This question came in from someone through the #amadiabetes form, and I have some ideas. Thing is, I only have one version of the answer, so I’m hoping others from the community can chime in either here in the comments section or on Twitter using #amadiabetes so that the answers can be seen.
What did I do to prepare for being away from caregivers? I spent a lot of time trying to ease myself into taking over most of my diabetes care. And part of that meant talking with my caregivers about what their expectations were, what my diabetes required, what I wanted, and how all those things ended up in a blender together.
Diagnosed as a kid (age seven), my parents stepped in immediately to manage my diabetes. I was taught how to inject insulin, check my blood sugar, and we talked about the influence of food, exercise, and stress on my blood sugar, but the bulk of the worry and tasks were heaped on my parents. Specifically my mom, who would check my blood sugar while I was asleep. (She would wake up early to get ready for work and would check my BG first thing … she said my hand would come out almost automatically from underneath the covers, one finger extended. A PWD reflex.) My mom assumed/absorbed most of the diabetes-related worry, leaving me to focus on being a kid and letting the torch of care be passed to me bit by bit.
Here’s what worked about how we passed that torch:
- By the time I was a senior in high school, I had developed a sense of what it took to manage diabetes, and my responsibility for my own care was openly discussed. My parents made diabetes management part of earning my license (no keys unless there was consistent evidence of checking my blood sugar before getting behind the wheel). They punished me not for blood sugar results but for the lies about what might have influenced certain results. (See also: the time I lied about eating cupcakes) Diabetes wasn’t something they put on a pedestal; it was treated with careful consideration.
- Around the time I was 16, my endocrinologist started splitting my appointments between me and my mom together and then just me. It was empowered as hell to be able to talk with my endocrinologist without a parental ear listening in. I was able to be honest with my doctor and talk about my concerns or issues without worrying that I was contributing to my parent’s worry. This approach helped me gain autonomy when it came to my disease.
- I wish CGMs had been available when I was in college, because I totally would have worn one. Partly because I would have wanted to be able to see my blood sugars in context, but also because the option to cloud my CGM data would have been enough to take a bite out of my parents’ worry … even if they were not the ones watching my numbers.
- Before I started college, my mom brought me in on ordering supplies (at the time it was limited to test strips, insulin, and syringes, as I wasn’t on a pump and CGMs didn’t exist). I gained some insight on what it took to manage the insurance side of all the diabetes crap, which helped me take the reins when I was out of the house.
- And my parents always impressed upon me the importance of telling someone else that I had diabetes, as a safety net. They never made me feel as if it was something I was supposed to hide. Just get it out there, make people aware, and let that awareness serve as an umbrella of protection if I needed it.
- My parents also had to make an effort to back off while letting me ramp up. I’m sure that was really hard, but they gave me room to flex my independence and for the most part, it wasn’t a disaster.
- I also discussed diabetes with my roommate before moving in. More on that in this dLife column.
Things that we could have done better?
- I wish there had been more food freedom when I was a kid. Unfortunately, I was diagnosed in the time of NPH and Regular insulin, so we were always responding to the peaks of my clunky, injected insulin. Food choices were really restricted due to that, and also because my diagnosis was literally met with a list of foods I couldn’t eat anymore. That was the case for lots of kids diagnosed back in the 80’s – diabetes came with a list of “can’ts.” Food was a loaded topic for me and as a result, the freedom of dining halls with unrestricted access and no parental supervision left me over-eating regularly and also over- or under-bolusing for my meals. I didn’t know how to manage my own portions, and that took some time to figure out.
- I also wish I had brought a mental health professional into my diabetes care team before college, because that would have helped me sort through feelings tied to disclosure and confidence in college. My college experience opened me up to the fact that, once again, I was the only PWD in my circles, and I had some trouble being a soloist. (I wish the diabetes online community had been a thing back then. I could have used the connections. I’d recommend college students today check out the College Diabetes Network for support.)
- And I should have had in-depth discussions with my endocrinologist about the effects of alcohol on my blood sugar. I had to trial-and-error that experience myself, since I was afraid to bring it up to my doctor and also admit what I was doing to my parents. I wish I had had a better grasp on how alcohol and diabetes mixed because there were some very tricky lows during college that could have been avoided, had I been more educated.
The bottom line? I survived and thrived, with a lot of effort and a little luck.
How did you prepare for college? How did your caregivers help you prepare? #amadiabetes