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

“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.

We want to hear your story. Become a Mighty contributor here.

Find this story helpful? Share it with someone you care about.

Related to Congenital Heart Defect/Disease

Paula Miller - Adult Congenital Heart Association

Talking congenital heart disease with Paula Miller from the Adult Congenital Heart Association.
boy with scars after heart surgery

When People Ask If My Son With a Congenital Heart Defect Has Been ‘Fixed’

Is he fixed? That’s the ongoing question we get when someone we know asks about our son Elijah’s heart condition. The simple answer is no; he is not “fixed.” He will never be fixed. He was born with a congenital heart defect (CHD) called Tetralogy of Fallot. You cannot just “fix” a congenital heart defect. [...]
Adorable little girl reaching for camera

The Journey of a Heart Parent

Being a parent to a Heart Hero has been not only heartbreaking but equally rewarding in its own right. We’re never really fully prepared for those words: “There seems to be something wrong with your child’s heart.” One might never be fully prepared for what lies ahead for a Heart Mum/Dad. Dreams may seem shattered [...]
boy explaining his heart disease to others

15 Ways to Become a Better Advocate for Your Own Health Care

How many times have you heard someone tell you to be your own advocate? But it seems that is all they say. There’s no how-to list or suggestions — just that confident statement that seems like it should mean so much. How would one even begin to understand what that means without firsthand experience? It [...]