Becoming Real: A Warrior Butterfly’s Journey
As a broadcast journalist for the past 26 years, I had the privilege of telling other people's stories. As an investigative journalist, I often exposed harsh truths. My instinct is to scratch beneath the surface and connect the dots, but I couldn't solve the most important mystery of my own life—a decade-long search for answers to chronic pain and symptoms that eroded both my career and who I thought I was.
That mystery was finally solved by the end of 2017, when I was diagnosed with Crohn’s Disease, an autoimmune condition. But by the time the diagnosis was made, I was at breaking point. Not only physically, but also emotionally.
Pain became my Prison
Pain isolates one. It makes the vastness of the world you live in feel small. Pain became like one of the people in my life—a travelling companion; a life partner; my shadow; my worst enemy. Like a criminal, it fettered my body and stole my freedom. I began to live a life completely isolated from the world I was once part of.
My journey with pain began in 2007. At the time, I was a television news journalist, and work days were long and intense. Specialists began searching for answers, but found none. At the end of that year, I resigned and became an investigative journalist and television producer. It was a demanding job and required me to work under constant strenuous deadlines.
In 2008, a rheumatologist diagnosed me with a chronic pain condition, but despite medication, the pain and other symptoms persisted. Over the nine years that followed, I was admitted to hospital multiple times for pain management, and my health deteriorated exponentially.
By 2017, I also developed other symptoms like stomach cramps, diarrhea, fever, unbearable body pain, memory loss and utter exhaustion. I could barely look after myself, and was bedridden for the biggest part of that year. I was in the darkest place I had ever been. Waking up each morning, knowing that I had to live through another day measuring the pain in milliseconds, was almost too much to bear.
By November that year, I completely collapsed and was admitted to hospital, where a gastroenterologist finally confirmed a diagnosis of severe Crohn's Disease.
Despite the despair, the new diagnosis brought hope. For the first time in a decade I had answers. And although my recovery process was extremely slow, and I weighed just 43 kg, I was fighting.
Becoming ‘Real’
It was during this time that my favourite children’s book, The Velveteen Rabbit by Margery Williams, really resonated with me. The story spoke to what I was experiencing—the slow, painful transformation of becoming someone new. Here is an extract from The Velveteen Rabbit:
“What is REAL?” asked the Rabbit one day, when they were lying side by side near the nursery fender, before Nana came to tidy the room. “Does it mean having things that buzz inside you and a stick-out handle?” “Real isn’t how you are made,” said the Skin Horse. “It’s a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real.” “Does it hurt?” asked the Rabbit. “Sometimes,” said the Skin Horse, for he was always truthful. “When you are Real you don’t mind being hurt.” “Does it happen all at once, like being wound up,” he asked, “or bit by bit?” “It doesn’t happen all at once,” said the Skin Horse. “You become. It takes a long time. That’s why it doesn’t often happen to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don’t matter at all, because once you are Real you can’t be ugly, except to people who don’t understand.”
For me to become Real during this journey, I knew that I had to make peace with the fact that the old Esté was gone, and that I had to bury her. The life I once lived was over—no more working through the night on strenuous deadlines, no more international travel, no more spontaneous time with friends, no more eating what I wanted to. I was now living in a body with severe limitations.
For me to move forward, I first had to bury the old version of myself and grieve everything I was losing. Only then could I start to rebuild; to re-align my life—the new Esté. I knew my transformation lay in acceptance, not denying how traumatic that process was, but in embracing it.
I understood that my emotional healing had to come first. Without it, my physical healing would never follow.
Learning to thrive (not just survive)
Learning to live with Crohn's Disease took time and patience. The first years were especially difficult—I was frequently hospitalized with severe flare-ups. I had to resign as an investigative journalist, but 20 months after my diagnosis, I was strong enough to return to work. I found my way back to radio broadcasting, which has always felt like breathing to me, where I now, amongst other things, produce and present a weekly radio current affairs show.
But more importantly, I learned to listen to my body and remained committed to my medication regimen. Never giving the disease power over me meant becoming emotionally strong. The symptoms were real, and at times, so was the despair. But I was determined not to become the symptoms or the disease. I would not allow Crohn's Disease to define me.
Eight years after my diagnosis, the Crohn's Disease is in remission. I am living a full life, and I am thriving.
Turning my pain into purpose
Five years after I was diagnosed, I was ready to tell my story. I had never spoken about it openly. By then, I had also built relationships with other autoimmune warriors and it was clear to me that awareness had to be raised about these conditions and the impact it has on warriors and their loved ones’ lives.
I produced and presented a four-part radio documentary series called 'A Prison of Pain,' in which I told my own story and interviewed other chronic illness warriors living with autoimmune, chronic pain, and chronic fatigue conditions. We all went through the same process of realising that transformation started with acceptance, and only from that point were we able to re-align our lives. We all experienced trauma, major losses, and the grief of losing who we once were. Most of us had relationships that suffered under the weight of chronic illness, and not only did these warriors and I feel isolated from our bodies, but also from the people closest to us, because they didn’t always understand.
But we were all—in some way or another—reborn into warrior versions of ourselves, managing our conditions and thriving. For all of us, that path was difficult, but not impossible.
The response to the series was overwhelming, not only from the public, but especially from people with autoimmune and chronic conditions. What struck me most was this: these warriors didn’t just need awareness, they needed guidance. They were locked in their own prisons, not knowing how to rebuild their lives after diagnosis; not knowing how to move from surviving to thriving. They needed someone beside them who had walked this path.
That realization led me to this new career path of becoming a trauma-informed coach, so that I could walk beside these warriors through their transformation.
Taking flight: The Warrior Butterfly
After learning to live with Crohn's Disease, and manage its symptoms, I re-aligned my life—like a Warrior Butterfly emerging from its cocoon—to take flight. I know this battle is real, but also that transformation is possible—because I've lived it.
Being diagnosed with an autoimmune disease or chronic illness doesn’t mean your life is ending. It simply means you need to learn how to live with it, and sometimes that means you need to change direction, often for the better.
Being ill taught me valuable lessons in life. It stripped me of everything that was not important. It taught me to value my time and who I spend it with. It taught me to be grateful, especially for the smallest things. Most importantly, it taught me to live in the moment.
Of all the roads I have traveled on, this journey leading me to this place where I am now, has by far been the most difficult, but definitely the most important journey I have ever undertaken. I am thankful.