Recognizing patterns is one of my greatest weapons against lupus flares

If you live with lupus, you’ve probably asked yourself the same question I’ve asked hundreds of times: “Why did these symptoms suddenly appear?”

Sometimes the answer was obvious. Other times, it felt like lupus symptoms had crashed into my life without warning. What I’ve learned over the past 20 years is this: Our bodies often whisper before they scream. The challenge is learning how to listen.

When I was diagnosed, I had no idea what my triggers were. Honestly, I barely understood what a trigger was. I was diagnosed before social media existed, so no one was making videos about the topic. One week, I would feel relatively OK, and the next, I’d be flattened by exhaustion, joint pain, fevers, dozens of mouth and nose sores, and rashes.

It seemed random and made my life feel chaotic, like I’d never have any control over my own body.

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That unpredictability was one of the hardest parts of living with lupus in those early years. Not knowing what was causing the symptoms, when they might appear, or what plans they might ruin created almost as much stress as the disease itself.

To add to my frustration, there were no symptom-tracking apps, wearable technology, or sophisticated health platforms back then. What I did have, however, was a notebook.

So I started writing things down: what I ate, drank, and which medications or supplements I took. I even tracked my sleep and naps, how much sun I got, the outside temperature, and any emotional stressors (like job stress or the loss of a loved one). In addition, I noted which symptoms were new each day and where I was in my menstrual cycle.

At first, it felt tedious. I had pages filled to the brim with a lot of data staring back at me. But then something fascinating happened: Patterns started to emerge.

Learning to identify my triggers

I realized that whenever I spent more than a few minutes in the sun, symptoms often followed shortly afterward. Sometimes it was overwhelming fatigue. Other times, it was joint pain, rashes, mouth sores, or an irregular heartbeat. One of the biggest patterns I noticed was how my symptoms often intensified three days before my menstrual cycle, and lessened one to two days into it. (I now understand how those swings are intertwined with hormones.)

Eventually, I even saw patterns emerge after periods of intense emotional stress. When my grandmother passed away, I cried harder than I ever had before. Within days, my body responded as if it had experienced a severe physical injury, even though it was my emotions that felt overwhelming.

That was one of the first times I truly understood that stress isn’t just emotional for people with autoimmune disease. And once I began recognizing those connections, everything changed. Not because I could eliminate every trigger, but because I could teach myself how to prepare for them.

I learned that many common lupus triggers are things we encounter every day, such as:

• Ultraviolet radiation and sunlight
• Heat and humidity
• Emotional stress
• Physical overexertion
• Lack of sleep
• Illness and infections
• Hormonal fluctuations
• Major life events and grief

The trigger itself isn’t always the problem. The pattern that follows is what matters. What do I mean by that exactly? Well, 10 minutes in direct sunlight and heat (two of my greatest triggers) will typically cause a full lupus flare, with symptoms occurring within hours. That’s my pattern. However, I have friends with lupus who can sit in direct sun all day without their symptoms flaring. That’s their pattern.

Your pattern might be something different. For instance, perhaps your fatigue skyrockets after three nights of poor sleep. Or maybe a week of nonstop obligations leads to increased pain and swelling.

When you start tracking those connections, you shift from feeling blindsided to feeling informed. Information is powerful.

But having this data doesn’t mean living in fear of every possible trigger. I still love to travel, and there is no way to completely avoid sunlight. I still spend time outdoors, but I typically plan my outings around cloudy, cold, or even rainy days.

Even with lupus, I will always celebrate milestones, attend events, and live my life. The goal isn’t avoidance, but implementing adjustments. That’s not giving in to lupus; it’s learning how to work with my body instead of constantly fighting against it.

If you’re newly diagnosed, please know that identifying triggers takes time. You are absolutely not failing or behind if you don’t have all the answers yet.

Learning your body’s language is an intimate process that can take months or even years. You’ll soon begin to notice that every small piece of information eventually builds a road map of your health journey. And your future self will thank you for noticing every declaration your body makes!

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.