Emmy and her family at a walk for the Juvenile Diabetes Research Foundation.
Photo: Heather Mousourakis.
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Diabetes, An Invisible Disability
An Interview with Emmy Mousourakis by Allison Custer
Over 37 million people in the U.S. have diabetes, and 1 in 5 don’t know they have it! Although many people know or have at least heard of diabetes before, they often have a superficial understanding of it, and there are numerous misconceptions about the disease.
Due to misconceptions about diabetes, it has become stigmatized, and commonly joked about. Even the popular Netflix show, Wednesday, jokes about diabetes. Wednesday visits a shop selling fudge, referring to it as, “diabetes in a box.” Jokes like these are disrespectful as diabetes is genetic and cannot be caused by consuming too much sugar.
“Diabetes isn’t something to joke about,” said Emmy Mousourakis, a student at Medina with diabetes. “And the jokes aren’t funny. You wouldn’t make jokes like that about asthma or cancer.”
In a conversation after school, Emmy discussed how diabetes has affected her life since getting diagnosed. The following has been edited and condensed for clarity.
Emmy’s Homecoming pictures taken by Heather Mousourakis. Emmy’s CGM can be seen on her right arm.
What’s an average day like with diabetes?
For most type one diabetics, you wake up, check your blood sugar, give insulin, eat, then check your blood sugar, give insulin, eat lunch, then check your blood sugar, give insulin, eat dinner. Usually you eat a snack and give bolus, a corrective insulin dose, before bed. I have two devices, my CGM (continuous glucose monitor) which reads my blood sugar every five minutes, so I don’t have to do as many finger pricks. I have an insulin pump with a catheter that goes into my skin and gives me insulin automatically, and it can give manual boluses. But you can’t really set a schedule with diabetes, because it’s so chaotic.
How and when were you diagnosed?
I was diagnosed Wednesday April 22, 2020. I woke up that morning, my speech was slurred, my pupils were dilated, and I was barely conscious, so my parents called an ambulance. I was in the hospital for five days. The doctors didn’t know if I’d make it out alive. When I was finally getting better, my mom asked if I’d heard the doctors and told me I had diabetes.
What was your reaction to finding out?
I was devastated. Not many people are very educated about diabetes, and I wasn’t either. When I was little, I avoided eating too much sugar because I thought, “I don’t want to get diabetes,” and it just happened, so it was terrifying.
Do you think if you knew more about diabetes beforehand and people talked about it more it would’ve helped you through that experience?
Absolutely!, I was diagnosed right smack dab in the middle of Covid, so I felt alone for a long time. If people talked about diabetes more, it would’ve changed my life. I’m sure we would’ve known sooner, and I wouldn’t have had such a life-threatening experience.
Do you think there’s a stigma surrounding diabetes?
I think the main ones are people think it’s caused by weight, which it isn’t. Type one diabetes is genetic. The second is it’s caused by diet or eating too much sugar, and probably the most annoying one is we can’t eat certain things, like sugar, which isn’t true. We can have anything we want, we just have to give corrective insulin for it.
I’ve noticed you’re big on educating people and advocating for diabetics, you have an Instagram account for that purpose, is there anything you want to say about educating people?
If you don’t know, don’t make assumptions. If you know someone’s open about their diabetes, ask them. That’s an amazing way to show you care, because you’re trying to learn more about them.
If someone wanted to help but wasn’t sure how, what would you say to them?
There’s a ton of wonderful advocacy websites. My favorite is the Juvenile Diabetes Research Foundation. The American Diabetes Association is another great one. If you wanna first hand source, talk to a diabetic, and just be there for them. If you notice them struggling, that’s a time to be like, “Hey, I’m here for you.”
Any final thoughts?
Not all diabetics are the same. I’m only speaking for myself. We all have different viewpoints and experiences, so every diabetic is unique. We’re like little snowflakes!
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