Having Congenital Heart Disease; I’m More Than My Disability

When talking about Congenital Heart disease, which are multiple heart defects, both structural and electrical occurring in utero, I struggle to label it as a “disability”. That word, that admittance of a disability, labels me as such on medical applications, job applications, a professional work place, and even in sport.

I want to break the stigma of what it means to be disabled. What it means for others to see that word associated to my name. Some see it and automatically judge as “lazy”, or even “sick”. Some even assume that it means individuals like me will not live up to their peers.

I’m here to tell you that those opinions are outdated, inappropriate, and I’m here to share my story with you.

I started off in a professional workplace in 2005 as a receptionist. I was eager to learn about the company, reached out to senior management, and eventually found myself configuring the product, and being recognized as the “energizer bunny”. You see, in 2008 I was pregnant with my son, and worked Monday-Sunday, 7am-6pm. I even worked up until the day before my son’s birth, because I was committed to my future there.

Everything was fine, until 2010. I had a fast heart rate at work one day, over 180 bpm, and didn’t know what was happening. I just ignored it, struggled to sleep, and after a few days, my heart rate was back to normal. You read that right – after a FEW DAYS. I didn’t seek help – I thought it was just stress from being a parent to a toddler, going to school full time, and working full time.

A couple month later, I was rushed to the ER in the middle of the night. My heart was in a dangerous arrhythmia. Medication was given to me to stop my heart, in hopes of restarting it back to a normal rhythm, but eventually, I was cardioverted. My heart stopped for a third time, and I was brought back.

I was in the hospital for a couple days, and reached out to my employer at the time, a company called Unicru, which no longer exists due to an acquisition. They were understanding that I would be at the hospital for a couple days.

I returned to work the next week, knowing that I would need surgery within the next couple of months to help my heart. I was still working hard, pursuing my career, going to school, being a parent, but now taking heart medication every day to help my symptoms.

Within the next couple of years, I was in and out of the hospital for three surgeries.

… They stopped being so understanding.

I remember being told I needed to claim my disability or lose my job.

I remember being called during doctor appointments, because I needed THEIR permission every time I visited my cardiologist.

I remember being targeted by my boss, and the HR team for my disability, because I was no longer an “easy employee”.

Here is the thing – I never missed work, other than for my appointments. I was still going to school at night, even taking finals the day after surgery. I will still a caring Mom to my son.

My employer just saw me as a disability. They just saw me as someone who would probably need multiple surgeries, time off here and there, and they didn’t want to deal with it.

When the company was going through lay-offs, I knew I would be hit. Honestly, I was relieved. To prepare, I documented all of my configuration changes for each customer that I was working with – I took note of every change request that was pending, which still needed to be completed, and the dates of when all of my work was going into production. I even wrote down roll back plans, in case any configuration issues arose.

When I was called in and laid off, I let my manager know what I had done, and provided all of my work to her.

Does that sound lazy? Does that sound like I wasn’t a hard worker? NOPE!

After this experience, I made the decision to never talk about my disability or inform any employers moving forward. I was tired of being targeted, even if I was the hardest worker.

That all changed when I started at Nike. I kept my heart problems quiet the first few months, then MLK Jr. day happened in 2015, and I was awakened to a fast heart rate… then it stopped. I remember the ringing in my ears, I remember gasping to breathe and the weight on my chest, and I finally remember my sight turning into a dark tunnel. My heart started up again on its own, and that was that.

The next week, I was driving co-workers up to Seattle for a Nike recruiting event, when I was asked how I spent MLK Jr. Day. Jokingly I said, “well, my heart stopped, so that was fun”. The car went silent! “WHAT???!! Why are you driving the car right now?!!” they asked. Everyone laughed.

That was when I told them about my heart problems, and what I encountered in the past. You know what I received that day? ACCEPTANCE.

Since then, I have gone on to multiple promotions at Nike, becoming a competitor on NBC’s American Ninja Warrior, competing in rock climbing/bouldering events, and even running 80-90 miles per month.

The next time you see that someone has marked ‘Yes’ on paperwork, labeling them as having a disability, maybe ask them how that has shaped them into the bad ass they are today! Ask them how their disability has created a fire in them to be stronger than others, more hard working than others, and how it changes their perception of the world around them.

Having a disability, which has taken me through hell and back, has been one of the most eye opening experiences that I think anyone can go through. It has taught me compassion, empathy, and understanding of others.

If you work for an employer who makes you feel less than you are, or that you have to hide your disability, it’s time to find a new employer. You are better than that!

If any of you struggle with this, and just need someone to talk to privately, please contact me.

“The only disability is when people cannot see human potential.”― Debra Ruh

Best,

Molly

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