Thursday, December 12, 2013

So, how do you talk about Crohn's?

People say horrible, inappropriate, awful things. "People" includes doctors- I threw the American Gastroenterology Association's Guide to Crohn's Disease and Ulcerative Colitis across the room at least three times.

People say horrible things because they don't have a clue how to talk about illness. People don't know what it's like.....
...... to hobble a block and a half to class on swollen, arthritic ankles, only  to remove your sandals because your feet are too swollen to fit into them.
........when you're sedated in the exam room, and all you can make out through the fog is that the news isn't good.
.......vomiting for hours in the middle of the night, when your mind can't hold anything besides the pain ripping through your body as it  reacts to the (comparatively low dose!) chemotherapy drug that was supposed to make you better.

There are no words to make people understand these things (The spoon theory helps). So people ask questions-questions about what happens in your disease, about medicines, about diets. I don't know why they ask. Maybe because they care, maybe because they're curious, maybe because they're about to unload a pile of bad advice on you. And then, it's on you as a sick person to figure out what to do with the conversation.

I tend to approach these conversations clinically, referencing epidemiology studies and clinical trials, and delving into molecular mechanisms. I'm realizing this doesn't work- most people don't have degrees in biology and public health, and trying to give people *facts* means that they walk away not understanding very much. Lay people don't understand "inflammatory cytokines" or "allostatic load."

So, what are the right answers?
If the question is about food sensitivities/ what can you eat, I think the best answer I've found so far  is "Yes, lots of people with IBD have food sensitivities, and it can definitely make symptoms worse. But the immune system malfunctions in a way that's much more similar to Rheumatoid Arthritis, Lupus and Ankylosing Spondylitis." (This could potentially backfire into a discussion of "what the heck goes on in those other things I've never heard of?) but it at least gets across that you're not just lactose/gluten intolerant.

I don't know about the other questions, honestly. I'm going to try harder to figure it out. I'm tired of how people respond instantly to the word "cancer" but are clueless about other chronic illnesses that can be just as serious and just as devastating. I want that to change. So I'm stuck figuring this out, a conversation at a time.

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