Hi, my name is Kayla and I’m 12 years old. I met “Sick Chick” because we have the same primary care doctor, and she asked me to do a post for her website. Here’s a little bit more about me! I’m from Northern California. I love volleyball, school, and hanging out with my friends. I have Systemic Mastocytosis, Ehlers-Danlos Syndrome (EDS), Common Variable Immunodeficiency (CVID), Exercise Induced Anaphylaxis, Severe Food Allergies, as well as multiple other diagnoses, but these are my main ones.
I’ve realized that being a “normal” middle schooler with these diagnoses is really hard. 95% of my friends have NO idea that I’m chronically ill. The reason they don’t know is simple – I don’t want to be pitied or looked at differently. Hollywood has created this “sick kid” image where unless you have oxygen, a wheelchair, a PICCLine/Port, etc. you’re not sick… false!! I mean, yes some people have that, but others don’t. I may not “look” sick to society, but inside my body is constantly fighting itself. I am always in pain. One of the most hurtful things someone can say is, “You don’t look sick.” It’s like, “Thanks for the lovely reminder that I’m sick, but you just can’t see it!”
I have done my best to keep it a secret, but people are curious and ask a lot of questions. Like in my new school. I missed 33 days of school and started half way though. After about a month people got annoyed that I wouldn’t tell them. A girl actually followed me around for a whole day asking me “Why?” repeatedly. I swear, I was about to punch her. Some may not realize how hard it is to share something so personal. And then there are those impossible days where you just can’t do it anymore. For example, I was at school and it was towards the end of the year. I was told the week before that if I didn’t start eating I would have to get a feeding tube. At this time only three people knew about the medical side of me. We were at lunch and I was sitting with my friend, “L”, and I just broke down. I was crying, I said I was scared about the feeding tube, and that I probably wouldn’t be able to come to school. Then there was my other friend “J” who had no idea why I was crying. That day was hard. In the end though I have no feeding tube, I have a PICCLine instead.
I sometimes wish I didn’t have this life, but then I realize that I wouldn’t be who I am without it. Most people who aren’t sick think the person is made up of the illness, but that’s not true. Yes, we have the illness and yes, it has built us into who we are today, but we are not made of the illness, the illness is a part of us. Just like if you play a sport, that sport is just a part of you. Every chronically ill kid has better days than others, but I believe in living for the day. Don’t worry about tomorrow. That may sound pretty cheesy, but it’s true.