"Your Story is My Story": Finding Belonging in a Community of others with Congenital Heart Disease (CHD)

This week, I had the most beautiful experience that resonated deep down to my toes. I was reminded that shared stories weave a tapestry of belonging, kinship, and the knowing feeling of being truly seen.

As a counsellor who specializes in supporting children, youth, and families who have experienced medical trauma, I have walked alongside many who struggle with anxiety, dysregulation, disconnection, overwhelm and other mental health challenges. I know how important community and connection to others is, but this week it truly came home to my own heart.

There is something uniquely powerful about finding and connecting with others who have a shared experience and understand on a deep, visceral level something you have gone through. It’s not just about words on paper or comforting advice—it’s about knowing, in the inside of your heart, that someone else has walked a similar path. And this week, I had this experience in buckets.

As someone born with a congenital heart defect called Tetralogy of Fallot, I’ve experienced my own challenges in balancing, healing and restoring my own nervous system, complex emotions and medical trauma. I was born into a body that felt like it betrayed me. I wasn't like others and couldn't keep up physically. I had to endure painful surgeries and procedures. I felt like I needed to always be strong so I could prove myself and not worry my family and loved ones. The important part of this to note if you are a parent, friend, teacher or therapist of someone with congenital heart disease is that very often, you would never know what is happening inside their hearts and minds. We put on brave faces and endure the inner panic very frequently as we follow the commonly held label of "heart warriors".

Even in the moments before this story and probably after too, I also hide how many challenges I have living with this condition. On the outside, I look like a professional that is all together (well somewhat) but I continue to have symptoms that scare me.

My relationship with my own heart is complex. Much of my personal therapeutic work is centered on dark moments I have had experiencing a symptom quite common with congenital heart disease. Arrhythmias, or irregular heartbeats, are something I continue to live with that is a consequence of my surgeries and the damage to the cardiac nervous system. I can't completely explain the experience of the stirring of my heart out of rhythm, but this inner sensation can send me into panic and terror. It feels like my own body betrays me, each beat of my heart reminding me that something is not quite right.

It’s hard to feel calm and grounded when your body is constantly sending urgent signals—signals that your nervous system can’t quite regulate, signals that seem like a warning, even if there’s no immediate danger.

I am still personally learning breath work and unravelling my own fears to be in my body and connected to the world around me when I have arrhythmias.

With my clients who have experienced medical trauma, we often work on connecting to our inner sensations and building a sense of safety. Interoception is beginning to be called the 8th sense and it is the ability to sense and be aware of what is happening inside your body including your heartbeat, stomach sensations, breath and emotions. For many of my clients -and myself- staying regulated and feeling safe while building these inner connections can be challenging.

Threads of stories

This week, I decided to reach out to build my own professional understanding of what other people with arrhythmias and other uncomfortable and painful physical sensations do to build their own connection, safety and resilience.

What anchors do they use? What are their stories? What did they use as resources? How do they build resilience?

I turned to social media, sharing a vulnerable post about my journey and asking for stories.

The response I received was truly transformative. One person wrote, “Your story is my story.” and I began to sob. Their simple sentence wove a beautiful sized blanket for my own heart. The stories and comments poured into the chat and I don't know if I have ever felt so at home and in kinship with so many people I have never met.

This experience, this deep knowing that others were sharing similar journeys, filled my heart with more than hope. Reading their experiences loosed the story of fear I have held onto tightly in my heart. Healing is about connection. It’s about showing up, being vulnerable, and finding solace in others who understand and I truly had a moment. I was looking for resources and inspiration for my clients, and found it for them and myself.

Currently, I don't know what to do with all the stories except honour them. Someone has reached out to me offering to help collect them into a book. Someone else has suggested we begin a regular virtual dialogue to build resilience and strength through our shared stories. I am going to pause and honour the next step with this community needs to be intentional, inclusive and honoured.

For those of you reading this who feel isolated, who feel misunderstood, or who feel like you have to be "brave" all the time, I want you to know that you are not alone. There are people out there—just like me, just like you—who share your story, who are walking through similar struggles. And if you’re looking for support, if you need someone to help navigate the complexities of your emotions or your nervous system, I am here for you. Together, we can create a space where you are seen, heard, and understood. You don’t have to face this journey alone.

As a counsellor, I’ve dedicated myself to helping children, youth, and families find their way through challenges. If you’re struggling with anxiety, trauma, or nervous system dysregulation, I would be honoured to support you in your journey—whether you’re a child learning to understand your body’s signals or an adult trying to make sense of your own connection to your stories and experiences.

If you’re interested in learning more about how I can help, feel free to reach out. If you’re interested in learning more about how I can help, feel free to reach out. My practice focuses on helping individuals and families find healing, wellness and balance through compassionate, somatic based therapy.

Your story is my story, and I’m here to stand by your side as we journey through it together.

https://handstoheart.janeapp.com

https://www.handstoheart.online