Invisible Illness

I had a pretty decent day today. My appetite isn’t back to how it normally is, but my energy level was pretty consistent.

Work was a bit annoying because I was stuck doing a two person shift by myself. I’m kinda annoyed, but it’s summer in a college library. It’s hardly very demanding. The main annoying thing is that new rules were set for non-students and the regulars weren’t too happy about it. They’re limited to computer usage to one hour a day and there’s a system set up that keeps track of how long they use it.

Honestly, I would want to leave it to however they want it as long as it keeps them out of my hair.

I haven’t had any negative effects to my infusion since yesterday, so I guess we’re in the clear? I don’t have any sort of doctor’s appointments set up at this point, so I guess we’ll see what he says about how my infusion went. 

My poor hand got messed up pretty good, though. It took the nurses three tries to get my IV in and the second try ended up blowing out a vein. The bruise isn’t as bad as I thought it would be, but it’s still pretty tender based on how many times I’ve accidentally hit my hand on tables, chairs, and cats. It’s a faint shadow compared to the grape purple bruise I got from a blood drawing attempt when I was in the hospital.

I encountered some pretty nasty ableism today. It’s with someone who probably didn’t even know what they were saying, but I was still upset by it. Here’s how the conversation went.

Someone from school: Why were you in the hospital yesterday?

Me: Oh, I had to get this one medication treatment. It only works through an infusion, so I had to go to a hospital. It’s basically the same idea as chemo.

Someone from school: Oh, so it’s not THAT bad then. *Walks off*


Not that bad? Are you kidding me? I compare my Remicade infusion to being the same idea as chemotherapy and you say it’s not THAT BAD?

This happened at work, too. I swear I don’t get paid enough at least 60% of the time. Working in a customer service job will definitely prepare me for… Something. I dunno.

Maybe an improv class I might find myself stuck in.

But yeah, it’s stuff like that that people need to really watch what they’re saying. Just because I look normal doesn’t mean I’m completely healthy again. I’ve got to get this infusion done every 6 weeks until further notice. It’s called an invisible illness for a reason. I’m not gonna be carrying around a print out of my colonoscopy results just to prove that I’m sick. You’re just going to have to take my word for it.

When in doubt, just politely ask how I’m feeling. I’ll probably either say I’m doing fine or that I’m tired.


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