They say lightning doesn’t strike twice. But what happens when it strikes 3 times…all within a 2 and half year period? Type 1 diabetes first struck my mom in December 2015 at age 61. Then my daughter Emily in August 2017 at 13 months old. I was feeling left out, so I joined them 8 months later for my 35th birthday.
Type 1 diabetes, once referred to as “juvenile diabetes,” can manifest at any age, and diagnosis among toddlers and adults is on the rise. Both genetic and environmental factors have been implicated in causing the autoimmune attack on the pancreas’ insulin-producing cells. Scientists believe that genetics plays only half a role in type 1 diabetes. They’re still unsure about what exactly contributes to the other half, but certain stresses and viral infections may come into play.
As unusual as it is for 3 generations to develop type 1 diabetes in such a short amount of time, what’s more interesting is how different each of our diagnostic experiences were. Fifteen units of insulin to the stomach, a pile of prescriptions, and a mind full of fear and accumulating questions… a lack of empathy or critical education from the endocrinologist… my mom’s first experience as a type 1 diabetic. She spent the next year and a half educating herself and tailoring her diet and insulin regimen to reach her goals.
Mountains of educational resources, a personal support team, intense training, and a week spent in the pediatric hospital wing. Emily’s first experience as a type 1 diabetic. And my first real exposure to what managing a ruthless disease with constant vigilance entails.
By the time I took myself to the ER eight months later, I seemed to be the one providing the education. The staff was perplexed and even somewhat annoyed that I insisted on getting carb counts on their delectable hospital food.
The difference in educational resources and training I received as a parent of a newly diagnosed child vs as a newly diagnosed adult is remarkable. Not to mention the complete indifference that my mom received. The diabetes crash course that accompanied Emily’s diagnosis was invaluable, as my mom and I have been able to apply these learnings to our own management as well. Why wouldn’t an adult be offered the same level of resources and training upon diagnosis? It seems as if adults are just expected to educate themselves about their disease and how to manage it. A colleague of mine sums it up perfectly: “It's crazy how some doctors can arm patients with very potent drugs and little to no knowledge of how to use them properly.”
Despite the education (or lack of) we received upon initial diagnosis, during these last few years we’ve learned that when it comes to type 1 diabetes, education based on life experience is better than what any medical textbook can offer. (Although pages from a medical textbook at the very least would have been appreciated!)
Some families share hair color, dimples, and personality traits. We share alcohol swabs, test strips, and bruised finger tips. But we also share recipes, tips for controlling sugar highs and lows, and most importantly, support. Amidst the diabetic storm, there are silver linings in knowing that you’re not alone. In knowing that someone understands your frustrations and victories. In knowing that my 3-year-old thinks it’s the norm to inject yourself before you eat. And that you’re not the only one eating quinoa and meatballs instead of spaghetti and meatballs for Sunday lunch.
At Jumo Health, it is our mission to empower people with the knowledge to understand and manage their medical conditions. Watch this video to learn more about diabetes. Click here for more resources on diabetes.