By Clare Almand
13 Feb

My Name is Clare and I Have CHD (Part 1 of 2)

Tuesday, February 13, 2018

I don’t consider myself a “sick” person.

If I count the number of years that I’ve had heart surgeries and procedures, I can say that I’ve spent most my life “healthy”—as in “not being hospitalized.” Only 11 of my 31 years have I had heart issues that needed treatment, either medicinal or surgical. This ratio of “healthy” years to “sick” ones is an important part of my identity. And because I don’t consider myself sick, I don’t tell people regularly about my chronic illness. I rarely post updates about my health on Facebook. In fact, I normally don’t tell most people when I’m having procedures or surgery, except for a few close friends. However, keeping this information to myself can backfire.

Take last week, when I had a simple cardioversion procedure. Unbeknownst to me, I went into atrial fibrillation the first week of December and never got out of it. I found out in mid-January after a transmission from my ICD was sent to my doctor. (Guys, this means that my pacemaker now masks my a-fib so that I don’t realize I’m in it. It’s awesome!) Cardioversion is one of the most non-invasive procedures a person with CHD can have. I went to the hospital, got put under anesthesia, got shocked by an AED, and went home a couple hours later. I never go home the same day! When you’ve had two open heart surgeries within four months of each other when you were nine because you’re a (profoundly sick) badass, cardioversion is like a teeny tiny baby procedure for babies in comparison. It was not a big deal to me, so I told almost no one.

And then my mom posted something on Facebook about me having a procedure.

A lot of people don’t know that “procedure” and “surgery” are not interchangeable. If they cut you, it’s surgery. If they don’t cut you, it’s a procedure. I awoke the next day to a few texts from some close friends and family who were concerned that I had another surgery and didn’t tell them. Yikes.

I had to apologize and explain myself. Trying to downplay getting your heart shocked back into a normal rhythm is not the easiest task. At the end of the day, it’s not a normal thing that happens to healthy people. I am not a healthy person in the traditional sense. I have congenital heart disease, which is a chronic illness. I will continue to have heart problems, whether it’s an abnormal rhythm or a hole or something else. I need to learn that the people who love me want to know what’s going on with my health. I absolutely should not be afraid to tell friends about it. But I shouldn’t be afraid to tell anyone about it.

 My fear of sharing with not-so-close friends or strangers is because I don’t want to be the “sick girl” or the “heart girl.” But the truth is, despite my 20 surgery-free years, my illness has always been a huge part of my life. It informs what I do and how I act daily. At times, my life is incredibly different from my friends’ lives. We’re all searching for fulfillment and purpose and meaning and what if I’m different because I’m supposed to talk about it and I’m supposed to share my experiences on a larger scale? I’ve been thinking about purpose a lot lately, and I’ve decided it’s time that I fulfill mine.

I’ll explain in Part 2. Stay tuned…

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