Spotlight on Jessie Stover
Jessie Stover is the Development Manager at Breakthrough T1D’s Indiana Chapter. Stover was born and raised in Evansville, Indiana, and she now lives in Indianapolis with her two cats, Milo and Zuko. She enjoys reading, crafting, concerts, and “baking gluten-free desserts so good that no one can tell they’re gluten-free.”
Here, Stover tells her story: from type 1 diabetes (T1D) diagnosis as a toddler, to an insulin pump clinical trial, to learning how to manage her T1D as a teenager, to a new outlook on living with the condition as an adult. Breakthrough T1D thanks Stover for her bravery in sharing her story and her commitment to the T1D community.
Gummy Bears and Insulin Shots
Stover was diagnosed with type 1 diabetes when she was just 2 years old. While her family has a history of autoimmune disorders, “there is no one else in my family with T1D, so it was a big shock to my parents, and we all had so much to learn,” explains Stover.
The learning process started in the kitchen, with a container forever-full of gummy bears to treat lows, a new kitchen scale to measure and track carbs, and sugar-free versions of things Stover had always enjoyed, like Kool-Aid. Between her parents, grandparents, and school secretary, she had “quite the village.”
But, like any kid, Stover didn’t like shots, and she remembers running away from her parents when it was time for an insulin dose.
A Kiddo in a Clinical Trial
During one of Stover’s appointments with her endocrinologist in Indianapolis, she was referred to a clinical trial exploring whether young children could benefit from an insulin pump. “My mom is a very practical person, so it was almost a no-brainer for her since it meant the possibility of no more insulin shots, and it could help manage my blood sugars more smoothly,” explains Stover. No shots sounded pretty good.
By the age of 4, she was enrolled in the trial and using her first insulin pump. Stover noticed a difference immediately; the pump site insertion didn’t hurt at all because they had the option to use a numbing cream. The relief was tangible not just for Stover, but also for her primary caregiver: her mom. Using an insulin pump meant automatically calculated insulin doses, remote control of insulin dosing, and, most importantly, no more shots. Stover has been using an insulin pump ever since.
Learn More about Clinical Trials
Visit Breakthrough T1D’s clinical trials web page to learn more about how you can get involved in clinical trials. Use our clinical trial matching tool to find recruiting trials near you that you may be eligible for. Connect with a Clinical Trial Education Volunteer in your area to better understand the process and get your questions answered.
Being a Teenager is Hard Enough
As Stover grew into a teenager, she also grew into managing T1D on her own. This was when she first truly understood what her diagnosis meant. “It wasn’t new, but it was as if something finally clicked in my brain that it wasn’t going to go away, and now it was my turn to do all the work,” she explains. Coupled with stressful conversations around needing to “do better” to avoid future complications, it was a tough transition, and Stover struggled to find the resources to help her get through it. “Just because the textbook makes it look easy, and my mom made it look easy, it felt like I was expected to immediately do the same,” Stover recalls.
It all changed when someone on Stover’s diabetes care team said: “Being a teenager is hard enough. Adding T1D into the mix is like trying to stop a volcano from erupting!” For the first time, Stover felt that everything she was feeling about being a teen and managing T1D had been put perfectly into words. “I realized I was allowed to be angry, upset, and unhappy, and I didn’t have to just accept T1D and move on. Stepping back and allowing space to understand and grieve my diagnosis helped me,” she said.
This realization opened the door to more candid conversations and a stronger relationship with her parents. Stover was able to openly discuss her mental health needs and set boundaries around what she felt comfortable sharing with her parents about her T1D. “I let myself have space to have bad days and started celebrating the good. I started celebrating my diaversary and stopped trying to make other people comfortable with what I was going through, because I was the one going through it and I needed to do what I needed to do,” Stover explains.
Mental Health Guide
Check out Breakthrough T1D’s Mental Health Guide, which has everything you need to help you navigate the day-to-day of living with T1D.
A Fresh Outlook on Living With T1D
While Stover’s mindset around T1D evolved over the years, she also feels that mental health resources have improved dramatically since she was a teen. Now, she advocates for people living with T1D to take advantage of therapy or connect with others on social media who are experiencing the same thing. “There’s an entire community of people who decided diabetes wasn’t going to be invisible, and in doing so, more honest conversations can happen,” Stover explains. “We know more about chronic illness fatigue, medical trauma, and the effect of societal pressure to be ‘normal.’ If you go looking, you can find someone talking about it. Validation is a very powerful thing.”
Stover’s fortitude shined through when she was diagnosed with Celiac disease right after she graduated college. This time, things went a little differently; Stover had learned to give herself grace, and she found that figuring out how to manage a second autoimmune disease was a bit easier this time around.
In the years since Stover first started using an insulin pump, diabetes technology rapidly advanced with the evolution of pumps and continuous glucose monitors (CGMs), which, when used together, are called an automated insulin delivery (AID) system. As she grew up, Stover was hesitant to put her trust in new systems. “There are so many nuances to T1D care, and it’s been hard to wrap my head around how technology could know me better than I know myself,” Stover explains.
Yet, she eventually decided to add a CGM to her T1D management toolkit. “It is nice to be able to see how your glucose levels are trending,” Stover said. Despite living with anxiety around technology failures and hypoglycemia, Stover found a way to make CGMs work for her. She has her low alarm set when her glucose levels reach 100 mg/dL—well before the typical threshold of 70 mg/dL—so she can execute a plan of action before her blood sugars drop further. “It’s a little extra peace of mind to know that I can catch a low before it becomes a big problem.”
From kid to adult and all the ups and downs in between, Stover found how to manage her T1D in the way that works best for her.
Breakthrough T1D was (and Still is) Along for the Ride
Stover and her family were connected with other T1D families and Breakthrough T1D from the very start. There was a “tiny but mighty” team of parents who started a Breakthrough T1D Walk in Southern Indiana during Stover’s childhood, which, over time, often included many of her friends and classmates. Over two decades later, the Holiday World Walk in Indiana is still alive and well (and organized by Stover herself!).
In addition to Walk, Stover was a Youth Ambassador. “Breakthrough T1D has been a part of my life almost as much as T1D has. And now, getting to be a part of sharing the Walk with other families is truly a gift,” she says.
Word to the Wise
A word of advice from Stover: T1D is only invisible if you let it be. She encourages people living with the condition to take up space.
“Celebrate your diaversary, bedazzle your Omnipod, rock your fun patterned tapes, celebrate with diabesties. Find little ways to bring joy into it, but also take the time to feel the bad days. Take the time to learn how to let the good and bad coexist.”
Talk about T1D. Take advantage of resources. Connect with others online and in person. Give yourself grace. We can all learn a thing or two from Stover!
“We were never meant to do the job of the pancreas. Everyone carries the weight of T1D differently; everyone processes and grieves differently. There are going to be bad days, and the bad days should NEVER be punished. Grace, compassion, and a safe space to authentically be a person living with T1D will have a much better outcome. The only party at fault is the immune system that attacked the wrong thing.”
-Jessie Stover
