Because we think about it. A LOT.
I'm talking about our diet. Our gluten-free diet.
Hello family, friends, fake friends, coworkers, acquaintances, strangers, waiters, cashiers, internet jerks, celebrities, wanna-be celebrities, boyfriends, ex-boyfriends... this post is for you. You know about our celiac disease because we've told you about it. And if you eat with us regularly we've probably told you about it a lot.
This may annoy you. You may internalize how you wish we'd shut up. Some of you may verbalize that you wish we'd just relax about this whole thing. And some of you may complain on the internet about how dumb and annoying everyone who follows the gluten-free diet is. (For the record internet jerks, we think you're pretty dumb and annoying too).
Hey, you're entitled to your opinions, but before you go and post or say something more offensive, I want to make sure you're seeing the whole picture here. It's not like we want to talk about this all the time. In fact, a lot of us completely avoid social situations so we don't have to talk about it ever. It took me an entire month after I was diagnosed to work up the courage to eat at a restaurant for fear of being "annoying" to the waiter. It took another two years to stop apologizing to waiters for being "annoying." And even still, sometimes I apologize to my dinner guests about all the trouble I'm putting everyone through. It's times like these that I hate talking about my gluten-free needs.
So I want you to think about this: have you ever liked or loved someone so much that you find yourself bringing him/her up in every conversation? That everything you look at triggers a memory or thought or desire for them? See that bird? John loves birds. OMG SKITTLES. John's little sister's boyfriend's cousin only eats the yellow ones. Can you believe that?! John told me the other day that people who walk outside barefoot are creating healthier lives for themselves so we're going to start doing that every day together and I just love how connected that makes me feel towards him.
You know what I'm talking about. Do you know why that happens? Because that person is on your mind all the time. You don't even realizing you're talking about him or her so much because you're just talking about what you're thinking about.
For those with celiac disease, this same effect happens to us. Although what's on our minds is there due to fear - an emotion of almost equal magnitude as love.
You see, throughout the day it's the fear of consuming gluten that revolves in our mind like a record you can't turn off. At least three times, sometimes more, we're struck with an overwhelming list of burdens and responsibilities just to take care of our bodies: Check the label. Was it dextrose or dextrin that's not safe? Is it a new jar? What's been dipped in this? Wipe down the countertop. Wipe down the tabletop. Wipe down the stovetop. Use the gluten-free oven mitt. Ask for the gluten-free menu. Explain your intolerance to the waiter. Use the word "severe" so she gets it. She doesn't get it. Fuck, croutons on the salad. Ask for the manager. Smell the cider for apple scent. Pick off a piece of the bun and have someone else taste it first. Discretely throw away the cookie your friend baked for you in her unsafe kitchen. Don't eat anything from the crockpots. Carefully pick the carrots from the veggie tray that look untouched. Double check the label. Politely turn down the sample. Ask if there's gluten in the chai. Yes, the chai. Is that a dried wheat noodle stuck on this fork? Get a new fork.
The list goes on.
At least three times a day.
Then comes the food encounters we don't plan for. The snacks in the break room: Oh look Sandy brought in her "famous" fudge brownies which I will never, ever get to enjoy. Cool Ally, I'm glad you love them and no, I'm not sorry you "are gonna blow so many points on this but it's so worth it."
The cookies at the grocery store: Snickerdoodles are on sale? Man, imagine that. An entire box of soft, snickerdoodle cookies for less than $3.00.
The commercials: Taco Bell, if you were really thinking outside the bun you'd have more options without gluten, mkay?
Food is a pillar of our socialization and is integral to our human connections, yet us with celiac disease are constantly bombarded with reminders that we can't have something that 99% of the rest of the population can. We can't eat this. We can't eat that. We can't, we can't, we can't. We're disconnected. And we're reminded of this disconnection three or more times a day. We're thinking of this disconnection three or more times a day.
Now, it's not all doom-and-gloom for us. We pride ourselves in knowing how to care for our bodies, and we're experts at administering our medicine, food. And yes, while the gluten-free diet fad has provided more options for pre-made food for us at the supermarkets and more variety dining out, this really isn't what we want.
We crave connection more than pre-packaged muffins. We crave acceptance more than a modified chicken caesar salad.
And this craving? This hunger for normalcy and privacy and confidence and a general sense of ease is on our minds all the time. We can't escape it. It follows us around like a creepy ex who still texts. This hunger is inside of us, just like the disease you can't see. Sure, we can prepare safe, relaxing meals at home and we might even invite you over to enjoy them - we love that! But as soon as we socialize outside of safety, we're on guard. We're strategizing through the entire situation. We're thinking about it.
But this isn't just about us. We know what's wrong with us. We're lucky that way, and a lot of us honestly believe that.
We remember what it was like feeling sick to our stomachs after every meal. We spent days and nights locked in the bathroom nursing pain, nausea, bloating, gas, diarrhea. Our skin itched and the weight of fatigue - real, smothering, inescapable exhaustion - had us regularly canceling plans. Panic attacks were frequent, initiated by overwhelming amounts of irrational anxiety. And our minds were permanent residents of a dizzy, airy fog encircling the weighty blues of our depression.
We don't want that for you. We want you to get tested. We want you to go to the doctor. We want you to make sure there isn't anything wrong with you - even if it's not celiac disease! - because we know what it's like to find health after it's been lost. We want that for you.
So yes, we're going to talk about celiac disease. We talk about it because we have lived it. We talk about it because we are living it. We talk about it because while it doesn't define us, we frequently think about it.
We know we talk about it a lot, and we're probably not going to stop. And I don't think we should.