What I've Never Said Out Loud About Living With My Health Issues

This is something I’ve never said out loud: stop calling me brave.

I’ve been told my entire life how strong I am. How brave I am to have lived through everything I have and still grow up to be a decent human being.

I’ve been told I can be an example for others, how God is using me to show a bigger picture or something.

I have to say, after 25 years, that doesn’t make me feel better.

I’ve lived the way I’ve lived because I know nothing but illness. I had my first open-heart surgery when I was 1 day old. I’ve never felt what it’s like to breathe with two working lungs or to have a heart that always beats correctly.

Most people can’t know what it’s like to be sick since the day you were born. Just like I can’t know what it feels like to be healthy for the same amount of time.

It’s not being brave. It’s just living the only life I know.

I’m not saying that going through open-heart surgeries, many (many) hospital/ER/doctor’s visits and other surgeries and testings is easy. It’s not.

But you know what I get to do every day that most don’t even have to think about?

I get to fight. Even sitting down and talking is a chore. Everything I do, even the simple things, I have to fight through what my defects try to stop me from doing.

Being born with TAPVR type 3 (a rare heart defect), it was pretty much a death sentence. And in most ways it still is, but I’m here. And becoming an adult with a congenital heart defect, my doctors get to learn from me. They can see how my defect ages and hopefully help future children with TAPVR.

I know I wouldn’t be the person I am today if I was born healthy and then got sick. In a strange way, I’m glad I have nothing to compare to.

You might be wondering why I’m telling you to stop using the word brave, because being brave is normally a good quality to have. And with some situations, you might say I was brave… but that’s because I signed up for it. I knew what I was getting into. Good or bad, I still did it.

But I wasn’t a willing participant in having a congenital heart defect, one working lung, TMJ and autoimmune issues. It just happened.

I’m not belittling what I’ve been through, or what other people have gone through with a lifelong chronic defect or illness. I’ve been through more than most go through in 60-plus years of life. But I put one foot in front of the other just like everyone else. I have happy times. I have sad times. I’ve had some dark, depressing times. And that’s why I say I fight.

I know it’s OK to be sad; I’m only human. I have pity parties. But I pick myself back up. And I fight for another day. Doesn’t that sound a whole lot cooler?

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.