Why It's Been Harder for Me to Be a Chronically Ill Adult Than a Chronically Ill Kid

Being a sick kid is tough, and I will never say otherwise, but being a chronically ill adult is so much harder. When I was young I could just tell my parents my tummy was hurting again and ask them to fix it. My parents would step into the hallway to talk to my doctors about my body so I wouldn’t get too scared while they planned my next surgery and I could watch cartoons without them talking over the TV.

 

After every doctor appointment I got a new toy on the way home or I would get to pick the restaurant for lunch. I thought it was normal to go to the office at 12:00 p.m. and take meds because that’s all I knew. I thought it was cool I got to sit in the class and color while everyone else was at recess. I thought I was normal and going to the doctor was just something everyone had to do every other week.

Then I got to middle school and I started seeing it more. Friends wanted me to stand in line with them for lunch but I couldn’t miss my meds and had a special diet. I would get invited to sleepovers and my parents would have to talk to the other parents to make sure they knew if anything happened these are the numbers you call and this is what their daughter can’t eat and she can’t miss her meds. Going out after school is hard to do when school drains your body and you can barely hold yourself up by the end of sixth period.

The older I got the more I saw and it seems like it happened all at once. One day I felt like everything I went through was the same as everyone else, and the next day I was the outsider.

The fact that I was chronically ill didn’t truly set in until I was a freshman in high school. I moved to a new town with a new school and I didn’t want anyone to think I was different. If I could walk like a cool kid and talk like a cool kid and was completely and utterly healthy like a cool kid, that was exactly what I was going to be. Until that January – I got really sick really fast and there was no hiding it anymore. I lost everyone.

No one wants to deal with “the sick girl.” The friends I had then were more worried about the next episode of “Pretty Little Liars” than keeping up with my issues. I had felt lonely before but it didn’t really sink in until that spring that for the first time I was truly alone. While the people I grew up with were getting ready for prom, I was getting ready for surgery. While the kids I knew for years walked to get their diploma after the best senior year ever, I was having blood drawn and waiting for test results to figure out the next step in my treatment plan. People got their driver’s licenses and I got a new diagnosis.

I tested out of high school with less than a year of actual high school classes, I received honors and I worked so hard to prove everyone who thought I was going to let my illness define my life wrong. I’m trying to prepare to start college and it’s being put off because my health comes first. I’ve missed out on a lot of things and I can tell you stories about things you would never imagine I go through just by looking at me. Being chronically ill is hard. These were the cards I was given the day I was born and no matter how fast I run from all of these things I’m gonna run out of breath.

I can tell you horror stories about terrible nurses who don’t know how to take out an IV and ruin your favorite sweater or all the times your parents didn’t know if you were going to make it, but I can also tell you about all the times I went from crying to laughing because my dad turned a syringe into a water gun and named my IV pole.

I was born a chronically ill child, and I will die a chronically ill adult. It doesn’t mean I am lesser and it doesn’t mean I won’t make it in this world. But it does mean you have to understand my limits and you have to respect the fact that I can’t meet you for lunch on Tuesday because I have blood work I need done that day. It means there is no reason to think I am less because it takes me longer to stand at the end of the work day or need help on days I just can’t do it alone.

Don’t forget sick kids grow up too, and not all of us “grow out of it.”

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Thinkstock photo via artant.