Having been diagnosed with ulcerative colitis for going on three years now (this month, actually… what?!), I can honestly say that I’m still getting used to having to explain myself to people. SO… I’ve decided to compile a list of things that people with UC would like people who do not have UC to know. Okay… I haven’t polled other people with UC or anything, but I assume others share at least SOME of my sentiments on the matter.
These are in no particular order. I’m just writing them as they come to mind.
- Don’t ask too many questions. This is probably the thing that makes me craziest… I get that people want to know what’s wrong with me sometimes. If it comes up, I definitely DO NOT mind telling people that I have UC and explaining what it is. However, I’m not okay with people asking super detailed questions about my personal bodily functions. *And yes… People ask.* Oh! Didn’t I tell you about my last bathroom trip? No?! Well, I probably didn’t want to talk about it… And let’s just be real… Do you REALLY want to know? You shouldn’t.
- On that note, let’s take a minute to talk about awkward bathroom situations that make me uncomfortable. You know that whole thing about girls always traveling in pairs to the bathroom? Well… This girl prefers to fly solo. It’s just better that way.
- “Want to go to lunch?” Sometimes those five words are truly the bane of my existence. Why? Because I do want to go to lunch. In fact, I would probably love to go to lunch with you. It’s just that my heart and my guts aren’t always on the same page. There are so many limitations as to where I can go. Fast food, for example, is iffy for two major reasons: (1) It’s greasy, and that’s a problem for UC patients. (2) There’s that whole temptation to get it “to go” and I need to be near a bathroom at all times. Furthermore, getting a bad stomachache on the go is no joke. *Translate: I don’t want to be doubled over in pain in public, NOR do I want to get a debilitating abdominal spasm while driving.* Also, see point #2.
- I’m actually not a picky eater. Because I am not a recluse and I refuse to let UC turn me into a recluse, I will indeed go out to lunch with people. Heck. I may even ask you to lunch, but please understand that when I suggest a place to eat, it’s probably because I know there’s something on the menu I can eat. If we do go to an unfamiliar restaurant, please be aware that it will probably take me 2-3 times as long to make a food selection because I have to consider FAR more than what I would like to eat. Things I have to consider include, but are not limited to:
- Is this going to be hard for me to digest?
- Do I have plans after lunch? The answer to this question is pretty much always “No.” Tread carefully when asking me to do something after lunch and please do not be offended if I politely decline. Again, it’s not that I don’t want to follow up with frozen yogurt, I just don’t want to get into a precarious situation.
- Is there a bathroom around?
- Must you stare at my horse pills? The amount of medicine (including natural supplements) UC patients need to take on a regular basis can be dizzying. Some need to be taken between meals. Some need to be taken just before a meal. Some need to be taken with a meal. Some need to be taken just after a meal. And some of them are pretty darn humongous (so it is a real word…). If I do whip out my little pill container, I would appreciate it if you wouldn’t stare as if I’m about to swallow a live wasp or something.
- Okay… So this one can actually be entertaining at times. For whatever hellacious reason, my stomach can make some pretty outrageous noises -and sometimes those noises can get pretty loud. My fiancé and testify that one morning in church my stomach made this noise that sounded like a snarl, followed by a popping sound, followed by a cat’s screech. It was ridiculous and it was loud. It happens, and I definitely don’t like having attention drawn to it when it does happen.
- Tickling, poking, elbowing, and super tight hugs are not okay. No, I’m not just saying this because I’m not a touchy-feely person. I’m saying this because it HURTS. Let’s go all medical-terminology for a second and break down the word “colitis”. Col – It’s my colon. itis – swollen. “Swollen colon.” *Is it weird that I kind of love saying that?* SO… That being said, would you go up to a person with a swollen foot or wrist and jab them for laughs (or whatever payoff you get from that odd social interaction)? I SINCERELY hope not. So why would you mess with a UC patient’s abdominal area? Just don’t.
- If I tell you that I’m tired, PLEASE do not suggest that I “just take a nap.” Here’s the thing. The tired that comes from having an autoimmune disease is not the kind of tired a nap can fix. It’s a deep kind of tired. Like the kind of tired you feel when you’re sick and your body’s trying to fight off the flu or something. AutoIMMUNE disease. Smell what I’m stepping in? Basically, I’m always tired. And if I say I’m tired, it’s probably because I feel awkward about not being able to keep up with you or not being as conversational as I would probably otherwise be. *Note: I don’t expect you to slow down for me. Just don’t expect me to keep up with you.
- You hate my guts? Well, guess what. So do I, but here’s the thing. The big thing we all want you to know. You do not have to deal with this. We don’t expect you to accommodate our every need because we usually do that ourselves. If anything, as I read in another article, we just want you help us feel normal. I made this list so people who don’t have ulcerative colitis or Crohn’s can see where those of us who do have it are coming from. We want you to be aware, even if you don’t understand or know what to do. We get that you can’t understand and probably don’t know what to do. Neither do we, sometimes, and that’s okay.
- I am OCD and I can’t handle a list of 9 things.
For a couple of great posts on dealing with someone who has ulcerative colitis or Crohn’s disease check out:
*Ulcerative Colitis and Crohn’s Disease are very similar because they are of the same family. Both are autoimmune diseases that affect the digestive tract. UC is merely isolated to the colon.