I admit it. I am stubbornly independent. I like figuring things out on my own, and I take pride in being self-sufficient. I enjoy helping and supporting others, but I am terrible at asking for help.
Of course the reality is that no one—with very few exceptions—is completely self-sufficient. In fact, our culture almost requires interconnectivity. Most of us are not growing our own food, working entirely for ourselves, and building and maintaining our homes in isolation. In most cases, our networks are necessary for our very survival.
In this same way, living with congenital heart disease (CHD) is not—and should not be—done in isolation. Whether stubbornly independent or not, we must rely on others from time to time, most often when we are feeling the most vulnerable. Five years ago, following my cycling accident that fortunately, but unexpectedly, got me back into adult congenital heart disease (ACHD) care after about a decade lapse, I had a new rule book by which to live.
I recognize and am grateful that I am one of the lucky ones. I’ve had “only” two open heart surgeries (so far), and I have basically no limitations on my physical activity. But I would not be where I am today without an amazing network of allies within the CHD community that continues to grow—from my fellow Heart to Heart Ambassadors to passionate advocates, family members, and friends.
As I was facing my second open heart surgery in early 2014, I would often turn to my CHD network of allies for support, comfort, and guidance, whether it was my medical team to get answers to the countless questions I threw their way, or the phone, text, and online chat conversations with friends and fellow Ambassadors who had already gone through surgeries as adults. Hearing from others who had lived through what I was about to go through helped immensely. And while I certainly did not look forward to my trip to the operating room, it was only become of my support network that I could face that fear with the courage and confidence that I did.
Just as each person’s CHD journey is unique, so too are the individual networks of allies that people establish. Some have a strong network of family and friends that they lean on. Some benefit from connecting with another CHD patient or family member, whether through the Adult Congenital Heart Association’s Heart to Heart Ambassador Program or another local resource. But the important thing for everyone to know is that they are not alone. Life with a CHD may not be easy, but having allies in place allows you to have the necessary support system to lean on for medical, social, emotional, and, yes, sometimes even financial support.
I have had the privilege of sharing my own CHD story many times both through a blog and by speaking at several events, from various Congenital Heart Walks to the 2014 National Conference in Chicago. The feedback I’ve received has been incredible. I was once told by the parents of a young child with CHD that my story gives them hope that their baby will be able to grow up and live a full life as an adult. In that moment—and even if only for that one moment—I became a part of that family’s network of allies. But what they probably did not realize is that they too became part of my own ally network. And even if I never see them again, their feedback motivates me to stay involved and to continue giving back to the CHD community.
If you are reading this blog, you already have a connection (even if it’s just preliminary at this moment) to a network of allies. The CHD journey is too great to go it alone. So I hope that you will take the opportunity, as I did, to connect with some amazing people and resources and to become a stronger and more confident person in the process. Here’s to your health and living your life to the fullest!
“The power of community to create health is far greater than any physician, clinic or hospital.”
–Mark Hyman, MD
physician, author, and Director of the Cleveland Clinic Center for Functional Medicine
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The contents of this blog are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.