In Their Own Words:

Stories of Children and Adolescents

Children and adolescents have unique issues with tick-borne illnesses. As the Children’s and Mental Health Editor of the Lyme Times, a quarterly publication of the LDo (formerly CALDA), I have had the privilege of editing stories written by children for a special column titled, “In Our Own Words: Stories of Children and Adolescents”, a regular feature I began in the Summer of 2007.

Not only do these stories allow us a window into the lives of these children, but they also give young readers the opportunity to hear from their peers. I hope you gain from the experience of reading these stories, as I certainly have.

These stories all appear on this website with the special permission of the California Lyme Disease Association, Inc.

Lyme disease has stolen my ability to be hugged. It’s awful. I used to love to hug people, but one of my many Lyme symptoms is hypersensitive, painful shoulders. If someone touches them, it feels like I’m being stung by a thousand bees. And the worst part is that people don’t understand because I don’t look sick. My extreme shoulder pain is something that no one can see.

In addition to my shoulders, I have severe pain in my back and knees. I hurt too much to stand, walk or sit upright. Even a conventional wheelchair won’t work for me. I need a special wheelchair with a reclining back. Often, when people see my wheelchair for the first time, they say, “Wow, that sure looks comfortable!” But I am never comfortable.

Because I just look like a regular girl sitting in a wheelchair, adults always seem to want to pat me on the shoulder—even people I’ve never met before. When people approach me, I have to remember to turn my wheelchair to block them from touching my shoulders. Many people don’t pay attention to that signal, reach over and pat me anyway. My friends and I joke about putting spikes on my shirt, but I doubt that would help. I wish people would understand that when you have chronic Lyme disease, most symptoms are not visible, like my extreme pain.

Like many others with Lyme, I have also suffered from memory loss, fatigue, depression and difficulty concentrating, also invisible symptoms. This makes it hard for teachers to understand how hard schoolwork can be for students with Lyme. And don’t even get me started on herxing, or other bad reactions to medications! [Editor’s note: A “herx”, or “Jarisch-Herxheimer reaction is a flare of the symptoms, often severe, as the antimicrobial medications kill off the infection].

I often have a smile on my face and I love to laugh. But that only works against me, when it comes to people understanding and appreciating the extent of my illness. When people look at me, they see a 15 year old girl who is just having a fun time. They don’t realize that every second of every day I am suffering.

Lots of people come up to me and say, “You look great!” And I know that they mean it as a compliment, but that makes me feel like they don’t believe that I am truly sick. Sometimes I am bombarded with comments about how much better I am doing, made by people who really have no understanding of the situation. It only makes me feel more disconnected when they make comments like these.

I have gotten to know a number of other teens with Lyme who also say that people don’t really believe they are sick. We’ve all been disbelieved at doctor’s appointments (before we found doctors that diagnosed our Lyme), school, and with family and friends. Sometimes I hear comments behind my back from people at school about how dramatic I am being and how I am faking all of this for attention. Why in the world would I fake these miserable symptoms? Why would I want this kind of attention? Why won’t people just keep their comments—and their hands—to themselves?

A positive thing that has come out of this whole experience is that I have found talents I didn’t know I had. Because I haven’t been able to walk, I had to learn things I could do staying put. I focused on teaching myself how to shoot and edit music videos. It is something that I can do sitting or lying down, and even when I get better I will continue to do this.

Thanks to the California Lyme Disease Association, Inc. for special permission to reprint this story. It first appeared in the Summer 2007 issue of their publication Lyme Times.

Rachel’s Story(Age 15, living in California at the time)

Peter’s Story(Age 15, living in NYS at the time)

I am a junior in high school, and for most of my life I have lived with Lyme Disease.

It started in second grade. I had no idea what Lyme Disease was back then. The only thing that I did know was that my mom had it. She was virtually bedridden and in great pain. It bothered me so much to see her like that.

When I started to feel sick, I didn’t really know what to think. My pediatrician said that I was just upset because my mom was so ill. My doctor’s denial of my illness made me feel alone and scared As bad as that was, going into school made me feel even worse. I kept falling asleep in class; I would get fevers and horrible chest pains. I also became extremely sensitive to sound, so much so that I had to cover my ears in music class because the sounds of the music would give me terrible headaches.

At that point, my pediatrician told me that all of my problems were caused by a virus. My mom finally took me to a Lyme doctor who quickly diagnosed me with Lyme. My treatment began with the right medications prescribed. What I didn’t know was that the treatment would be very rough. When I first started to get the Herxheimer reactions [flare of the symptoms caused by die off of the infection], I didn’t think I would be able to continue. The pain that I experienced was so horrible and so frightening; all I wanted to do was curl up into a ball and give up. I managed to make it through the hardest part, and my body began to make antibodies for the Lyme, fighting off the infection. From that point, I would have good days and bad days. Some days would be worse then others. When I started high school, my health started to decline again. I was struck by depression, memory loss, extreme fatigue, and several other symptoms. I started treatment again and I am also under the care of several specialists. Since then my social activity and my school grades have both improved substantially.

Looking back on what had happened I would say that Lyme disease has taken away my childhood. I was never able to go out with friends. Some classmates thought that I was faking my illness. Hearing that always made me feel bad. It made me think to myself, “How can someone ever believe I was faking this kind of suffering?”

Aside from dealing with what my classmates said, I would also have to deal with some of my teachers. Even though my parents went to school and talked to my teachers, some of them never understood what I was going through. I went through eight years of suffering, and I am still combating this disease.

However, I also feel that Lyme disease helped me mature in some ways. I have become very empathetic and kind towards others who are sick or just have a rough life. I want to help other kids my age so they won’t have to go through what I have gone through. Sometimes, the pain and suffering that someone goes through adds another dimension to a person, one that understands the suffering of others.

Thanks to the California Lyme Disease Association, Inc. for special permission to reprint this story. It first appeared in the Winter 2007 issue of their publication Lyme Times.

Meghan's Story(Age 17, living in Connecticut at the time)

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.

Mary's Story(Age 12, living in Florida at the time)

Everything started when I was bitten in a state park in Florida in May 2000. I was with my Mom and sister, who were also bitten. I still vaguely remember my Mom pulling a strange bug out of my neck. Things started to change after that trip. I would get tired going up the stairs and come home from school with headaches. We saw our pediatrician, who concluded that we didn’t have Lyme disease since we didn’t have the bull’s-eye rash, and, according to him, Florida was not endemic for this disease.

For some reason, my mom was getting sicker faster than we were. After being misdiagnosed by 3 doctors, she was finally diagnosed with Lyme disease and Ehrlichiosis.

Months later, as we were gradually getting sicker, my parents took us to New Haven, CT, where we saw a doctor who had treated several thousand kids with Lyme. He diagnosed us, and started treating us. By the following spring, I was running again during recess. Over the summer, after hearing about my progress, my LLMD told my parents that it was time to stop antibiotics.

Everything was just perfect until October of the year 2005. Soon after, we figured out I was relapsing because the stress of school brought out my symptoms again, causing me to need to go back on antibiotics. And just as before, I felt better. Of course, I still had the disease, but it wasn’t attacking my body as severely.

As of right now, January 2009, I am off of antibiotics again. I’m an eighth grader at a prep school. Once again, I’m feeling a little under the weather. And I’m sure that just as before, I’m going to need to start antibiotics AGAIN, but it is okay. I’ll do absolutely anything to get healthy. As I see countless people suffering from this disease, I have just recently thought of becoming a doctor. I want to help people that are having trouble with their uninformed local doctors.

Since I often stay at home resting, I have a lot of time to do some of the things I love: drawing in my sketch book, cooking crazy recipes and reading.

Like almost every single teenager I know who has Lyme, I have been harassed, annoyed, put down, and insulted by friends and teachers who don’t understand the disease at all. These people are ignorant and have no right to judge us, or assume that we’re faking. These people don’t bother to pick up a book or even Google it, to learn about Lyme disease.

This disease has taken a lot away from me. I’m not always able to go out with friends, not able to stuff my face with doughnuts or ice cream, because sugar is not good for patients taking antibiotics, and countless other things. It’s just plain useless to list them all. The smile we try to put on our faces and all the laughing we try to do, despite the pain, makes others think they’re completely right and, that we just love the attention we get from being ill. I don’t enjoy this. None of us do. But… believe it or not, there’s a way out of this and that’s patience; patience and a heck of a lot of hope. Because we all know it’s easier to give up, some see no sense in trying to “hang on” or “hope for the best” since its challenging to keep trying to get better. But here’s something I have found to be true: either you can cower under a rock and wait for the storm to pass, or you learn to dance in the rain.

Don’t linger in your intolerable present; look forward to the bright future. Its waaaay better there. Trust me.

And I like this thought written by Hermann Hesse:

“I have always believed, and I still believe, that whatever good or bad fortune may come our way we can always give it meaning and transform it into something of value.”

Thanks to the California Lyme Disease Association, Inc. for special permission to reprint this story. It first appeared in the Spring 2009 issue of their publication Lyme Times.