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Diabetes Food Lies.

So many rules were slapped into place immediately upon diagnosis, with diabetes feeling like a disease of “don’ts.”  Don’t eat cookies, don’t forget to measure your food, don’t leave the house without your meter or insulin or glucose tabs, don’t go to bed without checking your blood sugar, don’t eat too much sugar-free candy or else you will take up temporary yet violent residence in the bathroom.

But some of the don’ts were more subtle:  like “don’t allow the disease that’s built around obsessing about food to let you become obsessed with food.”

My mom used to hide packages of cookies in her closet, and I’d wait until she was in the shower to steal into her walk-in and grab cookies by the fistful.  I’d eat until my stomach ached and I didn’t take an injection to cover my indulgences, and to this day, I still grapple with the “why” of my actions.  I know I am not the only kid who did this.

Guilt and food went hand-in-hand right away for me, as a kid with diabetes.  I felt guilty about eating those closeted cookies, and even more guilty about lying to my mother about my actions.  And yet I did it anyway.  I have a very clear memory of hiding a carton of ice cream underneath the couch upon hearing my father’s approaching footsteps, afraid not of him telling me I couldn’t eat it, but being angry that I didn’t care enough to take insulin to cover it.  I have no idea why I never bolused for those furtive snacks; it was as if taking insulin for them forced me to acknowledge that I shouldn’t have eaten it in the first place, as though the bolus itself made the action real, instead of the resulting high blood sugar.  Or, you know, chewing and swallowing.

I never wanted to have that high blood sugar.  I just didn’t want to have the restrictions, and my way of rebelling against them seemed rooted in pretending I didn’t have the rules of diabetes to own up to.  Rebelling was so subtle, and so easy, for me.

Now, as an adult, I still find my feelings about food to be complicated.  I feel very lucky that I have never dealt with an eating disorder and I always accepted, even if I didn’t always like, the shape and layout of my physical body, but diabetes has a way of making me view food through a lens that my non-diabetic friends don’t share.  My mind knew that numbers on the scale or the size tab on the back of my pants didn’t matter as much as number on my meter, but still, it is always a struggle to remind myself of that fact.

But the guilt that comes with my relationship with food, as a person living with type 1 diabetes, is always on my plate.

I live in my own house with my husband and my daughter, and I still have that urge to hide my food.  Last night, I had an uncomfortable low blood sugar reaction that I decided to use the candy conversation hearts in the deli drawer of my fridge to treat, instead of glucose tabs, and as the deli drawer creaked as it slid open, I wondered if my husband thought I was just “sneaking candy.”  (For the record, Chris hasn’t ever, ever made me feel guilty or judged for what I’m eating.  The guilt isn’t borne from the reaction of others, but from my own projected perceptions.  It’s a weird head game.)  Some of the thoughts remain, but my mini-binges stopped long ago, once the don’ts of my mid-1980’s diagnosis of type 1 diabetes gave way to today’s modern insulins, meters, and mindsets.

A few days ago, a parent wrote to me and asked me why her child with type 1 diabetes would lie about eating certain foods.  And I had no idea what to say, because I still don’t know why I did it myself, or why I still sometimes have the urge to do it.  All I know is that even with a supportive family, friends who don’t judge, access to like-pancreased people, and a mindset dominated by confidence in my diabetes management, I struggle to explain what made me binge-eat those cookies, or binge-lie about doing it.  And I don’t know why, decades later, it’s still hard to say out loud.

[This week is National Eating Disorders Awareness weekWhile this post is not about an eating disorder, it is about the disordered mindset that can come along as part of a disease that is anchored in food.  If you’ve ever felt guilty about your food choices or perceptions, you are not alone.]

36 Comments Post a comment
  1. “I always accepted, even if I didn’t always like, the shape and layout of my physical body.” <—puts you eons ahead of most of us! That's awesome.

    I think I lie about food, not at all for diabetes reasons, but in order to feel like I have some kind of privacy. (?) I also secretly (from my family) drink Diet Coke when I go to BJs wholesale club.

    Fun to confess!

    02/25/14; 1:03 pm
    • Confessions are fun!

      And it’s not like I’m all zen about how my body looks/feels. It’s just not my main concern.

      02/25/14; 1:07 pm
  2. Hmmm… I completely identify with what you’re describing. For me, a lot of it was just lack of education– until six or seven years ago, I didn’t even know what a bolus was. Everything was basal insulin for me. Since I knew I couldn’t be perfect all the time, I figured when I did go rogue, 5 giant handfuls of chips weren’t much worse than 1. But I still felt the guilt, and I don’t know why. Today, I simply try to remember how I’ll feel three or four hours from now if I indulge. Doesn’t always keep me from the high-carb/low-nutrition stuff, but it works sometimes.

    You’re right… It’s a weird head game.

    02/25/14; 1:33 pm
  3. As always, such an individual disease. While I can’t relate (as much) to sneaking, hiding or feeling guilty about food, I started off my late in life diagnosis with a seriously twisted relationship with food, where I would use it to spite my diabetes. Fascinating topic, indeed.

    02/25/14; 1:42 pm
    • Rachel #

      Same here!

      02/25/14; 3:26 pm
  4. Teri #

    Ohhhh, the denial of it all! I swear, I have a devil and angel on each shoulder arguing constantly over my decisions.

    For me, food is often a comfort and, of course, the more carbs, the more comfort. I have a hard time denying myself because (1) it feels so good and (2) life is short so why not?

    Of course, I set myself up for failure so when those half-price (or more!) sales arrive right after Halloween, Christmas, Valentine’s Day and Easter set me up so well.

    But then, I overindulge and refuse to own up by admitting I succumbed and cover myself and the devil wins while the angel sulks.

    Why do we hide? It’s the loss of something everyone else takes for granted. Control over those things we cannot control? Perhaps.

    Meanwhile, the two of them keep playing weird head games and I keep trying to win.

    02/25/14; 1:47 pm
    • Amanda #

      Well said!!!
      “Why do we hide? It’s the loss of something everyone else takes for granted. Control over those things we cannot control? Perhaps.”
      I could not agree with you more!
      Thank you Keri for writing about this, it’s actually something I was talking about just this morning with a friend.

      02/25/14; 2:38 pm
  5. Jennifer #

    I think, for me, the sneaking and lying about food as a kid was born out of anger. “It’s not fair that I can’t eat that while I watch all my friends pig out on it at school/parties/etc.” “I don’t want those carrot and celery sticks my mom wants me to eat for snacks!!” “I just want to be normal!” I think I convinced myself as a kid that my over-indulgences of the bad foods were deserved, like a reward of some sort.
    I also still feel guilt about food as an adult, married with my own home and child. I panic when I have to upload my pump data for my endo to review. I feel like if my endo sees a bolus for a high carb meal, she will scold me, though she has NEVER done such a thing.
    Maybe we can all get a group rate on some therapy to help our minds with playing these games 🙂

    02/25/14; 2:10 pm
  6. Michele Kennedy #

    Wow. It’s as if you snuck into my head and wrote this.

    02/25/14; 2:45 pm
  7. ria #

    It’s the blame game, only we can’t blame anyone but ourselves when we screw up.
    I hate feeling guilty, unfortunately guilt seems to come with the type 1 territory.
    Thank you.
    If I had your writing talent I couldn’t have said it better…… =)

    02/25/14; 2:53 pm
    • ria #

      and another thing… =)
      when I was diagnosed 42 yrs ago the doctors at that time seemed to be uneducated about the phychological aspects of this disease (guilt, grief, anger, to name a few)
      At least now physicians recognize that there is a “diabetes related” depression that often accompanies our “condition” and insurance now most insurance plans cover counseling fees.

      02/25/14; 3:25 pm
  8. We’re all really screwed up about food because of diabetes. I sometimes have the urge to hide what I’m eating for some inexplicable reason.

    I sometimes have trouble accurately calculating carbs because of the mental block that anything I put into my body shouldn’t have THAT many carbs. The piece of cake shouldn’t have more than 30 carbs because I shouldn’t eating a dessert with more carbs than that… the bolus (or the size of it) really does make food choices seem for real. The resulting affects on blood sugar? Not so much.

    02/25/14; 2:55 pm
    • Christine #

      My endo refers to those carbs as phantom carbs

      02/26/14; 12:45 am
  9. Rachel #

    For me, when I eat something I’m “not supposed to” it’s a tiny FUCK IT moment because this disease is constant, and it’s hard to manage. We all know that there are no vacations from managing a chronic illness and those times happen because sometimes we want to live like a normal person, even if it’s just a little while.

    Because I didn’t get T1 until I was 20 years old, I have never hidden food or lied about it, but there are times when I eat a cookie or two (or four) and don’t bolus for it. I know that’s not good, and I manage my diabetes on a constant basis, but these little things means escapism for me. For 10 minutes, I don’t have a disease to think about food 24/7.

    Thankfully I don’t do this often for it to be super dangerous, but yeah, I can identify with this, wholeheartedly.

    02/25/14; 3:24 pm
    • This post hit home, and Rachel summed up perfectly how I feel when I binge on chips or cookies. It’s that Fuck-it moment, and if I don’t check my glucose the rest of the day, it’s as if it never happened. It’s like I’m striking back at the man – only in this case, the man is me.

      02/27/14; 9:42 am
  10. Lindsay #

    I absolutely agree! For me, I think Rachel hit the nail on the head. Anytime I’m bolusing for food and the total carbs is over 50, it’s like I can’t go above that number in my mind. I also think bolusing is kind of equivalent to being on a diet and writing down everything you eat. There’s a reason that works, because if you know you have to write something down, you are less likely to make those terrible food choices. For me, the bolusing is kind of like having to write down that I just ate a cupcake. It takes a little bit of the joy of enjoying food away.

    02/25/14; 3:52 pm
  11. Oh wow, that story reminds me of my first true experience of solidarity. It was diabetes summer-camp, and a bunch of my cabin-mates and I found that one of the counselors had a pack of cookies hidden among his stuff. Needless to say, we devoured them; all of us — but naturally left a couple of cookies so that *maybe* he wouldn’t notice. Needless to say, he did, and the other counselor gave us all a stern lecture. (I’ll never forget the impact of one sentence he shouted: “Jean was pissed!”. Everything about Jean [a man, the French version of the American name John] seemed so respectable and noble, from his accent to his choice of words to his mannerisms, and to couple it with the word “pissed” really left an impression – like we’d defied a king, and it convinced me I’d gone too far.

    And even today – over thirty years later – at work ,where I was running low all day, I felt the need to “sneak” my food so my co-workers wouldn’t confront me and ask if something was wrong – or accuse me of doing something wrong.

    02/25/14; 8:22 pm
  12. Taylor #

    I used to sneak double stuffed oreos…I figured out that I could eat 4 oreos and bolus 2 units and I didn’t spike. I only did it in the summer when my parents were at work. I also vividly remember eating some sort of chocolate while locked in the bathroom and crying because I was worried that Santa would see me and I wouldn’t get any presents…I couldn’t have been more than 6 years old. I am surprised that I turned out relatively normal 🙂

    02/25/14; 11:52 pm
  13. Jess #

    I always went straight for the frosting…sometimes you just want to eat.whatever the heck you want even if there’s a 360 bg to follow. My husband refers to it as my “rebellious” side. Diabetes protest maybe?

    02/26/14; 1:36 am
  14. Your cookies, were my ice cream. If I was about to get caught, I’d hide the bowls under my bed and later, when they were occasionally “discovered”, I’d claim they were cereal. Yes, they’d fossilized.

    02/26/14; 10:36 am
  15. Beth #

    “I have no idea why I never bolused for those furtive snacks; it was as if taking insulin for them forced me to acknowledge that I shouldn’t have eaten it in the first place, as though the bolus itself made the action real, instead of the resulting high blood sugar.”

    This. I was diagnosed at 15, but still have the same experiences. I think in my head, I perceived it was “bad” to have to take so much insulin. So if I didn’t take the insulin, it’s like it never happened, even though clearly my constant high blood sugars were the result.

    I’m in so much better control & have such a better mental outlook about it now. Pre-food bolusing and fully bolusing for high carb meals have made such a huge difference for me even if it means a high daily intake. At our last diabetic group dinner, we were comparing our daily totals, and one has a miniscule amount and three of us take a lot, and it was all “ok”.

    02/26/14; 11:01 am
  16. Dan Raetzel #

    Wow! You nailed it on the head with this one, even the picture at the end. I have been type 1 for 42 years, am married and have two teenage daughters, yet still feel like I have to ‘sneak’ sweet stuff to treat a low. Defintely all in my head, but for some reason will not go away. When I get “caught”, the only comment I get receive is, “blood sugar low?”.
    Those exact cookies where the last guilt free binge that I had in second grade when my mom and I were baking them for Christmas in 1972. I remember always giving the Hershey’s kiss a littel extra push to make it kind of pool up at the base before downing yet another one.

    02/26/14; 2:19 pm
  17. AJ #

    I wasn’t diabetic until I was almost 19, but I have very similar memories of sneaking food, hiding food when I heard my dad coming, etc, so it can’t just be diabetes that makes us want to hide food. Sure makes sneaking food more annoying, though.

    02/27/14; 1:50 am
  18. Joy #

    So helpful to hear this. I wasn’t diabetic but my Mom was a no sugar lady, for the most part (now that I’m a Mom I think this was a brilliant choice but of course I hated it as a kid). I was always sneaking things or hanging out long enough at a friend’s house until their mom would offer me a cookie or cereal.
    I was surprised when our son was diagnosed (just last year) that there wasn’t a long list of “don’ts”. Such a blessing that there isn’t now. It is helpful to hear your story; I will have a little bit of understanding when (if?) he sneaks food.

    02/27/14; 11:24 am
  19. It’s really the culture around diseases like diabetes that make us lie about what we eat, I think. Our families and friends and science may not tell us that it’s our fault that we have this disease, but popular culture[1] and straight misinformation–even among healthcare professionals!–DO. There’s also this idea, particularly in the U.S., that if you just try really hard, you can overcome ANY disease–so if you can’t, it’s your weakness, not the terribleness/incurability of the disease. This happens with brain diseases (“mental illness”) especially, but also with all the “but you don’t look sick” chronic illnesses.

    [1] it’s acceptable to caption a photo of a stack of cookies “here comes the diabetes”.

    03/4/14; 7:44 pm
  20. Boy, I can hardly describe how messed up my relationship with food is, Kerri. And I feel like I’ve make ALL KINDS of progress from where I was decades ago. I have no answers or insights, just raising my hand to say “yeah, me too.”

    03/20/14; 1:08 am
  21. Rebecca #

    Diagnosed in 1982, at age five, at an Air Force Base training medical center, the old ADA Diabetic Exchange List was still being pushed, at least until the mid-90’s. My parents were told by endocrinologists and dietitians that I was allowed one jelly bean at Easter, one teaspoon of Spagettio’s at lunch, and ketchup was a “no no” on a hot dog or hamburger because of the sugar content. I had to weigh all my food on a food scale. If I went low, I was to be given one hard peppermint candy. Sliding scales were to be used for highs only, not to cover for extra food.

    09/26/16; 1:54 pm
  22. Rebecca #

    I also wanted to add, it was common to be yelled at by endocrinologists every three months. If an A1c was out of range, it was because I was a bad diabetic and I must be eating things I’m not supposed to be eating. I was sent to classes to watch films on gangrene feet or folks who’d gone blind. I was told this is what would happen to me if I ate a doughnut or something sweet. Really scary stuff for a kid.

    09/26/16; 2:04 pm

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