A T1D Story: My Journey with Type 1 Diabetes

February 7, 2017

Am I part of the cure? Or am I part of the disease?

I don’t like talking about this. I don’t like people assuming things or feeling sorry for me. A lot of times I don’t waste my breath because I grew tired of the ignorance and assumption a long time ago. But, this month marks the ten year anniversary of when I was diagnosed with Type 1 Diabetes.

I rarely pull this card out of my deck. I never want the attention. I usually wait until you find me in a situation where I’m performing the duties of a pancreas and I just have to tell you that I’m not a drug addict. But I think it’s time I finally talked about this openly. I think it’s time that instead of being quiet about it, I shared something that is simply a part of me—something that is both a strength and a weakness.

I think it’s finally time I said:

I have a disease. I am a Type 1 Diabetic. Some days, this is my strength and some days I can’t win, and it is a weakness. But, this is only a piece of my puzzle, and it does not define me.

The Disease.

29.1 Million people in the United States alone have diabetes; I am one of the 5% that have Type 1. I am part of a strong and amazing 5% of people that are diagnosed with this disease. An autoimmune disease that is often ignored and assumed to have a certain definition or meaning. There aren’t a lot of people out there that know the difference, and in turn there are a lot of people out there who assume they know. I’m here to tell you that it’s not the same thing or what you think it is.

The Assumption.

There is a common misconception with diabetes. This is a HUGE pet peeve of mine. There are actually two types of diabetes, Type 1 and Type 2. I have Type 1, and no…I did not get it because I ate too many doughnuts, or consumed candy every chance I got. As far as I’m concerned, that diagnosis is a cavity. In fact, I actually need sugar, glucose, carbohydrates. Type 2 Diabetes and Type 1 Diabetes are not the same thing, they are uniquely different.

Type 1:

For some reason, my body stopped producing insulin, this could have been caused by a simple cold or a multi-symptom stomach virus, I will never know. But one day, my body thought it needed to go to battle for this and so it called in my immune system. Who in turn, accidentally killed the insulin-producing cells in my pancreas.

I was suddenly left without the part that produces the thing that helps the body break down nutrients. They literally attacked their own men. They prepared for battle, took a wrong turn, and pushed a wrong button. I personally, did nothing wrong. Where was Osmosis Jones when I needed him?!

The unwanted battle, left me the driver, with the manual responsibility of being my own pancreas. While most of you eat on auto drive and let the insulin in your pancreas distribute all the nutrients automatically, I on the other end am driving on manual. I have to count everything I eat and mathematically calculate my insulin dosage. I’m basically taking a lifelong math test while on a never ending diet. It’s super great!

Anyways, insulin distributes all the nutrients in your body, especially carbohydrates, which turn into sugar. This is where testing your sugar regularly, comes into play. To control my Type 1 Diabetes, I usually eat 45 carbs at each meal, and with that meal I take an insulin shot. I test my sugar and give myself a shot four times a day. Shocked? I know. Me too.

It’s basically like you brushing your teeth before bed. You do this as a habit, and it’s not painful unless you punch your mouth by running into a tooth with the tooth brush…which I will admit I have done before. But, all and all, my routine is not that different than yours. I just have to manually do what your body does automatically. The insulin part, not the toothbrush.

Type 2:

Type 2 Diabetes is the most common form of diabetes. With Type 2, your body is still producing insulin, but it isn’t using it properly. This is better known as insulin resistance, so your body thinks it needs to continue to make more insulin. It makes too much insulin sometimes and can’t keep up with your body. Sometimes this is diagnosed by weight issues, and sometimes this is a result of family history and some unfortunate DNA strands.

If you’ve ever heard of someone being pre-diabetic, they probably were at risk for getting Type 2 Diabetes. You can use exercise to get in better shape so that the insulin starts to become less resistant and take pills to help you control your Type 2 diabetes, but unfortunately, that’s not how it works for Type 1.

Unfortunate Reactions.

Throughout my ten years of having Type 1 Diabetes be a part of me, I have received some interesting and hurtful reactions to my disease. I want to take a moment to list these out, and I have no doubt that some of you reading this post, while learning a thing or two about this disease, actually had some of these reactions. That’s okay. This is why I’m writing about this. It doesn’t make you a bad person to react this way, it just makes you slightly ignorant. Sorry not sorry. And that’s okay, because you learned something, so now you’re not.

Let me now recount some of the reactions I got when I was simply trying to share this piece of myself with someone:

  • “Oh my grandma has that.” No actually, she probably has the other one. “Same thing.” No. they’re not the same.
  • “You have to do what?! EWWWWWW!” (I think that one hurt the most.)
  • “God. That. Sucks.”
  • “That. Sucks.”
  • “Oh my God—that’s my worst fear.”
  • “Aw man, I’m so sorry.”
  • *insert another gross immature reaction to me putting life supply in my body…my body, not their body, my body*

See why it’s so hard to share something with ignorant people?

You wouldn’t say these things to a cancer patient or a little boy with autism. Why say that to me about my disease? About the burden that I carry? What makes my disease so much more disgusting? Because sometimes people are self-absorbed. What makes this part of me, all of me to you? Because sometimes people are single minded. Why react in such a way that automatically assumes that I am in an unfortunate situation? Because sometimes society tells us that it would suck. Because sometimes, saying sorry is the best thing someone can say, and that is okay. 

I will say though, there have been very few people that have reacted to me sharing this piece of myself with them in a very endearing way. Very lovingly and encouraging. And I am very grateful for them. Most of you know who you are, so thank you.

Common Myths.

I also want to address some common myths and phrases I’ve gotten over the years…

You can’t eat that!

Actually, yes I can. I can eat anything you can eat. We both have a pancreas. I just have to manually do what your pancreas is doing automatically, when we both eat that same piece of chocolate cake. If I choose not to eat that, it’s either because I don’t want to or it’s too sweet—as in my taste buds find it too sweet, not my pancreas.

My eating habits have been trained to think in portion size and mathematical calculation for ten years so far. So, while I might choose to eat a slice of cake, I’m also not going to choose to eat the entire cake. Counting carbs is literally my diet, it’s the X factor in my mathematical equation every time I eat. So, yeah go carbs! And, I’m probably not going to join you on a diet either because I’m already on a life long diet. But, thanks for being so concerned with what I put in my body. I’ll continue to take care of my own body while you do the same with yours.

So if you exercise, it’ll eventually go away right?

No. Unfortunately, that’s not how it works. Exercise won’t cure me. There currently is no cure for Type 1 Diabetes. Exercising will only make me healthier, just like an average human being. Exercising also has mathematical equations involved. I can’t just go running without thinking about what time I put my last injection of insulin, or making sure I eat a small snack so my blood sugar doesn’t drop. I have to make sure I can exercise as long as I want to without my blood sugar levels going crazy.

Everything you do, I can do. I just have to think about it a lot more than you do.

Does it hurt when you poke yourself?

Honestly, sometimes, yes it does. Sometimes I hit a blood vessel and I get a bruise. But for most of the time I’ve gotten so used to it that it doesn’t hurt at all. I have calluses on my fingers from poking myself to test my sugar and it helps me play the cello better, so that’s a win.

Are you in control of it, are you taking care of yourself?

This double-loaded question always boggles me. Yes, thanks for asking. First of all why wouldn’t I be? I mean I want to live. Second of all, superbly well. I’m always one of my doctor’s best patients. But why are you even asking me that? I know sometimes this is out of love, but a lot of the times this is passive aggressive and I hate it. It’s not like I’m all up in your healthcare, asking you when you want gum: When was the last time you went to the dentist? Ugh, anyways. Yes. The answer is yes.

Although, having to always be manually driving and always be in control of my body does have its downfall. I used to struggle with having to be in control of my life because I needed to always feel in control of my body. Losing control is something I struggle with. It’s something I’m always working on. It makes me human.

The final chapter in the disease.

So at the end of the day, when my diabetes comes up I usually say:

I was diagnosed when I was 15. I consider myself lucky. Well, not lucky that my body basically attacked itself, but lucky that I was diagnosed at that age and not at 18 months. I can eat what you can, I just have to put insulin for it.

That’s the story that I tell everyone. I keep it lighthearted and funny because the usual response I get is “that sucks” and I don’t want anyone’s sympathy.

But here’s the real story…

The Cure.

The day I was diagnosed, I was wearing a Ratatouille t-shirt and my hair was in a pony tail. That seems to be the only thing I vividly remember. My mom was sitting with me in the patient room crying when the doctor told us the news. But I just looked at the doctor and said, “Okay, what do I have to do?”

You see, when I first found out that I had Type 1 Diabetes, I never asked God why, I already knew why. In high school, I was involved in pretty much everything, always so busy, living extremely fast. All of my life I had put others before myself and time and time again I had left my needs to the end. But, I saw that God gave me a chance; a reason to put myself first four times a day. 

I consider myself lucky. There are children younger than me, who like me, have Type 1 Diabetes. My doctor told me once that her youngest patient was 18 months old. Can you imagine? I’m sure they will grow up to be one of the strongest most amazing people on this planet, I have no doubt about that. If there ever was a cure, I think I’d raise the money for the 18-month-old to be cured, so they could have a childhood too. I wouldn’t think twice about curing myself first—I can handle it, I can survive this. My only want is to help others see a positive side to this blessing, just like I do.

And at the end of the day, when World War Z finally happens, and the zombies run right past me…I won’t be looking so disgusting. And as much as I would want to turn around and say to you: Well, that sucks. I won’t. Because I’ll have a new burden to carry. And it might just be in the form of a cure to save the world, no longer just a disease. Because this is my strength. And when my blood sugar drops, and the kitchen looks like a Kindergarten class just had snack time in the middle of the night, with Capri Suns or apple sauce packets scattered all over the counter, only then will it be my weakness.

So, what is your strength? What will you do with it? Because mine comes from within, and I plan to teach the power of it to others.

Lovely life Lesson:

When you have to do things that remind you of certain parts of yourself that you have to carry, just remember that it’s only one piece of your puzzle, and that it doesn’t define you. It may leave a mark, but it’ll be a reminder of your strength. And next time someone tells you something about themselves, tell them that they’re amazing for having to go through that. For having that be a part of them. That they are strong, that they are an inspiration. Because they already know their situation might suck, they might just be choosing to see it from a different perspective and using their situation or disease to make them stronger.

If you or a loved one is going through something that sucks—be it a disease, a life change or a difficult time, let me be the first to tell you/them:

Wow.

You are so strong. And my God, you are amazing. I admire you for keeping your strength. I admire you for sharing something so vulnerable about yourself with others, when you choose to. Remember that it does not define you, it only makes you more human. A stronger, lovelier human being. An amazing human being; with a burden so beautiful that your story can change the way the world sees pain. So, thank you. Thank you for being so strong, so amazing.

I admire you. 

type 1 diabetes
More about loveleemonicaa

Founder and creator of Find A Lovely Life. An old soul with the heart of a child, trying to remind everyone how lovely they are. On any given day, she probably has her nose stuck in a book or she's laughing at her own joke. Her patronus is a dolphin and her dog is named Jude.

1 Comment
    1. Thanks for sharing your story, Monica! You’re a great example of a brave, strong woman. So many times, we as women especially seem to keep those more difficult parts of our lives hidden. It’s so refreshing and encouraging for you to have the courage to share yours and be an encouragement for others to do the same, no matter what the burden they are carrying.

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