Gaining Diabetes Independence.
I spent some time with some parents of kids with diabetes this week (more on that in short bit), but part of what we talked about was that transition between being a "child with diabetes" to an "adult with diabetes."
One of the biggest milestones for me as a transitioning child was earning my driver's license. I wanted to drive more than anything else. I wanted that freedom and that ability to go where I wanted and when I wanted, without that awkward "waiting for mom to pick me up" moment. But my parents and I talked about how driving with diabetes was a huge responsibility, and it was completely understood that if I screwed with my diabetes management intentionally, the car keys wouldn't be resting in my hot little hand. As I matured and got adjusted to the constantly shifting levels of responsibility that were required of me, the torch of diabetes responsibility started becoming more and more predominantly MINE.
Abby talked with a few people with diabetes in her community about making that jump from "under parents' care exclusively" to taking ownership. The responses were varied, which made me wonder how different this transition is, family-to-family:
Ashley Napear (22 years old, 18 years with diabetes)
I know for me growing up, my doctor told me that I was not allowed to have an insulin pump until I could take care of my diabetes which meant me doing everything. I know this is different now because pumps are being given to kids at younger ages, but this is how it happened for me
Dylan Hoots (18 years old, 8 years with diabetes)
I know that when I reached a certain age ... even as young as fourteen, I unintentionally may have pushed my parents away from taking care of me because in the back of my mind I wanted to be self reliant and be able to take care of the disease on my own, however, through that they eventually never asked me about it and it led to a lot of burnout. But I think every kid wants to be independent; it's especially different for children with diabetes because it can be such a dangerous disease.
Amanda Devens (20 years old, 14 years with diabetes)
It was a sort of process, slowly I started to realize that I needed to do it on my own, pricking my finger, then taking shots, and then pump sites. Because well there was one day when I was at school - my mother used to show up and prick my finger because I was too scared to - but this day she didn't show up, and I knew it had to be done, and so I did it. And realized that it wasn't really THAT bad! :)
Alissa Carberry (20 years old, 11 years with diabetes)
It was definitely a process- started slowly and it picked up. I was diagnosed when I was 9 and initially let my parents do EVERYTHING- but within a few years I realized I couldn't hang out with my friends or do any "normal things" that an eleven or twelve year old girl wanted to do because of the struggles of giving injections and carb-counting. My parents and I would work out ways to ease out of my dependency, such as me checking my sugars and carb counting on my own, but I had to tell them so that they could log it. Eventually I started doing everything and loved the independence that went with it, only when I went through burnout periods did they help or when I was ketonic (essentially when I hit a roadblock or diafails occurred) Once I went on the pump I was self sufficient … my dad still tells me that he has NO idea how to work my pump!
Melissa Moulton (20 years old, 10 years with diabetes)
For me it was a slow, gradual transition process. I went from my parents sending me on my way with pre-filled NPH/Regualar syringes, to leaving a filled Minimed 508 reservoir on the counter for me, to my mom occasionally scrolling though the numbers on my meter, to complete independence. It was definitely a give and take process, with me taking on more than I should have at times, and trying to push my parents away and them trying to take my diabetes back into their control. But hey, ten years later I'm doing just fine, so I think something in there went right :)
Alicia Miller (20 years old, 8 years with diabetes)
Diabetes was a bit of a shock to my growing up. I wasn't diagnosed until I was 12, so I wasn't really able to progress into my teen years and puberty until I had gained back the weight that DKA had taken from me. It was rather quick for me, I was giving myself shots within two months of my diagnosis (I had wanted to go to a sleepover and wouldn't be allowed if I wasn't doing them myself) and was on a pump within two years. I'm still adjusting to having diabetes in my life. I have gone from middle school, to high school, and now to college and traveling with it. I am still questioned with what I am doing when it comes to checking my blood sugars, pumping and using my sensor. My parents have always helped as much as I allowed them to, which wasn't much since I have been incredibly independent when it comes to my diabetes. I went to school, stayed after and hung out with friends, clubs etc. like everyone else because my parents trusted me, and my control and dedication to controlling my disease. I may not always have "perfect" blood sugars but I have managed to lower my AIC, keep my eyes in good shape and travel abroad without major issues with my diabetes.
Bethany Kinsey (23 years old, 18 years with diabetes)
For me it was more a psychological struggle of wills. Having had diabetes since the age of 5, things typically go one of two ways: either you don't learn to make the disease your own until college or some other cataclysmic event in life or you want full control by age 12. I preferred the latter of the two. I am generally a very independent person with everything I take on, so why not diabetes as well? However, my mom and I fought for years about my control-sadly, she and I handle stress and arguments very differently, so neither one of us were able to realize what the other person was going through until retrospect allowed us to see 20/20. I recommend taking baby steps instead of diving head first into the deep end as a pre teen/early teen. Diabetes is a BIG deal. Take all of the help you can get - just don't let that help smother you.
Abby Bayer (22 years old, 12 years with diabetes)
My mom never had much to do with the actually diabetes part, about 3 days after I got home from the hospital I was doing my own injections, carb counting, etc. I was almost 11 years old and was not about to have my mother running my life (and she wouldn't let me sleep at friends houses until I proved myself). The biggest transition that I'm still struggling with is the paperwork side. Insurance companies hate me, and aren't shy about telling me so. Sometimes I'll get 2 shipments of insulin when I only wanted one, and then they won't send me more when I ask for it. I have about 5 boxes the size of a small house in my basement filled with expired strips and lancets because the company was sending me far too many without me asking. It's a hassle, and until I get my own insurance and have the whole situation under control, I'm going to rely on my mother to fight with those people in who-knows-where about what they think I really need.
When did you start taking control of your own diabetes? And this question isn't just about children becoming adults. This could be the moment when you realized you didn't need to check with your endocrinologist every time you tweaked your insulin doses a little bit. Taking ownership of diabetes isn't limited to kids who are growing up.
When did you start to gain your diabetes independence?