“What is that?” Someone asked me when I was in high school. “It’s a heart monitor,” I responded. I didn’t mind her curiosity, I was always open about my journey. It was what she said next that bothered me. “You’re so brave for deciding to show it off.” I simply thanked her and walked away. The comment has always stuck with me. Why is it brave to wear clothing that exposes a piece of medical technology? How is it that I was complimented for my bravery but somehow felt like I was told to cover up?

As someone  who lives with a rare heart disease – ARVC – there has been shame, there have been stares, there have been many many tears. I often wear adhesive heart monitors on my chest, a necessary tool to monitor my day to day heart activity. I also have scars, in total there are about 6. Most are tiny and hidden but my favorite lies just under my left collarbone. Underneath this scar tissue lies a device, an ICD, that has the power to save my life with the ability to shock my heart to return to normal activity.

It has not always been my favorite. In fact, when the bandage first came off, I hated it. I had always wanted to love my scar, to show it pridefully, proving nothing can stop me. But seeing it for the first time after a few weeks of healing, I hated it. All I wanted to do was cover it up, hide it from the world. I didn’t want to have to answer questions about it, like I did with heart monitors. I felt ugly, I saw the bruising and the clotted blood around it. I wasn’t amazed at how my body was healing around a new piece of life saving technology, I was disgusted. I wore shirts that hid the scar, I walked around the halls of school hoping no one would ask me how I’m feeling and remind me I’m different. 

Weeks later I decided enough was enough, covering up for the comfort of others was ridiculous. Even though showing my scar was terrifying for me, the process of beginning to love it started with showing it, returning to my normal style and putting on tops that had been gathering dust in the closet. I could withstand whatever curiosity came at me because I knew I had been through harder things. I took to social media, trying to find people like me who were proud, trying to give myself that extra boost of bravery. 

I found the HeartCharged sisters and I had never been more inspired. Bethany and Hannah Keime are two ICD warriors. I was not yet confident in my beauty, not yet ready to say that my ICD does not change me. After following their account and seeing how they posted stunning photos showing off their ICDs I began to understand that my ICD is beautiful. A photo of Bethany proudly showing off her device included the caption, “When the bandages came off from the surgery, I truly embraced self-acceptance and pivoted in my idea of beauty”.  I began to believe that the idea that the device is there to give me a third chance at life is gorgeous. And I began to believe that my ICD did not affect my beauty, it enhanced it. My scar was a badge I would wear with pride. 

Today I show it off, wearing strapless tops and proudly responding to curious stares with a kind smile. My idea of fashion has changed too, I became more aware of what I was wearing when I was trying to hide. Now accepting who I am, scars and all, my fashion has become a reflection of that. I own lots of pink and red, advocating for heart disease awareness. I’ve even been lucky enough to be invited to two heart disease awareness fashion shows where I got the opportunity to show my beauty and tell my story, all while wearing gorgeous red dresses. I proudly invite people to ask me questions by posting on my Instagram, even showing up close scar pics. I’ve come so far from the girl who was called brave for wearing what she wanted while also having medical technology on. I often think of that backhanded comment about my bravery and instead I let it power me because I am brave. Now when I have to wear heart monitors I show them off. As do the HeartCharged sisters with their ICDs, Bethany wrote, “I proudly parade myself about in clothes that clearly show my defibrillator out…See my bulge. Know that I'm different. Let it start a conversation. One that ends with you understanding more about me and my rare people. We are out here, often thinking we have to hide ourselves in plain sight just so you don't have to think about what we have to live with.” Scars and medical technologies do not make me less beautiful, they are proof of my bravery and that is one of the most beautiful things about me.