Spring brings warmer weather, and a bigger risk of a lupus flare-up
As the world comes alive, photosensitivity requires me to retreat
Written by |
Every year, as winter begins to fade away and the first hot day takes root, I feel a quiet anxiety about what comes next. For many people, spring is like a rebirth. It brings longer evenings, more sunshine, and the promise of beach trips, boat days, and outdoor concerts.
But for many of us living with autoimmune diseases like lupus, spring carries a different kind of anticipation. It’s not a time of excitement, but of preparation.
Like clockwork, at some point between April and June each year, my body goes off brand. It doesn’t matter how much I try to prepare at the end of winter, telling myself this will be the year I stay ahead of it, pace myself better, rest more, and plan smarter. More often than not, I enter this season already depleted, already on the edge of a flare I can’t quite outrun. This year hasn’t been any different, as our weather in the Carolinas went from the 40s and 50s F to 90 F overnight. This transition also coincided with the heartbreaking death of my mother-in-law.
I’ve previously written about how losing immediate family members can trigger a lupus flare — the stress, lack of sleep, crying, and heartbreak spurring on symptoms. Combine this with an extraordinarily hot week, and it was the perfect storm to kick off this already difficult season.
Spring and summer look different for me
For many of us with lupus, the sun and heat aren’t just uncomfortable; they can actually be triggering. Ultraviolet light can provoke the immune system in lupus patients, leading to increased inflammation, worsening symptoms, and, in some cases, full systemic flares. Not everyone with lupus experiences photosensitivity, but one study found that 83% of patients have some form of it. For me, the effects are profound. It’s the kind of flare that demands everything in my life come to a complete stop.
And so, while the world comes alive outside, I retreat.
As I’ve matured, I’ve noticed this season brings a particular kind of grief. It’s not just physical; it’s emotional and psychological, too. I watch from the sidelines as friends plan vacations, go hiking and camping, and dance outdoors on warm nights. And I am genuinely happy for them. But there’s also a quiet ache in knowing that my version of spring and summer looks very different.
Mine is slower. Smaller. More contained. Usually indoors and in the presence of full-blast air conditioning.
It often feels like hibernation in reverse.
What’s hardest, even after decades of living this way, is that it doesn’t necessarily get easier. You would think I’d be used to it by now. But the truth is, I still love life in big, vibrant ways. I still want to say yes to everything. I still crave connection, spontaneity, and movement.
But lupus forces me into a constant negotiation between what I want and what my body will allow. Anticipating the challenges and limitations takes a mental toll. And while I still struggle to hold space for both hope and realism, I’ve learned that balance isn’t something we find once. It’s something we create over and over in different seasons of life.
For me, this season has become less about resistance and more about gentle adaptation. It’s asking, “How can I still experience beauty, joy, and life — just differently?” This year, that might look like traveling to cooler places. It might mean evening walks instead of midday outings, enclosed patios instead of open beaches, and time spent in my basement art room rather than scouring art galleries.
It’s not the same. But these are still things I enjoy; they are still life-giving. And maybe that’s the quiet resilience of living with lupus. We learn to reimagine our lives in ways that honor both our limitations and our longing.
If you’re feeling the same seasonal anxiety, I want you to know you’re not alone. There is nothing weak about grieving what your body cannot do. There is nothing wrong with needing to step back when the world is stepping forward. This disease is physical, yes. But it is also deeply emotional and complex.
So, as we get deeper into spring, I’m trying to meet myself with a little more compassion. To find new ways to live fully, even if they don’t look like how I once imagined.
Spring may not feel like freedom to me. But it can still hold moments of beauty.
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.
Leave a comment
Fill in the required fields to post. Your email address will not be published.