From the outside, my story doesn’t start with illness, it starts with motion. Growing up, I was always moving, balancing dance, volleyball, volunteering, and whatever came next. Energy was something I never questioned: it was just part of who I was.
That began to shift around 2017 in ways I couldn’t explain. At the time, I was in college, living on my own in a new city, navigating a new stage of life that was meant to feel exciting and full of possibilities, but instead became marked by uncertainty. Chronic migraines were now part of my routine, and activities that once felt effortless, like climbing a flight of stairs, suddenly felt overwhelming. Without clear answers, I found myself trying to keep up with the pace of a life that no longer matched how I felt, carrying symptoms that didn’t have a clear explanation, and experiences that didn’t seem “normal.”
The turning point came in August 2023. While spending the summer in Greece with family, my body shut down. I was bedridden for days, sleeping almost nonstop, with a fever that wouldn’t break. When I returned home, I went straight to the doctor, expecting urgency, clarity. Instead, I was met with uncertainty and dismissal: maybe it was the flu, maybe food poisoning.
But I knew my body. And after years of unexplained symptoms, it was clear this wasn’t temporary.
What followed was a journey many patients with undiagnosed chronic illness know too well – one of atypical symptoms, numerous appointments, conflicting opinions, multiple tests, and inconclusive results. While 2023 brought clarity, my diagnosis was years in the making, shaped by nearly eight years of symptoms and ongoing uncertainty. This experience is not unique. Millions of people living with chronic conditions face similarly long and fragmented paths to diagnosis, often influenced by gaps in awareness and access to appropriate testing.
After nine months, five doctors, and countless tests, I received an answer. I was diagnosed with systemic lupus erythematosus (SLE). Even with a diagnosis, things did not suddenly feel easier. The emotional weight of prolonged uncertainty, combined with learning how to manage a chronic illness, was overwhelming. Trying to explain Lupus to others, especially those unfamiliar with autoimmune diseases, added another layer of exhaustion.
And yet, throughout this process, something grounded me: my work.
For years, my professional life has centered on patient advocacy – amplifying voices, uncovering lived experiences, and helping ensure those perspectives shape healthcare decisions. During my own journey, I found myself leaning into the very principles I’ve championed with patients: advocate for yourself, trust your instincts, and come prepared. Those weren’t just professional beliefs anymore; they became personal survival tools.
In many ways, this experience has brought purpose. Lupus has strengthened my empathy, sharpened my voice, and reinforced the impact of my work.
I approach every VOZ Advisors project with a dual lens: as both an advocacy professional and a patient. Perspective isn’t something you can learn from a textbook – it’s lived, felt, and carried into every conversation. Advocacy centers on elevating patient voices. Through my own experience, its meaning deepened, bringing a more personal understanding of the connection, empathy, and support needed so that no patient feels dismissed, unheard, or alone in their search for answers.
Since my diagnosis, it has taken time to find a sense of stability. While I’m not in remission and continue to navigate ongoing symptoms, I’ve come to understand that Lupus may be part of my life, but it doesn’t define my limits. Instead, it has sharpened my purpose and fuels my commitment to the communities I serve through my work, reminding me every day why patient voices aren’t just important – they are essential.
– Paula Boccalon, Senior Associate, Client Services
