The Realities of Being a Teen With a Life-Threatening Condition


I’m a teenager. I’m supposed to be thinking about dating, friends, school, college, and planning for my future. The last thing on mu mind should be dying, but when I have a life-threatening genetic disorder, this is my unfair reality.

It’s not talked about much, but kids with life-threatening disorders may not live to go to college, or even to graduate high school. It’s an awfully grim topic, which is probably why it’s avoided, but this stigma affects kids like me. Just because it makes people uncomfortable, it doesn’t mean that we are affected any less.

When my long QT syndrome reached the worst point it has ever been at recently, my doctor told me I could die. Multiple doctors have told me this throughout my life. Some have tiptoed around the subject, and others wanted to make sure I heard loud and clear.

As a kid with a life-threatening illness, here are some things I want you to know.

1. I need people to talk to. Even though death might not be the most cheerful of topics, I need someone to help me sort out my feelings about it. The reality is that it can happen, no matter how much we think positively. Whether it’s a parent or a close friend, this can be especially helpful for us to sort through our own emotions.

2. I need to plan a future, but also accept that it might not work out. Future plans are awesome, and I love to imagine an awesome future, but my future is so uncertain that nothing is for sure.

3. Blind positivity is not helpful. Although I would like to be magically cured, I may never be. Although I may have a chance of reaching remission or being cured, I don’t need to stay positive all the time. I love being idealistic as much as the next person, but sometimes, being realistic is necessary.

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