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Why I Struggled With the Term 'Congenital Heart Disease'

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Let’s talk for a moment about semantics. Of course, usually when someone starts throwing out the word “semantics” (especially online), it often ends in the internet troll police being called, and both sides of an argument end up in a standoff.

But words, and their meanings are important, and this is a story of how I changed my mind about the term “congenital heart disease.”

I was born with dextro-transposition of the great arteries. And, growing up, I always thought of my congenital heart disease as a defect, not a disease. Diseases were acquired, like a cold – or worse, cancer. No, my problem was a structural defect. And it was fixed. It was nothing more than a nice, clean story neatly packed away in the file cabinets of my mind – only to be dusted off during my biennial cardiovascular checkup, or on the rare occasion that someone saw my scar.

Fast forward to the present, and I now believe that congenital heart disease is the best term to use when describing the condition that I share with over 2.4 million brothers and sisters.

It is said that struggling produces humility and sympathy. If I have learned anything over these last few years, it is that my body is weaker than I care to admit. I now need medications to help my heart work better, medications that I never needed when I was younger. I now need more frequent medical care and observation. I will, one day, likely need another open-heart surgery to replace my aortic valve.

This ongoing care all stems back to the structural heart defect I was born with. And it was something I failed to see when I was younger.

There is no doubt in my mind that I am a strong, capable person. But my struggle with chronic, invisible illness is far from over.

And that is why I changed my mind about congenital heart disease.

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Gettyimage by: KatarzynaBialasiewicz

Originally published: January 9, 2018
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