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The Shame I Felt as a Teen With a Congenital Heart Defect

I was born with a congenital heart defect, and at 14 I had a major open-heart surgery that affected my experience throughout high school. Even as I write this story, I find it hard to talk about.

As a disabled advocate, I write a lot about disabilities and mental health as well as my experiences. However, speaking about my experience growing up with a disability and my congenital heart defect has always been rough, especially when I was a teenager. The desire to be “normal” and fit in with peers is hard when you are a teenager with a disability. Growing up, I never talked about my heart condition because I didn’t want people to associate me with my disability. I felt guilty about taking space in the disabled community. I still was able to do most tasks that were expected of me, so I felt I wasn’t worthy of talking about how my disability affected me.

I looked to my father who had become disabled and was always in pain. While he always advocated for me and fought for my rights, I saw how he reacted to his own disability. He wouldn’t talk about it and often hid his pain. In return, I believed that talking about my disability and my pain was attention-seeking and a sign of weakness. As a teen, I didn’t want to be seen like that. So I kept quiet.

In between my freshman and sophomore year in high school, I had my second major open-heart surgery since I was born. Up until then, I was always able to keep my disability hidden. Just a couple of my close friends knew about my heart condition. It was easy to hide as at that point, my open heart surgery scar from when I was a baby was barely visible. After my surgery, my heart condition was brought to the forefront, and many of my friendships changed. I was seen as someone they needed to protect. As a teenager, I wanted to be seen as a “normal” teen. I wanted to rebel and do things that normal teenagers do without people focusing on my “heart problem.” But I felt like everyone wanted to put me in a protective bubble. I was sheltered and my mental health was often ignored.

When it came to visiting doctors, I hated talking to them about what was going on. I felt like no one cared about my opinion, and if I just shut it all out I could ignore it even more. During my cardiology appointments, my parents would take control. The doctors and my parents determined what happened to my body. Control became an issue for me. I felt like I had to figure out a way to control my life and my body. My mental health took a downturn. On the outside, I seemed like a teen who had it all figured out. I had straight As, I was involved in school and I had a boyfriend, but inside I was struggling. I didn’t know how to talk about what I was going through, which caused a lot of mental health issues.

It wasn’t until I was in my late 20s when I started following other disabled advocates on social media that I started to take pride in my disability. Participating in the online community brought a new understanding of having a disability. I realized I wasn’t alone in my experiences. I started becoming more proactive in my cardiology appointments and learning and researching more about my condition. I still have trouble advocating for myself but I have learned how to ask others for help.

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