The Mighty Logo

Why I Didn't Realize I've Been Chronically Ill My Whole Life

The most helpful emails in health
Browse our free newsletters

I turned 34 years old this year and it came as a surprising realization to me a few months before my birthday that I am chronically ill, and have been my whole life! It really shouldn’t have been a shock or surprise. I mean, I turned blue after I started breathing and then was flown in a rigged incubator without my parents to Texas for open heart surgery (OHS) at two days old. Most people probably would be scratching their heads as to why this has just now dawned on me.

But for me I don’t remember a time I didn’t have surgery scars, or that adults and hospitals felt more normal then playgrounds and kids my age. I also started getting migraines when I was about 10 and had my first of two strokes at 12. Yet, even through all of this I never thought of myself as being able to use the term chronically ill. It was a big mental shift that happen as I started to reach out and joined an online community and started doing more research into my conditions.

No, I’m not just finding out about it, but as I get older thing change: more tests, more doctors and different concerns. I know my health which has been pretty fantastic considering, will not always be that way. As a Fontan patient I will eventually have liver issues. Since I’ve had two stroke, even with blood thinners there is always a possibility it can happen again. I’ve had five OHS and numerous heart catheters and other procedures. There is always the possibility of another surgery, though I’m not sure what it would be.

In addition, other than a few kids I meet in the hospital,I didn’t know anyone like me. I always just thought this was me. I know kids with diabetes, but I spent years without taking medications. My illness was invisible unless you looked at the scars on my chest and back, or realized that my blue lips or nails aren’t from lipstick and nail polish. Also, since my last surgery, I look pretty pink most of the time.

I recently had a coworker ask, “How do you deal with it?” My response was to shrug, I don’t know anything else. Unlike a lot of people, I wasn’t diagnosed later in life. It has literally been part of who I am since I was born and I have always known about. There was no slow onset of symptoms or a sudden or steady loss of ability. I have actually gained more ability to do things as I’ve gotten older and with each surgery. Other then a stroke at 19 during my first year of college, and catching H1N1, I haven’t had any serious health issues since my fifth OHS at 14 years old.

Now that I’ve had this realization, I feel better and not so alone. While I didn’t have major issue, my heart condition and migraines put limitations on where I go, how I did things, with who and how much. Now that I realize there are others like me, it’s not so lonely and I don’t feel as much guilt about not doing or how I feel.

Getty Image by KristinaJovanovic

Originally published: May 14, 2018
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home