10 Things I Do With UC That You Don't Notice

As a mom, I often read those tongue-in-cheek social media posts that talk about the constant “reel” of thoughts going on in the background for the default parent (which, in my experience, is usually the mother figure). It’s a list of thoughts that this parent runs through regularly – things the other parent(s) isn’t privy to. And man, how true is that? 

If you’re a parent, you can probably relate. But what about if you’re living with a chronic condition? Raise your hand if you’re constantly planning, calculating, researching, worrying, or doing anything related to your chronic illness that no one knows anything about. I live with ulcerative colitis (UC), and I could be sitting in a room full of people while keeping an eye on the bathroom line … and no one even knows. I’m still smiling and listening intently, but I’m also timing my exit to take my spot in the line.

Or what about prepping for dinner with friends? Before I even step foot in a restaurant, I’ve already scoped out the bathroom through the window, looked at the menu, planned an exit strategy, assessed the crowd level if I have gas, and mentally prepared to choose a seat nearest to the bathroom. Just typing that is exhausting.

If you find this relatable, humorous, or just plain outrageous, don’t worry – I do too. My behind-the-scenes is nothing if not chaotic. For an added glimpse, here are 10 other things I do daily with UC that you don’t even notice.

1. Plan around my bowel movements. What I give to my friends is a time to meet; what they don’t know if that time is somehow planned around my morning “routine.”
2. Think about the nearest bathroom on walks without bathrooms. You may think we’re just meeting at a park, but I’ve selected this park and this spot and this situation because I already know where I can find a toilet. 
3. Set up my buffer hours. Have you ever heard someone say “just because you’re not busy doesn’t mean you’re free”? That’s the truest for people living with chronic illness. You will never find me running from one commitment to another. My buffer time is as important as the actual events I’m buffering.
4. Order more medication. I get mind through mail order, which requires electronic refills, management of prescriptions, and coordinating fills around insurance. Before I meet you for coffee, I’m clicking the boxes to have mine shipped before my current stash runs out.
5. Silently celebrate milestones. When my remission anniversary passes, I don’t make a big to-do about it. Instead, I give myself a silent pat on the back for another year without a flare.
6. Do random Google searches. This isn’t saved for just symptoms I’m currently experiencing. Sometimes a random thought pops into my head, so I’m looking it up on the Internet while sitting on the toilet.
7. Check in with inflammatory bowel disease (IBD) friends. I’m a very behind-the-scenes supporter to more people than most people realize. I know the intimate details of many peoples’ journeys with IBD. I have a regular rotation of check-ins that no one will ever know about except for me and that person.
8. Worry about a flare. Not a day passes without a thought of a flare popping into my head. I don’t point this out when I feel it; it’s just commonplace for me at this point. But it is something I think about during random parts of the day.
9. Pack some toilet paper. I have some in my car, in my hiking pack, in the diaper bag, in my computer bag – if you need it, I have it.
10. Poop in your bathroom. I’m fast and I’m stealth … betcha didn’t know what went down in there.

OK, that last one was kind of a joke (kind of not), but I’m sure those reading can relate to the pressures to be quick in certain situations. My point is this: There’s always a slew of thoughts running through the mind of someone living with chronic illness, which is a reminder for all of us to be thoughtful in our approach to interactions. It’s like the old adage says, “Everyone is going through something you know nothing about.”

What would you add to this list?