My Evolving CHD Identity

I grew up like a number of congenital heart disease patients, believing I was cured of my heart disease. As a youth, my heart story was a really fun conversation starter in any awkward icebreaker activities that various group orientations threw my way. My senior year of high school, as I prepared for college, I decided to use the story of my cured heart to explain my passion for community service.

Occasionally I would show off my scar in some V-neck top or ask my parents about my baby open heart surgery story, but that was the extent of my CHD identity. My open heart surgery experience served as a fun, upbeat story to share at parties or to set me apart from others, but nothing more.

Then the words congenital heart disease came back into my life again in a very serious way during my sophomore year of college, and my identity shifted.

No longer was I “cured.” I realized, terrifyingly, my heart story could not continue to exist as happy or upbeat, especially as I prepared for my second open heart surgery.

More than that, I wondered what was to become of my already established identity within my circle of friends, campus, community and social media presence. Suddenly I was no longer just a college student who wanted to make the Dean’s List, be involved in her sorority, create a women’s professional development organization and find time for fun in between.

I was definitely now a CHDer too. Becoming aware of the Adult Congenital Heart Association, the Zipper Sister Facebook page and following the #Rockyourscar movement, I knew my heart story could no longer be just a fun fact. CHD had walked back into my life and, with the diagnosis and surgery, claimed a share of my identity.

Throughout my surgery and recovery process I created a blog on my experience, hoping to raise awareness among my friends and community and also reach out to any CHDer who found him or herself in the position where I had been at the beginning of my diagnosis—lost, scared and alone, in need of finding ACHA and all support groups available.

I spammed my friends with heart facts and news of my recovery, trying to let them know about how important awareness and funding is for making sure all 1 in 100 get to live the lives they deserve. My CHD became my primary identity to those who saw me and to myself as well. Through my surgery and recovery, getting better and raising awareness became my number one priority, as my identity to others and my identity to myself.

As time has separated me from my last surgery and the gap between my next surgery is, hopefully, quite a big one, I am searching for how I want my identity to evolve. For now, CHD continues to play a huge role in how I identify myself. The previous college student who wanted only good grades, sorority sisterhood, fun times and to impact women with professional skills development has a new passion as well: Making life with CHD easier, longer and more active for all patients.

I have reconciled my heart story to my other passions. In each piece of my identity, I work to weave my heart experience into the larger story because my heart and our shared CHD experience is now a part of me and an integral part of my identity.