For most of my adult life I’ve suffered from one stomach ailment or another. My developmental years were spent in a blueish-green gastroenterology office. I’d go in and sit in front of the old black box tube, a grayish SNES controller wedged between my hands. I’d be distracted for a little while, Super Mario World keeping my mind off of the inevitable string of tests I was about to be scheduled into. When I’d get bored of that I’d go sit on the couch, grab a Highlights mag and thumb through it. But that didn’t have enough articles, so I’d trash it for a car magazine, or for another magazine with a pregnant woman on the cover (as is the case with most doctor’s office mags, regardless of the office).
Really, that office was something of a microcosm of my preteen-late teen years. Video games, reading, and gastro-tests. One after the other, repeating over and over.
There was always something.
First it was lactose intolerance, then it was acid reflux, then it was delayed stomach emptying, then it was IBS, then it was Crohn’s.
My gastric history is like a flow chart. Or, more accurately, if you’ve ever been in a GI doctor’s office, you know they all have that topographic-looking GI map on one of the walls. It shows the whole system, mouth to anus, all laid out with little bumps everywhere. Every disease you can get is mapped within the image. Here is reflux. Here is what a duodenal ulcer looks like. Here is what Crohn’s looks like.
Sometimes I’ve felt like I’ve fallen down that chart.
My childhood was spent with a doctor throwing darts at it. At least that’s how it felt like they were diagnosing me.
So, as a kid, what do you tell others when you don’t feel well? Do you have a stomach ache? Well, you do — but that isn’t what the doctor calls it. They call it “we don’t know.” But do you tell them that? Do you say you have a bad case of the “we don’t knows?”
So I did the only logical thing: I never told anyone.
This wasn’t a bad strategy when my main problem was reflux. It was just heartburn, right? I could deal with that as a kid. I could hide it pretty well. No students really had to know. None of my friends really had to know. If they did ask why I was clutching my chest every now-and-again… well, everyone gets a little heartburn, right?
No big deal.
Of course, saying GERD is a little heartburn is like saying a hurricane is a little swirly cloud.
But whatever. I could deal. I was fine.
It just meant that I couldn’t go outside, or play with the other kids. I was an active kid at first (I loved skateboarding, and I loved street hockey, and I was one of the fastest kids I knew — something I was proud of), but physical activity made it worse — if I exerted myself for any serious amount of time, I’d feel awful. And it wouldn’t go away.
And of course, on bad days, I didn’t want to leave my house. I felt awful. I felt like I was going to be sick. So when friends came over, I wouldn’t answer. I got a reputation for being afraid to leave my house — something I was teased relentlessly for.
But that was okay. I could deal with it.
Then high school came, and with it IBS-IBD-something.
I routinely missed the maximum amount of school days. I’d have to leave school early an uncomfortable amount of time. Routinely, between second and third period classes, I’d get a hellish pain in my stomach. Sometimes it got bad. Sometimes I had to leave. Sometimes I’d rush home and sit in the bathroom for an hour or two.
My friends would ask what was wrong with me. I didn’t know. But I also wouldn’t of wanted to tell them if I did. It was embarrassing.
And boy, was that embarrassment compounded by those teachers.
I can’t tell you how many teachers gave me an attitude for being sick. I looked healthy. There was nothing wrong with me. So what, you just have to go to the bathroom? So what? Everybody gets like that sometimes.
My grades sucked. My teachers called me lazy. And I was, to a point — but it wasn’t because I never wanted to do work. It was because I felt that no matter how much I did, I’d always fall behind. I’d always miss that one important lesson.
Even with a 504-plan behind me in my junior and senior years, I still felt behind. I still felt ashamed. The damage was already done, long before any help had come. My stomach issues weren’t something that anyone would understand. Not really. They were something shameful, something I had to hide.
Of course, the other thing that they don’t tell you about digestive issues (especially chronic ones) is that they often come with mental issues as well. Anxiety and my stomach? — so tight bro. Panic attacks were just a thing that happened to me.
And then the depression. I remember right before I was diagnosed with Crohn’s — I remember going in for a colonoscopy, and I remember the panic I was stricken with the day before the procedure. I remember ripping the head off of one of those rubbery stress ball squeeze things. I remember curling up next to my bed, crying. I thought — ever so briefly — that I wanted to be done with this. I didn’t want to deal with it anymore. I just wanted the pain to go away. I just wanted to be normal.
The colonoscopy found nothing (my Crohn’s is in my small intestine). I shut off. I stopped caring. Fine. If they can’t find anything, then fuck it. Fuck it. Maybe everyone is right. Maybe my first GI doctor who said it was all in my head is right. Maybe I just need to suck it up.
Of course, no one knew about any of this. What kind of 17-year-old wants to share with his friends that he just had a camera-tube shoved up his ass? How do you even approach that subject with teenage boys?
Two GI doctors and two college semesters later, I went through with a pill endoscopy which spotted my Crohn’s. I finally had a diagnosis. That — I had thought — would make me feel better. Let me tell you. That “feeling better” lasts up until you Wikipedia Crohn’s disease. It lasts until you remember that topographic chart in the doctor’s office. It lasts until you remember distinctly fearing that one specific diagnosis.
I kept quiet. I didn’t tell anyone. I could deal with this by myself.
Then I had that one bastard of a British Lit professor. The one that told me that I was weak for not coming to class during a flare. Just like high school. Just like always. I was supposed to deal with it by myself, because how could anyone else understand?
(A note to the above: while that one professor did damage to be, both academically and otherwise, his mark is minuscule: any impact he could’ve had was wiped away by the compassion and wisdom of another professor — you know who you are.)
But then something else happened: alongside the above events, a close friend of mine was going through a similar situation, except replace Crohn’s with Ulcerative Colitis. I could talk to him. We commiserated every now and again. It felt good to have someone to talk to. I became comfortable talking about Crohn’s.
I tried approaching the subject with other friends. It was difficult. How do you explain a disease like this? How do you get it across? I was afraid of being gross. Of being too blunt. Of giving the wrong impression. So often I didn’t give the whole message.
But I got over it. Eventually I could deliver the whole message — and, to my surprise, some of them got it. Not everyone, though. Some just didn’t understand. One — someone I considered a best friend — even said I was just using it as an excuse.
Luckily, I knew better.
Even still, tiny setbacks made me feel like I had to hide it. That I couldn’t talk frankly about it. For a long time I refused to mention Crohn’s disease on Facebook, or even this blog. I was afraid that maybe a potential employer would see it. Maybe they’d think I was a whiny kid that just pooped too much (seriously, these are the worries you get with IBD).
So I continued to hide.
I recently went to a job interview while I was suffering from a small flare. I was uncomfortable, and maybe that hurt me a little, but rather than say anything I decided to hide it. Because maybe they’d know I was diseased. Maybe that would prevent me from getting the job.
But you know — here’s the thing. I’m tired of it. I’m tired of hiding it.
I’d never expect another sufferer of any chronic condition to take this burden — so please don’t think that’s what I’m saying — but I feel like my silence has potentially made it worse for other people with IBD. I feel like by not sticking up for myself I’ve made it harder for others walking right behind me on the same path.
I’m tired of it. I’m not going to hide anymore.
I shouldn’t have to feel like I have to hide this. I shouldn’t have to feel like I’m gross because my intestines rebel against me. I shouldn’t have to feel like I’m broken, or weak, or anything like that.
And I refuse to. I refuse to hide.
I have Crohn’s disease. It’s shitty. I hate it.
But I have it, and no amount of hiding from it will change that, so fuck it. Here I am.