When I started caring about my diabetes…
*I originally wrote this piece in 2013, for the T1D Exchange, but I dug it up and now sharing it here. Nearly 10 years later happy to report I have 2 kids, married, and STILL love working with parents.
I love my job, I really do, and one most satisfying parts of my role now is that it puts me in front of parents. I’m flattered they often refer to me as a role model to their child; however, one of the most challenging questions I’m often asked to is “So when did you start caring about your diabetes and getting it under control?”
Since I usually cringe at the word control, I therefore hesitate answering these types of questions for many reasons. “When did you become fully independent with diabetes, and “when did you start really caring about your diabetes” warrant completely different articles, and in this piece, I’ll focus on the later.
When did I begin performing tasks such as self injecting, pricking my own finger, and spending Friday nights at a friends house sans parents, all of the above started around the double digit birthday for me. (I was diagnosed at age 6). Everyone is different. 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 sleep-overs, non chaperoned field trips, and the ever anticipated acquisition of the drivers license.
AND…just because my family and I were satisfied with me doing these things, 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 mins I truly focused on diabetes every 90ish days or so, was most likely the hours before my doctors appointment on commuter rail ride in to Boston where I filled in the blanks of made up blood sugars reflecting a desired yet slightly higher than anticipated a1c.
Note: I did not have a CGM in college.
Not every teen or college student does this, but I did. It was during the 45 min train ride, and then the 20 minute subway ride, where I was worried. Continuous glucose monitors were still in progress, and a pump was on my radar, but not the fashion accessory I craved at the time. It took a few more years of growing up before really thinking, “hmm so what I do now, could affect my eyes and kidneys later.” Ooooh.
Despite years of mom and dad brushing the topic of “you don’t want to go blind do you,” I brushed it to the bottom of any pile of caring. I remember 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, that was the problem anyway right? “its supposed to be high, I have diabetes,” I thought to myself.”
During college I spent the majority of my summers counseling younger awesome kiddos with deprived pancreatic function at the camp where I found my mentors. Although for those 10 weeks I focused-changed my infusion set on time, used a sharps container, and truthfully wrote down my blood sugars, the return to college campus life come autumn immediately teeter tottered my mind back towards the present.
So 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. One night though, I felt the HI. I felt sick, and something hit me, that feeling as close to a blood sugar target for the graduation festivities in the coming days was more important than playing a drinking game in the attic I spent so many Friday nights in. Was this the beginning of me caring?
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 4 years earlier. My new goal was to get it under that.
Roughly 3 months later, I was buying myself a new “grown up laptop” at BestBuy and the phone rang. My endocrinologist called telling my a1c had dropped down to a 7.3. I was for one, shocked, but 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.
Ten plus 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 now, 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.
What causes me to care more? I have a routine. College 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.
For parents or adults caring for young adults, they will get there, all at different times and stages, but they will.
