The first time I lied to my parents about my blood sugar is still a crystal clear memory for me. I was twelve years old and participating in a swim meet at our local beach club. My mom yelled across the pool, “Lauren, it’s time for you to check!” I groaned and dragged my feet as I made my way over to my back pack in my usual cubby. I took out my meter, looked around, and then did something new: I put it right back. I paused a moment, then yelled across the pool to my mom: “I’m 121!” She gave me a thumbs up and a smile and went back to helping time the races.
I didn’t know it at the time, but that would be the beginning of a near seven year struggle for me with diabetes burn out. Now that I’m on the other side of it, I can share my feelings about what I did what I did and why I did it for so long.
1. I needed a break
The reason I lied the first time at my swim meet was so very simple. I was just plain sick of checking my blood sugar. I thought, what’s the harm in skipping?. The reward is I can pretend diabetes isn’t there.
I started off as just lying about my blood sugars, then it turned into lying about giving myself insulin, there was even a phase when I would take my pump off for periods of time without taking any injections. I realized even then that my behavior was destructive, but I cannot tell you how nice it was to just eat a meal without the bru-ha-ha of doing so with diabetes. The freedom of being able to just not deal with diabetes is incredibly liberating and, unfortunately, severely addictive. One might argue that feeling terrible all the time isn’t worth the freedom of not having to do all those tedious tasks, and I can agree with you now, but back then, it was worth it for me.
2. It was all just too much
Being a teenager was already pretty terrible. The hormones, the drama, all of it was insane. Now, add a relentless, chronic illness to the mix. In my mind, ignoring diabetes to focus on the millions of other issues that I had was important. I knew how to take care of my diabetes, I just chose to ignore it and worry about other things.
3. I tried to stop myself
When I was a junior in high school, I realized something: ignoring my diabetes care was impacting my grades, and with bad grades, I would not go to college. I’ll never forget when I went to my high school guidance counselors meeting at the beginning of junior year. She told me that I was in the bottom 50% of my class and that she was shocked.
“Lauren, you have always been in accelerated classes, your teachers know you are smart… so why aren’t you applying yourself?”
It wasn’t that I didn’t want to try, but having constantly high blood sugars was debilitating. High blood sugar completely wiped away my ability to focus in class, and by the time I was home and had to study and do homework, I was so tired that I would fall asleep long before my homework was done.
After that meeting with my guidance counselor, I vowed to myself that I would wake up the next morning, check my blood at least six times that day and remember to bolus for everything I ate. But it didn’t happen. There were countless times when I wanted to wake up the next morning and try harder – but I just couldn’t.
4. I was not trying to kill myself or cause harm to my body
During the time I was burnt out, I was simply that: burnt out. I was not trying to physically hurt myself. I just couldn’t mentally bear diabetes management anymore. I never wanted to die and I never wished my life away. It is important to point that out because if I did feel any of those things, this would be a different story. I knew I was going to be okay one day. I really did. I just was not ready to be okay then.
Today, as working adult, I understand why I have to give diabetes some of my time. I know that while I’d love to just ignore it all, putting on a new sensor and regularly calibrating it betters my life. I know that when I pause to count my carbs, figure out my insulin requirement and take it, I’m actually winning over diabetes. I learned all this from seeing the other side.
I hope I never burn out again. I know if I start to, this time, as an adult, I’ll tell someone I need help. In other words, I’m very thankful for my now developed frontal lobe. It’s a great diabetes tool.
Oh my goodness. This is exactly where i am at. I am nineteen and drowning at this point. The laziness. The sleepiness. I rarely even take my night insulin, let alone insulin before eating. I hate the staring, or asking for the nutritional menus from places. No lie, i had a waiter look me in my eyes when i asked him for a nutritional menu and say, “Are you one of those skinny girls who counts stupid calories and carbs to stay ‘skinny’. Girl, you are fine. You don’t need to do any of that”. Which, to say the least,… Read more »
What a great post. This was very encouraging to me. Im 24 years old I have been diagnosed since I was 13. My husband is also T1D and we both have experienced this “burn out” phase…
My daughter is 15 yo and has had type 1 for about 5 years now. She is also going through the same or similar feelings in relation to diabetes. I can hear her words in your story. Thanks for sharing.
Thank you for posting. I will share with my T1D daughter and my family. I know it’s tough for her. I want her to know that she is not alone and we know and will be here to help.
This is such an important post. My son is 7, dxd just before he turned 2. He’s in an acute phase of “hating diabetes.” It’s scary to think of the road ahead. At the same time, I marvel at his strength and determination. This is a great reminder to be aware of the burnout and help as much as we can as parents and friends. In my experience, the more my son knows about the why of checking himself and relating the importance of that to things he cares about, the better we seem to be off. For example, he… Read more »
Thank you so much for this! I have a 12 year old daughter and doing just this! After 7 years she is burnt out.. waiting for her to gain control.
Lauren,
Thank you so much for sharing. Both of my children (ages 12 and 13) have T1D. Is there anything I can do to help them avoid or work through a season of burn-out ? Is there anything your parent could’ve done to relieve some of your stress ? Would more accountability (ie, your mom actually physically spot-checking your meter) have made things better or worse ? So thankful you worked through this and learned from it !
Thank you so much! I’m 20 years old and I’ve gone through the same thing I’ve never related so well to anything before! This is so true I think the worst of it all was my mom thinking I was killing myself like I wanted to feel like crap and wanted to just die. That was never the case love this!!!
Thanks a million for the honesty. Going to show this to my 12 year old (8.5 years diagnosed) just to show him he’s not alone in burning out
Hello Lauren, I am a T1D diagnosed in 1945. Your blog was very meaningful to me, thanks for describing your teen years. My teen years involved a lot of high sugar, but I was testing my urine instead of my blood. I never skipped taking insulin, but it was the pork insulin, and there was no basal/bolus control. My grades were also affected by the highs, but I did not know that was the reason for it back then. I thought I was not especially intelligent, and that was very depressing. I know different now, and the guilty feeling is… Read more »