Everyone at school knows I have celiac disease. If the fact that I singlehandedly run The Celiac Saga was not nearly enough of a clue, my speech at one of last year’s all school assemblies should have done the trick. I’m passionate about celiac advocacy, and my hope is that one day, the world can catch up to the level of celiac-savviness that we have had to develop. Anyone who knows me personally is aware of the fact that I am more than happy to talk about my experiences, my symptoms, and to help out those who are struggling to adapt to their new lifestyle.
I am incredibly open about having celiac disease. But I will admit, there are times when I wish no one knew — especially my peers at school.
It’s not that anyone is outright cruel about it — there is no waving of bread in my face or taunting, but it’s the little ignorant comments here and there that add up. Comments like, “Wow, I would literally die if I couldn’t have bread” or “Dude, that must suck so bad” are harmless, but they can get old pretty quickly. I usually laugh it off, but there was one comment said this week that really got me thinking.
“Wow. That must be really, really hard. I can’t imagine having to live like that.”
And they’re right.
It’s hard, it’s frustrating, and it’s scary knowing that so little of something so common can knock me out for weeks. I remember how terrified I was when I was first diagnosed, how scared I was (and still am) to dine out, and how bitter I was that this disease had happened to me.
But then I remember how frustrating and scary it was to have constant stomach aches for a decade. How frustrating and scary it was to not be able to get out of bed. How frustrating and scary it was to go to doctor after doctor, only to be called “crazy” or “anxious.” I remember how relieved I felt when I was diagnosed, how the promise of a better, healthier future greatly outshone the hurdles this disease brought with it.
I remember the hidden gems I’ve found since getting diagnosed — the gluten-free bakeries, the allergen-free cafes, the amazing new foods I’ve gotten to try. I remember all of the wonderful people this disease has brought me to, how awesome of a baker I’ve become, and how much more confident and open I’ve learned to be because of this disease.
And in this moment, as I think over this comment, I no longer wish that no one knew. There is nothing that will change the fact that celiac disease is complicated and messy, but if I had the chance, I wouldn’t wish this disease away. The new opportunities I’ve had and people I’ve met because of my diagnosis makes every single ounce of frustration and fear worth it, and I refuse to let small doses of ignorance shame me into wishing I was silent about my disease.
I am a celiac, and I am proud.
This blog was originally published on The Celiac Saga.
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Valerie is seventeen years old and the founder of The Celiac Saga – a network aimed at providing support, information, and awareness for teens with Celiac Disease. Valerie has six chronic illness – Celiac Disease, Primary Raynaud’s Syndrome, Neurocardiogenic Syncope, Recurrent Subacute Thyroiditis, Keratoglobus, and Fibromyalgia. She hopes to one day become an advocate for Celiac awareness and improve transitional care for complex care patients.
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