An Open Letter to Parents, from Someone Who’s Been There
As an adult who works closely with parents and peers, “when did you become independent with your diabetes?” and “when did you start really caring about your diabetes?” are questions I’m asked fairly often. If your child was diagnosed before or during adolescence, managing and caring about their diabetes has been your full-time job. At some point, you hope, they will take the reigns in one way, then another. But the timing of these transitions are likely years apart, and very different from one kiddo to the next. Here is my story.
Taking on Diabetes Management…but for what?
At what point did I start performing tasks such as self injecting, pricking my own finger, and spending Friday nights at a friends house sans parents? All of these culminated around the double-digit birthday for me. (I was diagnosed at six.) These to me are the gradual “learning to let go” self-management aspects that parents often feel comfortable with before allowing certain age appropriate milestones like longer-duration sleep-overs, non-chaperoned field trips, and the ever anticipated acquisition of the drivers license.
However, just because my family and I were satisfied with me taking on these behaviors didn’t mean I (a) wanted to do them, and (b) did them at all. Developmentally, I cared more about prom dress shopping, making sure I allowed myself enough time to get ready in the morning, and which house party I’d be attending with college roommates. To be brutally honest, the only 90 minutes I truly focused on diabetes was every 90 days or so, during the hours before my doctors appointment. On the train ride to Boston, I frantically filled in the blanks of made up blood sugars reflecting a desired yet slightly higher than anticipated A1c. There, I said it. I made up my some of my blood sugars.
Despite years of Mom and Dad brushing the topic of complications (“you don’t want to go blind, do you?”), I stacked any thought of unwanted outcomes to the back of several mental piles. I remember a phase in middle school, when for a few months, it would be a miracle if my blood sugar was under 200. I just thought it was part of diabetes to have high blood sugars, since that was the problem anyway, right? “It’s supposed to be high, I have diabetes,” I thought to myself. I’d eat a bagel at a blood sugar of 300, because, why not? I’d “forget to check my blood sugar” at lunch and just bolus.
During college, I spent the majority of my summers counseling younger awesome kiddos with similarly deprived pancreatic function at the camp where I found my mentors. For those 10 weeks, I focused — changed my infusion set on time, used a sharps container, and truthfully wrote down my blood sugars — but returning to college campus life come autumn immediately teeter-tottered my mind back towards my everyday life as a student.
Things That Made Me Go “Hmmmm”
When did I start actually THINKING about how my food choices and every day diabetes-related behaviors would affect my long-term health? We’re talking at least a decade after I gave my first injection.
The last few weeks at Syracuse were the worst. Barely any classes, final papers and exams turned in, I was left to procrastinate packing, chug the final cases of beer and savor every last moment with my forever friends. Numerous nights in a row, I’d come home from various parties with a meter reading HI, then wake up in the morning either low or in range — sweet! One night though, I felt that HI. I felt sick. Was this the beginning of me thinking about my future? And not living in the moment?
After graduation, something shifted. I needed a job, and it took more effort to gather with friends to have fun. I couldn’t walk three houses down the street and see 10 cool people and hang out on a porch and do nothing all day. I started to think about my future, and unfortunately my future still involved diabetes. I suddenly wanted that A1c to get under the 8 percent it had been stationed at since before I arrived at school four years earlier. My new goal was to get it under that.
Roughly three months later, I was in a big box store, buying myself a new “grown up laptop” when the phone rang. My endocrinologist called informing me that my A1c had dropped down to a 7.3! I was for one, shocked, but also, so proud. Even though I know the majority of diabetes outcomes go so far beyond the A1c. At that time, that’s the number I wanted, and I got it.
Sweet Success: The Motivation I Needed
From that day forward, I was motivated to do the best I could to manage my diabetes while living my life. Ten years later, there are still days and weeks I feel burnt out, prolong the lancet and infusion set change until the beeping sounds annoy me more than the consequential feeling of ignorance. But I care — a lot. Probably too much some days, but maybe I needed to go through a slightly careless phase to get to where I am now? Who knows.
To support my own thinking, we asked a Question of the Day to our Glu users and sure enough, the results mimic my experience. It’s all about communication, and facilitating chats with each other that promote gradual acceptance and processing of our behaviors. This disease is so mental, so much more mental than we ever talk about.
What causes me to care more now? I have a routine. College and teenage life is unpredictable and routine lacking, and I choose to expose myself now to mostly clean, whole, foods that give me energy to participate in the things I enjoy. I want to have kids, and be successful, and a routine with as close to a flat lined blood sugar graph I know is what can help. I’m motivated.
For parents or adults caring for teens and young adults, don’t fret. They will get there, all at different times and stages, but they will. Developmentally, we all did the same thing at those ages. As adults, we shouldn’t expect our twenty-somethings and teens to realistically think about decades of experiences later when their brains physically aren’t designed to do so. They already have one organ functioning less than optimally, so let’s all continue to work with their thoughts and meet them half way. It’s already hard enough being a teen, right?
So if you’re a parent or caregiver of a stubborn teen who you beg to prick a finger before they get in the car, and worry to pieces about their future, continue to facilitate positive communication and let them form their own ally with their diabetes. It may not be today, or tomorrow, or next year, but it will happen.