Content Warning: If you have a problem with discussions and descriptions of bodily functions, this post is not for you. you have been warned.
I’ve recently joined reddit, and have spent some time on the r/crohnsdisease.
Among one of the articles was this one about a bathroom bill that didn’t pass.
The bill would have made it required that businesses allow Crohn’s and other IBD patients access to washrooms, even those that are for employees only. The bill didn’t pass and this author takes this opportunity to mock the idea of its existence and follow it up with an anecdote about how a woman tricked a business into using the restroom in order to steal something.
In the author’s mind, this anecdote is proof enough that the bill was useless and would not benefit anyone. The author “sympathizes” with people with intestinal and digestive disorders, and recommends compassion on the part of the businesses, but doesn’t see the need for such a bill.
For people without these disorders, crohn’s (which I shall now unfairly use to represent all IBDs) doesn’t seem like such a big deal. I’ve even had people quip that everyone gets stomach aches and that loose bowels really aren’t a big deal. When these people imagine what it must be like, most have nothing to compare it to other than that slight feeling of urgency you get when you’ve held it for too long.
I am about to share something very personal. The feeling of urgency when you have a flare up isn’t like that feeling of “Ooo I really have to go” but is more like “I need a bathroom right stat fucking now!!!” With Crohn’s you don’t always get a lot of warning before the need to go to the bathroom is completely overwhelming. You have maybe 5 minutes to find a washroom. If you don’t get one in time, too bad. You have no control. Your body is your enemy as you do what you can to try and save yourself from embarrassment.
When I was first diagnosed, the actual bathroom aspects of the disease were not the worst. The constant nausea that never went away was. I began vomiting in public so often, that I started telling people I have morning sickness to avoid the ackwardness that was explaining to someone what was going on.
I remember one situation in particular where I started crossing a street and had to run back so that I could safely fall on my knees and bring up my breakfast. It was a choice between keeping going and end up tying up traffic or getting hit by a car, or running back to safety. As I knelt there trying to discretely throw up behind a stone, a woman began panicking asking me if I needed an ambulance. The last thing I wanted was a scene, but this woman was among the first people to ever show concern and I couldn’t scoff at that. But how to explain to someone who is freaking out that this is a normal part of your life? That you have a disease that sometimes makes you throw up in public without any control? How do you then convince that woman that no, you don’t need a hospital? “I have morning sickness” I answered.
I also now have had the pleasure of vomiting udon noodles all over the department of National defense. No it wasn’t a political statement, I just couldn’t help myself.
As I did research into this condition that I now knew I had, I found frequent recommendations suggesting you travel everywhere with an extra pair of underwear.
Eventually I figured out why. As my nausea came under control, I noticed the bathroom symptoms. I was lucky and managed to avoid an incident for quite some time. I was in school, and there are always plenty of washrooms on campus. This made my first “accident” that much more traumatic. You see, it happened during a midterm of a class I couldn’t stand. I was already feeling sick, when suddenly the urge hit. I asked for permission to go to the washroom, and ran to where the nearest one was. Unfortunately it was out of order. I ran from one to the next, but the university had decided to renovate all the washrooms in the building at the same time. I finally had to run to the building next door to find one. I didn’t make it. Just stop and think about that for a second. Think about being an adult and not being able to control your bowels. Imagine the embarrassment as you try and clean yourself up in the bathroom. Of praying no one notices as you try and wash your underwear in the sink so that you can put it in your bag. Of having to trudge back to class feeling unclean, wondering if everyone can smell it on you. Of having to go up to your teacher and explain that you are unable to finish writing the midterm. That fear of hoping he understands and doesn’t just fail you on the spot. The horror of having to take the bus back to your apartment so that you can shower. Or the choice of going to your boyfriend’s place, who lives within walking distance to the school to ask if you can use his shower and his laundry machine. Wondering if he will ever be able to look at you and think your sexy ever again, or if every future encounter will be tainted with the subtle odor of “unclean”.
I was lucky, my boyfriend is a wonderful man. He hugged me, wrapped me up in his robe so that I could go shower, and washed my clothes for me. When I got out, he spent the next couple hours cuddling me, and loaded up a funny movie to make me feel better. Not a lot of guys would have reacted that way. For many, the fear of dealing with someone with that kind of disability can be too much.
While that was the first time it wasn’t the last. One night, my apartment building has a 2am fire alarm. In the hustle of trying to pack up our dog and the roommate’s cat, I didn’t stop to use the washroom. When we reached downstairs, the urge hit. I went to the little mall that had the only businesses in the nearby area. The only place left open was a Tim Hortons. I begged the drive through to let me use the washroom. I pleaded, explaining that I had this condition and that it was an emergency. The answer was no. I had to stand around in my mess for over an hour, while I waited for the firemen to clear the building. By the time I managed to shower, my leg had developed a painful rash. It would have been a 5 minute inconvenience for the restaurant. I would even have bought something to make up for it. But they didn’t, and I suffered.
I am not unique in having had these experiences. Despite the high level of embarrassment and inconvenience, this isn’t even the worst part of this illness. The lack of control over your body is bad, but the pain, the nausea can be infinitely worse.
During the worst of my flares, I remember laying on the bathroom floor shivering because my body didn’t have enough energy to keep itself warm, and I didn’t have enough to stand up. I lay there because I knew that in just a few minutes I would be throwing up bile once more. I remember avoiding brushing my teeth for some time, because the motion had me leaning over the sink coughing up bile. I remember the pain of using mouthwash because my mouth was filled with canker sores. I remember spending hours at the hospital emergency room, waiting to get yet another IV with fluids, just to be sent home without an answer as to what was going on. This happened about once every two weeks. I remember the months of barely leaving the house, of napping constantly, because my energy just wasn’t there. I remember bending over in pain, as once again I was seized with excruciating pain. I remember forcing myself to eat, wondering if this time, I would manage to keep it down. Of lying perfectly still, trying hard to force my body to absorb the nutrients I had eaten. Those moments of stillness, I remember wondering if I would survive this. I remember wondering if the rest of my life would be spent not being able to eat or digest. Wondering how much weight I would have to lose before I was admitted permanently. All of this wasn’t constant. It was interspersed between brief moments of normalcy that made it seem at the same moment so much worse but also better than it was. It took a long time before I realized just how bad things were. In hindsight, I look at what was going on and wonder why I didn’t just give up?
Not everyone with Crohn’s feels comfortable talking about it. It can be difficult. What we go through is so personal, the details about what it is like can be so embarrassing, that it is not surprising that most of us would rather not talk about it. I need to talk about it. I need to because it is less painful than this author’s assumptions about what having Crohn’s is like. Because maybe if I talk about it, next time that Tim Hortons will open its doors and let me in. Because maybe someone reading this will take pity on someone else and give them access to the bathroom.
I am not alone out there. My experiences are not unique and they are not even rare or the worst of what people have gone through.
This author, rather than recommending compassion to others, should stop and find it in themselves first.