Monday, October 17, 2016

Why Trust Makes Or Breaks Being Healthy with Celiac Disease

Now that Halloween is only weeks ago, terror fills the air almost as thickly as sugar. Haunted houses, spooky costumes - even creepy clowns are popping up all over the country like a bad Stephen King movie. Yet, three Octobers ago, a different kind of fear, one probably shared by 1 in 133 Americans, simmered in my mind: adjusting to a new beast called "celiac disease." 

casey the college celiac

Even several years post diagnosis, I'm constantly learning and accepting new aspects of my condition. My most recent realization? One of the reasons celiac disease can feel so flippin' scary is because of the trust needed to be healthy with it.  

Not sure what I'm talking about? I'll paint write you a picture. When living with celiac disease, you need to trust:

...that the chefs of the Instagram-worthy burger joint you're trying for the first time actually know that "a gluten free bun" doesn't mean "cross contamination" free.

casey the college celiac stacked
Stacked knows how to do both well!
...or that your favorite restaurant - cough, cough, Stacked - will deliver the same safe meal you've enjoyed countless times before. 

...that the boy you're seeing won't laugh off the need to brush his teeth before kissing you. 

...that your roommates or family members won't use your dishes or dive into your (gluten free) section of the pantry, especially without asking first. 

casey the college celiac
The roomies in question!
...that products labeled "gluten free" are telling the truth - cross contamination included. 

For other college students, having someone order them a burrito bowl at Chipotle and bring it back to campus is no biggie. In my case, though, I still remember how "weird" it felt to trust my now/ex-boyfriend with ordering safe food for me

But perhaps the biggest - and scariest - aspect of trust with celiac disease is trusting yourself

casey the college celiac
Throwback to freshman year of college!
I need to believe I am educated enough to know what I can and cannot eat; confident enough to turn down delicious-looking yet dubious offered food; and wise enough to always have a snack on hand. I need to know that I don't know everything about my condition, and not feel ashamed of researching ingredients online or asking for help from my family, doctors or gluten free community. Basically, I need to trust that I will advocate for myself and others facing similar obstacles - and never see myself as "lesser" for my dietary restrictions. 

Accepting responsibility for your own health - heck, your own chances of living or dying - is no small task. It's terrifying. It's frustrating, especially when you make a mistake and feel cruddy for weeks afterward. But it should also be empowering

Although celiac disease requires us to rely a great deal on others - from restaurant chefs to friends to food companies to the people we love most - to stay healthy, we have the final say. We can influence what we put into our mouths, the people who surround us and society's general understanding of celiac disease. 
casey the college celiac
At one of my favorite places!
We can even do all of this while feeling Halloween-grade terrified by our disease and our role in it. Yet, the more we embrace the two words that have come to define so much of our lives, the less frightening that alter-ego may seem. 

You can trust that I will do my best to advocate for, educate others on and thrive with celiac disease. Can I trust that you will do the same? 


Have you ever thought of the trust needed with Celiac disease? What (celiac or non-celiac) responsibilities do you have to trust yourself with? Tell me in the comments below! 



2 comments:

  1. You are so fortunate to have so many people who are understanding and supportive--your family, your roommate, your boyfriend, your favorite restaurant. Sometimes I think trusting ourselves can almost be harder than trusting others; it feels sometimes like if I make a mistake, I only have myself to blame. But that's not fair. You've done so much research and worked so hard to not only be aware of the consequences of celiac, but spread awareness to others.

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    1. Thank you so much for the kind words. And I definitely am the hardest on myself compared to the other people in my life. At the same time, though, we have to remember that we are human...and mistakes will happen!

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