I’m no longer a teen either, but I can totally relate. I was diagnosed when I was five years old and am 24 now, and STILL I have those days where I get into a really low place–bitter and angry and hopeless about this f**king disease. It’s so frustrating when people have no idea what you’re experiencing, and even those people who really care about you and have good intentions can sometimes come off as judgmental and pushy. (Ehem, my parents).
My best advice is that in those situations where you feel yourself sinking into a depressive landslide, try to climb out inch by inch. Break up your anger and frustrations into tiny problems that you can solve creatively. Use your friends as help.
For example, a couple years ago, I went to Las Vegas with some of my good girl friends. I had just recently started wearing an insulin pump so I was REALLY self-conscious about it and was still getting used to the whole set-up. Well obviously, as a group of 21 year old college girls, we were going to go out clubbing in slinky little dresses and heels. I soon found out that there was NOWHERE to put my stupid pump in my tight, short, strapless LBD. I got so frustrated and what should have been a small wardrobe issue triggered a total meltdown. I called my mother crying. I f-bombed my pump and the idiot company who designed it! I hated the entire fashion industry for being so ignorant! I hated diabetes! I hated Vegas! I hated glitter! After my tantrum subsided (and I ate something bc let’s be honest–I was a little low), I had my girls help me cut a tiny hole in the lining of my tiny dress, thread my tubing through it so that I didn’t have any sticking out, and I used fashion tape to secure the pump to the back of my bra. It ended up looking pretty discrete, and if someone did notice it, it looked a lot like one of those portable mic packs, so my friends and I pretended we were part of an obscure reality show all night that we couldn’t talk about with strangers at the clubs. It took my network of crafty betches, some fashion tape, and a little creativity, but we ended up having an amazing time.
Back when I was in high school and used syringes instead of an insulin pump, my friends and I would go to eat at food courts at the mall, and we had this ongoing bet about how long it would take for a security guard to cruise by and check things out after I had taken out a syringe to give myself insulin. Awful, yes, but eventually hilarious. We’d sit down and be like “7 seconds,” “No way, at least 13 seconds,” and “It will take at least a minute but then another guard will follow within 10 seconds.” And then we’d make our wagers and I’d pull out a syringe to fill and sure enough, a security guard would walk by, peering inquisitively at our table.
There’s also the perk of being able to carry food and drink with you wherever you go under the guise of “I’m diabetic, I need this to treat hypoglycemic episodes”… Can’t tell you how many snacks I’ve smuggled into places for friends with that one. Haha.
Once, I told a confused frat bro that the thing on my stomach was actually a charging station so that I could just plug myself in and never had to sleep.
I keep track of how many times a month people ask me if I’m wearing a pager. (Yes, I am actually SO in love with technology from the 90s that I carry my pager with me everywhere. Psh.) High is 11 times in one month.
On a more serious note, I also have a journal where I write down exactly how my BG deviations feel in real time as they’re happening. I have hypoglycemia unawareness, so if I’m not wearing my CGM, sometimes I’ll plummet down to the low 30’s before I realize something’s wrong. As I treat myself and start to come back up, I record how I’m feeling and what’s changing. Sometimes it’s about my emotions, but often it’s pretty clinical–here’s some excerpts from last week, where I started to realize I was low, then treated it and ended up rebounding:
"1:39 pm: I feel really weird. I think I might be low. My perception is all f**ked up. Depth means nothing. Time is skewed.
1:58 pm: Memory is weird and spotty. Today’s meetings feel like distant memories. The time on the clock doesn’t seem right. It sounds like I’m underwater.
2:12 pm: Getting spins now. Can’t read. Must have been very very low bc I’m still eating carbs but feel shaky and weak. Head is pounding. Maybe dehydrated?"
I’ve asked my closest friends to tell me exactly how and why they think I’m low. Sometimes, if I’m acting or sounding strange, my good friends will be like, “Uhh, Ali? I think you should check your blood…” and after I treat it, I’ll grill them on it: how did you know? What signs was I showing and how did you identify them? It helps get an even deeper understanding of your symptoms, bc when you’re actually low, you’re typically not as adept at recognizing these things.
Another thing I hate is diabetes jokes. I can’t even. Here’s the thing, though: instead of being offended by them, you have to call people out and make THEM feel like an ass. Whenever someone pigs out on candy or carbs or whatever (it happens to the best of us), and then goes “OMG, I’m going to get diabetes! Hahaha,” I smile, look at them and say, “Diabetes jokes aren’t funny,” and occasionally pull up my shirt so they can see my pump and CGM. Or I come up with something else that’s short, concise, and puts the brakes on their dumbass comment immediately. You’ll have to master the art of quickly changing the subject afterward, though, so it doesn’t get awkward. #learnedthatthehardway
Also, I know this sucks, but you NEED to teach your friends how to use a glucagon. I’ve had three different friends have to inject me at some point, (not to mention parents and paramedics), and it can be REALLY scary for them. The first time I had a really bad hypo episode, my dad was shaking so much that he physically couldn’t give me the shot. Showing your friends what to do in an emergency is helpful for a few reasons: 1) So you don’t die. Duh. 2) It makes them realize that your condition is serious and at times entirely out of your control. 3) It makes them feel important because you’re trusting them with saving your life if the need arises. 4) It encourages them to become a champion for T1D, too. Score.
If you ever want someone to talk to, you can email me at email@example.com, or find me on facebook. No one is a master of this disease. We all screw up and learn and struggle and thrive, but sometimes it helps if we can all share and grow together, too.