When people know you have an illness, sometimes, there are certain expectations they have. For instance, many people think I’m always in the hospital attached to an IV pole and if not I should be home resting. The fact that I can go out and have fun is shocking. Sorry, I’m not on my deathbed 24/7.
Every once in a while I manage to put on my party shoes and have a good time. Am I allowed to have fun? I’ve received comments that basically insinuate that I shouldn’t be out because if I’m not in bed 24/7 I’m going to end up in the hospital. Insert major eye roll here.
For the record, I am “allowed” to have fun. I’m allowed to do whatever I want. I shouldn’t have to explain that, but even if things aren’t being said directly to me, guess what, it usually gets back to me.
My body wages war against me EVERY SINGLE DAY. Despite that, I get up every day and go to work, socialize when I can, try to travel and enjoy life, etc. Life with a chronic illness is unpredictable. Going out and having fun doesn’t put me in the hospital, Crohn’s Disease does. Regardless if I was bed bound or trying to live my life, Crohn’s Disease is going to fuck with me no matter what.
I absolutely hate it when people tell me to sleep more or try and blame my illness on something that I did. This is not how it works!
I’m allowed to go out and party, I’m allowed to travel, I’m allowed to lay in bed all day if I want to. I don’t answer to anyone but myself, I know my limits and I’m pretty good at listening to my body. I’ve been dealing with this disease for over 17 years now.
Also, some people find it difficult to believe that I’m sick because I don’t “sound” sick or look sick. If they saw me the day before and I was fine I must be faking it. No, no, no. Chronic illness means things can change pretty fast. Also, I don’t know how to fake being sick, but I can fake being healthy. Chances are if you saw me looking okay, I was probably suffering on the inside without letting anyone know.
Stop assuming because I’m not bed bound and playing the role of dying girl that I’m okay. Stop assuming that when I am sick it’s because I had too much fun and should have known better. Stop assuming you understand, because there is no way you can unless you have this invisible illness.
Thanks for letting me rant today. This rant was brought to you by Prednisone, aren’t steroid rage-filled mood swings fun?
