I wanted that elusive three-word phrase you never get when you’re type 1 or the parent of a child with T1D: peace of mind.

By Samantha Willner

When I began continuous glucose monitor (CGM) therapy in 2013—after 22 years of living with type 1 diabetes (T1D)—I thought my entire life would be transformed. Having been diagnosed with T1D in 1991, (a far cry from the days of boiling needles and peeing on a stick to test your blood sugar, but still a time pre-analog insulin when pumps were still a backpack-sized dream in a lab) a CGM was the realization of a future scientists had promised me and my community for decades. And like everyone with this disease, I desperately wanted a break from the never-ending cycle of testing, bolusing, correcting, treating, and worrying. I wanted that elusive three-word phrase you never get when you’re type 1 or the parent of a child with T1D: peace of mind.

And CGMs, to me, promised just that; a life in which I didn’t have clusters of little, black prick marks on the tips my fingers anymore, where predictive trends could clarify whether that unicorn 100 mg/dl on my meter was still going to be magical in an hour or two, where a guardian angel watches over me all night, ready to sound the alarm if I slip below 55 mg/dl.

With all these high hopes, I couldn’t help but wonder how my early years with T1D would have been different if CGMs had existed, say, when I was a newly-diagnosed infant, incapable of communicating my highs and lows; or in middle school, when I hated diabetes and just wanted to be a normal kid playing sports, making friends, and having sleepovers; or at age 18, when I left home and my parents’ watchful eyes for college; or as an undergrad when I studied abroad in Paris and had my diabetes supplies shipped overseas in batches to get me through the semester. Surely, a CGM would have changed those experiences for the better, if not for me than for my parents, who could do nothing more than pray that I’d return safe and sound from school every morning.

With all these romanticized expectations, it was unsurprising that the promise of this new technology fell short after a few months of continuous monitoring. There were clear advantages, of course, like the ability to glance at my numbers instead of doing a full-blown blood sugar check during an important work meeting or first date. Trend data could also make my bolus and correction estimates more precise, preempting a high or low that would have otherwise arisen from human error. And the ability to share my data created a fail-safe measure against catastrophic lows that made me feel more comfortable sleeping alone. But, as it turns out, CGM life was a lot like my life before state-of-the-art technology, only a little bit more stressful.

For example, whereas I would otherwise just give some insulin and re-test in an hour to correct for a high, I was now forced to watch every grueling, terrifying minute my BS was out-of-range and insulin hadn’t kicked in. And when my CGM alarms in the middle of the night, it continues to do so even after I’ve treated, struggling to keep up with my time-worn interventions even when I’m stable and ready to get back to sleep. But worst of all, there are periods when my CGM reports readings or trends so improbable that I’m forced to just ignore it altogether.

Of course, the advantages and disadvantages of using a CGM are relative, and with each iteration I’ve noticed the precision keeps getting better. But what I’ve realized after being a person with diabetes for 26 years and a CGM-user for only the last five years (with numerous “Dex breaks” in between) is that diabetes technology can’t work properly in the absence of intuition. The only way I know for sure that my Dexcom is wrong is because I’ve become so in tune with my body that my brain has evolved into its own continuous glucose monitor of sorts, checking for low glucose symptoms well-before an emergency arises, sensing whether I’m high and steady or high and rising, and at times estimating within 20 mg/dl what my actual blood sugar reading is (try me—if I could make money from guessing my own blood sugar, I’d be a very rich woman!)

As it turns out, the transformation occurs when technology meets years of training. And when I meet parents of newly-diagnosed children with T1D who have never known life without a CGM, who obsessively check their Dexcom applications and watch every spike and drop with bated breath, who hand their child a juice box without that child taking note of how they’re feeling and what it might mean, and who panic when their Dexcom signal is out-of-range or their phone dies unexpectedly, I realize that my childhood sans-CGM may have had a few silver linings after all.

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Samantha Willner was diagnosed with type 1 diabetes (T1D) in 1991 when she was just one year old. Since then, she has played an active role both personally and professionally in the diabetes community, previously working for JDRF International as a donor relations director and currently serving on the Global Ambassador Council for Beyond Type 1.

Samantha also holds a B.S. in Communication from Cornell University and recently earned her MPH from Yale, where she conducted original research on barriers to insulin access affecting U.S. adults with T1D. Currently based out of Philadelphia with her husband, Ryan, who also has T1D, Samantha is passionate about being a role model and inspiration for type 1 children and teens.

For more insight into her life with T1D, you can follow her on Instagram @samanthawillner.