Recently my Crohn’s Disease has been getting on my nerves.
It that a ridiculous statement? Anyone with a chronic illness can tell you that every day can’t be about the disease. Sometimes you’re in the hospital or prepping for surgery and your illness is the most important thing going on in your life, but other days, most days, it’s more like an errand you have to run in between classes. Pick up groceries, email my professor, give myself two shots in the thigh, submit my math homework, be home in time to watch Broad City with my roommates. It sort of blends in. That is, until you realize most twenty-two year olds aren’t versed in the exact angle needed to insert a needle into your own leg (45 degrees).
I’ve been having some trouble coming up with ideas for this blog because I haven’t had anything really drastic happening with my health. Everything that’s truly important has been going on in other aspects of my life, and Crohn’s has been downgraded from life-altering to sort of… well, annoying. Then I realized that very issue is a huge part of living with a chronic illness. Maybe the biggest part.
So today instead of trying to give an inspiring message of hope or strength, I’m just going to straight up complain. Because health-wise, I’m really doing okay you guys. But I am still just a human brat like the rest of us.
Here are some of the ways that my Crohn’s Disease has been a mild inconvenience lately:
-Sometimes I get a fever. Just a really little one. All I have to do is pop two tylenol and it goes away within thirty minutes, but I still feel the need to inform everyone around me that I’m feverish for the next twenty-four hours.
-My gastorinterologist is based out of Houston but I go to school in Austin, so any time I have to have a procedure done or go in for a check-up I have to drive three and a half hours home to my loving family.
-I get my blood drawn so often that I am running out of ways to creatively fit it into my snapchat story.
-My daily dosage of mercaptopurine has been upped from one pill to one and a half pills, which means that I have to bite the second pill in half and save the other half for the next day, resulting in a little cloud of dust powder exploding from the bottle every time I open it.
-I’m on a lot of medication all the time, so I get frequent yeast infections. Frequent. The people at the clinic know my name.
-The two main medications I take have weird names that doctors always ask me to spell, and I can’t get it right unless I write it down first. I end up having to do that thing where you pretend to write it on your hand or in the air while you say the letters very slowly, and only half of the medical professionals I have encountered find this endearing.
-I can only have Tylenol because unlike other pain killers it is processed through the liver and not the stomach, so when I ask if someone has Tylenol and they politely give me some Advil I have to turn them down as if I am brand-exlcusive.
-When it’s time for me to refill a prescription (this happens about every three weeks) the pharmacy will call me so early in the morning that it wakes me up and then I have to try really hard to make it sound like I didn’t just wake up.
-Recently a boy sat down next to me and asked me if I liked food, to which I replied “Haha actually, not really…” and then I realized I didn’t want to explain about my dietary restrictions so we just sat in a horrible silence.
-I hide bottles of mercaptopurine in various bags/drawers/places in my car like a squirrel hiding nuts because I am terrified that I will be in a situation where I run out of or forget my medication and I won’t know what to do. All that really ends up happening is that whenever I finish one bottle I don’t know where the others are and I have a short burst of panic until I can locate one.
-I habitually choose the aisle seat on an airplane because I’m scared I’ll get airplane diarrhea and be trapped at the window.
-I’m not supposed to eat pickles but they are the one thing I can’t stay away from. I have lied to people I care about over this.
-My butt gauze frequently dislodges if I’m walking too fast and I have to readjust it but it looks like I’m picking a wedgie.
-My medication suppresses my immune system so I can catch colds or other infections really easily. When I travel with my mom she makes me wipe down an area with disinfectant wipes before I sit down. She slips them into my backpack when I’m not looking. I’m too embarrassed to actually use the wipes because they make me feel like Monk.
-Whenever I go out to eat with my friends and the waiter tries to take my order I always say “I’ll go last,” because I know I’m going to have to ask a million questions and it’s going to get complicated and everyone nervous laughs and it’s the worst.
-I have to show different doctors my butt so often that every time I go to the doctor’s office I try to pick out nice underwear just in case.
-I couldn’t keep up with my friends’ pace on a hike in New Zealand and I was really embarrassed about it, so I told them to go ahead without me because I really just wanted to read my book. I didn’t see them for six more hours. I didn’t have a book.
-If I’m in the bathroom for longer than fifteen minutes my mom will knock and ask if I’m okay.
-When I go through the x-ray scanner in the security checkpoint at an airport I’m always afraid that my gauze will show up on the scan and a TSA member will think I’ve been smuggling drugs in my butt hole and I’ll have to reveal it’s just a precautionary measure because I sometimes bleed from my anus and then everyone will feel really bad.
-When I order the Mango Factory Original Smoothie at Red Mango I have to ask for mine without the protein powder because it contains milk and the cashier always looks at me like I’m a wimp.
-My shots have to be refrigerated and I have limited fridge space.
-After I tell someone I can’t eat something the next question is usually, “Oh, what happens if you do eat it?” to which I always reply “Well it comes out painfully, from one end or the other!” I say it every time. I have tried to wean myself off of this phrase, but in the uncomfortable moment this is my one true fallback.
So those are a lot of complaints, but it’s not all bad. Sometimes having Crohn’s can even feel like it’s not the worst thing to ever happen to me. For example, I get to register early at school and get all the good classes. And that time I backed into a stranger’s car he let me off the hook because I was passing a kidney stone at the exact moment of the accident. And once in Whole Foods when a very socially unaware woman grabbed my arm to ask me how I stay so thin, I got to tell her that I have a disease and make her feel like a bad person.
Also my roommates never make me take out the big trash because I don’t have the upper body strength to lift the bag with one arm and hold open the trash chute with the other. So really, it all evens out.
In all seriousness, most days I’m very at peace with having Crohn’s. Sometimes, like when I get to write this blog or answer emails from other young people going through the same struggles, I am even grateful for it. I don’t know how many people I would be able to reach if I were completely healthy. If it makes me relatable, if it makes people connect with what I have to say, then it’s a good thing.
But we’ll have to wait and see how I feel in a few months, when I have to swallow an actual camera and then poop it out while it takes pictures of my insides. I reserve the right to change my mind.