Friday, May 17, 2013

that girl

I said I'd try and post more during Celiac Awareness Month....and this is one topic that is near and dear to my heart.

The thing I hate the most about having Celiac Disease actually has nothing to do with the food itself. It's the stigma that comes with it.

When someone offers me something, I have to choose what to say. I can politely take it, throw it away, and immediately disinfect my hands. I could tell them, "no thank you," which usually results in a nasty look by the offerer, who thinks I have disrespected them. OR I can tell them I have Celiac Disease and can't eat it. Depending on how well I know the offerer, how likely they are to be offended, and how likely they are to start an argument, I choose my answer.

Most of my friends and acquaintances have been very understanding about this whole gluten thing. They don't really understand it but they do understand it's not easy. Some, though, have actually made the whole process harder to handle in one way or another.

See, the media's representation of Celiac Disease and going gluten free have stigmatized those who struggle with this auto-immune disorder. Every week, there is a new celebrity going gluten free to lose weight, or sharing their success story of how much healthier they feel now that they cut gluten. The problem is, most of these people don't have Celiac Disease and don't realize the effect gluten has on those who actually do.

Those celebrities, and even celebrity doctors who frequent daytime talk shows, tell the world that a little bit of gluten doesn't hurt. They don't have to check EVERY. SINGLE. LABEL. They don't have to write to companies to find out if there is hidden gluten in their products. They don't have to worry about "gluten free" foods being cross contaminated with glutenous products made by the same companies. They don't have to worry about missing out on work and every day activities because they are sitting on the floor next to the toilet for the next few days/weeks/even months.

Those of us with Celiac Disease do. Shopping with a Celiac takes HOURS. Those first few months, we'd be at the grocery store for hours checking labels, checking websites, checking blogs and other sources to see what foods were safe. Right now, companies are not mandated to list allergens in their ingredient list. Some do, which is always a huge relief, but many are unreliable.

There are people who truly believe that Celiac Disease is a fad. They say insensitive things because they don't know any better, and were educated by celebrities and media who failed to fact check. I try not to be offended  because I'd like to think people just don't know any better. That's why I keep blogging about it...if I can make just ONE person more aware then my job is done. Isn't that what awareness is all about?

So I'd like to leave you with a video. A video that sums up the stigma of living with Celiac Disease. I hope you will watch it, and not buy into the hype that Celiac is a fad. We are not picky. We are not anti-social. We are just trying to be as normal as we can.

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