Tuesday, October 13

Celiac is a social disease!

A social disease, celiac disease? And you wonder, "What is she going on about now?"

Well, it's the lead-in line that is most important. I'm drumming that into my son today as pulls his first all-nighter to finish his school essays. And this lead line is shocking! I think of the many ways this disease strikes us socially, and I can't help but write this quick-yet catchy title.

All of us have felt the cultural impact of CD food socialization, and that alone would justify the phrase. Even now, when I write on the social aspects of this disease I have to stop myself from delving to the dregs and using bad metaphors and similes that fit a social disease, (communal sharing). Hey, it's not my fault, but I did refrain from writing the worst of them.

But today, I'm talking shame.

For some people, this disease is treated as shameful as a communicable one. And that's not fair. Many of us can't even say the words out loud, and certainly not to people as a new topic of conversation. I hear this over and over again, "I just keep it quiet." "When it comes up, I try to change the subject as quick as possible." "I don't like people to know that I'm a celiac." "I don't know how to explain it." "They just don't understand." They can't and maybe we aren't really ready to respond. It's hard to put you and your disease out there, so we suffer in silence.

I know it's hard to say, "Let's discuss poop." Which is somehow where my conversation topics end up. but by not preparing ourselves to answer questions that come up, we further complicate this disease.

It's hard to become an advocate, but to help you, to help us, to help each other, we need to be ready to be open, to answer, and yes, once in a while even discuss Celiac, the social disease.

Common questions and easy answers?

1 comment:

Dia D said...

Yeah, been there: "So what are the symptoms?" "You... don't wanna know. Trust me."