On the way to high school graduation rehearsal, a classmate made an unusual confession. “I’ve never told you this,” he said. “But I’m really sorry about your heart.”
Rather than feeling touched by his words, I felt a little insulted. As an optimistic 18-year-old, I had never even considered the fact that someone might feel sorry for me because of Long QT Syndrome.
“Oh, don’t apologize for it,” I said. “It’s just something I live with.” I tried to explain that even though LQTS was important and serious, it wasn’t something I needed pity for. And I certainly didn’t want his pity.
Throughout my childhood, my parents helped me see the blessings and possibilities of life—not the limitations of LQTS. They raised me to live in hope and gratitude, not fear and self-pity.
Now, several years later, with a daughter of my own and a baby boy on the way, my mindset remains the same. Yes, it’s important to understand the seriousness of a LQTS diagnosis. But it’s equally important not to let that diagnosis rule my life.
I have a deep appreciation for life. Most days, I only think about LQTS for a few minutes when I take my beta blocker and give my daughter hers. Still, the knowledge of how serious this condition is and the dangers associated with it have helped me appreciate life at a deeper level than I would otherwise. I have learned to see every day as a gift.
I know how to be an advocate for my own health. I know how to say no to things that could be harmful, how to look up drugs on the CredibleMeds app, and how to explain Long QT Syndrome to friends and others I come into contact with. I also know that it’s important to find doctors I trust, and that it’s good to get a second opinion—especially if something doesn’t seem quite right. (If you need a new doctor, the SADS Foundation can help.)
I understand how to listen to my body. When I was a kid, my doctors recommended that I stay away from competitive sports. So instead, I took dance lessons, with the understanding that I needed to be careful and could take breaks if I needed to. I learned to be aware of my own physical boundaries and listen to them, rather than trying to push beyond them. My health is more important than the world’s expectations of me, and there’s a sense of confidence that comes from knowing I’m doing what’s right for me.
I have a big reason to prioritize self-care. Self-care is important for everyone, but it’s so easy to let the busyness of life get in the way. Having LQTS has helped me prioritize my well-being—especially after having a baby. For women with LQTS Type 2, the postpartum phase can be a high-risk time. Keeping that knowledge in the back of my mind helps me slow down and be gentle with myself.
I have a strong sense of self. I’m not “the woman with the heart condition.” My identity comes from so much more than this one aspect of my life. I am a wife, mother, a sister, a daughter, a friend. I write, I bake, and I craft. It would be a shame to let LQTS be the defining factor of my identity. For me, Psalm 139:14 has been a guiding verse: “I praise You because I am fearfully and wonderfully made; Your works are wonderful, I know that full well” (NIV).
My heart doesn’t work the way most people’s do, but I don’t see that as a mistake, because living with LQTS has taught me so much.