Lupus Triggers and Flare-ups: A Survival Guide for the Newly Diagnosed
When you are first diagnosed with a chronic illness or autoimmune disease, it can feel as though your body has become an enigma—something once familiar and dependable now shrouded in uncertainty. Every ache, twinge, or wave of fatigue can leave you questioning what’s happening beneath the surface. Amid this period of adjustment, new terminology begins to infiltrate our world. Among these new words that often emerge in this learning curve is “trigger.” If you’re new to the chronic illness world, you might be unfamiliar with the concept and its significance. But understanding what triggers are, how to identify them, and how to mitigate their impact can be a transformative step in managing your health and improving your quality of life.
What Are Triggers?
In the context of autoimmune diseases, triggers are external or internal factors that provoke symptoms or worsen existing conditions. For the sake of this article, we will discuss two specific types of triggers. First, for many, the onset of their illness can often be traced back to a specific trigger. This could be a major event such as a severe illness, pregnancy, physical trauma, or even an exceptionally stressful period in life like a divorce or death in the family. While these events don’t necessarily cause the disease, they often act as catalysts in those who are genetically predisposed for certain diseases, essentially flipping the switch on a dormant condition.
As time progresses, there is another type of trigger to pay attention to. Patients typically begin to notice smaller, recurring triggers that exacerbate their symptoms. These can range from environmental factors like heat or sun/UV light exposure to dietary choices, medications, or emotional stress. Learning to identify these triggers is crucial for managing your health effectively.
Recognizing Triggers Over Time
Recognizing triggers isn’t something that happens overnight. It’s a gradual process that involves observing patterns in your body’s reactions. When I was diagnosed with lupus over two decades ago, technology wasn’t as accessible as it is today. There were no apps or digital tools to help track symptoms, so I resorted to the simple method of keeping handwritten notes. Every day, I documented the following:
My symptoms and their severity
Any new symptoms that emerged
Stressful events or emotional outbursts
How much I slept at night and if I napped during the day
Time spent in the sun or heat
Foods and drinks consumed
Medications or supplements I was taking
If my menstrual cycle was about to begin
After a year of detailed tracking, patterns began to emerge. I noticed that spending time in the sun and heat, experiencing stress, two or more nights of little sleep, or being on the cusp of my menstrual cycle were consistent precursors to my flares. These flares often left me bedbound for days or weeks and required an increase in medication in many instances. Sun and heat were two of my greatest triggers at the time, and living in South Florida during this period of my life, if I spent more than 15 minutes in direct sunlight with high temperatures, many times I would find myself in the ER because of severe and sudden symptoms. These insights were life-changing, as it allowed me to take proactive steps to minimize these triggers.
Today, there are apps and digital tools available like Folia Health that make tracking symptoms and flares much easier. Whether you prefer technology or the tactile experience of handwritten notes, maintaining a daily record is one of the most effective ways to identify your personal triggers over a period of time.
Mitigating the Impact of Triggers
Once you’ve identified your triggers, the next step is finding ways to reduce their impact. Some triggers are easier to address than others. For instance:
Environmental triggers: If sun exposure is a problem, wearing protective clothing and using sunscreen can help, as well as limiting time spent outdoors during the hottest times of the day.
Dietary triggers: Eliminating foods that provoke symptoms can significantly reduce flare-ups.
Medication triggers: Work closely with your healthcare provider to adjust or change medications if they are contributing to symptoms.
Stress, however, is a trigger that’s often harder to manage. While it may not be possible to eliminate stress entirely, learning to cope with it is crucial. Techniques such as meditation, deep breathing exercises, yoga, and even short walks can help calm your body and mind. Personally, I use art and music therapy as my main two sources of reducing stress, but in times I am stuck in bed because of a flare, I use binaural beats with my headphones to calm my body down. Also, prioritizing self-care and setting boundaries to reduce unnecessary stressors can also make a significant difference.
The Power of Awareness
Learning to identify and manage triggers can feel like reclaiming a sense of control over your life. It’s not about limiting yourself but about making choices that prioritize your health and well-being. Recognizing that certain activities, foods, or situations might need to be avoided or adjusted isn’t a restriction—it’s a step toward living more comfortably and with fewer interruptions caused by flares.
Moving Forward with Confidence
If you’re feeling overwhelmed, know that you’re not alone. The journey of understanding your illness and its triggers is deeply personal, but it’s also one that countless others have navigated. Here are some tips to guide you:
Take the First Step: Begin with simple tracking of your day’s events. Over time, the patterns will become clearer.
Stay Informed: Work closely with your healthcare provider to understand how your specific illness might interact with triggers.
Seek Support: Join support groups or online communities where you can share experiences and learn from others.
Be Patient: It takes time to recognize and manage triggers effectively. Give yourself grace during this process. Also, as your body changes and ages, your triggers may also change.
Prioritize Self-Care: Regularly check in with your physical and emotional health. I know it is easier said than done, but sometimes, rest and self-compassion are the best tools for prevention.
Understanding and managing triggers is an ongoing process, but it’s one that can help you live with greater ease and fewer disruptions. Armed with knowledge and the willingness to adapt, you can cultivate a life that balances your needs with your aspirations.
About the Author:
Marisa Zeppieri is a former journalist, Mrs. New York 2015, author of the award-winning memoir, Chronically Fabulous, and the founder of global 501c3, LupusChick. Originally from New York, she currently calls the mountains of the Carolinas home, where she enjoys cooking, reading, and painting.
