When Worlds Collide: My USA Trip as a Patient and Professional

For years, I’ve carefully balanced two distinct worlds. One is my personal life with congenital heart disease (CHD), navigating countless medical appointments, surgeries, and the daily realities of living with a chronic condition. The other is my professional world, focused on policy, program delivery, and climbing the corporate ladder. I’ve worked hard to keep these identities separate—one deeply personal and vulnerable, the other strategic, focused, and all business. But during this recent trip to the USA, those worlds collided in ways I hadn’t expected.

This was my first international work trip where I was fully immersed in both roles at once—attending conferences and speaking at events as both a professional and a patient. It was a whirlwind week and a half, and even now, I’m still processing the emotions and insights that came from this unique experience.

I’ve long been an advocate for people with chronic illness and launched Adulting Well to help others live their best lives without having to learn everything the hard way. But I’ve never experienced this level of intensity for such an extended period. It was a first, and I’m still coming to terms with what it means for me and how I can best share it with you going forward.

One thing I do know for sure: I am deeply grateful for the incredible opportunity to meet so many incredible people, learn from the best in the world, and share my story and insights.

Stepping into St. Louis: The Professional Me, The Patient Me
I had travelled over 16,000 kilometres to give a 12-minute “Impact Talk” about my experience with medical trauma, and the nerves hit me harder than I expected. I’ve shared my story before, but this time felt different. There’s something incredibly vulnerable about distilling a lifetime of experiences into such a short time, especially in front of an audience of professionals who work with patients like me but may not fully understand what it’s like to live through it.

I was worried about whether my talk would hit the mark—whether I could truly convey the emotional and physical toll of living with congenital heart disease (CHD) and the trauma that often comes with it. But as I wrapped up and sat down, the feedback I received was nothing short of amazing. People told me how it opened their eyes to the patient perspective, helping them see beyond the clinical charts and data. I was beyond grateful, and honestly, relieved that my words had resonated.

After delivering my talk, I spent the next few days sitting through session after session of fascinating research findings on neurodevelopmental outcomes and care for people with CHD—people like me. The dedication of the researchers and medical professionals to improving care for the CHD community was incredible. I felt immense gratitude for their commitment to helping people like us live better, healthier lives.

But as a patient, it was also a lot to take in. I found myself reflecting on what all of this meant for me personally—not just as someone living with CHD, but also as the founder of Adulting Well and an advocate for others facing similar challenges. This experience deepened my understanding of the importance of sharing patient stories, and it reinforced my commitment to advocacy. It’s made me think hard about how Adulting Well can continue to bridge the gap between the clinical world and the lived experiences of people with chronic illness.

Visiting Cincinnati: A New Era of Care
Visiting the Heart and Mind Wellbeing Centre at Cincinnati Children’s Hospital was an emotional experience for me. As I walked through the facility and learned about the incredible resources and support available, I felt a wave of sadness for what my generation never had access to. The comprehensive care and attention to both the medical and emotional needs of patients with congenital heart disease (CHD) is nothing short of revolutionary, and it struck me just how many lives this Centre will change for the better.

At the same time, I was filled with immense gratitude and admiration for what they’ve built. Dr. Nadine Kasparian and her team are truly amazing, dedicating their efforts to enhancing the lives of patients and their families. It was inspiring to witness their commitment and passion firsthand.

During my visit, I also gained valuable insights into the USA patient experience and healthcare system. The differences in approach and support compared to Australia were striking and gave me a fresh perspective on the challenges and opportunities within both systems. I loved meeting patients and carers, hearing their stories, and sharing in their journeys.  I’m incredibly grateful for the amazing people I had the chance to meet, who are all working tirelessly to improve outcomes for people like me.

The Impact of Colliding Worlds: Processing It All
Reflecting on my time in the USA, I find myself feeling a bit unsettled. The collision of my personal and professional worlds was both enlightening and overwhelming. Sharing my story of medical trauma during my “Impact Talk” was a pivotal moment, offering me the chance to express the emotional weight of living with congenital heart disease (CHD) while advocating for others. The positive feedback I received was both validating and a reminder of how crucial it is to bridge the gap between patient experiences and clinical practice.

Immersing myself in the research and discussions around neurodevelopmental outcomes was equally powerful. I felt pride in the dedication of the researchers, yet also introspection about what it meant for my own journey. Visiting the Heart and Mind Wellbeing Centre in Cincinnati was particularly moving—I was impressed by their comprehensive care, yet I couldn’t help but feel sad for what my generation missed out on.

Hearing the stories of other patients and carers gave me a deeper understanding of the diverse paths we walk and strengthened my commitment to continued advocacy. This collision of worlds has given me a new appreciation for the challenges we face and reinforced my belief in the importance of comprehensive care.

As I process these insights, I’m focused on finding the best ways to use what I’ve learned to support and empower you through Adulting Well. It’s about making sure everyone with a chronic illness feels seen, heard, and empowered.

P.S.

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