Wednesday, May 1, 2013

The Worst Advice, Ever

As I sit with my aunt in a downtown restaurant, perusing the menu and catching up while I'm in the area for a few days, my aunt launches into a story involving me in a candy store as a child. "We didn't know you were diabetic yet—I think we were trying to kill you!" she interjects as she unravels the tale. Later, as she reads the menu to me, I think aloud about what I feel like eating, debating between a burger and a salad. "Why don't you get the salad?" she asks. "Wouldn't that be safer for your diabetes?"

I choose the salad. I'm not used to that word, "safe", being used in the context of diabetes, only in the context of food allergies. But it does aptly describe the situation.

When I was growing up, after I had been diagnosed, my diet suddenly became very restricted. I wasn't allowed to eat any foods substantially high in sugar or starch. The words, "Can I eat this?" left my mouth before anything entered it, and this habit lasted well into my teens. I was allowed occasional treats, but these were carefully incorporated into my meal plan and often invariably resulted in high blood sugar. Not that I cared much, though my mother certainly did. I stood by once as she told a story of me begging to have some sugary treat as a child, and my aunt looking on and saying, "Why don't you let her have it just this once?" My mom's reply was that if she let me eat that food now I would get sick later.

Yet, she also let me experiment myself at times, too. The initial reaction to my diagnosis was to ban all sugar from the household, even for my non-diabetic siblings. That ended several months later when my brother (quite earnestly) asked for Apple Cinnamon Cheerios for Christmas. When they began eating foods that I couldn't, I still didn't really grasp why I wasn't allowed to eat the same food. I didn't think anything terrible would happen. Still new to diabetes, every morning I would plead for some lightly sweetened cereal (we were never allowed to eat the pure sugar stuff, even before diabetes). So, one morning in exasperation my mom told me that I could eat whatever I wanted. I dug into a bowl of cereal. That same day at noon my teacher called home when my blood sugar clocked in at 30.5 mmol/L. My mom showed up at the school and then called my pediatrician; we hadn't seen such a reading since my diagnosis. But at least I finally had an understanding of why I couldn't eat whatever I wanted.

This early understanding carried me through my childhood and teenage years. Before a multi-day field trip in my final year of elementary school, my mom spent hours at our (then uncommon) computer, typing out medical information for the school staff. She filled pages of instructions and notes regarding allergies, asthma, blindness, and most of all diabetes. But in the course of these notes she also wrote: "Jen is very responsible about her diet and can tell, based on her blood readings, what would be acceptable to eat and what would make her readings high." The sentiment is repeated again on a summer camp application during my final year of high school: "Jen needs to eat sugar-free food—she knows what she can and can not eat."

Aside from the outdated notion of "sugar-free", I often wish my skills of discernment and refusal were as keen as they were in childhood.

In high school I suddenly had independent access to food through the student-run convenience store and the vending machine. I did "cheat" on occasion, of course, and used to knowingly lie when my mom asked me why my blood sugar was high at dinnertime. (I found out years later she was fully aware of my supposed deception.) Yet, food allergies and diabetes kept me from eating much of the junk food being sold, and for the most part I didn't feel tempted by sugary or starchy food. I didn't really remember ever having it, so I didn't feel deprived even when friends around me ate it. Of course, there was the equally adhered-to understanding from them that I just couldn't eat some of the stuff they ate.

In my mid-20s that all changed. Along came Lantus, carbohydrate counting, and finally the insulin pump in short succession. I was told repeatedly by diabetes educators and doctors that I could suddenly eat (and I quote) "anything I wanted." To this day, I consider this to be the worst advice I have ever been told, and I wish I had never been given it. I wish, instead, that medical professionals had told me to stick to my usual diet, and instead of having an A1c in the 7% range I would be able to achieve one in the 6% range.

But that's not what happened. And, when you tell a 20-something university student that they can eat anything they want, that's exactly what's going to happen. I told all my friends. Every time we discovered something I had never had before—a milkshake, a sundae, an extreme dessert, a type of candy or chocolate bar—I would give it a try. I tried all kinds of baked goods and desserts that had been off-limits for years. All very good-tasting, all very high in carbohydrates and, despite taking extra insulin, most apt to make my blood sugar high. But I didn't care. I'd been given "permission" by my doctor to do it, so why wouldn't I? And this continued for years, until I realized that I had become overweight and also realized that I actually did want to get my A1c down into a good range.

Food isn't all of it, of course. Type 1 diabetes is hard to control even when all variables are held constant. But food is one aspect of the environment that is controllable—unlike weather, stress, hormones, or viruses. When I was a kid I remember handouts with diagrams of a triangle connecting the three most important factors to consider in blood sugar control: food, exercise, and insulin. Somehow, over the past five to ten years, food and exercise had faded into the background and insulin (and its ability to be adjusted for food) has taken centre stage.

People everywhere advocate for that fact that there is no diabetic diet. People with diabetes can eat anything. Recently, I've begun to wonder whether this is such a good thing. I understand the sentiment—it should be a lifestyle, not a diet; people can eat anything if it's in moderation; everyone with diabetes is different, so there is really no standard diet. But in terms of a mindset, being told you can suddenly eat anything you want after over 15 years of restriction ... and five years later discovering that, if you truly want good control, "eat anything" isn't quite true ... is a tough pill to swallow. Of course, these days there is less of a need for meal plans and strict diets, but "eat anything" seems at the other extreme of the spectrum, and there must be something else doctors can tell patients that is more of a middle ground.

The hardest part about "going back"—even part way back—is that, while my aunts and parents still remember the old days, my generation doesn't. Most people my age, be they friends or acquaintances, don't accept a simple "I can't eat that" or "I don't want to eat that' as an answer. They coax and argue, and even though it's not their intent, they make it very difficult to say no sometimes. "Why not just this once." "You work so hard the rest of the time, take the night off and celebrate!" "Can't you just take insulin to cover it? That's what my other friend with diabetes does." "Come on, a small bit won't hurt." (I would rather not eat it at all than just eat a bit.)

It's hard to put up a fight against these arguments, especially when multiple people come after me multiple times about the same food, or put a plate of cookies right next to me, or shove a plate with a cupcake into my hand. It's hard for them, too, because they don't see any consequences on the occasions that I do cave and eat something that I know is going to make my blood sugar high. And, of course, there's the fact htat years ago I made a big deal about the fact that I cuould eat anything I wanted. In moments of stress, tiredness, busyness, excitement, or relaxation in a social environment I find it hard to convince myself that I shouldn't eat some foods; instant gratification in that moment seems worth the high blood sugar later. It's no wonder my defense seems even weaker to others.

Lately I have tried to make a point of mentioning, after eating something that I know I shouldn't, that my blood sugar is high and that I shouldn't have eaten X. But it's not the same as seeing someone keel over or get sick. As a kid, when it was nearly impossible to keep blood sugar in range even with 110% effort, I spent many days at school with roller-coaster blood sugar. I never complained or used it as an excuse to get out of something unless I was low. I went to my first summer jobs, university, and eventually professional employment with the same attitude. I may feel tired or thirsty when my blood sugar is high, but I generally keep quiet about it, and as a result I generally ignore the symptoms myself and don't notice them much. Sometimes I've even found myself wishing that I was more affected by high blood sugar than I am, just so others would understand why I "can't eat" a certain food. Or that my glucose meter had an alarm that would go off for a high reading, like a CGM does, just so others would take note. I have tried in vain to explain the relationship between blood sugar and complications, and most simply do not understand.

In the end, I need to learn to simply refuse to eat foods that I know tend to make my blood sugar high, even if those around me don't understand. I sometimes wonder if the myth of a diabetes diet is such a bad thing. The other day a group of seniors was using a room in our office for an event, and they offered me a lemon tart when I walked past. My response of, "No, thanks, I'm diabetic," garnered an argument from no one. Simply, "Oh, too bad," and they moved on to the next employee passing by.

Such a nice change, for once. It would be great if all responses were so understanding.

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