You gotta get with my fears.
1. Genetics. My sister and I both have IBD, and it's my top risk on 23andme.*
2. I didn't regularly eat fruits or vegetables until I was 20, and by then I couldn't digest them
3. Bactine habit. The 1980s were defined for me by daily bathing of my hands in the mild topical antiseptic, while wearing a sparkly black jacket and watching "Billie Jean's Not My Lover" on MTV
4. My co-worker listening to all her voicemails on speakerphone, with office door open, then going to talk to multiple nearby co-workers about said voicemails
5. Refrigerator hypothesis. Not the popular scientific one, just the fact that most of the foods that make me feel crappy come from my refrigerator.
6. That time I ate an entire Keebler ready-made graham cracker pie crust in one sitting**
7. Those other dozen times I did that
*also have significantly increased odds of addiction to heroin, which will make sense when you read this post
But I'm trying not to dwell on the past. I do, however, often dwell on the future. I call this "planning." Some of my former doctors attempt to treat this planning as an illness along with my IBD.
I've had them giggle about me with their nurses, condescendingly pat my arm and say, "Let's take one thing at a time, OK?" I've had them roll their eyes at my questions, half-listening while they type up the required patient notes in the computer system.
Some of my questions:
What if I get sick while I'm abroad on a rural island with no hospitals?
Just go, and take lots of pictures! Maybe you'll get sicker and maybe you won't!
(I got sicker, and stayed sicker.)
I actually had another question.
(hand on doorknob, swinging head back breathily) Yeah?
What if I fail this medication -- what will we try next?
Well, let's just focus on this right now and we'll address that later (condescending smirk and arm pat).
What if my labs do come back with positive results for inflammation?
I like to address what we have on our plate now.
Well, I don't. And I hate myself a little for going into Good Little Patient Mode, agreeing and mildly scolding myself and laughing along at how kooky and out of hand I am for asking questions to prepare myself, and how I'm keeping them from squashing 3 appointments into 30 minutes.
I'm done with that. If you give your opinion on which drug to try, and I ask for alternative options, you'd better have some (because they obviously exist, whether you think they'll work or not). And if I want to prepare myself for the possibility of having to go on an experimental drug (which I have faced before), I'd like to know that before whatever Tuesday I happen to walk into your office one random day.
Sometimes it takes 10 doctors to find this. Sometimes you think you're with a great doctor, then the relationship sours and she stops returning your calls. Sometimes you're in a small town and there's actually no one else to see but them, or you're in a big city but you've been through every GI practice only to settle with a "meh" doctor. But don't give up on believing that it should be better than that, that you deserve better.