BUFFY: Well, does it ever get easy?GILES: You mean life?
BUFFY: Yeah. Does it get easy?
GILES: What do you want me to say.
BUFFY: Lie to me.
GILES: Yes. It's terribly simple. The good-guys are stalwart and true. The bad-guys are easily distinguished by their pointy horns or black hats and we always defeat them and save the day. Nobody ever dies…and everybody lives happily ever after.
(BTVS 2.07, "Lie To Me")
This is my entry in the July Diabetes Blog Carnival, on test strip accuracy:
Fill in the blank: "Test strip accuracy is important to me because_______"
Test strip accuracy is important to me because I need some truth in a sea of lies.
That sounds harsh, but lies, half-truths and mistakes are a constant of diabetic life.
The first lie many of us hear is at diagnosis. Not only are many people (like me) misdiagnosed, but the words that come after might be worse:
"Don't worry, there will be a cure in five years."
This is a pretty lie, a panacea, a lie born of optimism and kindness, but a lie nonetheless. So many of us have seen this prediction fail, over and over again. Most of us can't be perennial Charlie Browns, running at that football time and time again as it's pulled out from under our feet. This lie also encourages a dangerous pattern of thinking: "oh, I don't have to take care of myself too well. I just have to hold out for five years, then it will be like this never happened." We lie to ourselves. Liar.
The next lie, often delivered to terrified parents, is that we'll never be able to live successful, active, fulfilling lives. (Soon after diagnosis, I remember my mother being approached by the children's hospital's Children's Wish-type foundation, to potentially enroll me, as if I were terminally ill. She is not a person who gets angry, but she made an exception.) The Diabetes Online Community has proven again and again that this is untrue. In fact, many of us strive to disprove this lie by being our best selves, setting records, trying harder. This is wonderful, but it can be a dangerous burden; we don't just have to be as good, we feel we have to be better.
The sister lie is the opposite phrase: "You can live a normal life with diabetes." This one is always about inflection. "You can live a normal life with diabetes" as opposed to "You can live a normal life...with diabetes." The second one speaks more to the actual truth of the phrase. Yes, we can live successful, awesome lives, but always WITH diabetes. We can't forget we have it, or we run the risk of no longer remaining successful. We will always have more challenges than people who have bodies that maintain homeostasis on their own. To use the first inflection, to me, discounts the hard work and tremendous achievements we make just living our lives.
Then there are the media lies about diabetes, which show a true lack of knowledge about terminology, treatment, and the condition itself, the most pervasive ones being "Type 2 is the only type of diabetes" and "Type 2 is only caused by diet and exercise - that is, "Type 2s brought it on themselves." These lies lead to a fundamental misunderstanding of other people. They lead to blame, shame, and destroyed and splintered communities.
Products lie to us. The snake oil salesman says that a special drink will cure us, for five easy payments. The diet guru tells us that ancient grains or greens will remove the diabetes blues. We've been sold the colour yellow, cinnamon, prayer, amulets, elixirs and homeopathy for homeostasis, and none of them work, but you can spend all your money or die trying.
Companies and gadgets lie. We're told something makes diabetes "easy" or "painless." Diabetes is never easy, and never painless. We're told that getting a meter for free is a great sale born of company selflessness, and then we're trapped paying a dollar or more per strip. We're told we should do what's best for ourselves, but then we wind up fighting with insurance companies to afford it, or deity help us if we don't have insurance. Food says "low carb" or "sugar-free," but isn't good for us. Nutritional information isn't always accurate, or has unrealistic serving sizes. Most of the time we're flying blind in the food and carb-counting department.
My insulin pump is the best piece of technology I've ever had, and I love its help in management, but it sometimes lies to me too. Do I really have an occlusion or not? Is the insulin spoiled? Does it say it's delivering fine, but the cannula is kinked so my sugars are suddenly in the 20s with no explanation? Does low battery mean I have two weeks, two days, two hours, or two minutes? I never know. Stop saying you're not primed, you little liar. You're primed. How much of the insulin did I actually get? Is the IoB a lie? Machines don't always know the truth.
We're told that, if we follow all the rules, that we shouldn't get complications. That our bodies should respond the same way to the same stimuli. Liar, liar, liar. If we're "compliant" and "good," we shouldn't have any unexplained highs or lows. That if we're "well-managed," realistically, "dead in bed" syndrome or DKA should never happen. The world looks a parent, relative, friend of a child, teen, adult with diabetes who is in the hospital or worse in the eye and says, "but she was well-managed...wasn't she?" Yes, but perfect management, or diabetes being fair, is a lie.
Most damningly, our own bodies lie to us. Sometimes, what my body wants is deeply intuitive and correct, but sometimes, it's not. Sometimes I feel low when my glucose levels are actually high. Sometimes I feel hungry due to a low, but my stomach is full. Sometimes, I need to eat but my levels are too high and I can't find it in myself to be hungry. Most of the time, my body says I want potato chips or chocolate, when I really need kale. Those who have hypoglycemia unawareness face the worst and most dangerous lie of all. My body is unreliable and doesn't respond consistently to any calculations. It's the worst betrayal when you are lying to yourself, or, more accurately, your self is lying to you.
So when I hear that test strips can be +/- 20% in accuracy (a 10 could be 12, or 8) and are often worse, it makes me sad. Because it's a lie, and we're already dealing with so much misinformation, so many lies, that we'd like something to be true. Something that, instead, takes the best of us, the life from us–blood is life–and turns it into another lie. Something that comes from the heart, which is supposed to (but often fails to) be the truest thing of all.
And that's why test strip accuracy is important to me.
-Ilana (If you’d like to participate in the DSMA blog carnival as well, you can get all of the information at http://diabetessocmed.com/2013/july-dsma-blog-carnival-3/)