By: Arthur Brown.
In a world where chronic pain is often invisible and medical systems are rarely built to understand it, Ebonie Robinson did something revolutionary: she told the truth.
In her breakout memoir, My Lupus Journey Journal, Robinson lifts the veil on her staggering, decades-long battle with autoimmune disease, rare disorders, and medical negligence, crafting a book that is both life-affirming and life-saving.
Her story isn’t just compelling, it’s devastating, miraculous, and deeply human.
Diagnosed with Systemic Lupus Erythematosus (SLE) in her early 20s, Ebonie’s world quickly shifted from raising her children and pursuing her career to fighting for her life daily. But lupus was only the beginning. What followed was a cascade of rare diagnoses, including Gitelman’s Syndrome, adrenal insufficiency, severe osteoporosis, and episodes of total memory loss.
Robinson’s memoir reads like a medical thriller, except it’s all real.
“I was being dismissed, ignored, thrown out of hospitals while my body was screaming for help,” she writes. “It was kill or be killed. And I refused to die silently.”
From being misdiagnosed and manhandled in ERs, to collapsing under her desk and waking up in hospital beds with no memory of how she got there, Robinson’s testimony calls attention to a reality far too many live: the trauma of being disbelieved in your own body.
But My Lupus Journey Journal is not a story of defeat. It’s one of relentless resilience. Told with unflinching honesty and poetic wit, Robinson doesn’t just recount her pain; she honors it, transforms it, and puts it to work helping others.
“This book is for the warriors,” she says. “The ones who are tired of being gaslit by their doctors, the mothers battling flare-ups while raising kids, and the patients who get sent home from the ER with nothing but shame and a shrug.”
Beyond its gripping narrative, the book is a powerful tool of advocacy, educating readers about lesser-known conditions and the systemic failures in healthcare, especially for Black women and other marginalized patients. Each chapter is a window into a rare and terrifying medical episode, but it’s also a lighthouse for those lost in their storms.
What sets this memoir apart isn’t just the storytelling; it’s the soul behind it. Despite every hospital stay, traumatic misdiagnosis, and near-death experience, Robinson never lost her humor, her heart, or her hope. She is a mother, a fighter, a believer, and now, an author reshaping how the world sees chronic illness.
Already gaining traction in the health and wellness communities, My Lupus Journey Journal is more than a memoir and a movement. A battle cry, a survival handbook, and it’s quickly becoming one of the most critical personal health narratives of the decade.
For those who feel unseen, unheard, or misunderstood, this is the book that says, “I see you. I lived it too.”
My Lupus Journey Journal by Ebonie Robinson is now available through AMZ Book Publishing and on Amazon. Follow Ebonie Robinson on social media and join the growing community of lupus warriors turning pain into power.
Disclaimer: This article is for informational purposes only and is not intended as medical advice. The personal experiences shared in Ebonie Robinson’s memoir are her own and may not represent the experiences of others with similar conditions. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
