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12 Things You'll Only Understand If You Grew Up With Diabetes

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If you had diabetes as a kid, you’re part of an exclusive club. This club knows what it’s like to count carbs in between classes and spend more time with the school nurse in a week than most kids spend in a year. You know what it’s like to have your food choices scrutinized and what it’s like to bring medical supplies to a sleepover. At the same time, you also learn how to be responsible for your body and reach a level of maturity that surpasses your peers.

Type 1 diabetes, an autoimmune condition that results in the pancreas not  producing insulin, typically develops in children and teens. The peak age at diagnosis is typically 14 years old. Type 2 diabetes is caused by genetics and lifestyle factors and most often appears after age 45, but it is becoming more common in children. A 2012 study found that the number of people under age 20 with type 2 diabetes could increase by 49% by 2050.

If you grew up with diabetes, you certainly aren’t alone. To discover what life is really like when you’re a kid with diabetes, we asked our Mighty community to share a frustrating, funny, or ridiculous aspect of being a kid with diabetes that only others with diabetes will understand. While it may have seemed like you were the only kid experiencing these challenges, let this list show you that there were many others out there dealing with the same things.

Here’s what our Mighty community said:

1. You always had to carry a bag with you.

Diabetes doesn’t care that you’re out with friends, at school or anywhere outside your “home base.” You still need to manage your blood sugar no matter where you are. That means you need to carry all your supplies (insulin, test strips, snacks, CGM, smartphone, etc.) with you everywhere — so you can’t exactly head out for the day with nothing but your pockets. Long before most of their peers start carrying a purse or bag everywhere they go, kids with diabetes must become accustomed to carrying their diabetes supplies with them. Like Shifra K., you might have become known as that kid who always has space to hold things for you!

“Carrying a school bag heavier than myself, given all the school books plus the diabetes stuff. [Also] always having a bag with me no matter where I go. I ended up carrying lots of stuff for my friends.” — Shifra K.

2. You were given different snacks than your friends.

Many people’s only “understanding” about diabetes is that “sugar = bad,” so when it came time for birthday treats or a snack at summer camp, you might have been given a “sugar-free” alternative. However, depending on your type of diabetes and how you manage it, you may not even need to avoid sugary snacks. For example, if you have type 1 diabetes (which is not caused by eating a high-sugar diet), you could adjust your insulin dosage to accommodate an occasional cupcake or cookie. It’s frustrating, especially when you’re a kid, for other people who aren’t educated about diabetes make assumptions about what you can and cannot eat.

“When parents at school birthdays brought you specific snacks to eat instead of what the whole class was having. I loved the gesture; however, if the whole class had chocolate strawberries and I got a granola bar, I wasn’t too thrilled. And I had to eat it out of respect. Eventually, as I have gotten older, I politely educate them and say how I can have the same snacks as others as long as I dose for it. It’s more lifestyle rather than diabetes. (I am type 1 diabetic with a pump, service dog, and CGM. This answer could vary for T2’s and some T1’s that are on diets.)” — Ava H.

3. People were suspicious of your insulin pump or other diabetes supplies.

People generally aren’t accustomed to seeing kids with medical supplies, so they might think you’re using a cell phone or other electronic device when you’re actually just managing your diabetes. If you used needles when you were a kid, you likely were especially subject to some strange looks and judgment.

“When I was around 5 I went into a restaurant with my mom. These two women start looking at me and say in a passive aggressive way something about how spoiled I am that I have a cell phone on me (this was early 2000’s). My mom turns coolly around and tells them it is an insulin pump and without it I would die. They then start apologizing and saying how sorry they are and how they feel bad for me.” — Shifra K.

4. You knew more about your body than most kids your age.

Diabetes forces you to understand complex body systems and organs other kids may not even know exist. You had to learn about blood glucose, carbohydrates, hypoglycemia, and measurements like HbA1C, at a time when most kids (and even many adults!) don’t know what those words mean. Give yourself a pat on the back for being so informed about how your body works.

“Knowing where your pancreas is! (In general knowing more biology and nutrition than the average kid.) I was once at a birthday party and there was a magician. As an activity he starts asking us to point to our various body parts that an average 6-year-old would know (where is your nose, mouth, arm, fingers, hair etc.) then to throw everyone off he asks us to point to our pancreas. I proudly point and say here it is! No one else knows and he asks how I know. I told him I have diabetes.” — Shifra K.

5. People thought anything labeled “sugar-free” was safe for you to eat.

Again, many people assume anything with sugar is off-limits for a kid with diabetes, and think any food item labeled “sugar-free” is safe. Unfortunately, that’s not quite how it works. Just because an item doesn’t have any added sugar doesn’t mean it won’t affect your blood glucose. Your insulin levels are also affected by the amount of carbohydrates in the item, your activity level, what else you’ve eaten that day… it’s not as simple as just going “sugar-free.”

“One thing is that people only want you to eat ‘sugar free’ versions of everything, not taking into account that some of those have the same or more carbs in them.” — Amanda T.

6. You constantly had to explain what diabetes is.

Although pretty much everyone has heard of diabetes, not everyone really understands what it’s all about. You likely got very good at explaining what diabetes is and how you manage it, to both adults and other kids. And like Shifra K. below, perhaps you found that kids were more open and accepting of your differences than the adults were.

“Having to explain diabetes so many times and having kids more accepting of your differences than adults.” — Shifra K.

7. You might not have felt like there were other people who understood what you were going through.

Diabetes can be a lonely experience if you don’t know anyone else with the condition. Like Katherine W. below, it might have felt like your parents got a lot of support from their peers, while you felt a bit more alone. Hopefully, as an adult, you’ve been able to meet more people with diabetes and can see that you weren’t the only kid going through it.

“Might not be a universal thing, but the most frustrating and ridiculous thing that had a profound impact on me when I was young was the fact that there was more support for my parents than there was for me. The support groups aimed at kids seemed to be more group playtime for the kids and support for the adults. It grew more frustrating through teen years where I was too old to play with the kids, but the adult conversation still centered around parenting a diabetic rather than the diabetics themselves. It became very disheartening and I eventually started seeing myself as more a problem for my parents rather than someone who was having problems herself.” — Katherine W.

8. You had a parent or adult watching over you most of the time.

Speaking of parents… Knowing your child has an illness that can be life-threatening if not managed properly is no doubt a scary and helpless feeling, so your parents may have taken an extremely active role in your day-to-day care. Perhaps they checked your levels for you, asked you to give them updates, or helped you decide what to eat. And when your parent couldn’t be with you, you may have had another adult, like a teacher or school nurse, taking over that role.

“Having a parent around/on call all the time!” — Shifra K.

9. Some people may not have trusted your judgment about your own health because of your age.

When a kid is diagnosed with diabetes, they learn how to manage their health — because they have to. But adults still sometimes assume that any kid is too young to really understand a complex condition like diabetes. If adults in your life questioned your knowledge about diabetes and your ability to care for yourself, you might relate to Taylor J. below:

“Constantly hearing people say things like: ‘That has sugar in it, you can’t eat that!’ ‘So you have diabetes because your parents let you eat too much sugar, right?’ And then assuming that because I was a child that I was still wrong when I tried to educate them and tell them otherwise.” — Taylor J.

10. You got really good at math.

Managing diabetes requires constant math. You need to figure out how many carbohydrates are in your food, calculate your insulin doses, and take into account other factors like past doses and the time of day. In short, you’re dealing with numbers all day long, while most other kids saved math for school and homework.

“Knowing that you will actually use the math you learn at school, or knowing how to calculate certain things before you learn them in school.” — Shifra K.

11. Other kids were jealous of your ability to treat your disease with candy.

If you have type 1 diabetes, then you know that a quick way to raise blood sugar that has dropped too low is to eat candy or fruit juice. Understandably, that can seem pretty cool to kids who love sweets.

“Being in school and having to take a break from class to eat chocolate because my blood was low. All the other kids thinking I had the best illness because it was treated with sweets.” — Corey Q.

12. You had to grow up quickly.

Let’s face it, dealing with a life-threatening illness from a young age changes you. While other kids were scarfing down their lunch and running off to play, you had to check your blood glucose levels before eating and calculate how much insulin to take. You had to take on a lot more responsibility than most kids your age, and you had to live knowing that your health was precarious.

“Having to grow up quickly and not to always be a kid, because you have to become more responsible a lot quicker than kids without diabetes.” — Lilly H.

For more insight into life with diabetes, check out these stories by our Mighty community:

Originally published: July 25, 2019
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