I was diagnosed with diabetes in second grade, so I’ve had this disease along for essentially all of the available rides in my almost 40 years. From 1986 onward, I’ve experienced everything from field trips to fights with my parents about boyfriends to learning to drive to college to pregnancy and parenting children of my own. My life, for all intents and purposes, has always included diabetes.
And for the most part, I think I’ve had my wits about me in terms of this disease. (… for the most part.)
When I travel to speak at conferences and advocacy events, parents of kids with diabetes regularly ask me a version of the same question: “What did your parents do RIGHT when raising you with diabetes?”
It’s a tough question. My bias of love towards my parents is hard to shake, and also they were/are not perfect. (Same goes for me – no perfection here.) They’re good parents. From the diabetes perspective, a few specific things were very helpful:
Diabetes counted when driving. When I was preparing to get my license, it was 1995 and glucose meters were able to provide a memory bank of checked glucose numbers. A condition my parents set for earning my license was that I had to check EVERY time I got behind the wheel, and straying from that plan meant I couldn’t drive. And I wanted to drive SO VERY MUCH that I was willing to do anything to earn that independence. So I checked my blood sugar constantly. And also offered to go pick up milk anytime we needed it, even twice a day, if necessary. (I still love to drive.) This habit has served me well into my adult life, only now I check my CGM before I drive.
I saw my clinicians on my own. When I was a teenager, my mother started splitting the appointments with my endocrinologist with me. We’d go in as a team for half of the appointment and then she’d step out for part of it. This allowed me to stretch my own wings as a patient, raising any concerns I had without worrying what my parents would think. This was especially helpful when I was considering becoming sexually active, because it allowed me to have honest conversations about risks, prevention, and sexual health with my doctor, helping me make informed decisions as a young adult.
I was encouraged to seek help. When my parents divorced when I was 20, my overall health took a swift nosedive and my diabetes was no exception. During this emotionally loaded time, I was encouraged by my parents to seek help from a very skilled psychologist who specialized in type 1 diabetes, and her intervention kept me from making some less-than-optimal decisions. This interaction proved to me that my emotional and mental health needed as much support as my physical health, a realization that served me well when I experienced postpartum anxiety after the birth of my son.
It was not an excuse. Diabetes was not an excuse in my household. It wasn’t a reason not to clean my room or avoid my homework. Diabetes wasn’t a reason for talking back to my parents or being late for curfew. It wasn’t this get out of jail free card for being an asshole to people. I was sometimes punished for diabetes-related things, like lying about my blood sugars or not checking when I said I would. And while I hated being held to a standard that no one else in my family had to manage, I realize that my parents made diabetes something I was taught to take responsibility for, and not something to crutch out on. Now, I appreciate that diabetes was included by my parents on my list of “chores” because that put diabetes management into a silo of non-negotiable, accept-it-and-keep-at-it things.
And I wasn’t alone. Early on, my family sent me to diabetes camp, allowing me to connect with other kids who had diabetes and who understood what it was like to feel like “the odd man out.” Finding my peers, especially at an early age, showed me that diabetes wasn’t rare and wouldn’t hold me back on the whole, and for the moments when I felt overwhelmed and isolated, I had my diabetes camp friends as an emotional boost. (This peer connection thing clearly carried on for decades, as I’ve been writing a diabetes blog for almost 14 years now.)
I eff things up on the regular. But diabetes, for better or for worse, has been so tightly woven into everything I do that it doesn’t feel like an intrusion. An inconvenience? Yep. Something I out-and-out loathe from time to time? Hell yes. Something I appreciate the perspective I’ve gained from? Fine, I’ll admit a yes to that one, too.
There’s always been an ebb and flow to the measure of grace I’ve approached this disease with, and perfection hasn’t ever (and WON’T ever) be achieved. Nope. And my parents and I fought regularly and aggressively about all kinds of crap, including diabetes. But through hard work and a refusal to let diabetes define me, my parents helped me make this disease a capital T “Thing” but not an all caps “THING.” And if I had to do it, I’d approach parenting a child with diabetes similarly.
Thanks, mom and dad, for helping me become an adult who can mostly handle her stuff. I promise to try and clean my room more regularly now.