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Please Don't Call Me 'Brave' for Living With Congenital Heart Disease

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Nothing about this is brave, it’s a matter of survival. Hearing people say “You’re so brave” has always made me feel uncomfortable… like what choice did I have? I was talking to one of my friends who has a different congenital disease and we don’t understand why people say it to us. Those who had a choice and chose freedom, the law, and their country, those who were thrown into a situation at such a young age — to me, those humans are brave. I get backlash when I tell those who don’t understand, and I guess if you’ve never lived with it you would consider waking up and moving forward with everything on my plate brave. I’m sure most of them don’t know that most of the times those plates crash to the ground and I just walk away from it.


I work in retail and sometimes I have customers who ask about my scar (I’m usually surprised and happy to answer their questions) and they almost always call me brave and I usually say thanks. One time I was pleasantly speechless when a customer said, “Well that sucks”…Yes! Yes, it does. He preceded to ask why I had a big grin on my face. If you want the lowdown, here it is: It does suck. Having to make contingency plans, never running out of medicine, spending money on medical needs instead of adventures, having a hospital bag pack always, and continuously thinking “What’s next?”

If I had to call myself anything I would say I’m resilient. I say this because as many times as I get knocked down I get back up; not because I think I’m going to win, not because I have this love of getting beat down, but I want to keep moving forward. The only way to keep moving forward is to make any and all efforts to continue your life even after the final blow and you can’t get back up. Guess what? You can get back up, you can throw that punch, wipe those tears, gather your thoughts and move onward. I’ve lost many battles with my health physically and emotionally, but I can’t give up until there is nothing worth fighting for. And right now, I have plenty to fight for.

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Originally published: May 26, 2017
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