By: Arthur Brown
When life hands you challenge after brutal challenge, most people might find it difficult to keep going. Ebonie Robinson, however, chose to write.
In My Lupus Journey Journal, Robinson shares her deeply personal story in a candid and heartfelt account of her long-standing battle with lupus and other rare medical conditions. But this isn’t just a book about illness—it’s a narrative of resilience, motherhood, and a strong desire to live.
Diagnosed with Systemic Lupus Erythematosus (SLE) in her early 20s, Robinson’s body began to fight against itself. What followed were years of struggling with collapsed organs, seizures, temporary memory loss, and experiences that could have been life-threatening. She describes difficult allergic reactions, puzzling neurological symptoms, and the impact of being misunderstood or misdiagnosed by healthcare professionals. Yet amidst the uncertainty of hospital visits and unaddressed questions, Ebonie found a greater purpose: to inform, uplift, and support others facing similar invisible battles.
“I wanted others to know they’re not alone, they’re not ‘imagining’ things, and their voice is important,” Robinson explains.
For Robinson, writing wasn’t just a release—it was a means of survival. As a single mother of three, she had to manage her worsening health while fulfilling the responsibilities of raising her children. Her memoir doesn’t shy away from exploring the feelings of fear, guilt, and exhaustion that come with being a parent while living with a chronic illness. At the same time, it showcases her determination to remain present for her children, despite her body’s ongoing challenges.
The book also highlights a broader, often overlooked issue: the systemic obstacles women of color face in healthcare. Robinson’s experiences of being dismissed or invalidated by medical professionals resonate with many others, making her memoir both deeply personal and widely relatable. Her fight is not just for her life, but also for recognition, respect, and the opportunity to be heard in a system that frequently fails patients like her.
My Lupus Journey Journal is more than just a memoir—it serves as both a survival guide and a call to action. The pages read like intimate hospital-room reflections combined with heartfelt letters to the world. Robinson writes with remarkable honesty, but she also intersperses moments of humor and warmth, reminding readers that even in the darkest times, humanity and hope still persist. She refuses to let her story be one of pity; instead, it is one of empowerment and truth-telling.
“Too many people suffer in silence,” Robinson says. “If sharing my story helps just one person feel seen, then everything I’ve been through has purpose.”
The book has already connected with readers who live with chronic illnesses, as well as caregivers and advocates. Many describe it as both heartbreaking and inspiring—a reflection of the strength required to navigate a life where every day can feel like a struggle. Robinson’s openness fosters a sense of connection, offering others the reassurance that their pain is valid and their voices are meaningful.
In a world where chronic illness is often invisible, Robinson’s work brings it to the forefront. She doesn’t shy away from sharing the harsh realities of lupus, but she also refuses to let it define her. Instead, she uses her experiences as a source of inspiration for others on similar journeys. By openly discussing her challenges, she transforms her struggles into purpose.
At its core, My Lupus Journey Journal is about resilience—the kind that is raw, imperfect, and deeply human. It’s the story of a woman who refused to be silenced, who chose to document her truth, and who continues to fight not only for herself but for everyone who has ever felt overlooked in their own battle with illness.
For those seeking hope, validation, or simply a tale of extraordinary courage, Ebonie Robinson’s memoir is definitely worth reading.
My Lupus Journey Journal is available now on Amazon.
