1. Introduction.

Hello! My name is Jessie and I have hypertrophic cardiomyopathy.

 

2. What led to your diagnosis? What has happened since then?

Growing up, I was very active and played a lot of sports. At 15, I began experiencing shortness of breath and nearly fainted during a hockey game. Despite insisting I was fine, my parents took me to the doctor. After several visits and an echocardiogram, I was diagnosed with hypertrophic cardiomyopathy (HCM). I attended regular cardiology appointments from then onwards.
Six years later, during my final year of university studying Occupational Therapy, my symptoms worsened — severe shortness of breath, chest pain, and fatigue made daily tasks difficult. Further testing revealed my HCM had progressed to hypertrophic obstructive cardiomyopathy (HOCM), where my heart was struggling to pump blood and provide oxygen to my body.
The following 18 months were challenging as I balanced completing my studies, starting a full-time job, and attending frequent cardiology appointments—all while managing ongoing severe symptoms. Ultimately, open heart surgery at 22 years old became my only option for a better quality of life. Life after surgery was incredibly difficult. Ten months later, I quit my job and travelled around Europe for a while.
Since then, I have remained under regular cardiology care and trialled new medications as they have become available. I’ve found different ways to stay active, including Pilates and swimming. Despite these challenges, I graduated, built a fulfilling career as an occupational therapist, and have been able to check off some bucket list items.

 

3. How does cardiomyopathy impact your life?

If you had asked me this before my open-heart surgery, I would’ve said HCM impacted every aspect of my life—I felt like it defined me. But since the surgery, I’ve had time to reflect and gain a new perspective.
Living with HCM has shaped both my personal and professional life. It pushed me to view life through a more meaningful lens. Being diagnosed at a young age forced me to pause and give up things I loved, without any real guidance on how to move forward. That experience inspired me to pursue a career in Occupational Therapy.
I wanted to help others in the way I wish someone could have helped me—to support people in rediscovering purpose, even when life doesn’t go to plan. HCM has challenged me deeply, but it’s also given me a sense of clarity and purpose that continues to guide me every day.

 

4. How has cardiomyopathy impacted your relationships?

HCM has had a profound impact on my relationships. While it has been incredibly challenging at times, especially for my family, it has ultimately made our bond stronger. Going through something so life-altering has shown me just how important a strong support network is, and I’m genuinely grateful for the unwavering love and support I’ve received from those closest to me.
It’s also shifted how I see friendships. In the past, I found it hard to lean on others, but over time I’ve realised that true friends want to be there—not just for the good moments, but for the hard ones too. That realisation has deepened my appreciation for the people in my life and taught me that vulnerability can actually bring us closer together.
In many ways, this diagnosis has reminded me how lucky I am to be surrounded by people who care—and how essential it is to let them in.

5. Having lived with cardiomyopathy for some time, what is something you’d like to pass on to someone more recently diagnosed? Or what is something you wish you’d known about earlier, which might have made your journey with cardiomyopathy more manageable?

Being diagnosed with HCM as a teenager and now being in my early twenties, I’ve often been the youngest person in the room. That’s been tough. It’s isolating at times, and for a long while, I felt the need to push through on my own, to be strong, to be the “hero.” But that approach left me burnt out.
If I could pass anything on, it would be this: don’t be afraid to tell people. Let them in. It’s okay to need support. It doesn’t make you weak—it makes you human.
As a health professional myself, I’ve seen people of all ages facing serious health issues. And when I see a young patient, I don’t think, “How young.” I think, “Wow, how strong.” I’ve learned to offer myself that same compassion. We deserve it.
Living with HCM while navigating life isn’t easy. Be kind to yourself. This journey is challenging, but you’re not alone—and you don’t have to carry it all by yourself.

6. How has/can a patient support group assist?

Throughout my journey with HCM, there was always one thing that had been missing—commonality. While family, friends, and health professionals offer support, they aren’t living with the condition themselves. A patient support group fills that gap by providing a sense of understanding, belonging, and shared experience. This is exactly what I experienced when attending a CMNZ patient support group.
Being part of a group where others truly “get it” is incredibly validating. It creates a safe space to share challenges and receive both emotional support and practical advice. Hearing others’ stories helps me feel less alone and more empowered to manage my own condition. Support groups offer more than comfort—they offer connection, insight, and hope.