Why I'm Travelling 10,000 Miles to Give a 12-Minute Talk

When people ask why I’m travelling 10,000 miles to give a 12-minute talk in the United States, my answer is simple: it’s about the importance of lived experiences and mental health. These aren’t just buzzwords; they’re the heartbeat of everything I do. As someone who has lived with complex congenital heart disease for over 40 years, I’ve learned that our stories are powerful, and mental health is not just a piece of the puzzle—it’s the entire foundation.

The Power of Lived Experience

Lived experiences are the raw, unfiltered truths of our lives. They’re the stories that don’t always make it into the glossy pamphlets or the polished medical journals, but they’re the stories that matter most. They remind us that we’re not just statistics or case studies—we’re real people navigating the complexities of chronic illness every single day.

When I share my story, it’s not just about recounting the five open-heart surgeries or the countless doctor’s appointments. It’s about the emotions, the fears, the triumphs, and the setbacks that come with living a life that doesn’t fit the standard narrative. It’s about showing others that they’re not alone in their struggles and that there’s hope, even in the darkest moments.

The Lost Generation

My generation—those of us who grew up with congenital heart disease in the 1970s and 80s—are often the 'lost generation.' We were the pioneers of complex heart surgeries, but we were also the ones more likely to be lost to care as adults. Many of us were never offered mental health screenings or specialised support, leaving us to navigate the emotional toll of chronic illness on our own. While some of us have found our way to community groups or specialised care, there are still so many carrying these experiences alone, without the support they desperately need. This is why I’m so passionate about advocating for mental health; because we can’t afford to let another generation slip through the cracks, and we need to find the ones who have.

Why Mental Health Matters

Mental health is often sidelined in discussions about chronic illness. Yet, it’s as critical as physical health—if not more so. Living with a chronic condition means living with uncertainty, and that takes a toll on the mind. The stress of managing symptoms, the anxiety of medical appointments, and the grief of lost opportunities all contribute to a heavy mental burden.

For me, mental health has been a journey of learning how to balance hope with reality. It’s meant finding ways to stay resilient even when the news isn’t good, and learning how to meet my body where it is rather than pushing through at all costs. It’s also meant advocating for myself in a medical system that doesn’t always understand the unique mental health challenges that come with chronic illness.

Bridging the Gap

The conferences I’m attending—one at the Cardiac Neurodevelopmental Outcome Collaborative (CNOC) Annual Scientific Sessions in St. Louis, Missouri, and another at the Heart and Mind Wellbeing Center at Cincinnati Children’s Hospital—are critical platforms for this conversation. At both events, I’ll be discussing the Australian National Standards of Care for Childhood Onset Heart Disease, which include the world’s first standards on mental health and neurodevelopmental care. These standards are a huge leap forward, but there’s still much work to be done.

By sharing my story, I hope to bridge the gap between lived experiences and clinical practice. It’s not enough to treat the physical symptoms of chronic illness; we must also address the emotional and psychological challenges that come with it. This isn’t just about better outcomes—it’s about truly caring for the whole person.

The Journey Ahead

As I prepare for this journey, I’m reminded of the immense privilege it is to share my story and advocate for others. Travelling 10,000 miles is no small feat, especially when living in a condition like mine. But I’m driven by the belief that our stories can change lives—and that mental health should never be an afterthought in chronic illness care.

So, why am I travelling 10,000 miles to talk about lived experiences and mental health? Because these conversations are long overdue, and because every person with a chronic illness deserves to have their story heard and their mental health cared for.

I look forward to sharing more about my trip and the insights I gain along the way. Until then, remember: your story matters and your mental health is worth prioritising—always.

P.S.

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