Disconnected by my disability

I’m either too old or too young for this shit. When I get dragged into a passive-aggressive social media fight? I’m too old for this shit. When I’m sharing a hospital room with a one-legged man? I’m too young.

It’s the strange dichotomy that exists when you’re a young sick person. I know how to do “adult” things like schedule appointments and organize an ever-expanding cabinet of prescriptions. But at the same time, I can’t help but feel distanced from people my own age – the people I’m supposed to be connecting with.


I can’t blame being sick for all of my social woes. I always had a hard time relating to kids my own age. If you want to be nice about it, you could call me an old soul. Hey, at least now I have a body to match.

I didn’t make friends with ease like my older sister. I was perfectly happy to stay inside and read (or later on, go on the Internet) than run around outside with the other kids.

So, if I was a little socially awkward before my diagnosis, then I was a lost cause afterwards. Remember, Crohn’s is a disease many adults aren’t even comfortable talking about. Try explaining it to people when you’re 13.

Suddenly, my friends’ problems seemed downright trivial. You’re mad at Morgan because she held hands with Chris? Big deal. I had to get a colonoscopy last week (side note: how many 13-year olds have to get colonoscopies?).

Through middle school, I began to feel a disconnect between what my friends were dealing with and what I was dealing with. This only got worse during high school, when I was spending more time in the hospital than in class.

I definitely missed out on the high school experience. Okay, we all know high school is generally awful. But I would have liked to experience some of the awfulness for myself.

I missed out on “legendary” parties and beach days. If I did manage to make it to a party, it was immediately dampened by the fact that I wasn’t allowed to drink because of the medication I was taking.

I missed out on having a high school boyfriend, or at the very least a month-long fling. Who’s going to want to date you when you have something as embarrassing as Crohn’s disease? I was un-dateable.

I had the expectations of an adult placed on me when I was just a teen. I still approach life with the same adult mentality. It’s not that I don’t like being a grown-up – it’s given me a better perspective on life. But I still have regrets – a lot of ‘em.

Case in point: most people I know are going out tonight because today is Friday. Me? I’m sitting at home, waiting for my evening visit from the extra-mural nurse. I’ll say it again – I’m too young for this shit.


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