Teen Topic #40: What is one thing you feel your parents don’t “get” about being a teen with T1D?

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.

 

 

Teen Topic #39:  How can a parent prepare their T1 preteen for living with D during the teen years?  

Ashley B. (age 15)
Parents can prepare their teens by acting out real world scenarios with their kid, such as pretending that your kid forgot their insulin at home. You should ask them what they’d do, and essentially coach them through it.

Skylyn (age 16)
I would say that parents need to make sure their T1 preteen is in the habit of counting carbs, testing, and bolusing if they aren’t already. At least for me, as I got older, I hung out with friends more often so counting carbs naturally was important. Your preteen needs to be able to know how to count their own carbs and bolus for them on their own.

Lexi (age 15)
Help remind them at times when they forget to check their sugar, it’s very hard being a teen or preteen and diabetic.

Jessica (age 20)
I think the best thing for a parent to do in order to prepare their preteen for the teenage years is to educate, especially on independence. While it is nice for parents to do things like check blood sugars or remind them to bolus or calculate their shot amount, it is best for the preteen to learn to do those things themselves. This is the time when they start going places without parents and T1Ds need to know how to do things, get help, get food, etc. on their own. Make sure they always have emergency money and food with them, teach them to calculate insulin if they are on shots or in case the pump doesn’t work. Although learning to “master” the disease and know your own body takes time, I think the preteen years are the time to start letting the T1D figure all this out so they can start to venture off in their teen years.

Ian (age 14)
The only thing I can suggest is to not treat it like a big change, just like a smooth transition. Most importantly, don’t freak out if stuff begins to change.

Mercedes (age 16)
Parents can start letting their preteens do more stuff on their own and start giving them more decisions on their own. This is so they can start feeling more like an adult with their diabetes.

Laura (age 16)
I think the best thing parents can do, first of all, is make sure they start good habits that they can carry out through their teenage years. (I wish I would have done that.) And second of all, gradually give them more and more freedom.

Claire (age 17)
I honestly can’t answer that, because I’m 17 and I’m still not prepared.

Andrew (age 14)
In my experience the best thing parents can do to prepare their preteen diabetic for their teenage years is to give their kids more freedom. As teenagers we become much more independent of our parents, socially, emotionally, and physically, as we start to take care of ourselves and solve our own issues. The diabetic aspect of your teenage years is no different, you start to separate yourself from your parents help, but if you aren’t prepared to handle your diabetes independently, especially with the difficulties posed by puberty, it can be overwhelming. This is why the best thing a parent can do for their child in their preteen years is give them more freedom so they can help their child prepare for the responsibilities they will face as teenagers.

Erin (age 17)
Gradually give more freedom.

Cameron (age 17)
Start giving them more freedom so whenever they’re out with friends or at a party and something goes wrong, they know what to do and don’t have to call their parents. I feel that responsibility is a huge part of living with D during the teen years.

Ashley C (age 14)
There is no way to fully prepare a teen for these years. It’s kinda like how no kid is the same, well, every teen going through this is different. The only thing I know is have them talk with a type 1 teen and get their personal story from it.

Vanessa (age 15)
I feel like you can’t really prepare for teen years with a Type 1 especially if you’ve never been through the teen years before. I feel like you deal with it as you go and it can be really tough at times but you just take it as you go and learn throughout the time.

Nick (age 19)
Don’t be helicopter parents. Make sure the child is taking care of their diabetes because they know it’s important, and not because their parents are making them. Because if they only look after their condition when they know a parent is watching, when the parent is gone they’ll just stop.

Josh (age 18)
I would say most definitely as a parent, I would practice letting your preteen  get a little more used to handling the disease all on their own. It has helped tremendously through my teenage years!

Anna (age 15)
Since the teen years are a time of growing and hormonal changes, parents can prepare their children for a lot of unexpected highs and lows. They can take their children to a diabetic camp or support group to let them know that they are not alone, and that there are people just like them out there.

 

 

TEEN TOPIC #38  Do you keep up with the research happening with new technology and treatments? How do you feel about those things (bionic pancreas, smart insulin, cell transplants, etc)? Does the hope for better technology affect the way you treat diabetes now?

Skylyn (age 16)
I don’t keep up with research about new technology for T1. I think new technology like the bionic pancreas and cell transplants are great and are exciting for the future. However, I am happy and content with the technology I have now and do my best to take of myself.

Laura (age 16)
I don’t really keep up with the new technology or treatments, but my mom does. She tells me a little bit about them but I feel sort of indifferent to them all. They’re nice thoughts but I have to be okay (and good at) taking care of myself with the resources I have.

Cameron (age 17)
I personally don’t research about the new technology. Usually my mom will tell me when something new comes out. I think the bionic pancreas and all that stuff is cool, but I wouldn’t want to be a guinea pig in case something was to go wrong. I tend to use my CGM a lot and have cut down on my testing.

Nick (age 19)
I love hearing about that kind of stuff. I’m all for anything that can make my life easier.

Claire (age 17)
I actually don’t keep up with it, however I probably should.

Ashley B (age 15)
I try to keep up with what has developed in the diabetes world, but I’m not really too concerned with it. Although, the beta cell encapsulation is pretty interesting.

Ian (age 14)
I’m not an avid follower of diabetes tech, but I do feel that there is hope for a cure. I am a bit worried about it though, for if the cure happens to be a surgical procedure, I might have trouble deciding if I want it or not. (I am highly tomophobic)

Lexi (age 15)
I love them, I wish I was a part of the bionic pancreas. I love that technology is advancing so that it can be easier for us.

Jessica (age 20)
To be honest, I don’t keep up with the advancements as much as I would like to and hope to think I do. I think that they are all good starts and prospects, but in the end, expense and accuracy are big concerns. We all know that insurance companies aren’t the nicest and while these seem like great ideas, for many they may be impossible to get and use. The hope for better technology does not influence my current management. I treat my diabetes the same with each new device I get: I learn to use it to its full potential and in a way that is going to benefit my overall health and A1C.

Jordan (age 18)
I tend to keep up with the new technology because my mom brings it to my attention. I think the new technology is great because it has gotten to the point where a cure might not even be necessary with things like the bionic pancreas
Mercedes (age 16)
I do some keeping up with the news in diabetes. It is nice to know how far we are getting in finding a cure and other new technology.

Erin (age 17)
I try to keep up with what I see in Facebook groups and online, when I’m not busy. I did a mentorship last year in a diabetes research lab and these new treatments seem promising, and the cure seems to be getting closer. I’m happy with the technology I have right now, so no it does not affect the way I manage my diabetes currently.

Ashley C. (age 14)
My mom usually tells me about the new things and I think they’re cool but honestly I think it’s just as much trouble to do all that stuff as just having diabetes.

Vanessa (age 15)
My mom keeps up with all of it and lets me know when something new comes out and she also asks me if I would like to try it. I would like to try anything that makes it easier on me but it’s also kinda frustrating wearing things that are attached to you at all times. But if it’s getting me closer to a cure I’ll try anything.

TEEN TOPIC 37:   Would you rather money be donated for a cure only, or do you like the fact that donations are also designated towards tech advancements to help the management of T1, support and outreach, and education?

Cameron (age 17)
I would keep it as it is right now, with the donations designated towards tech advancements to help the management of T1, support and outreach, and education. It’s not like a cure would be available to everyone in the world in a minute after it’s discovered. That’s why the donations should stay the way they are, so newly diagnosed people can have a better understanding of how to manage diabetes.

Nick (age 19)
I think the research into treatment and therapy is incredibly important. A cure may be right around the corner, and pouring money into finding one might get us there faster. Or it might be years and a significant technological advance away, and no amount of money will get us there faster. I think the current methods of treating T1D could and should be improved in the meantime.

Claire (age 17)
I think any advancement or help to the community is great.

Ashley B. (age 15)
I think any donations towards any research for diabetes is extremely helpful. If we strictly donated money to the cure, there wouldn’t be any improvements on insulin pumps, insulin, or meters.

Ian (age 14)
I think that all donated money should be put toward a cure only, but a majority of net profits from the pharmaceutical companies that manufacture diabetes supplies should be put towards development of diabetes technology.

Lexi (age 15)
Well I am really hoping for a cure, but I think we all know that’s going to be a few years from now. For now I’m happy that they go to education, and treatments. It’s great that people know about diabetes and how it actually is.

Jessica (age 20)
Personally, I think both are necessary. However, I feel that the majority of the money should be designated towards a cure since with a cure, technological advances won’t be necessary and the money can be used to sustain the cure (i.e. make more shots or product) or be given to another charity that can also use the funds. Nonetheless, the advancements that make our lives just that much better are nice and appreciated by all.

Jordan (age 18)
Money should be donated to upgrading technology because I feel like if we upgrade technology enough, a cure won’t even be necessary.

Mercedes (age 16)
I think that it’s important that donated money goes toward everything involving diabetes.

Erin (age 17)
I think it’s important for money to go towards both because we need to have advancements to lead towards a cure, and advancements make managing diabetes easier are just one step closer to a cure.

Ashley C. (age 14)
I like how they distribute the money to different things other than just the cure.

Skylyn (age 16)
I would rather the donations be for technology advances towards T1 management. Personally, I think finding a “cure” seems too far-fetched and nearly impossible. I think for the future, technology will improve more and more and management of T1 will become easier.

Vanessa (age 15)
I would like all of the money to go to a cure. But it can’t happen so easily. It takes time and patience so I like that during the time of them searching for a cure money is also going towards technology that helps us get closer and closer to finding a cure.

Laura (age 16)
I feel like even with more money donated to find a cure, it’d still take a while for one to actually be made and approved. I’m glad that money is donated to help improve all the other things too, because they’re all key factors of making people aware of diabetes, and also helping t1d sustain an almost normal life.