Unless you have Type 1 Diabetes, you don’t know what it’s like.
No, that’s not meant to be rude. And yes, the same could really be said about anything in life. The difference is that diabetes is one of the most misunderstood illnesses out there. In addition to dealing with this life-threatening disease day in and day out, diabetics have to deal with the ignorance surrounding it—ignorance that often makes our suffering the punch line of your jokes.
I know that people think I talk too much about my diabetes. That some probably even think I “milk” it. But the reason I feel the need to discuss it so often is because I want to spread awareness and understanding about it. When just one individual thanks me for teaching them about diabetes or admits to how ignorant they were about it before, the annoyed looks of others are worth it. Plus, it’s kind of hard not to talk about something that affects my life twenty-four hours a day, seven days a week. And no, that isn’t an exaggeration—it doesn’t just affect me during waking hours.
Now that the disclaimer I always feel the need to give is out of the way, I’ll tell you the reason for this particular post. Today marks nine years since my diagnosis with Type 1 Diabetes. As long as that is, it honestly feels like it’s been much longer. It’s hard for me to remember what life was like without diabetes. But in a way, that’s ok. Because in a strange way, having a deadly disease has enriched my life.
Everything that a ‘normal’ person experiences becomes much more difficult and serious when diabetes is involved. Work, driving, exercising, going out, sleeping…you name it. As I type this, I’ve been cooped up in my apartment since Friday night at 5:00 pm with what I thought was a cold. But in my world, there’s no such thing as “just” a cold. I’ve barely been able to get out of bed all weekend. I was so excited because I had plans with work friends this weekend. But diabetes doesn’t do “plans.” I make a plan and my pancreas laughs in my face. I had to bail, and I always worry that people think I’m just being flaky. But, trust me, I’d much rather go have fun with people my own age than rest like an 85 year old by myself. I just don’t always get that choice.
Then there’s the fact that I recently moved to a place where none of my new friends really know about my disease. The first night that I went out with a new group from work, I had a bad low blood sugar while at the bar. I hadn’t told anyone I was diabetic yet. I had to run to the bar and push my way to the front. I spotted a coworker I had just met at the front of the line, and asked him to order me an orange juice. “With what?” Just orange juice, I kept repeating.
Another new thing I’ve had to learn how to manage is dating. In high school and college, people just know these things about you because they travel in your circle. In the post-grad dating world, though, that’s just not the case. Just minutes before the first date I went on in Connecticut, my blood sugar started dropping rapidly. It was probably due to nerves…oh, the irony. I had to text my date explaining that I’d be a little bit late because I couldn’t drive until my blood sugar was back to normal. On a different date, we were at my apartment when my glucose monitor started to beep. I had a Juicy Juice (super adult-like and attractive, I’m sure) and thought it would be fine. But then the double arrows showed up, meaning my blood sugar was dropping way faster than I could handle. I started to shake and sweat. My mom had texted me, and as I attempted to respond, my fingers were shaking so badly that they wouldn’t meet the keys on the phone. My date, who probably wanted to flee, sat by me and rubbed my back for thirty-or-so minutes until I could speak in full sentences again. I can’t even tell you how much that meant to me, but I’m also not naïve enough to think that that’ll be the norm in my future.
As I sit here typing, so many scary moments pop into my head—and I’m only thinking of ones that have happened in the last month or two. Unfortunately for diabetics, virtually every moment is a matter of life or death.
Because of that, though, I have such a true appreciation for my life. Every single day, I acknowledge how grateful I am to have a job I love. To work for an amazing company and be surrounded by smart, caring coworkers. To live in a new place that I get to explore every day. To be just a train ride away from my best friends from college. I’m always eternally grateful to have the most incredible family. Just the other day, one of my friends—who had recently seen my parents—said, “Haley, your parents are so proud of you. It’s so clear.” And the best part is, I know she’s right. I have two brothers that I consider my best friends. I have family ‘friends’ that are actually just family to me.
Sometimes my coworkers make fun of me for how excited I get about the little things—like sitting outside for lunch, getting drinks with my team after work, new desk supplies, you name it. Last weekend, my Uber driver told me I was the friendliest, happiest person he’d ever driven. And the weekend before that, a bouncer told me I was “too perky for a workday.” But I’ve come to realize over the years that life is too short not to get excited about everything. Am I in a good, positive mood all the time? Absolutely not. But I do try to stop and appreciate my life as often as possible. Because at any moment in these past nine years as a diabetic, my life could’ve been taken from me in a heartbeat. But it wasn’t.
And I know there’s a reason for that.
This past year in particular has been one of the most difficult yet in terms of my diabetes. As you get older and have the disease for longer and longer, your body just rebels more. I struggled a lot during the winter, which led my doctor to recommend a device called a Dexcom. It’s a Continuous Glucose Monitor that sticks into my skin and tests the fluid in my body, communicating my blood sugar levels with my phone. How cool is that?! I still have to manually test my blood sugar by pricking my finger several times a day, but way less often. It’s so amazing to be able to just open my phone and see whether I’m high or low! Now that I have a Dexcom, I can’t even believe I made it so long without a device like this. Unfortunately, fellow diabetics are often denied coverage for these devices because they are considered “experimental.” WTF, right?!
Then, just a few weeks ago, I took the plunge and started on an insulin pump. I had been against it for so long—I felt like I already had to dedicate so much of my life to this disease, and I didn’t want to have to wear it on my body (literally!). However, my crazy blood sugars had just become too much to handle. After a tumultuous battle with insurance companies, (don’t even get me started) I finally started using my Omnipod pump a few weeks ago. So far, I love it! Contrary to popular belief, I still have to figure out everything on my own, but the simple fact that I don’t have to stop what I’m doing to inject myself a million times a day is so liberating.
It’s crazy that in nine years with this disease, this is the first year that I’ve gotten to try these advanced devices, but better late than never! I can’t wait to see what else is in store. I just have to keep reminding myself that it will only get easier as technology gets better. Without that kind of hope, I’d never get through.
So here’s to another year of (relative) health, happiness, and lots of ‘little things.’
Colorfully Yours,
Haley
