hands. But there was no timer. There was no way of knowing how long I had before I was left looking like a troll doll with a face full of ash.
But packing more into my days and weeks didn’t always make me feel more accomplished. It did, however, make me feel more tired. In my head, I intended to make up for the future, but I mostly just aggravated my fatigue in the present.
Things have changed a little since 2016. OK, that’s an understatement, they’ve changed a lot. One of the biggest changes is the pace at which I want to live my life.
So what’s the difference between 20-year-old Kristiana and the 27-year-old me? Acceptance. I’m no longer fearfully peering around corners. Part of getting older is recognizing that worrying is a waste of precious energy. I’ve learned that there is real liberation in relinquishing control and taking the days as they come. What is destined for me will come whether I like it or not. I just have to trust that I’ll be ready for it.
To paraphrase one of my favorite quotes, so far I’ve survived 100% of my worst days. I’m doing great!
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.