What to say when you don't know what to say

       Crohn’s is hard to spell and even harder to understand.
       And I get it.
       It was hard for me to understand when I was first diagnosed--mostly because I didn't want to understand. I didn't want to have it.
       I remember my first gastroenterologist, the one who was randomly assigned by my insurance company and seemed stymied by my recalcitrant alimentary canal, which just didn’t seem to want to get better. He kept throwing medicine at the problem, which it turns out was bit like adding Band-aids to a severed limb.
       After he diagnosed me, I was angry, full of denial, depressed—basically all the stages of grieving at once. That seemed to frustrate him, too. Before I left the appointment, I sullenly agreed to read the pamphlets he gave me: So you’ve got Crohn’s disease! At the next appointment, he quizzed me: “What does IBS stand for?”
       “Irritable bowel syndrome.”
       “And what do you have?”
       I glared at him. “IBD.”
       “And what does that stand for?”
        I fantasized about punching him in the colon. “Inflammatory bowel disease.”

       One problem is that people tend to mix up Crohn’s with diseases that are far less serious.
       “Oh—that means you can’t eat wheat, right?”
       “No, that’s Celiac.”
       “But it’s basically the same thing, right?”

       I think one thing that makes Crohn’s confusing to understand is that it can show up in really different ways in different people. Some people can’t eat dairy or soda—or, I admit it, wheat. And some people don’t have any dietary restrictions. Some people have to get a surgery—or three—and others just have a lot of diarrhea (another hard word to spell).
       And everyone seems to distantly know someone with Crohn’s—their hairdresser’s nephew, their best friend’s cousin. So they’ve heard some bad stuff, but they don’t know what they’re talking about. Yet they want to relate, somehow, which is nice. I guess.

       Here are two really bad ways to respond to someone telling you they have Crohn’s (or any other serious condition).
       Option 1: Change the subject
       A week ago was Friday, August 28. The first Friday, August 28, since the day of my first surgery, six years ago. For some reason, this particular anniversary hit me really hard. I was preparing for the new school year but reliving that life-changing day half a decade ago at the same time. I’d glance at the clock and think, in a few hours I’ll wake up in recovery, certain something is wrong because I’m in so much pain. I cried off and on all day.
       The next day I mentioned my surgical anniversary to a friend at exercise class as we jogged around the parking lot.
       She paused, then changed the subject.
       It’s hurtful. I try to shake it off—assume the person didn’t really understand or just didn’t know how to respond. But it pisses me off.

       Then there’s option 2: Catastrophize
       This one involves rubbing in my face how Crohn’s is the worst disease in the world. That’s actually a direct quote from a relative who called me in the hospital to say that cancer would be better, and why would the universe even invent a disease like Crohn’s.
       I’m not sure how this is supposed to make me feel better, but my husband insists that is what people intend at moments like these. Here are some other variations:
       “If they ever give me an ostomy, throw me off a cliff.”
       “My friend’s son has Crohn’s, and he’s in pain every day.”
       “I’ve had two open heart surgeries and bone cancer, and none of that is as bad as Crohn’s.”
Here’s what I hear: “Sucks to be you. HAHAHAHAHAHAHAHA.”
       Jeff says this is what they mean: “I know you’re dealing with something really tough, and I want to show you that I understand.”

       Here’s the other thing—most people think of illness as a crisis that passes, and then you’re fine (assuming you don’t die).
       Here’s the truth—Crohn’s is a chronic disease. It’s in remission. So when you try to bond with me by telling me about the miserable time your dogsitter had, you are in fact filling my mind with new terrifying possibilities of my future with this disease.
       And I’m still dealing with the aftermath of what my body has already endured. It turns out that three surgeries in a year really fuck you up, even when you’re doing really, really well. I have to be on a low-fiber diet because of the narrowed places in my intestines. And I’ve already had one bowel obstruction that landed me in the hospital the day we were supposed to leave for the Oregon Shakespeare Festival, and they tell me it could happen again at any time. I’ve been struggling with chronic back pain for three years now, all related to the scar tissue and adhesions in my belly.
       And that’s not to mention the hovering fear I work hard to ignore that the Crohn’s could reawaken at any time to take up residence again, inflaming any part of my digestive tract, from my mouth to my anus, but most likely in my small and large intestine. And if that happens, there are very strong biologic drugs that have to be given intravenously. One particular brand is advertised on TV all the time, and I have to very quickly locate the control and change the channel before the monotone announcer can terrify me entirely with the horrifying side effects. I was on that medicine for several months, and it gave me bruises four inches in diameter every two weeks on my abdomen, arms, or legs.
       Or I might need surgery if my organs tunnel into each other through fistulas or swell and burst again. And the worst case scenario: they might have to remove or disconnect my large intestine again, which means another ostomy—a brand spanking new anus, created by rerouting my intestines out my abdomen. They just turn a bit of intestine inside out and sew it down, making a weird rosebud that empties intestinal fluid into a bag glued to my belly. Last time it was temporary, just for eight months to give my colon time to bounce back after a very trying time.
       So, yeah—I already know all about the many possibilities, much as I try not to think about them.
       You really don’t have to tell me how bad it can be.

       To be honest, it’s nearly impossible to respond well to someone saying they have Crohn’s (or any serious condition). I almost always come out of those conversations feeling worse than when I went in.
       But you could say something admiring about my strength. Or ask me questions, like you want to understand. You could try to relate your own experience to mine, though that is chancy. If it’s way too minor compared to Crohn’s, it makes me feel sorry for myself. Or you could express sympathy without scaring me.
       Any of those options would be good.