A candid account of the mental health challenges of living with chronic heart disease, from trauma and isolation to finding connection and recovery.

Mental Health

This Is Not for the Fainthearted

May 5, 2020

10 min read

Somaneh Bouba

A candid account of the mental health challenges of living with chronic heart disease, from trauma and isolation to finding connection and recovery.

Content note: This article discusses mental health challenges including suicidal ideation. If you or someone you know is struggling, please contact the 988 Suicide & Crisis Lifeline (call or text 988).

The Weight of a Diagnosis

In a very short period, I went through my first congestive heart failure and DCM diagnosis in South Africa (December 2012), treatment in Dakar and Bamako, finding out the condition was congenital LVNC with life-threatening arrhythmia in California (June 2016), moving to Boston, living on a mobile intravenous system for 6 months, and finally undergoing open-heart surgery for the HeartMate3 LVAD in January 2017.

The Hidden Struggles

Admittedly, it is a very tough and challenging process. Amongst others, I am talking about dealing with:

Trauma: This can be a very lonely experience. Only you truly know what it was like to go through that traumatic, life-changing, horrific experience. Then, you have to navigate relationships, mood changes, and more frustrations.
Avoidance symptoms: Sometimes, I just want to be alone. I can't leave my room or my house. Avoidance can shrink someone's life, such that there are very few places I end up feeling comfortable going to.
Negative changes in moods and beliefs: I'd get in moods where I can't tolerate anybody.
Hyperarousal: Sometimes, I just have a very short fuse. I feel like I am ready to snap.
Suicide ideation: I have been through many low points, including dealing with suicidal thoughts.

Finding Help

Thankfully, with the help of psychotherapy, and other activities, I have been finding ways to feel connected to others, to express emotions, to share part of what my experiences have been. All of these have certainly been helping with my long-term recovery and my ability to be part of my communities in a positive way.

Transformation

It has been a journey! But, thankfully, my quality of life transformed, to the point that I am now back to working full-time, developing new social projects, being physically active in sports, and more importantly present to enjoy incredible moments with my wife, our three sons and the family and our communities.

"I'm happy to say that just a few years after learning that my heart is too big for my body, I'm thoroughly enjoying life again, every second of it. I feel ready and evermore confident to persevere. I have hope for the future, no fear. I dream again. I live again, to the fullest."