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.

Thursday, December 5, 2013

So very much has happened since the last time I've posted here. While I certainly don't have time for a "real" post, I do intend to keep this blog active, so the best and only thing to do at the moment is to tell a cute kitten story.

My kitten, Sage, is closing in on two now. He was adopted from an animal rescue last Christmas, J and my gift to each other.  He's a teenage punk and a charmer- we went to the cardiologist today for his annual checkup, and three different ladies (the receptionist, the vet tech, and a stranger in the waiting room) all commented on how handsome he is. He launched into an all-out comedy routine for the vet tech, and insisted on saying goodbye to the receptionist before we left.  Yes, somehow or other, I, the extreme introvert, acquired the world's most extroverted cat.

About two nights ago, I was brushing my teeth and getting ready to take a shower. A very large cockroach suddenly ran out from under the sink, as often happens in the Deep South. Sage darted after the bug, and pounced on him in the hallway, trapping the cockroach under one of his gigantic fluffy paws. He let the bug up and let it run into my bedroom....where he quickly followed, and then reappeared, carrying the cockroach in his mouth. Rather than eat the cockroach (like my friends say their cats do!) he carried it into the bathtub, where he let it loose, and then chased the cockroach around the shower curtain and the tub. I gave up on showering, until he appeared in another room about fifteen minutes later. Then I headed back to the bathroom, pulled back the curtain and found the cockroach. I cautiously reached for it with a piece of tissue and it moved. My beloved Sagecat had left me a live cockroach in the shower to deal with on my own, and didn't understand what the heck I was so indignant about. The cockroach wasn't alive for very long after that.