Algorithms of Liberation: Thriving with Type 1 Diabetes in the Age of Continuous Glucose Monitoring
By Sonja Burrows
Type 1 diabetes is something most people don’t know anything about unless they have to. We usually learn about it because we — or someone we love — experience symptoms leading to a sudden diagnosis, and then we have no choice but to become unrelenting experts. At least, that was the case for me. Prior to the last five years, I lived a life of what I now think of as blissful ignorance, meaning a life outside of the world of diabetes. In that life, you wake up, you go about your day, and you go to bed at the end of it all without fully comprehending how your pancreas keeps you safe and well no matter what you do, where you go, how you eat, what you feel and how you move. Your pancreas does amazing, invisible work to keep you healthy and alive!
After my son was diagnosed, as happens for so many people, our family life was turned upside down. Suddenly everything was a mess of needles and insulin vials and pens and test strips. In those early days, I knew my child was looking to me and to his dad to make sense of the chaos, to keep him safe, and to assure him everything would be okay — just as we had always done in his young life. And as many parents of kids with diabetes understand, if I could have taken my son’s diabetes from him and lived with it myself instead of him, I would have done so in a heartbeat. And yet even though this trade was not an option, my son’s unswerving trust in me to make it right helped me to do exactly that: to keep him well and safe and thriving, somehow, in spite of diabetes.
Three months after his diagnosis — months that were filled with confusion, exhaustion and seemingly unending finger pricks and charts and blood glucose data and carb counting and insulin injections, my son graduated to his first continuous glucose monitor, a device made by a company called Dexcom. Little did we know at the time that this tiny wearable device, together with my son’s new insulin pump, would utterly transform our diabetes life.
A Dexcom continuous glucose monitor is worn on the body, just under the skin, where a tiny sensor thread which does not hurt or bother the person wearing it provides continuous, real-time data about the body’s blood glucose levels. What this means for a person living with diabetes is that they can access their blood sugar data without having to prick their finger and use a meter to provide them with a reading. The data can be viewed via an app on their phone, and can also be shared to the mobile devices of selected family members or friends. For us this meant that rather than waking my son up multiple times per night to prick his finger and measure his blood sugar, we just picked up our phones and instantly saw a number at any time of day or night. It also meant that when it was time for my son to eat, which previously had been a time when he would have pricked his finger to help him decide how much insulin to take with his meal, all he had to do was glance at his phone or smartwatch to access this same information.
How does the continuous glucose monitor perform this miracle, you ask? I can only explain it in layperson’s terms. Essentially the device gathers data from the body of the person wearing it, and filters that data through an algorithm that predicts the person’s blood glucose as well as whether the number is rising, falling, or holding steady in any given moment. Over time, the algorithm has been improved such that the person wearing the device does not have to prick their finger, ever, to receive accurate blood sugar data.
Does this mean it is easy to live with diabetes? No. Living with diabetes, even with the miracle of a continuous glucose monitor, is complicated. You still have to understand what to do with the blood glucose data once you have it, and you still have to make decisions informed by that data. But having so much accurate data, and so effortlessly, is a game changer for anyone living with diabetes.
These days, my son uses not only his Dexcom but also an OmniPod 5 tubeless insulin pump which seamlessly communicates with his continuous glucose monitor to help him make the best insulin decisions possible in any given moment — not unlike a pancreas with functioning islet cells. This has liberated him in new ways, keeping his blood sugar in target range for greater percentages of time regardless of what he does.
My son’s use of this system has enabled him to experience his most successful season so far as a top-performing athlete on his high school’s varsity soccer team, earning him recognition for sportsmanship, excellence, and hustle. It has enabled him to play every minute of every game when given the chance. Thanks to his Dexcom and OmniPod 5, if he needs a break during a game or practice, it’s not because of diabetes.
In short, the algorithm at work behind my son’s continuous glucose monitor has liberated him to do, be, and become exactly what he wants — something that all of us deserve, but that only some of us can appreciate because we haven’t had the privilege to live how we assumed we would. I am proud to count myself among those who can appreciate this now, something I can do only because, unlike before my son’s diagnosis, I know what it means to not only live but to thrive with type 1 diabetes. These extraordinary devices powered by highly-sensitive algorithms are among the most hopeful and inspiring steps toward a future in which we all — those living with diabetes and those loving people with diabetes — can experience the freedom to lead our lives with courage, confidence and joy.
The author’s son goes up for a header. Photo by Steve James.
Note: The title of this article is an intentional, respectful transfiguration of that of the 2018 seminal work Algorithms of Oppression by Safiya Umoja Noble which critically examines the relationship between search engines and discriminatory biases.
