Skylyn (age 16)
To me, I feel like my parents don’t understand how annoying it is to wear the cgm sensor and how unnecessary it is for me to wear it all the time. What the cgm is to me is a monitor to check how BG numbers are going and should be worn a week or 2 before endo appointments. My wearing it all the time seems pointless because I don’t really look at the number on my pump and I still test my BG at least 6 times a day. I have to calibrate all the time it feels like and wearing it in general is annoying. I wear it on my arm so whenever I go somewhere especially school, I have to wear baggy long-sleeved shirts unless I want to questioned and looked at weirdly by others.
Jessica (age 20)
I feel like my parents “don’t get” the feelings and emotions I have about T1D. Yes, they know it is difficult and a challenge, but there is a sense of stress that comes with diabetes, especially when you are older and trying to navigate on your own. For example, you know that keeping on top of your blood sugars helps you feel better because you are in target range more often; however, this is difficult in college when you have a million and one things going on and diabetes just feels like something extra that takes time. Yes, “it takes 2 seconds to change your site” but those 2 seconds aren’t actually 2 seconds, and those 2 seconds add up quickly in the grand scheme of things. Therefore, changing a site when you really need to sleep, or shower, or study is more stressful than they think.
Ian (age 14)
The biggest thing that I have to say is that not everything is related to blood sugar. If I am tired, angry, or confused, it’s not always my blood sugar. Don’t get me wrong, I don’t think that it is wrong to ask periodically, but if I am mad and you ask me to check my blood sugar… The other thing is that if I don’t have good numbers you don’t really need to change all of the ratios off of one or two bad readings. If I see that I am having really bad numbers I will fix it. I just take time in making the decision.
Ashley B. (age 15)
One thing that I feel that my parents don’t get about diabetes is how ANNOYING it is sometimes. I would just like to play, or eat, or dance without being interrupted by a pump alarm or a low blood sugar.
Lexi (age 15)
I wish my parents understood that I can’t control what I eat when my blood sugar is very low. It’s a hard thing to control.
Mercedes (age 16)
I feel like all parents of diabetic kids act as if they are the ones with the diabetes and they are the ones that live with it. In a way they do, but I feel like some of these parents are going to show up wearing their kid’s pump or CGM. Just remember parents that it’s their diabetes, not yours.
Laura (age 16)
It’s more than just numbers and calculations and what not. Also it’s sort of a guessing game so to be super consistent with it is challenging.
Claire (age 17)
They don’t really get that I’m really forgetful, and with everything going on in my life, I forget a lot of things, and they don’t really seem to get it.
Erin (age 17)
They don’t get that it is hard to balance activities, homework, social , and family life and also keep diabetes in check.
Cameron (age 17)
They don’t get that nothing can be perfect all the time. And not to overreact when something goes wrong (going high, low, forgetting to bolus,etc.).
Ashley C. (age 14)
I feel my parents don’t understand how annoying it truly is. They’re always like, “it’s just a shot it’s just a finger prick.” Well, ya, but it’s annoying and normally with annoying things I stay away from them. I just want them to understand how annoying it is to have to do these things EVERY time you eat something.
Vanessa (age 15)
The one thing I feel as if my mom & I don’t get along about is either if I’m checking enough or doing my shots right before or after I eat. I just feel like having someone on you about doing something just makes you not want to do it at all, because you want to be independent. But I do understand that parents are there to help and they’re just trying to help the best they can.
Andrew (age 14)
My parents don’t “get” how far diabetes reaches into my everyday life. The social stigma surrounding diabetes, and the constant state of personal care required to keep yourself healthy can be very invasive into your life decisions. For example, I’ve had cases where I’ve told people that I’m a Type 1 Diabetic and they will respond with “But you’re not fat.” Or cases where I go to the mall with friends to eat and have to take the extra time to test and bolus while everyone else is ordering or talking. These little nuisances are very annoying and have an effect on the way I act, an effect that my non-diabetic parents could never feel or “get”.
Nick (age 19)
Since they’ve been raising me with T1D for so long, my parents lose the perspective of people who know nothing about it. It’s easy for them to assume my teachers will all understand and agree to whatever my needs are. When a teacher is less than receptive, my parents can get a little upset.
Anna (age 15)
I feel that they don’t get that we get tired of this disease. I don’t always want to check my sugar and bring along everything I might need with me in case I go low or a glucagon shot. Yes, I get it, but it is very tiring at times to be reminded of diabetes constantly.
Josh (age 18)
Parents need to understand that as teenagers we have a lot on our plate everyday socially, mentally, and physically! Adding a life or death situation 24 hours a day to the mixture isn’t always the easiest. Understand sometimes it gets overwhelming. Be calm, patient, and supportive.
Julia (age 14)
I think that sometimes my parents don’t understand how hard it is to control blood sugar. Like if I’m high or low and I don’t know why, sometimes they get frustrated. They aren’t being mean or anything but it feels like they’re mad at me for having a bad blood sugar.
Jordan (age 18)
My parents don’t get that it’s hard to test all the time. It’s not always the first thing on your mind.