Diabeloop: How were you diagnosed with type 1 diabetes? What were the signs that alerted your family?
Gabrielle: I was really tired. One night my mom slept next to me, and she noticed that I was drinking a lot of water. I got up to go to the bathroom seven times in the same night. I also got really skinny, and I was grumpy a lot.
D: What was your reaction when you found out that you had type 1 diabetes?
G: When I was first diagnosed, I really didn’t understand what was happening to me. I just saw my mom start crying in the hospital room when the doctors said that I had Type 1 diabetes. At first I thought diabetes was simple, but I found out pretty fast that it’s a little more complicated than just getting shots. After being diagnosed, I stayed in the hospital for ten days.
D: What was it like to go home after the hospital?
G: I found out I had Type 1 diabetes during vacation when I was in fourth grade. My dad did a lot of research about Type 1 diabetes so the whole family would understand it better, and he explained what it is in simple language. I waited a little while before going back to school. I found out I was T1D in October. In November, I got a continuous glucose monitor, and nine months later, in July, I got an insulin pump.
D: How did your family react to your diabetes?
G: As soon as I was diagnosed with Type 1 diabetes, my dad found out everything he could about it, and he really helped me. My parents react very differently in some situations. My mom is really scared of hypoglycemia. It freaks her out and she panics. My dad gets tense when my blood sugar gets too high, and he asks himself, “Why isn’t it going down???” They don’t always realize it, but my family stresses me out sometimes. Once, I changed my insulin pump and it wasn’t working and my grandma, who was sitting next to me, kept asking me, “Why isn’t it working? Why isn’t it working?”
D: Once you started school again, how did you manage your diabetes?
G: My parents made fact sheets to explain diabetes to my teachers, and let them know what to do in an emergency. I’ve always managed my diabetes alone at school. At first, I was using pens and I couldn’t “do my insulin” alone. I’d tell myself, “Okay, on the count of three: one, two…” but I just couldn’t inject myself. I had a real mental block about injections. I was on a long-acting + rapid-acting insulin regimen. The long-acting insulin was thicker and it was really hard to do. Back then I had a nanny taking care of me, and a private nurse would stop by every day at noon to inject my insulin.
D: Did your friends ask you about it?
G: Not that much at first. When I went back to school, I decided to give an oral report to explain everything to my classmates:
- What is diabetes?
- Why do I have it?
- I brought up the clichés and stereotypes (like “Did you get diabetes because you ate too much sugar?” for example).
- Is diabetes contagious?
- How do you treat it?
- I told them what could happen if I have an emergency in class.
- I explained that if my phone rings or if I eat candy during class, it’s normal ?
After that, my friends asked me a lot of questions about my diabetes management devices.
D: What did you tell them?
G: When I answer my friends’ questions, I always try to put myself in their shoes, because explaining diabetes to them isn’t the same as talking about it with my diabetologist. I have to use simple language. I told them that:
- The glucose sensor is a little device that I stick on my skin to read the level of sugar in my blood.
- The insulin pump is what delivers the insulin and replaces the part of my pancreas that’s been “attacked” by antibodies.
- I use my phone and my watch for practical reasons. The watch is less apparent, it doesn’t get noticed as much as a phone that can ring at any moment.
D: Has anyone ever made fun of you or teased you about your diabetes at school?
G: At school, whenever someone says, “You’re diabetic, you’re diabetic,” I say, “I’m diabetic, it’s treatable. You’re stupid, and there’s no treatment for that!” ?
D: At lunchtime in the cafeteria, how do you calculate your insulin dose?
G: Sometimes my friends ask me, “Why do you count before eating?” So I explain that there’s sugar in my meal. It has to be able to enter my bloodstream, but also exit it. I have to take insulin so that it can enter my cells and give them energy. Usually, I’m the one who counts my carbs before a meal (even though I’m not exactly a math genius ?), but at home my parents do it for me so I can have a break. At school, sometimes I forget to take my insulin and my friends remind me, “Hey Gaby, did you do that thing with your phone?” I’m lucky I have super supportive friends.
D : What about when you’re in gym class, how do you manage your blood sugar then?
G: I’m not the only kid in school who has Type 1 diabetes. I always have a snack before I go to gym, to make sure my blood sugar doesn’t get too low. I check my blood sugar before and after playing sports. Once I didn’t have anything to raise my blood sugar with during gym class, I’d left it all in my bag in my locker. I asked my teacher if he had anything I could eat that would help. He gave me two muffins. That day, I only exercised for 30 minutes. If he hadn’t had anything, I would have asked someone else for sugar, or gone to the office or to see the school nurse. In that kind of situation I don’t feel good, I’m a little “out of it,” but I don’t get too worried.
D: How would you explain diabetes to a little kid?
G: When I was diagnosed with type 1 diabetes, I had to explain it to my little sister who was only six. At first, she didn’t really understand. I told her that diabetes is a problem with the pancreas. It’s an organ in the belly that gets attacked by the cells in charge of protecting my body, because some of them have been modified to think that my pancreas is an enemy. Since my pancreas doesn’t work anymore, I have to put insulin inside of me another way. Insulin is a key that opens the door to our muscles and vital organs so that sugar can get into them and give them energy. When there’s no insulin, there’s no key, and the sugar can’t get into the cells. It stays in the blood, and makes me tired.
Now my little sister Pauline understands really, really well. She helps me a lot by preparing my blood glucose tests or taking some sugar with her when we go out for a walk. She’s the best! Sometimes she says, “Gaby, is your blood sugar super-high? Because you’re being super-annoying!” ?
D: Can you tell us about some of your experiences?
G: I’ve had a lot of bad luck at celebrations and birthday parties…
When I go to birthday parties, I love eating candy and I usually don’t take a bolus. I take insulin beforehand, but I can’t stop myself from eating, and I don’t take more because I don’t want my parents to see that I ate way too much candy and took a lot of units.
Another time, I was invited to a slumber party at a friend’s house. That night, we went out for fast food and I heard my insulin pump go “beeeeep!” I had to go home and change my pump before going back to my friend’s house. And since when it rains, it pours, when I got back to my friend’s house I noticed that my glucose sensor was missing, and I had to go home again. That night I ended up in a lousy mood, I was so tired of it all.
There’s also a book my parents got recently, “Mon diabète, mes parents et moi” [My Diabetes, my Parents, and Me]1. It’s a collection of stories from the life of a family with a T1D kid, and it’s really funny. It feels good to laugh, and to see that we’re all dealing with the same situations.
D: If you had to tell us a secret, what would it be?
G: I manage my diabetes well, but it’s harder to manage my feelings. Sometimes I just get sick of having diabetes and I feel depressed. Every once in a while, I think to myself, “I don’t care about my stupid diabetes, I’m going to just ignore it and do what I want.” But my parents say that if I ever start ignoring my diabetes, they’ll kill me! ? Sometimes I feel guilty too. Once, on the day of his birthday party, my dad said, “Gaby, come test your blood sugar.” I feel bad when I see my dad always keeping an eye on my diabetes. He can’t even enjoy his birthday party because of me. Lots of times, I’ve seen my dad stay up until all hours to read more about diabetes and look for solutions.
D: If, for once in your life, you could talk to your diabetes, what would you say?
G: I’d say, “GET LOST!” There’s no point saying anything else, it doesn’t understand anything and has no conscience.
D: If you could give ONE tip to other preteens like you who are living with diabetes, what would you say?
G: Life doesn’t revolve around your diabetes; diabetes revolves around your life!