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To Those Who 'Never Would Have Guessed' I Have a Heart Condition

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“I would have never guessed. You look so normal.”

When I meet someone new, I never tell them right away that I have a heart condition because I never want to be labeled as “sick.” A lot of times when people label you based on first impressions, it is hard for them to see you as anything different (Trust me on this one. I had a former boss who questioned my ability to work when I disclosed my health circumstances). It is only when I feel a sense of comfort and trust do I disclose my “sickness.” Even then, I only tell them the brief version of what I live with.

I was diagnosed with a heart condition when I was six weeks old. I am missing my right ventricle and I have had three open heart surgeries. For the most part I am fine, just a few doctor appointments each year. I will let people know if there is an emergency or if I need anything.

Every time I do share with people about my heart complexity, they are so taken back by the fact that I “look” and “act” normal. I get this wide-eyed stare in disbelief, followed by statements such as, “I would have never guessed” or “You look so normal.” I usually brush it off casually and downplay my heart condition, but what I wish I could say to them is this:

I may look “normal,” but my life has been anything but normal. With all of my “near death” incidents I have an irrational fear of death that never seems to truly go away. When I have an episode of atrial flutter or I have to take a break from exercise, I wonder if my time is coming to an end. I guarantee that when we have been in the same room, I have had heart flutters that literally take my breath away, but of course I would never let you know.

Life has been hard but I am a fighter. I will fight for everything that is joyful in this world. I receive life as a gift and continue to challenge and push myself. Please don’t feel sorry for me, because all these challenges have given me a rare perspective on life. We only have one life and we do not know when our time is up. Because of this mindset, I am going to soak up every sun’s ray, laugh until my abs hurt, love unconditionally, and tackle any goal I put in front of myself.

I am uniquely designed and able to live my life to my fullest.

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Originally published: January 31, 2017
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