Wish for Awareness

I lost count of the number of conspiratorial conversations I fielded on Halloween night, our first Halloween Since Diabetes. 

"So, how is Bella handling not being able to have Halloween candy this year?"

"Uhm..."

"You know, since she has diabetes."

"Well, we didn't have candy last year. We don't really do candy since sugar has always messed with her pretty badly."

"Oh. So then how did she get diabetes?"

Over and over.

I feel the urge to correct them on behalf of all Type 1s and explain that Bella COULD have candy if that was part of our diet. But it wasn't before, so we aren't starting it now just to prove that we can.

That part seems to twist people's brains a little too hard, so I've been leaving it out. But I have a deep need to correct Type 1 misconceptions and it feels so wrong to leave people in their ignorance.

It's not their fault. It's the ridiculous doctors who thought that the insulin diseases should keep the same name even after they realized they were not treated the same. It's the fact that diets DID used to be limited, due to limited insulin technology. It's the fact that Type 2 is now an epidemic and everyone in America knows a Type 2 diabetic. Diabetes is growing at an alarming rate, but of all diabetics, only 5% are Type 1, and only 15% of those are kids. How can we begin to keep up?

The names are similar and do not indicate a significant difference, but the fact is that they are not the same disease and the lifestyles and treatments associated with them are not the same.  In the confusion, Bella's diagnosis is extremely misunderstood - in superficial ways like keeping her away from sweet food, and in deeper ways like assuming it's our fault when she is sick or that it's no big deal and she will "grow out of it" now that she is on a diet.

These misunderstandings hurt in small ways and in big ways, when there is no urgency for better treatments or a cure because people do not understand the life threatening reality of the situation.

Diabetes has nothing to do with our diet. Type 1 Diabetics can eat whatever the heck they want, as long as they give themselves the right amount of insulin so their body can process it. No, the process doesn't go as smoothly as it would in someone with a working pancreas, but thanks to fast acting insulin that was invented in the last 15 years, all we have to do is check sugar, count carbs and give insulin. Sure, everyone would benefit from a healthy diet, but there is no diet restriction for Type 1 Diabetics.

There is for us. There already was.

These unrelated restrictions are now heaped onto Bella as people incorrectly put the two pieces of her life together and tell her it's too bad she can't have a treat because she is diabetic.

The hard part is watching Bella absorb the label that our well meaning family and friends incorrectly apply to her, blaming a body part she cannot change no matter how hard she wishes. We ALREADY didn't eat gluten or dairy or many sugary treats. That was already our diet. For years, we have had amazing friends and family who make sure gf goodies are available and leave the candy out of party bags, but make sure there is still something fun inside. That consideration has always made the girls feel included, and was never blamed on them.

Last year we skipped candy because it isn't healthy for our bodies. This year it's assumed it's Because Bella is Diabetic. Last year we didn't share cake at parties because the girls are on a gluten free diet. This year it's assumed Because Bella is Diabetic. It's exasperating to have yet another educational conversation in front of Bella about Her Condition when most of the time she's really just trying to be a normal kid.



She'll learn to stand up for her rights soon, but how strange it must feel to always be talked about, always have misinformed kids and adults telling you you can't do something that you know full well you can. She doesn't deserve to bear the burden of misinformation, and yet she does every day. I have a lot of talks with her about why people say things about her that are untrue, especially when I have to let a misconception slide in front of her, so that hopefully she will grow up knowing how to advocate for herself.  Bearing the REAL struggles of diabetes is hard enough without incorrect assumptions from good intentioned people.
 

So, onward with awareness. If I couldn't have a cure, and couldn't have miracle technology, then my wish would just be that everyone took interest and understood so that Bella would not have a burden of misinformation on top of the disease itself. And the more people understand, the more support we will have for a cure.