Psychological Aspects of Living with CHD

For the past few years, I’ve been part of a writing group for a Scientific Statement from the American Heart Association on the psychological outcomes and interventions for individuals with congenital heart disease (CHD). Spearheaded by Dr. Adrienne Kovacs and Dr. Lazaros Kochilas, our goal was to describe the psychological impacts of CHD across the lifespan and provide strong evidence to support ongoing mental health services and interventions.

Professionally, this endeavor has been incredibly fulfilling as I’m passionate about the holistic care of CHD patients, and I’ve been able to collaborate with people I deeply respect and admire.

Personally, I’ve had an emotional reckoning of sorts.

The normalization of our emotional experience is an important first step. We have been through things that leave a lasting mark on our hearts (literally and figuratively). It’s completely understandable that so many of us carry the emotional load of these experiences. We are not alone, and many of us share similar stressors and difficult emotions.

I’m highly functional despite these emotional challenges, and so it often appears as though I don’t have any of these struggles. As the saying goes, check on your strong friends because they’re carrying the heaviest loads. I often feel like Luisa from Disney’s Encanto, doing my best to stay strong or else I might start to crack!

Last fall, I started to see the cracks in my turtle shell of people pleasing, productivity and achievements. I knew it was time to “walk the walk” and get some help in the form of regular therapy. What I’ve since discovered is how deep my emotional trauma runs and how it impacts interactions with my medical team and within my interpersonal relationships.

I’ve often said that the CHD lived experience is like “waiting for the other shoe to drop” – meaning we’re just waiting for a seemingly inevitable cardiac crisis. We have periods of stable plateau where we can almost forget about our CHD, and then “BOOM” – it’s time for surgery or we start having arrhythmias.

What I often see is that many people don’t address their mental health needs until they are in a time of cardiac crisis. This really is not the best time to try to unearth years of emotional trauma and develop coping skills. It’s never too late, so please, get help whenever you can, but I recommend all of my patients to start getting help while they’re in the stable plateau. Then you’ll have the skills and knowledge to navigate the cardiac crisis, when it does eventually come.

Sadly, I’ve seen many people who leave their cardiac care because their mental health struggles become a barrier. It’s just too hard to face the trigger, and their health suffers or even leads to their premature death. It is heartbreaking for me to witness time and again. When we neglect our mental health needs, we place ourselves at risk for worsening emotional distress, and that impacts our entire health.

Participating in writing this statement, along with my own personal work in therapy, has granted me new insight into the CHD community’s pain and resilience. I’ve been having more open vulnerable discussions with my patients about their emotional struggles because I know how important it is to their cardiac care, and I don’t want anyone to feel alone on this journey.

I encourage all adults with CHD and their support people to read the patient and family information handout that was created to accompany the AHA scientific statement. You can read the handout here. I hope everyone is able to use this information to reflect upon their own experiences, advocate for their care, and strengthen their resilience for the years ahead.