Tess’s story: Diabetes is a daily reality

Tess, who has type 1 diabetes, when she was first diagnosed
Tess, around the time she was diagnosed with type 1 diabetes [PHOTOS COURTESY OF THE KEELE FAMILY]
I was 4 years old when I was first diagnosed with type 1 diabetes. For a while before that, I had some of the classic symptoms but nobody recognized them. I was drinking water constantly, not eating much food and lost about 30 pounds. One hot summer day, I passed out on the playground. My mom took me to the hospital and they sent me right to Boston Children’s Hospital. The staff checked my blood sugar level — it was supposed to be about 100 and it was 859. I spent a week in the hospital.

That was 14 years ago. I’m a senior in high school now, but I distinctly remember my mom crying and not understanding why. The fact that I had diabetes didn’t feel real until I had my first insulin injection. I was in my hospital bed, a nurse was trying to give me a shot and I freaked out. When I got a little older, I realized the disease wasn’t going to go away. By the time I was 8, I was giving myself my own insulin injections.

Learning to live with diabetes

Type 1 diabetes is referred to as a chronic condition. The pancreas stops producing insulin and your body can’t process the sugar in your blood. At first, I was on a very strict diet and had to eat every two to three hours. My parents have never been big planners and suddenly they had to plan every meal and keep track of every carb I ate. They decided that the whole family would eat with me. We all switched to whole wheat pasta and whole milk. Because fat helped keep my blood sugar levels stable, we all had ice cream at night.

Tess, who has type 1 diabetes, poses for a school picture

Over the years, I’ve had to deal with a lot of misconceptions about diabetes. Some of the kids in my kindergarten thought they could catch diabetes from me. My diabetes educator, Kristen Rice, gave us the book, “Rufus Comes Home,” about a bear that has diabetes. The school nurse came in and read the book out loud to my class. That helped the kids understand, but it also made some of them think they were my nurse. They’d say things like, “Tess, do you have your insulin kit?” or “Tess needs to go to the front of the lunch line.”

People assume I have type 2 diabetes and that I was once obese or ate too much sugar as a kid. No one ever wanted to give me candy, even though sometimes, if my blood sugar was low, I actually needed it.

Now I have an insulin pump. I wear it on my upper arm and it gives me insulin all day long. It’s more convenient, I don’t have to carry around as many supplies or give myself injections, but it’s also very visible. People notice the pump on my arm, or they see me checking my blood sugar and ask about it. With my friends, they just don’t care. I don’t worry about them judging me. They know I’ve got to do this to stay healthy.

On the court

I’ve always been a very athletic person. I’m a starter on my school’s basketball team. It took a while for my coach to understand why I sometimes couldn’t go back in three minutes after coming off the court. Sometimes he’ll ask me to go back in and I have to tell him I need more rest. We’re at a good point now and he realizes I’ll let him know when I’m ready.

Tess, who has type 1 diabetes, passes the basketball during a game

Diabetes can make things more complicated, but I’ve discovered that as long as I stay on top of my blood sugar and make sure it doesn’t go too high or too low, it’s easy to manage. A bunch of my friends and I climbed Mt. Washington this summer and my blood sugar was fine.

I still have regular checkups at Boston Children’s. I live in Western Massachusetts, so it takes a lot to get there: missing school, finding parking, etc. But I love how the nurses there are talkative and kind. They make me feel like a person, not just a patient. The last time I was there, the nutritionist and I talked about Dunkin’ Donuts for 20 minutes. For me, diabetes is a daily reality, so it’s awesome when someone on my care team treats it that way, because I know they get it.

Learn more about the Diabetes Program at Boston Children’s.