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The Problematic Misconceptions Surrounding Childhood Diabetes

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November is National Diabetes Awareness Month…not that many people know.

Fact is that if you’re not battling the disease or have someone on Facebook posting about it, you probably think that its only November. However, my Facebook is filled with posts daily about people sharing their experiences or sharing articles and blogs about what it’s really like to live like this condition.

I have been a type 1 diabetic for over 18 years.

I was only 4 when I got the diagnosis that changed my life.

Being diagnosed can feel like a very alienating thing. Suddenly everyone thinks they know what you can and cannot eat. My parents were educated, but complete strangers suddenly thought that they had the right to comment on how I was managing my disease.

In elementary school I had to sit inside for recess to eat my morning snack while the other kids got to go outside and play.

I hated it. It just made it clear to everyone that I was different than the others.

First day of school for me included instructions for my teacher for emergencies and my box. In every classroom I was in I had to bring this Tupperware box with a glucometer, emergency sugar and more instructions in case there was an uninformed teacher. I was the only diabetic in the whole school and it was painfully obvious that I stuck out.

I hated my diabetes.

My parents had divorced the year after I was diagnosed and a part of me always thought that my diagnosis was the catalyst. Not only did I hate the disease itself but I hated how it made me different. I was the only kid not invited to certain people’s birthday parties because their parents were scared of me. I remember this one girl I was friends with in the second grade came up to me and told me that I wasn’t invited because her mom didn’t know if I could eat anything. I ended up never inviting her to my parties because my mom had tried to call them and explain my disease, but the other mom had just said no.

Another memorable occasion was when I was in the fifth grade. We had this program at school where there was chocolate milk for sale at morning recess. So I had bought two for a dollar and gone out onto the playground looking for my friends. This one kid was looking to trade his chips for a chocolate milk and I offered to switch him mine. To this day I know exactly where I was standing and which direction I was facing when he said to me, “Ew…No, I don’t want to switch with you – I’ll catch your diabetes.” I don’t remember my exact reaction. It makes me mad now thinking about it but I think back then it would have only made me sad. Such ignorance I had not encountered before. I think I might have cried, not knowing that I would have to face oblivious people for the rest of my life.

My best friend is diabetic. My city has an amazing support system that brings all the diabetic children together and provides activities every couple of months. I met my best friend on one of these trips when we were in the seventh grade. She was diagnosed at 13. Having someone so close to you that can relate what you’re going through, especially through high school, made all the difference. I wasn’t alone in this fight to educate everyone around me.

In Canada there is also an amazing thing called D-Camps. Where hundreds of individuals with diabetes get to play and forget about the hardships of this disease. This is the place where I learned the confidence to do my own injections when I was 8. Where I learned that I wasn’t alone and that all these other kids were going through the same things I was. I strongly can say that it changed my life. Looking through my facebook friends list more than half are diabetics that I’ve met through camp.

Being a type 1 diabetic people are either curious or ignorant towards you. The types of questions I (and every other diabetic) get range from these:

“Do you have the bad kind?”

“You have diabetes but you’re not that fat.”

“Woah, you got it when you were that young? Your parents must have fed you lots of candy as a baby.”

“Can you eat that? Are you sure you should eat that? Oh, but you can’t eat sugar right?”

“Yeah my grandpa had diabetes but he got his foot amputated.”

“I know someone who had diabetes but they died.”

“I don’t know how you can take that many needles, I couldn’t do it.”

“So if your blood sugar is low you need insulin, right?”

“Wow, I’m so glad I’m not diabetic.”

“If you just exercised more you would be cured.”

“Insulin is a cure, right?”

“I heard of this new diet that can cure diabetes.”

Also with an insulin pump you get a lot of:

“Is that a pager?”

“Can you (insert adjective) with that on?”

“Can you take it off?”

“So that’s like attached to you all the time?”

“Can I push the buttons?”

These are all things people have actually said to me.

A lot of these misconceptions come with there not being enough knowledge being broadcasted about the different types of diabetes. If you were to ask anyone on the street what they think of when you say “diabetes” they would, more than likely, describe an aspect of type 2 diabetes. The media doesn’t do anything to help this either. They just force stereotypes onto both types of diabetes that just make us frustrated.

So, what is type 1 diabetes really like for me?

It’s waking up in a cold sweat at 2 a.m. because I didn’t account for my stress dropping my sugar when I gave myself insulin for my bedtime snack.

It’s sitting on the kitchen floor while your little brother hands you juice because you feel so shaky you don’t know if you could stand to pour a glass.

It’s bringing juice boxes to work, to hide in your car, to put in your purse just in case.

It’s when an infusion site goes bad and your sugar jumps to 30 and you’re so nauseous that you call in sick to work.

It’s fearing for your A1C results, even though you’ve done the best you can. But you know your doctor will be disappointed in it or mention how if you let it rise any further, you could lose all government funding for supplies.

It’s being so scared to graduate college because you won’t be under your parent’s benefits and you don’t know how you’re going to pay for the supplies that keep you alive.

It’s people not knowing how hard you’re fighting daily, but think that their advice and comments are needed.

Constant doctor appointments, blood work, needles, blood, calculating carbs, making decisions that can alter your health so drastically you could be hospitalized.

It’s how fast every diabetic child has had to grow up since they have been diagnosed.

However diabetes for me is also:

Meeting some of my best friends.

Experiencing some incredible things such as meeting celebrities, watching the sunrise in Algonquin park and seeing the smile on a kids face as they give their first injection by themselves.

Developing leadership skills.

Becoming an advocate for educating people about the disease.

Knowing that I am part of such a strong support system that all diabetes I’ve met seem to create.

So get educated! Donate! Go be respectful and ask a diabetic questions!

The organizations I’ve grown up supporting are linked below. I highly recommended checking them out.

1. Canadian Diabetes Association 

2. JDRF

3. D Camps

Getty Image by Maya23K

Originally published: August 28, 2018
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