What I Wish I Could Tell Myself When I Was Diagnosed With Lyme Disease in High School


After years of sickness and hundreds of tests, a doctor finally diagnosed me with chronic Lyme disease in October 2011. I missed my sophomore, junior and most of my senior year of high school. The high school years are already complicated, but add a chronic illness into the mix. Those years were extremely sad and here are some things I wish I knew when diagnosed.

1. It’s not all in your head.

So many doctors and other adults in my life told me I was not as sick as I was that I actually started to believe them. I got so used to being sick that there were days that I told myself that I was faking it. Now, looking back, I feel awful for 16-year-old me. Not only did I think I was lying to others, but I felt like I was lying to myself. I felt like a failure. Because I thought I wasn’t actually sick, I thought that my entire life would like this. You won’t realize how sick you are until you’re healthy again, but I promise that you will get better.

2. People will judge you.

There were plenty of days where I looked the way I felt (aka miserable), but most days, I looked completely “normal.” Chronic Lyme disease is an invisible illness. When I physically felt and looked better, my neurological symptoms were what kept me out of school. I was afraid to leave my house, even just to go on a simple trip to the grocery store, in fear that someone from school would see me and think I was faking. I vividly remember seeing one of my teachers when I went to pick up Panera Bread and came home and cried because I knew she was skeptical. Looks can be deceiving. You need to get out of the house as much as you can when you’re up for it. People will judge you no matter what, so just do what is best for you.

3. Societal norms are silly.

Just because most people go to bed before 12 a.m. and wake up before 9 a.m. does not mean you have to, too. I suffered terrible insomnia, or “lymesomnia” as we like to call it. Once again, I felt like a failure each day. I was constantly called lazy because I woke up around 2 or 3 in the afternoon. But what people did not understand is that I could not fall asleep until at least 4, 5 or 6 in the morning. Finally, someone helped me realize that just because the average person’s day occurs when the sun is out, does not mean mine has to, especially because I could not go to school anyway.

4. You’re going to lose “friends.”

Most of the friends you have now are not going to be there when you get better. When you are sick for so long that the new normal becomes life without you, they’re going to move on. And it’s going to suck. You’re going to have plenty of days when you don’t get any texts. You’ll watch “One Tree Hill” wishing you had a Brooke to your Payten. But, I promise it’s for the better. Why would you want the people who won’t stick by you during a storm next to you in blue skies?

four teen girls wearing green shirts standing on a dock
Kerry (second from right) with three friends she met through having Lyme disease.

5. Being sick is the greatest thing to ever happen to you.

I know, it sounds ridiculous, but hear me out. All of the hours you spent trying to finish your senior year on time so you can graduate with your class while all of your friends are catching senioritis will prepare you for college. You did almost a year’s worth of schoolwork in a few months. You can do anything. All of those doctor appointments and meetings with teachers have matured you. You’ll be able to see the bigger picture in life. You will live the rest of your life valuing your health, something most people take advantage of. Most importantly, you’ll always remember that everything happens for a reason and you’re going to be OK.

The Mighty is asking its readers the following: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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