Thursday, July 25, 2013

Liar

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.

BUFFY: Liar.
(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/)

40 comments:

  1. Well said! The English teacher in me says, "Wow! Love how you delivered the argument! Powerful!" and the T1 in me says, "You have no idea how words spoke to me today!" Thank you! Your words matter!

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    1. Thank you!! I'm a fellow English prof, so your comment really warms my heart!

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  2. Wow! Well said (plus you reeled me in completely with the Buffy reference).

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    1. Thank you! I may be a bit too big of a Buffy fan - we have kittens named Willow and Giles (http://diaturgy.blogspot.ca/2013/05/cat-got-your-insulin-pump.html) and here I am as Vampire Willow (http://diaturgy.blogspot.ca/2012/08/buffy-diabetes-slayer.html) :)

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  3. Thank you for this. I've just been diagnosed with T2 and it's been a lot to understand. I've been surprised by the equal parts support, criticism, and "help" I've been offered. I appreciate your words.

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    1. Thanks very much. This is definitely a hard road, often made worse by the "help" of other people. Some people "get it" and some don't, and that's why sharing our voices and awareness is so important. Even though I'm not a T2, I'm always here if you need a sympathetic ear!

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  4. Beautifully written, this brought tears to my eyes unexpectedly.

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    1. Thanks so much! I definitely teared up a few times while writing it.

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  5. Wonderfully written! You are so very right. There are so many things out there that aren't accurate. We don't need test strips added to that.

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    1. Thank you! The worst thing is that we're presented with all this inaccurate information, and then we're judged if we don't perform perfectly with it!

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  6. Thanks so much for putting this into words. I feel the exact same feelings of betrayal and hopelessness in a world of T1 that just IS NOT fair. And the "icing" on the cake is all the lies and half-truths and cons out there trying to make a hard situation harder.

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    1. Thank you :) Yes, it's definitely hard enough without any sort of extra exploitation or added confusion.

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  7. Wow, that pretty much rocked and sums everything up! Great post!

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    1. Thanks so much! I'm touched and happy you enjoyed. :)

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  8. If I could virtually stand up on an virtual table and cheer until I'm hoarse, I would do so for this post. Rock on with your erudite bad self.

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    1. Thanks so much! I love this comment; it makes me grin ear to ear. I want to find some way to work "erudite bad self" into my business cards. :)

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  9. Well said! I recently discovered your blog through a link on another blog (I can't remember which one) & I just finished reading it from the beginning. I love every single post! I am looking forward to reading more.
    Brandy

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    1. Amazing! Thank you so much for reading; I really appreciate it. :)

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    1. Thank you for reading and commenting! :)

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  11. This is an amazing post. Seriously amazing.

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    1. Thanks, Kerri! Would you believe I almost deleted it as being "too angsty"?

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    1. Thank you! :) (BTVS is the best! I often think about diabetes in terms of it: http://diaturgy.blogspot.ca/2012/08/buffy-diabetes-slayer.html)

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  13. This is so true. Diabetes is a lying rat bastard.

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    1. Seriously! Stop lying, diabetes. Nobody likes you.

      Thanks for commenting. :)

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  14. This is so well presented ... thank you so much. the test strip inaccuracy is so mind boggling in a day and age of crazy technological advances. It can kill Type 1's who are trying to correct high's.

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    1. Thanks! It is absolutely incredible that there is no entirely reliable monitoring device.

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  15. This is an amazing post. Thank you for posting such a thoughtful and well-presented discourse. This needs to be shared!

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    1. Thanks for your lovely reply! I'm so excited that people have been sharing this post; it obviously struck a chord!

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  16. There is so much truth in this post. I love the irony. But wish there wasn't a reason for it.

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    1. Unfortunately, much of the best material for writing comes from bad experiences. I think that's the only consolation! Thanks for reading. :)

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  17. Excellent and completely accurate post.

    I couldn't help hearing Carol Kane's voice from the Princess Bride shouting "Liar, LIAR". You'll find it about 1:45 in this YouTube clip!

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    1. I *love* The Princess Bride, and I love that scene! I'm not a witch, I'm your wife!

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