Living with Diabetes: Spencer’s Story of Self-Advocacy
November is Diabetes Awareness Month
Living with diabetes isn’t just about checking blood sugar and taking insulin; it’s also about learning to speak up for your needs, managing your own care, and sometimes educating others who just don’t get it.
This Diabetes Awareness Month, we talked with Spencer Bleyl, a 9th grader, mountain biker, gamer, skier, and self-advocate who’s been living with type 1 diabetes since he was 3 years old. Spencer is also on the Utah Parent Center Youth Advisory Board and serves as the social media specialist.
Here’s what he had to say about life with diabetes, what self-advocacy looks like, and how you can take charge of your health, even when it’s hard.
Getting to Know Spencer
Q: Tell us a little about yourself.
Hi! I’m Spencer Bleyl. I’m in 9th grade, and I’ve had diabetes for 11 years now. I love mountain biking, playing games, skiing, and hanging out with my friends.
Q: What does the word “diabetes” mean to you?
To me, it means another way to take care of yourself. It’s about always watching your blood sugar, taking shots, counting carbs, and dealing with a lot of mood swings.
Q: How has it shaped your daily routine?
Honestly, I don’t know anything different. I’ve lived with diabetes since I was 3 years old, so it’s just part of my life.
A Day in the Life with Diabetes
Q: What’s a typical day managing diabetes look like?
I wake up, check my insulin and pump levels, and get ready for school. I hang with friends at lunch, but I usually wait to eat until I’m home because school food is so high in carbs and just…gross. The rest of the day, I keep an eye on my blood sugar, make sure my pump is charged, and dose when I need to.
Q: How do you know when your blood sugar is off?
When I’m high, I get emotional and cranky. When I’m low, I feel shaky, weak, and kind of goofy.
Q: What’s the hardest part?
It’s frustrating when I miss out on stuff because I don’t feel good. It can take hours to get back to normal. Some teachers don’t understand, but my friends help a lot.
Speaking Up for Your Needs
Q: What does self-advocacy mean to you?
It means helping people understand what I need to survive.
Q: Can you share a time you advocated for yourself?
This year, my school had a new no-phone policy. But I need my phone for my diabetes, it’s how I dose and track my blood sugar. I talked to the vice principal and explained my situation. We came up with a solution so I can keep my phone with me for medical reasons. That felt really good.
Q: What made that easier to do?
Knowing I could ask for what I needed, and that I had the right to.
Q: Who do you turn to for support?
Mostly my parents, but sometimes my friends too.
Advice for Other Teens with Diabetes
“Don’t be afraid to make friends and talk to others who have diabetes. They get it, and they can help you.”
What Parents (and Adults) Should Know
Q: How can parents or caregivers support you better?
Let us learn to take care of it ourselves. Don’t take over everything. (Great resources can be found at https://utahparentcenter.org/publications/infosheets/empowering-parents-transition/
Q: What helps when you’re having a tough day?
Just being there and understanding what’s going on.
Q: What doesn’t help?
When adults ask, “Are you okay?” every time they hear a beep. Like—yeah, I know when I’m high or low. I’m handling it.
Q: What’s one thing you wish adults understood?
Being a teen is already hard. Diabetes adds more mood swings and more stress.
Looking to the Future
Q: How has self-advocating helped you in other areas of life?
It’s helped me find my voice. I can tell people what I need and how I feel. I feel more confident speaking up.
Q: What gives you hope about the future of diabetes care?
Technology is getting better all the time. My hope is that one day, no one will have to deal with this. But until then, we can help each other out.
Utah Resources for Teens with Diabetes
If you live in Utah and are looking for support, education, or community, here are some resources to check out:
Utah Diabetes and Endocrinology Center: Expert care for kids, teens, and adults with diabetes.
healthcare.utah.edu/diabetes
Utah Parent Center (UPC): Youth leadership programs, disability advocacy, and parent support (Spencer is on their Youth Advisory Board)
utahparentcenter.org
ADA Camp UTADA (Summer Camp for Youth with Diabetes): A fun and safe space to meet other teens with diabetes.
diabetes.org → Search “Camp UTADA”
Breakthrough T1D: Events, meetups, and resources for people with Type 1 diabetes.
Breakthrough T1D
Beyond Type 1 App: A free app to connect with other teens and young adults with diabetes.
beyondtype1.org/app
Final Thoughts from Spencer
“I know it’s hard, but the more you understand your diabetes and speak up, the easier it gets. You’ve got this—and you’re not alone.”
Want more stories like this? Follow the Utah Parent Center Youth Advisory Board on Instagram for real voices, resources, and youth-led advocacy.
