The Uninvited Guest - Living with Lupus: A Journey of Resilience, Art, and Healing
When people ask me what it's like to have lupus, I tell them it's like navigating life with an uninvited guest who never leaves. Lupus is a chronic autoimmune disease where the immune system mistakenly attacks healthy tissue, causing inflammation, pain, and damage throughout the body. There is no cure for lupus, only management of symptoms and flares through various treatments and medications.
Lupus has shaped not just my daily life, but also the way I create and how I run my art business. It’s taught me patience, presence, and resilience — qualities I bring into every layer of my encaustic work.
Origins and Understanding
"How did you get it?" is often the first question people ask. The truth is that lupus's origins are as complex as the disease itself. While doctors point to a mix of genetic and environmental factors, my personal journey led me to explore potential triggers such as environmental toxins, mold exposure, retained toxic metals, and trauma.
The process of uncovering and understanding these factors became part of my healing journey, showing me that our bodies hold onto experiences in ways we might not initially understand.
Like many with chronic illness, I've learned that each person's story is uniquely their own. My experience with environmental factors and how trauma can impact our physical health shaped my understanding of this disease, teaching me that healing requires looking at the whole picture — not just treating symptoms, but understanding their potential sources.
It's a deeply personal journey of discovery, and what resonates for one person may be different for another.
Daily Life with Lupus
Every day is unpredictable. Some days, exhaustion feels like a heavy weight. Other times, my body speaks an entirely different language — one of intense joint pain, facial rashes, weakness, vision problems, breathlessness, or a mental fog so thick I struggle to remember how to make coffee or even make the bed.
Flare-ups arrive unexpectedly, often triggered by stress, secondhand smoke, sun exposure, or something as simple as a common cold.
Living with Multiple Challenges
Living with both lupus and a traumatic brain injury adds layers of complexity to daily life. The cognitive difficulties from both conditions can overlap and compound each other.
Sometimes I have trouble finding the right words, experience memory loss, struggle to follow conversations, or forget what I was doing just seconds ago.
Managing the Journey
Managing lupus requires you to be your own advocate and do your own research. It's a balance of maintaining regular medical care through appointments and blood monitoring, following daily and weekly medication routines that have become second nature, paying careful attention to diet and environmental triggers, and scheduling regular rest periods — even on good days.
Finding Strength
The emotional part of lupus is equally challenging. There are moments when I feel isolated, trying to explain an invisible illness to those who can't see it. But I've found strength in unexpected places. My weekly biological injections, once a source of anxiety, have become a ritual of self-care. Most importantly, it means learning to schedule rest periods even on good days — a practice that once felt like surrender but now feels like wisdom.
Art as a Mirror
My work as an encaustic artist has become both a mirror and a metaphor for living with chronic illness. The process demands patience as each layer of heated beeswax must be carefully fused — too much heat transforms the medium entirely, too little fails to create the necessary bonds.
This balance reflects my daily life with lupus, where I must constantly gauge my energy and adjust my approach.
The translucent layers of wax tell their own story of chronic illness — some visible on the surface, others hidden deeper within. Just as I build depth in my artwork through successive layers, I've built resilience through experiences of adaptation and understanding. Sometimes, both in art and in life, I need to scrape back and begin again.
I've learned that beauty often emerges from these moments of starting over. The process of heating, applying, and fusing wax requires presence and mindfulness — qualities that have become essential in managing my health.
When Invisible Means Unbelievable
Perhaps one of the most challenging aspects of living with lupus and brain injury is facing the skepticism that comes with invisible illnesses. On my best days, when the medications are working and I've carefully managed my energy, I might look "perfectly healthy." These are often the days when well-meaning people say, "But you don't look sick" or "You must be feeling better now."
The journey to diagnosis was a maze of disbelief and dismissal. Like many with autoimmune conditions, I heard everything from "it's just stress" to "you're just depressed" to "she's faking it" to "it's just anxiety" before finally receiving a proper diagnosis. It can take years to receive a lupus diagnosis, seeing multiple doctors before getting answers.
What's even more damaging is when doctors write dismissive terms in your charts. These clinical labels follow you from doctor to doctor, affecting how future medical professionals view and treat you before they even meet you.
After seeing these terms and hearing dismissal so many times, you start to question yourself, and some family members start wondering if maybe they're right. But they're not — and getting a proper diagnosis finally validates what you knew all along: your symptoms are real.
Over time, I've learned that keeping detailed symptom journals, documenting flares with photos, and maintaining clear records of medical history and tests have become essential tools in advocating for my health.
Navigating Relationships
Living with lupus challenges not only your relationship with yourself but also reshapes your personal connections. Some days, even a gentle hug can feel overwhelming when joints are inflamed. Other times, the brain fog makes it difficult to express the depth of what I'm feeling.
My partner has learned to recognize the subtle signs of an approaching flare before I even know. Sometimes love means simply sitting in quiet companionship when the fog is too thick for words.
Family relationships often change too. There's a special kind of patience needed when explaining why you have to cancel plans despite looking "perfectly fine" yesterday. Some family members even turn against you, siding with each other and dismissing your symptoms, choosing to believe what's written in medical records over your lived experience — and that hurts the most.
This challenge has also taught me something valuable: true empathy doesn't require visible evidence. Those who matter will believe you, support you, and stand by you even when they can't see your struggle. Their belief becomes a shelter in the storm of doubt, reminding you that your experience is valid, real, and worthy of care and understanding.
Spiritual Healing
The most profound lesson lupus has taught me came on a difficult day last summer. I was sitting outside, frustrated by having a flare and having to cancel plans yet again, when a butterfly landed in front of me.
At that moment, I felt it was my mom letting me know she was still here and that everything was going to be okay. But it also occurred to me that healing doesn't require constant motion — sometimes, it's found in moments of stillness.
Finding Meaning in the Journey
Lupus may be an uninvited guest in my life, but it has also been a teacher — one that has shown me the power of resilience, patience, and self-advocacy.
While the road is often unpredictable, I've found that healing isn’t just about managing symptoms; it’s about finding moments of beauty, stillness, and purpose along the way.
Through my art, I’ve learned that even when life feels like it's melting away, there is always the possibility of creating something new. Whether through the layers of encaustic wax or the layers of experience that shape us, I continue to build, adapt, and find meaning in each moment.
To anyone walking a similar path — whether facing lupus, brain injury, or another invisible challenge — you are not alone. Your journey is valid, your voice matters, and there is strength in sharing our stories.
If my words resonate with you, I invite you to connect, share your experience, or simply visit my website and join my email community here.
Your story matters, and you are not alone.
💕 Alisa Marie
Disclaimer: This is my personal experience. Every person’s journey with lupus is unique. This is not medical advice — please consult a healthcare professional for guidance.