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 week. While 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.]