6 Lessons I've Learned From 6 Years With Type 1 Diabetes

This year marks the sixth anniversary of my type 1 diabetes diagnosis. A lot has changed in my life since then, including how I think about my condition. I want to share with you some things I’ve learned over the past six years, so let’s begin.

1. There is very little education about the different types of diabetes (or the fact that there are more than two types).

We’ve all heard bad diabetes jokes from people who clearly don’t know anything about diabetes. My favorite instance of this was when a coworker made an incredibly unfunny joke before looking me in the eyes and saying “I know you’re diabetic.” Cool!

2. There will always be people who don’t get it.

Yes, I can eat that. No, insulin brings your blood sugar down. Just because I said I didn’t want a cookie doesn’t mean I can’t have one. Don’t get me wrong, I’m usually open to answering questions from people in my life, but it gets pretty grating when you’ve answered the same question for the same person multiple times and they still don’t understand it. The truth is that, just like other complex topics and chronic illnesses, people who don’t live with it or have someone close to them who does, they won’t get it. People lose focus when they’re faced with something that doesn’t directly affect them

3. People will watch you test and give injections.

On multiple occasions, one woman at my job has made comments about me testing or giving myself insulin in the break room. The first time I heard her (loudly) whispering to one of her friends that her daughter, who also lives with T1D, doesn’t wait a few seconds after injecting her insulin. I’m not a doctor, I don’t know this person, but what I do know is that I was told to wait at least ten seconds before removing the needle from the injection site. When I heard her say this, I looked over at her, surprised that someone would be talking about me just a few feet away. She didn’t notice, or if she did, she didn’t respond to me.

The second time, she responded. She was making a comment (once again loudly whispering to a different friend) that her daughter isn’t as “organized” as I am with all of my supplies. I looked up, totally caught off guard that not only was this happening again but from the same woman who I have still never spoken to. She met my eyes this time and repeated herself, this time louder. I nodded and started to eat my lunch, not before texting my friends and trying to figure out who this woman was.

After that, I didn’t hear anything from her for a while. Until one day when I was getting my purse out of my locker and she was standing at her locker, which happened to be very close to mine. I sat down at a table and started getting my supplies out when she stopped at my table and said, “Can I ask you a question?”

I responded, half-jokingly, “It depends.”

“I was just wondering if you’ve ever had a pump, my daughter wants one.”

“Oh, no, I haven’t. My brother has one, but he’s had some issues with it.”

She sighed. “OK, thanks. We have an appointment next week with her doctor.”

“Good luck,” I told her as she walked away.

It was a bit awkward, but it wasn’t all bad. I’m down to talk about diabetes care, though, so a couple weeks later I asked her how the appointment went.

4. People will marvel at how you’re able to give yourself shots.

“I could never do that,” is one of the most common things I have heard throughout my time with diabetes. I never know how to respond to that. My initial instinct is to explain to them what happens when someone with T1D doesn’t get enough insulin—I’ve lived through that, after all. I was in DKA when I was rushed to the hospital, and that experience was traumatic. Anyway, I’ve done pretty well in containing myself in these conversations. Again, these people don’t mean any harm, but it bothers me that there is so little discussion about any type of diabetes that most people don’t even have this knowledge.

5. You need to advocate for yourself.

This could be on every list for basically every health condition, but it’s something important that I’ve come face to face with in the last year.After I turned 21 I aged out of my pediatric endocrinologist’s office and had to find a new one. My doctor told me that there was an office close to where I live and I decided to check them out. Another thing you need to keep in mind about navigating this world as a young adult is that you will almost always be the youngest person in a waiting room. Is this bad? Not necessarily, but I feel a bit out of place when I find myself in that situation.

I went to my first appointment and was immediately caught off guard by my new endo. He’s an older man, clearly worked in this field for longer than I’ve been alive, and as I explained how I’ve been managing my diabetes for the previous few years he looked lost. He started telling me that he didn’t like the way I managed my health, and how he wanted me to completely change my routine and system. I froze.

I had been lucky enough to have never had an interaction like this with a doctor. I felt like he was seeing me as a child, not an adult who had been keeping myself alive for almost five years before he even knew me. The next time I went, I hyped myself up. I explained that I am very comfortable with my system and I didn’t want to change things unless I absolutely had to. He didn’t love that, but he stopped pushing.This could have gone very differently, and I am aware of that. There are biases in medicine that I benefit from. You might have a story that ended much worse, and I am sorry about that. I encourage you to research the offices you’re considering and see if they’re the right one for you.

6. You are not alone.

This might be the most important thing on this list. Living with diabetes, or any health condition, can feel isolating and can negatively effect your mental health. There is a large diabetic community online, and if you search around on Instagram for a while you’ll find someone you can relate to.

This can backfire, though, as some people share a lot of blood sugar numbers and say “Ugh, I was so high today,” and their levels were within your range. These people are not your doctor, and they don’t know your circumstances. It’s vital that you find people who make you feel seen and even make you laugh sometimes about the everyday management of this condition.

If you are newly diagnosed or have lived with T1D for 10 or 20 years longer than me, I hope you know that you are strong, valuable, and seen.