In Her Own Words (Age 17, living in Connecticut)
Before I got sick, I was one of those kids that was constantly outside. My best friend when I was little was a boy who lived in my neighborhood. We spent every day during the summer running around the yard, trying to climb trees in his backyard, and in the fall we would rake up the leaves only to run and jump into them so much that we’d have to rake them up all over again. I loved being outside – I still do – and I had no idea that I was at any risk. Back then I don’t think anyone really did. I’ve had Lyme disease for 10 years.
Somehow I’ve gotten used to the constant, 24-7 headaches and insomnia. Most days when I wake up after only sleeping for a few restless hours, I feel normal. I still feel sick, but I don’t feel like someone that doesn’t fit in with the rest of the world. I forget that all of my friends are in school by now, and that I probably won’t see them for a week or two, possibly even a month. For other friends it has even been years. The past few years I have had some problems with some of my friends. After being in and out of school from 3rd grade to senior year, it’s hard to keep in contact with all the friends you make over the years. The one good thing that came out of it is that I’ve realized which friends I can truly trust to help me with my problems, and who will leave me helpless. It’s a hard lesson learning who your friends are, especially when you’ve lost so many friends along the way, but in the end I’m glad that I know now, so that in later years I won’t be caught off guard.
My friends always see me when I’m feeling relatively good, so sometimes they ask me if I’m still sick, because I look so good, or because I’m always smiling. It’s hard for them to understand that when I’m not feeling good, I do not leave the house. I don’t get dressed, and basically just sit on the couch all day. It’s all I can do. But when I’m feeling good, and I’m excited to see my friends, you can tell, and that’s what they see. Especially when I haven’t seen them for a few weeks, looking forward to hanging out will heighten my mood incredibly.
I went to a doctor back when I was first diagnosed who just looked at me – not even bothering to look at my health charts – and said, “She’s fine, she just needs a good kick in the behind and she’ll go to school.” And I have no doubt that the times that I have been in school that there have been people who have looked at me and thought, “Why was she out of school in the first place? She looks fine. She’s probably faking it”. But I’ve learned that it doesn’t matter what other people think. I know the truth, and honestly that’s all that matters.
Looking back, I can imagine who I would have been if I hadn’t caught Lyme disease. But I don’t regret being the person I am now, because I think in the end I’m a better person for it. I appreciate everything I have so much more and I don’t know what I would do with my family. They’re like my rock. Sure, sometimes we’ll fight over the stupidest things, but in the end we’re always here for each other. I’ve learned so much from every experience I’ve had that when I’m ready to go out into the world on my own, I know I’m going to be ready.
Thanks to the California Lyme Disease Association, Inc. for special permission to reprint this story. It first appeared in the Winter 2008 issue of their publication Lyme Times.
© 2008 California Lyme Disease Association, Inc.
