Sunday, August 19, 2012

A pox on the box!!!

Sometimes I think about how much of my life intertwines with diabetes. Diabetes does not run our lives, not at all, but it does influence a lot of our decisions because we're always juggling various combinations of foods, activity, stress, hormones, sleep, etc., and trying to anticipate how everything will affect Sarah's blood sugar, in an effort to keep her in the "sweet spot" as much as possible. For such a busy lifestyle, we actually do pretty well at this most of the time.

And even when there's no next meal or next activity immediately on the horizon, I am very closely in tune with the diabetes social network. What I've been wondering lately is... Why? I mean, I love my fellow diabetes moms. You guys have kept me sane through a challenging couple of years, and I think I, in turn, have helped others stay sane. But there's SO much information about diabetes coming at me all the time. Meme's and quips and articles and stories. It never ends.

And so I ask again... Why? I haven't seen any truth about T1 in ages that surprises me. So it makes me wonder, are we playing to the wrong audience???

I had a seriously eye opening experience this morning, I volunteered to work at a JDRF booth at a local country music festival.

In this environment, I was well outside the box. In fact, there was no box. There was Sarah and I... And the real world. And in the real world, NO ONE (okay, in this case no one is 95% of everyone) has a CLUE what type 1 diabetes is. We were in a pretty good spot, a shady area near a firetruck spraying water on the hot crowd, so we had lots of visitors. I started each conversation with some variation of "Hi! We're the JDRF, we're about fundraising for a cure for type 1 diabetes and providing resources to families affected by type 1 diabetes".
I have to admit, the responses floored me. I mean, I KNEW there was misinformation and misconceptions out there, but whoa... I got everything from:

"My grandma died of that. She took pills for years" to

"My husband has that. He used to have stage 2 diabetes but now it's worse and he has stage 1",

to the condescending "it's all about diet. Eat right and you'll be fine!", to my favorite...

"If people would just stop eating crap," to which I replied "actually, type 1 isn't related to diet, type 1 is an autoimmune disease", to which he replied "I know that. But people get it because of all the crap their parents ate before they were born".

At which point I considered strangulation as a means of communicating my true feelings... But decided JDRF might not see that as a public relations win.

Ultimately what I learned is that in our circle of family and friends, T1 makes sense. We know what it is, we know how to treat it, and we know what it isn't - but most of the rest of the world is completely clueless!

My challenge, and my challenge for all of you, is to find a way to find more opportunities to advocate outside the box. How can we MAKE people stop and listen long enough to at least understand the very basics? I don't want Sarah to have to spend her whole life dealing with people who are completely stuck in the "she did it to herself" mentality!

Can this be our next big push? Let's stop preaching to the choir and take the message to the world.

Thank you.

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