To Respect Me, You Need to Respect My Disease

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: 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.

To Respect Me, You Need to Respect My Disease

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...

...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.

...assume that we're eating gluten free at a restaurant because of a "fad" instead of a medical disability and not follow proper cross contamination protocol.

To Respect Me, You Need to Respect My Disease
Dairy free ice cream from Disney World! And yes...I ate it ALL!
...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.

...make me feel guilty for having a "high maintenance" or "picky" diet, even though I have zero control over my autoimmune disease.

...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.

...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.

To Respect Me, You Need to Respect My Disease
Even if my pizza looks a little different...
...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.

...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.

...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"?

...see me as less worthy of befriending, dating or loving because I'm not "easy" or "normal."

To Respect Me, You Need to Respect My Disease
Lots of love during my college graduation...
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.


*Also linked to What'd You Do This Weekend, Create Link Inspire, Terrific Tuesday, Turn it Up Tuesday, Wine'd Down Wednesday, Wow Me Wednesday, RunningwithSpoons, Share Fest*

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


Comments

  1. Heart touching post .... thank you

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  2. This is a philosophy that can be applied to all sorts of things. We are not defined by our: (fill in the blank)

    Great post!

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    1. Good point, Meg! Thanks for the comment.

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  3. Wonderful post and so true! I have food allergies and have two kids with even more severe food allergies. It's difficult most of the time because like you said, people don't understand the severity of it all. My daughter could die from eating cheese, yet people still think it's okay to have 'just a taste'...keep up the good work! I really loved this post!

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    Replies
    1. Thanks for sharing your story, Katie. That's so frustrating about you and your kids. People really do need to learn that a little bit of any allergen can have a HUGE impact!

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  4. Shared to PainPalsBlog regular Monday Magic Inspiring Blogs for You! Welcome to CIB x

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