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“Even in the depths of despair, there is always hope” – Ebony’s story
My name is Ebony Hart. I am a 24 year old communications manager at a large home building software company living in Perth.
Growing up, I never knew a life outside of constant pain and exhaustion. Every day was a battle against an invisible enemy that consumed my body and my mind. While other kids were running and playing, I was weighed down by fatigue and discomfort, wondering why I didn’t feel normal. My reality was a cycle of relentless cramps, unexplained weight loss, and endless doctor’s visits that led to misdiagnoses and frustration.
In high school, while my friends worried about exams and social events, I was struggling to maintain even a semblance of normalcy. At a mere 34 kilos, my body was frail, and I hadn’t even started my period, which only added to my growing concern and isolation. I vividly remember the night my life changed forever. The pain in my stomach was so intense that it was visible, and my parents rushed me to the emergency room. That night, as I lay in the hospital bed, I couldn’t fathom the journey that lay ahead.
The failed ultrasound and the subsequent CT scan revealed the harsh truth: severe Crohn’s disease had ravaged my small and large bowel, as well as the entrance to my stomach. The months that followed were a blur of hospital stays, treatments, and a “water-only” diet that left me physically weak and mentally drained. TPN became my lifeline, a stark reminder of my battle. I missed out on so much – including the chance to graduate and finish school with my peers. Yet, amidst this turmoil, at the beginning of the year I clung to my studies, determined to carve out a future for myself. By some miracle, I secured early university admission just before being admitted to the hospital midway through the year.
The physical pain was immense, but the emotional toll was equally hard. I had to adapt to life with a stoma bag for nine months, a constant reminder of my struggle. Yet, this grueling journey forged a strength within me that I never knew existed. Through the tireless care of my gastroenterologist, Dr. Waters, and my surgeon, Dr. Makin, I began to see a glimmer of hope. For the first time, thanks to amazing medication, I experienced what it felt like to be “normal.”
Living with an invisible illness is a battle that extends beyond the physical. No one will understand what it’s like until they go through it, or see someone they love go through it. Fatigue and other related issues are a constant presence, but I am endlessly grateful for the life I have now. My experience has taught me resilience, perseverance, and the power of hope. Despite the hardships, I’ve built a fulfilling life. I’ve graduated with distinctions in finance at UWA, work full-time, and manage my health with a balanced approach.
My story is not just about surviving Crohn’s; it’s about thriving despite it. It’s about finding light in the darkest of times and believing in a future beyond the pain. I hope my journey inspires others facing similar battles to keep pushing forward, to find strength in their struggle, and to know that even in the depths of despair, there is always hope.
I know that 17-year-old me, and more important, my loved ones who had to watch me suffer, would have done anything to hear how a story like mine has turned out.