When the Body Betrays, the Spirit Rises
Marisa Zeppieri: A Voice for the Voiceless, A Light in the Darkness

We are incredibly honored to welcome Marisa Zeppieri as the latest cover woman for Rochester Woman Online—a woman whose story exemplifies strength, advocacy, and purpose. As we mark Lupus Awareness Month, it is only fitting that we celebrate someone who has not only lived with this invisible illness for decades, but who has transformed her pain into a platform, her suffering into strength, and her silence into a rallying cry for millions.

In April 2025, Marisa took the stage at TEDx Charleston and delivered a groundbreaking talk titled “When Illness Is Invisible, Let Curiosity Lead.” Standing confidently in the glow of that iconic red dot, she gave voice to a lifetime of invisible battles—battles waged behind hospital walls, in late-night emergency rooms, and in the quiet corners of everyday life where chronic illness too often goes unseen and misunderstood. Her message resonated far beyond that auditorium: empathy is not optional, and visibility can save lives.

But Marisa’s journey began long before the TEDx spotlight. Diagnosed with systemic lupus erythematosus after years of misdiagnoses and medical gaslighting, her story is one of resilience forged in fire. It’s a story about finding purpose amid pain, building community where isolation once lived, and using the written word and public voice to spark radical compassion. Whether through her award-winning memoir Chronically Fabulous, her global nonprofit LupusChick, or her new podcast I’d Like to Unsubscribe, Marisa is leading a movement—one where chronic illness warriors reclaim their voices and rewrite the narrative.

As you turn the pages of this issue, you’ll witness the full arc of Marisa’s remarkable journey—from childhood fog to national stage—and the legacy she’s building for others just beginning their battle. She is more than a survivor; she is a storyteller, a leader, and a change-maker. And this month, we proudly shine the spotlight on her.

On a dewy April morning in Charleston, South Carolina, the solitary red dot of the TEDx stage shone like a lighthouse for all those lost to silent suffering and chronic illness. Before that hushed crowd, stood Marisa Zeppieri, the very picture of health—radiant, composed, and impossibly strong. Yet every step she took to that microphone was buoyed by decades of hidden battles, fought in the shadows of skepticism and misunderstanding. Her message that day cut through the silence: when illness is invisible, curiosity must replace judgment. It’s a message she has been trying to voice since her childhood.
Childhood in the Fog

Imagine living inside a cloud that never lifts. At just eight years old, Marisa found herself trapped in a fog of unrelenting fatigue, fevers, sores, rashes and joint pain. In the 1980s, lupus wasn’t a household word—and certainly not suspected in a child. Doctors weren’t talking about it, let alone testing for it. Time and again, well-meaning doctors dismissed her agony as growing pains, allergies or effects of the hot Florida sun. Nights passed in fevered hallucinations, mornings dawned with swollen fingers and knees, and body pain, and each unanswered question deepened her isolation. Looked at from the outside, she seemed fine; but inside, her body was at war.

Collision and Revelation
Fueled by her own suffering, Marisa enrolled in nursing school after high school, determined to help others navigate pain she knew all too well. It wasn’t an easy road, but with no answers in sight, Marisa made the best of every day and learned how to slow down a bit when her body experienced symptoms. But destiny intervened in the form of a devastating accident: Marisa, struck by a pickup truck speeding around 55 m.p.h., spent nearly a year recovering, navigating the maze of hospitals and rehabilitation centers. As she relearned to walk again and her organs recovered from the crash, astute physicians noticed a familiar shadow—her childhood symptoms, resurrected. But this time, the symptoms weren’t showing up erratically – instead, they showed themselves all at once. Exhaustive blood panels, imaging studies, and the persistence of a curious rheumatologist finally broke the mystery: systemic lupus erythematosus. In that moment, Marisa’s world split in two—before diagnosis, a hazy swirl of confusion; after diagnosis, a new reality shaped by both challenge and unexpected possibility.

Forged in Fire
Though she never fulfilled her dream of donning scrubs as a practicing nurse, Marisa emerged from the crucible of illness as something even more formidable: a chronic illness warrior and a storyteller with a cause. Flares that brought small strokes, blood clots, vasculitis, and even a brain aneurysm could have crushed her spirit. Instead, each hospital stay—more than thirty-five in total—became a lesson in resilience. “Every relapse,” she says, “was another chance to deepen my compassion. And while I wasn’t a nurse in the traditional way, sharing my story and being a light for others suffering was still helping people, just in an unexpected format.”

Armed with pens rather than scalpels, she translated her ordeal into articles for major media outlets spanning from Dr. OZ and Glamour to Al Jazeera and Huffington Post, offering readers a raw, unfiltered look at life inside the autoimmune battleground. Her hope through sharing her life through words was that those who were bed or hospital-bound around the world would know they aren’t alone, and that this was just a season of life that wouldn’t last forever.

Centering Community
Out of her personal struggle sprung another path to helping others – LupusChick. What initially began as a humble blog and Facebook group, blossomed into a nonprofit that now embraces hundreds of thousands across the globe every month. Here, patients and caregivers find not only medical resources and coping strategies but also a well of empathy from those who have walked the same rocky path.

Understanding that many chro0nic illness diagnoses strike during formative college or childbearing years, she prioritized education and support—so much so that LupusChick has awarded nineteen college scholarships to students threatened by the weight of chronic disease. Each scholarship is a declaration to those struggling: your dreams still matter.

The Pen as a Beacon
A robust journalism career over the past two decades taught Marisa to sift through jargon and illuminate the human heart at the center of every story. In Chronically Fabulous, her award-winning memoir, she invites readers into her most vulnerable moments—celebrating small triumphs and confronting despair head-on. She talks about a variety of subjects that chronic illness impacts – intimacy, self-esteem, finance, career and relationships.

Her work in the chronic illness community even caught the eye of Lady Gaga – who is familiar with lupus because of family members with the diagnosis. Gaga’s nonprofit reached out to Marisa and featured her story as the 35th chapter in Channel Kindness, Gaga’s first anthology that focuses on spreading messages of empathy, proving that acts of simple understanding can ripple outward, igniting change.

Claiming the Red Dot
Though she has worked tirelessly in the world of chronic illness and disability for two decades now, Marisa’s crowning moment arrived in April 2025. Standing on that legendary red dot—a symbol of curiosity and illumination—she delivered her first TEDx Talk, “When Illness Is Invisible, Let Curiosity Lead.” She laid bare startling truths: one in three Americans battles a chronic disease, yet patients endure an average five-year labyrinth before accurate diagnosis. At that microphone, she declared that compassion must fill the silent spaces where symptoms cannot be seen, urging listeners to ask, “What am I not seeing about this person’s story? And even further, how can I help?” In those questions lies the bridge between unseen pain and genuine care.

A Rallying Cry for Change
Marisa’s journey from the fog of childhood pain to the crimson glow of the TEDx stage is more than personal triumph—it’s a clarion call. She challenges the medical world to listen more deeply, research more fervently, and show more empathy. She dares us all—patients and allies alike—to replace doubt with curiosity, isolation with community, and helplessness with action.

As she took her final bow, she left us with more than hope; she left us with a mission: to see beyond the surface, to ask the unseen question, and to keep curiosity alive in our everyday lives. In a world quick to judge what it cannot see, her story is a beacon—beckoning us to step closer, listen harder, and let curiosity lead the way.

Beyond the Stage: Unsubscribing from Limitation
Marisa’s advocacy didn’t end with the audiences’ applause at TED. In tandem with co-host Brittany Walker, she launched the I’d Like to Unsubscribe Podcast earlier this year, a lifeline teaching listeners how to “unsubscribe” from toxic thoughts and behaviors that chain them to grief and stagnation. With candid conversations and practical tools, they guide chronic illness warriors toward purpose, joy, and unwavering hope. Available on every major streaming service, I’d Like to Unsubscribe reminds us that liberation begins in the mind.

Ultimately, Marisa’s journey illuminates a powerful truth for all of us to remember: from the depths of our most private struggles can emerge the brightest beacons of hope. Her resilience reminds us that when we choose empathy over indifference and community over solitude, we transform suffering into solidarity. May her story embolden us all to see beyond the visible, to ask the questions that matter, and to stand beside every silent fighter—so that no one’s pain remains unheard and every soul rediscovers its strength.

You can view her Tedx Talk here: https://www.youtube.com/watch?v=Dw__mb9fNB8
You can learn more about Marisa at LupusChick.com and at @lupuschickofficial and @idliketounsubscribe on Instagram