Suffering from Lyme disease and co-infections is a very different experience for children as opposed to adults. This blog offers a child's perspective on the disease and the impact it has on someone of such a young age.
As an adult, treatment is tough– it’s hard on the body. As a kid, treatment is about missing out. Missing out on the adventures, playdates, birthday parties, etc. Being a teenager, I can personally conclude that pain from FOMO can be worse than the pain from a disease.
Instead of crying about how sick I felt, I cried because I wasn’t at school. I missed my friends more than I missed my health- that is the difference between a sick kid and a sick adult.
My name is Evie Shurslep. I’m a 15 year old living in New York who was diagnosed with Lyme and co-infections such as Babisia, Bartonella, and Tick-borne Relapsing Fever at eight years old. Looking back, instead of remembering how sick I felt, I remember the things I missed out on and the inconveniences I had. The constant doctors appointments, missing sleepovers, and leaving playdates because I didn’t feel good was the worst part to 11-year-old me. The first time I was sick, it went away within 30 days of antibiotics. All I remember from that short period of time was missing a horse-back hike with my family. I was back home throwing up, sick as a dog, and I just cared about the hike. In fifth grade, I got sick again. I missed seven weeks of school and could barely get out of bed. Instead of crying about how sick I felt, I cried because I wasn’t at school. I missed my friends more than I missed my health- that is the difference between a sick kid and a sick adult.
I worsened headaches by crying about sleepovers that I missed. I didn’t care about the headache enough to control myself- sleepovers were the most important thing to me. I have one distinct memory of being at a sleepover birthday party and feeling nauseous from my medicine. I left that night, and cried the whole way home. I woke up at 7am and went back instead of sleeping in. I prioritized fun with my friends over my own health.
My treatment involved strict diets, such as high-fat and gluten, sugar, and dairy free. I did not mind eating like this at home, I only minded it when eating out with friends. Ordering at restaurants embarrassed me, and I didn’t like that my house had worse snacks than my friends' houses. I hated explaining my diet to kids my age, and I hated not being able to eat with my friends after baking. One time, I was on a playdate with my friends and we baked dirty brownies (brownie, cookie, Oreo bars). I got so upset that I couldn’t eat with them that I texted my mom sadly. I remember her text back: “Short term pain for long term gain.” However, in a child’s mind, short term is important, long term is irrelevant. The fact that all my joints were hurting, I was dizzy, and I was short of breath wasn’t important to me– despite the fact that I knew if I ate that much sugar I would not feel good.
I did other forms of treatment too, such as liquid IV and taking an insane amount of pills. The inconvenience of this didn’t matter to me, the few “yucky” medicines mattered to me. One of the pills I took was doxycycline, which made my stomach hurt. I was late to homeroom almost every day because I had to go to the nurse to eat crackers in the mornings. The crackers absorbed the medicine and calmed my stomach. The nausea was bad on its own, but being late to see my friends made it so much worse.
In fifth grade, after being home for seven weeks, I started to feel better and my fever went away. I was supposed to return to school on a Monday, but my dad’s company gave him tickets to an event where you meet a bunch of celebrities for that Monday. My siblings both went, but I decided to go to school instead. It was more important to me to see my friends and return to school. Getting back to what I had missed out on was the most important thing to me.
Three years later, I was still involved in treatment. I got SO frustrated that I had to go to so many doctors, that I just started complaining less in hopes that I would have fewer appointments. To me, doing my activities in pain was better than missing activities to go to appointments. My parents saw through this, of course. From an adult’s perspective, treatment is about suppressing symptoms. From a child’s perspective, treatment is about returning to your social life, playdates, and fun times.
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The above material is provided for information purposes only. The material (a) is not nor should be considered, or used as a substitute for, medical advice, diagnosis, or treatment, nor (b) does it necessarily represent endorsement by or an official position of Global Lyme Alliance, Inc. or any of its directors, officers, advisors or volunteers. Advice on the testing, treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient’s medical history.
*Opinions expressed by contributors are their own. Evie Shurslep is 15 old girl from Larchmont, New York who attends Rye Country Day School. She was diagnosed with Lyme and multiple co-infections after having two long waves of sickness- one at 8 years old and one at 11 years old. She experienced another wave at 13, and has done many different treatments since then. As a GLA contributor, she aims to help other families dealing with a “mystery illness,” as many people spend years struggling with Lyme before being diagnosed.