As the summer heat prompts a lupus flare, I choose to reflect
It's easy to be mad at my body, but here's what I'm doing instead
Summer always puts me on high alert, because historically, it’s the time of year when I go into a major lupus flare. Like many lupus patients, sun and heat are my top triggers.
In my area of the Carolinas, daily temperatures have felt like 100 degrees or more lately. Like clockwork, I ended up in the hospital with yet another flare — almost the same week as last year. This uninvited guest seems to love to make an appearance in June, casting a shadow over what should be fun summer days.
Because I tend to feel so amazing in the cooler months, I almost forget that I’m living with this illness. Summer has become a bittersweet season for me and a reminder that I’m still vulnerable.
It’s no secret that lupus makes us navigate an unpredictable journey. Over time, through the ebbs and flows, we learn to savor the periods of wellness when our bodies feel more like a friend than an adversary. But sometimes, after a season of stability, the sudden onset of a flare can shatter our peace and prompt a storm of emotions.
While the crushing fatigue, pain, and sheer exhaustion typically stop me in my tracks, the emotional pain that people can’t see is what affects me the most.
As I lay in a hospital bed during my most recent flare, I grappled with a deep sense of despair. It came out of nowhere, following an amazing vacation I’d just had. I’d been on a high and was proud of myself for all of the traveling I’d done and the festivities I’d taken part in. I briefly felt like I’d been transported back in time, to my days before diagnosis when I was just living my life.
But a storm was brewing inside me, and as I sat there looking around the cold, white hospital room, my brain taunted me: “You’ll never get over this. You can’t even go on vacation without getting sick. This is what the rest of your life will be like.”
Meanwhile, as I looked out the window, I saw sunshine and people going about their lives. It made me feel incredibly sad and lonely.
Dark days and important reminders
During these moments of darkness, it’s easy to feel defeated. The mental and emotional toll of a flare is overwhelming, which makes it difficult to see beyond the immediate pain and frustration. We patients often find ourselves questioning our resilience, doubting our strength, and fearing that this time, the flare might break us.
I’m grateful that my strong faith and a solid group of friends always pull me away from the dark thoughts. I try to remind myself of all of the wins I’ve had over the years, and how by getting to know my body better and taking better care of it, I’ve been able to improve my health.
Just a few years ago, I never would’ve been able to travel for three straight weeks! Back then, even traveling for a day or two would’ve put me over the edge.
I reminded myself how, after years of trying different medications and other therapies, I’ve been able to have longer stretches of good days.
As I found solace in the quiet moments, a shift began to occur. While initially suffocating, the forced stillness became a space for reflection. I realized that these quiet times, as unwelcome as they may be, offer a rare opportunity to reconnect with my body and soul. These moments remind me of the importance of listening to my body, of how much I’ve been through and survived, and of how I need to make a mental note of the signals my body sends me.
In the silence, I began to understand that my body wasn’t betraying me but rather pleading for attention. The lupus flare wasn’t a punishment but a plea for rest and recuperation. This realization, while simple, was profound. It shifted my perspective from frustration to acceptance, and from despair to determination.
Today, I’m back home recuperating and taking a long, hard look at my priorities. I remind myself to avoid jumping back in full force as I always do the minute I feel somewhat “normal.” My body fights so hard for me every day that I have to respect and love it with the same fervor as it does me.
If you’re going through a flare, please remember two things: You are not alone, and this moment won’t last forever. It might not feel that way now, but you’ll have a breakthrough, just up ahead on the journey that is lupus.
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.
About the Author
Comments
Candace
Feeling despair is hard to shake off especially after hospitalization. Marisa, Thank you for sharing and remind us that we will have a breakthrough because we surely will.