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I have Crohn's... Err... Sorry about that.

Do you ever find yourself apologizing for your disease? Now, let me clarify, I'm not talking about literally saying, "I'm so sorry, I have this disease called Crohn's." I don't think I've ever done that. I hope not, at least... I'm talking about those times when you find yourself kind of downplaying the effect of the disease or distancing it by referring to it as "this weird thing that's really hard to explain." I mean, after all, it is a weird thing, and boy is it hard to explain, but those moments always feel to me as if I'm saying "Sorry to make you listen to my really long complicated explanation of something that is deeply personal and not really your problem in the first place."

It usually happens like this:

Unsuspecting Acquaintance: Hey, Maggie! You want some of this food/You want to go out tonight/Some other completely innocent question?

Me: Thanks so much, that sounds great... but I can't. I'm not feeling too well.

UA: Oh, bummer. Are you sick?

Me: No, well... Uh, kind of.

UA: *concerned look* Are you alright?

Me: Yeah, I'll be fine. I just have this weird chronic disease thing that's been flaring up. It's called Crohn's Disease.

UA: *concerned look becomes slightly panicked* Oh, wow. What is that?

Me: (Give my go-to explanation of what Crohn's is and how it effects me, usually as succinctly as possible. Trying not to make it sound too bad, but still give an accurate representation. Not so easy.)

UA: *no longer panicked, but still vaguely confused*

Me: Also, I've named my colon. It's called Myrtle. (Okay, so I don't really say that. Maybe I should try it. Might break the tension a little. *mental note*)
So, the actual words vary a little from conversation to conversation, but the basic layout is always pretty much the same. I've gotten better at it, and I've gotten to a point where I feel less awkward talking about my disease with new people, but it's always strange and kind of stilted. This all relates hugely to the writing I've done on coming out with Crohn's, but I think it's a different point I'm trying to make. I'm talking specifically about the apologetic language that often characterizes these conversations, at least for me. It's always "It's weird, this..." and "It's just the way it is, that..." as if I feel guilty for burdening whoever I'm talking to with my disease. In reality, I'm sure I'm much more uncomfortable than the people I'm talking to.

These conversations are so hard, not because I have a problem talking about my disease. Obviously. I would not be writing this if I were at all shy when it comes to discussing disease. They're hard because I want so badly to talk about my disease in a way that makes people understand what Crohn's is, and the huge role it plays in my life, without them feeling the need to tip-toe around the subject. Ultimately, it doesn't matter how awkward these moments are for me, as long as they open up a dialogue around chronic illness, but I think this apologetic language might be closing off that dialogue instead of opening it up. It seems like it sets up a precedent of "it's my thing that I deal with and you shouldn't worry about it." I mean, they shouldn't worry about it, but that doesn't mean I want them to feel like they can't talk about it. They can! I want to talk about it! I'm simply dying to talk about it!

I don't know, I don't have an answer for this one yet. As soon as I figure it out I'll let you know. Just do me a solid and don't hold your breath. Please, please, please let me know if you have any insights.


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