I went to the dentist today for the first time since my T1D diagnosis and updated my medical history. I was completely exasperated and annoyed at my dental hygienist’s commentary. Seriously. I wanted to correct everything she said…but her hands were in my mouth. How could she be so misinformed?

“You’re diabetic? But you’re skinny. That doesn’t make sense.”

“You know. It’s all in the genetics.”

“Yeah. That glucose monitor would be helpful even for people without diabetes. You know. Some of us just have low sugars.”

Even at these few comments, I was fuming.

Then I had to do a gut check…and remember the things that I misunderstood about diabetes before living with it. My worst: I used to think that juvenile diabetes was so sad, because it was diabetes that happened to parents who didn’t take care of themselves and then they taught that same behavior to their kids. How idiotic.

So I decided to give my dental hygienist some slack and instead do my part to inform others about Type 1 Diabetes.

I get it. I do. When I was first diagnosed, I went home and consulted the Google machine…and I was still confused. So here’s my Sarah version (and not guaranteed medically correct version) of things I wish people understood about Type 1 Diabetes.

1. I have no idea how I got Type 1 Diabetes, and many of the other 1.5 million Americans with T1D don’t have that answer either. One factor is genetic: But there are no Type 1 Diabetics in my family. I’m the first. Another theory suggests that a particular virus could attack the insulin-producing cells in the pancreas and result in T1D–though they’re still researching the unknown virus. (Read my T1D diagnosis story here.)

2. I didn’t cause diabetes through being lazy or eating junk food…And I can’t get rid of my diabetes with exercise and healthy eating. This one drives me crazy, because I like to think that I take good care of myself. Though exercise and eating healthy are great for me, just like they’re great for you.

3. Type 1 Diabetes is an autoimmune disease. The insulin-producing cells in my pancreas attacked each other, and they no longer produce insulin. This means that (on it’s own) my body isn’t able to get energy from food. (Type 2 Diabetes is a metabolic disorder where your body still produces insulin, but it doesn’t use it effectively. Not all Type 2 Diabetics need insulin.)

4. I’m insulin dependent. To stay alive I must effectively manage my insulin levels to be high enough that my body grabs energy from the food I eat, but I can’t bring so much insulin on board that my blood sugar drops to life-threatening levels. As you likely guessed, T1Ds are constantly thinking about highs and lows…and unfortunately, sometimes it borders on obsession. (And yes, I’m drinking wine and prepping insulin in the bathroom photo above…)

5. I can technically eat what I want. Pizza. Pasta. Carbs. Burgers…but that makes it stinkin’ hard, because my sugars go all over the place and are extremely difficult to manage. Shoot. I could eat the same dinner three days in a row, give myself the same amount of insulin, and have three different blood sugar levels. That’s because my levels are also impacted by sleep, stress, exercise, caffeine, and only God knows what else. Because of this (and I also choose to believe it’s healthier in the long run), I choose to eat a relatively low carb diet. (Except for those times when I splurge. Like the photo above too soon after I ate late night Whataburger breakfast…)

5.5. Technically this is related to 5, but it’s so annoying that it’s getting its own line. I will have to count every carb that I eat for the rest of my life. It’s like being in Weight Watcher’s hell forever. Every time I want to eat, I have to enter the amount of carbs that I will be consuming into my insulin pump. So watch out world. Expert carb counter in the making.

6. When my sugars are suddenly climbing high or are in the pits of a low, I don’t feel like myself. This one is difficult to explain, but just remember that I constantly take drugs NOT to get high. Interesting concept, eh? Highs and lows can often feel different. Though when I’m high, I tend to feel buzzy and loopy. When I’m low, I feel sluggish, get the sweats…and my mind can feel like molasses.

7. Most of the time diabetes feels like a nuisance, but sometimes it can be pretty scary–and also cause zombie-like lack of sleep. I’ve had a few scary lows that cause the “cries”. (You can read about the lowest of my lows here.) I’ve also experienced many nights where my urgent low alarm goes off over and over and over again.  Sometimes a legitimate low. But other times it’s just because my continuous glucose monitor has a mind of it’s own.

8. And now to my bionic nature. I wear two medical devices: My insulin pump (pulses insulin throughout the day and before meals) and my continuous glucose monitor (reads my glucose level every five minutes). My devices might look strange and creep people out. But they’re (most of the time) not painful. You can touch them. I’m not delicate. Trust me. I often catch them on clothes and run into doors/corners.

9. Working out is a serious mind game. I used to think that it was enough work to motivate myself to workout. Now before I workout, I have to monitor my blood sugar, make sure that it’s within range…and often eat snacks to regulate it. Then as I workout, I have to decide if I want to run regular levels of insulin, reduce the amount of insulin, or suspend the insulin completely. Much like the food thing, the results are different every time. Some days I completely suspend my pump and still drop to rock bottom lows…and then end up eating packets of glucose gels and sugar tabs…and then think “What was the point of working out!?” (Like the photo above when I had to bail out of kickboxing to sugar up…) Other days I have my insulin running full capacity and quickly rise to the 200+s. I love to workout and make it happen. But man, it’s a challenge.

10.Currently there is no cure for T1D. So for now I rely on my devices to act as my mechanical pancreas…and even though the technology is improving (and I’m so thankful I live today when it’s available), please don’t be fooled into thinking insulin is a cure. Though there is some exciting research happening at Harvard and MIT that created insulin-producing cells, which means that T1Ds might just need a transfusion of engineered cells every few years. Keeping my fingers crossed.

Rant over.