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To Respect Me, You Need to Respect My Disease

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I am not my disease – but to respect me, you need to respect my disease too.

This is the realization that flashed through my mind this weekend as I read a Facebook post in one of my gluten-free support groups. At first glance, the story is simple. A girl goes to slumber party but calls her mom that she’s feeling sick at midnight. But this girl is gluten-free and brought her own snacks – enough for everyone. Her friend’s father even gave out “gluten-free” cupcakes – only they weren’t. And when she gets sick, all he can say is that the gluten-free fad is “all in her head” anyway. Even worse? He later tells that girl’s mom his daughter deserves “normal” friends.

There are so many things wrong with this story, but the issue that stuck out to me was the pure lack of respect from this father. And, the more I thought of my own struggles with cruel comments about celiac disease or my diet, the more I realized they all have one trait in common: Respect.

If you respect me, you don’t…

1. Steal a piece of food off of my gluten-free plate or eat my gluten free leftovers without asking. My disease requires this diet and the extra time and energy it takes to make safe food. Ask first, and I’ll probably give you a taste – but don’t assume that gluten-free food grows on trees or that we eat for cheap.

2. Assume that we’re eating gluten-free at a restaurant because of a “fad” instead of a medical disability. Please follow proper cross contamination protocol.

3. Equate celiac disease with thinness. I am thin. I have celiac disease. Those two are correlated, but one doesn’t necessarily cause the other. Some celiacs are overweight. People can eat gluten and still be healthy. So don’t say I’m “lucky” to have celiac disease because I’m skinny or that it’s OK that I have to stare enviously at the bread basket because at least I’m thin.

4. Make me feel guilty for having a “high maintenance” or “picky” diet, even though I have zero control over my autoimmune disease.

5. Get mad at me for not being able to eat “gluten-free” baked goods that you made yourself but possibly cross contaminated with gluten-containing pots, cooking tools or a kitchen.

6. Point out how “weird” or different my diet is, even with a backhanded compliment like, “Wow! That looks so…healthy.” I appreciate interest in my food, but sometimes it’s better to just let me feel like I’m just one of the girls enjoying a pizza and movie night.

7. Be inflexible because, sometimes, I’m going to need to change plans. I’m going to be “glutened” or have an upset stomach. I’m going to be extra tired from a fibromyalgia flare. Sure, it’s not ideal – but it’s me.

8. Deny my right to parent my own child. Maybe my child has a gluten allergy or celiac disease; maybe he or she just functions better on a restricted diet. Either way, don’t let your preconceived notions about a certain diet interfere with my parenting style or my child’s well-being.

9. Lie to me about food ingredients. Would you tell someone with a peanut allergy that your brownies are peanut free since they “only have a little” and “that couldn’t hurt?”

10. See me as less worthy of befriending, dating or loving because I’m not “easy” or “normal.”

I feel fortunate that I’ve never experienced the bullying that this young girl has – simply because she’s gluten-free. The fact that it occurred from an adult, a figure children are told to trust, is even worse. For me, this scenario is just another reason why members of the gluten-free community need to advocate for themselves 24/7.

We don’t just deserve respect – we need to demand it. And not just respect for ourselves, either, but respect for the disease that is part of our everyday life and identity.

How do you fight back against cruel comments or bullying for your gluten-free diet or disease? Tell me your ideas below.

Follow this journey on Casey the College Celiac.

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Thinkstock Image By: SanneBerg

Originally published: April 24, 2017
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