Day 4: Today let’s talk about changes, in one of two ways. Either tell us what you’d most like to see change about diabetes, in any way. This can be management tools, devices, medications, people’s perceptions, your own feelings – anything at all that you feel could use changing. OR reflect back on some changes you or your loved one has seen or been through since being diagnosed with diabetes. Were they expected or did they surprise you?
If I could change one thing about Diabetes it would be to make it history.
But, if that option was off the table, there are lots of other things I would change. I would make it not apply overnight, be less relentless, have more accurate tools available, not have so much stigma and guilt and shame attached.
Today, I especially I could change how diabetes disrupts a healthy relationship with food. I actually eat healthier since my diagnosis (at age 29) and I’m sure I am much more aware of how what I eat affects my body. Would I have come to better habits anyway, even if I hadn’t been diagnosed with T1? Maybe. But the motivation to feel my best and to stay healthy for my family is amplified because of diabetes.
Eating healthy foods doesn’t mean that I have a healthy relationship with food however. The constant vigilance, the analysis of every meal, snack, quick bite, and the judgy feedback of “testing” blood glucose before eating, after eating, when thinking about maybe eating all create a dysfunctional relationship with food. I resent all of the prep I have to do before I eat (weighing, carb counting, worrying about pre-meal bg, pre-bolus timing, exercise timing) — there have been many times that those I am eating “with” are finishing their meal as I’m taking my first few bites. Sometimes that even makes me resent those I’m eating with, despite how unreasonable those feelings are. I dislike any event that is mainly appetizers or grazing over long periods of time. For years I lived by a rule that I wouldn’t eat anything that was an appetizer. If that’s all there was, I just didn’t eat. This made me super popular at parties! I feel guilty and self-critical when I eat something less healthy that makes my blood glucose high for hours afterwards even if I have tried all the insulin/pump tricks I know. When I daydream about the bionic pancreas the thing that is most appealing is the idea of food just being food – not a math problem or an emotional minefield. Though honestly, I’m not sure I can remember what that would feel like.
Multiply the food dysfunction by 2 (feels like 100) when it comes to thinking about my daughter’s relationship with food. She was diagnosed at 3 so I have always done all the thinking about what she’s eating. Now she’s 7 so she’s starting to make more independent choices. I feel a lot of tension around not wanting to create a dysfunctional food relationship for her – don’t want to say “you can’t eat that because you have diabetes,” or making her feel even more different from her peers when other parents ask if she can have cake at a birthday party, or needing to make a big deal over food before she goes on a play date. But, she needs to understand that healthy eating is important for everyone and even more important for her because of her diabetes. The food choices she makes (or that we make for her) have an immediate impact on how she feels and on what activities she can do well as well as on her long-term health and avoiding complications. I feel guilty and sad when I tell her she can’t have something or has to wait because of her diabetes (even if I would have said no anyway for health reasons) and I feel guilty and like a bad parent when I say yes to something that isn’t the best choice.
It’s never just about eating something. I hate to deal with it myself and I hate even more that it complicates her life as well. I love the idea of making diabetes fit your life instead of making your life fit diabetes and not letting diabetes keep you from doing anything you want and as much as possible I follow those principles in our lives. But, it doesn’t change the reality that staying healthy requires thoughtful awareness of managing diabetes and food plays a major role. So today, that’s what I wish I could change.