Hi everyone, my name is Kayla. I’m 17 and I’m a senior in high school. I was just diagnosed on Saturday with T1D, and no one else in my family has diabetes, so this is very new to me. What are some of your experiences at a young age with diabetes? Any advice for me going off to college in a few months with diabetes? I’m very scared by T1D. It’s so overwhelming, any advice would be greatly appreciated.
Dear Kayla,
Sorry that you had to join the diabetic club, but TuDiabetes is a wonderful place to get support and good information!
Finding out that you have diabetes is very scary at first, but it gets better when you learn more about it and how to handle it.
I don't have experience with diabetes at a young age, but lots of people here do. Most people are probably at work or at school right now, but I'm sure that you'll hear from a lot of people later on.
In the meantime, I'm thinking of you and sending warm thoughts!
marty1492
Hey Kayla,
I was diagnosed at 57 with T1 so I can't help with experiences at a young age but I can tell you that it gets better! The first year and especially the first few months are tough. There's a lot to learn and it takes time to get the hang of counting carbs and dosing insulin.
Two specific pieces of advice - 1. Get a copy of "Think Like a Pancreas" by Gary Scheiner; it's a great primer on insulin dosing. 2. When you go off to college, make an appointment with their disability officer. It's not that you won't be able to manage college. It's that managing that first year is tough and your school should give you some help and accommodation to make that year easier.
Please hang around here. It's a very warm and helpful community.
Maurie
Kayla,
I was 15 when I was diagnosed. I remember feeling at first "okay" with it. I was so ill (almost died on way to hospital) that I just wanted them to make me better. Once I was treated I became super overwhelmed, angry and scared.
Being 15 at the time, my friends had a hard time understanding its seriousness. To this day, I think my boyfriend & family understand it best. I don't get the vibe my friends fully grasp how serious it is.
My experience was manageable for sure. I cheered, played soccer, worked, took gymnastics, etc. It is all a balancing act & being sure you take time for yourself and your diabetes. ALWAYS put yourself and how you feel first. Take care of yourself the best you can & don't beat yourself up-- you'll feel defeated & that's not the way to tackle this disease.
It is most definitely a disease that leaves you thinking 'why me?' but I want you to try to keep your head up, especially being so new to this disease.
The best advice I can give you is to TALK to those that are close to you. Talk about how you feel, what you think, what you are afraid of. Also, educate yourself about the disease and its effects (physical & emotional).
I also suggest getting involved in the JDRF community. It really can raise your spirits and keep you hopeful.
My college experience was good. I lived with 3 friends through school & just made sure they knew how to handle any diabetic episodes (luckily there were none).
I let diabetes be known-I didn't hide it & it's helped shape who I am. I also made it part of my class assignments. For example, I gave a presentation over Diabetes in Speech class & demonstrated checking blood sugar & taking a shot.
This disease makes me appreciate life so much more bc it is an eye-opener as to how fast a life can be lost. It has made me stronger, and while I still have occassional breakdowns, I know that they are only temporary and for the long run, I will be stronger than the disease & there are resoures, such as this website, to always remind me of that.
Turn your fear into your motivation to stay healthy.
Best of luck to you, and feel free to reach out at any time!
Hello Kayla
Welcome to TuDiabetes! Its great you joined us, you are at the right place!
i just read on your profile that you indeed have been dxd recently, i mean 2 days, holy moly!!
I am 18, was dxd 9 and a half years ago, and i have become used to it. i mean the beginning is always hard, but i tell you, give everything you have into getting used to it. there is nothing sadder than a person who was diabetic for 5 or more years and can still not accept the fact of having diabetes day in day out.
thats my advice. if you need help, feel free to message me or send a friendrequest, we are here to help eachother, through good and bad times :)
its not gonna be an easy walk, but i tell you, its all in your hands to make it as easy as it can be. for me dealing with diabetes has become like brushing my teeth
i really hope that everything goes back to normal quickly for you!!
have a great day
SC
Kayla, you're gonna be just fine. And your going to enjoy college, and participate in everything you'd like to and have a great time. This disease is something you can quite successfully live with, manage to the point it's not really a whole lot different than having bad eyesight and having to always be aware of and concerned about glasses.
I'd strongly urge you to immediately spend some time and focus learning all about Continuous Glucose Monitors and Continuous Subcutaneous Insulin Infusion pumps. CGM and CSII. For someone at your stage in life, the Omnipod tubeless pump is a very attractive option.
If you can get insurance to cover a CGM and pump for you, it will make managing your diabetes a breeze compared to trying to deal with all the record-keeping, insulin calculations, etc. etc. while your trying to make sure you're getting to classes, get assignments done, and have a college social life. For an active young college adult, especially a newly diagnosed PWD, managing testing, injections, etc. is a lot of work on top of everything else.
Please do a bit of research about CGMs and pumps, and talk to your parents and doctor about these technologies. You will find a ton of support and information on this site for these treatment options, and also find (encouragingly) that many of us maintain non-diabetic sugars -- fairly easily -- with these tools.
Good luck, and welcome to the family!
Wow! That's hairy! I was 16 when I was dx'ed, junior year. My parents gave me a lot of space and I was able to sort of get the hang of it. On one hand, this was good, as I was flexible but, on the other hand, I have a very dismissive attitude about doctors and, for that matter, diabetes. This was reinforced by college years which involved quite a bit of partying and the math of "3 beers drunk, 4-12 beers drunker..." translated fairly smoothly into insulin. This was the mid-80s so "carb-counting" hadn't been invented so I sort of missed out on that until I got a pump in 2008 and had quite a few wild adventures in between them. Fortunately, in my circle in college, people were passing out all the time so it wasn't a huge problem socially although, perhaps it interfered with some romantic adventures. Oh well.
That being said, it's much easier to control with a smart approach to carb counting. I like Gary Scheiner's "Think Like a Pancreas" a lot too. Having a plan is a great idea. Since then, I've gotten a bit more responsible and have to behave myself these days but the spirit of exploration and testing and adjusting can be interesting. Diabetes sucks and can be dismal but if you test 10x/ day, there's 10x to succeed, either getting a number you want or figuring out how to get this number to the next number by the next test.
kayla, advice: take it one day at a time, deal with the number in front of you and try to do it with as little emotion as posible. remember that youre not perfect, youll see numbers you werent expecting at times. i was diagnosed two years ago in my thirties with t1 and so cannot imagine what it must be like to be a teenager with this. its not fair that you have to have this so young.
it is really overwhelming and scary and sad at the very beginning but it gets easier and youll see that you can do it, youll be learning every day, albeit things you dont actually WANT to learn about. learn as much as you can, stay connected with tuD, its a great help, especially when everything is so new.
find a doctor that will work with you and include you as a decisión maker in your care. again, i cant imagine taking on this responsibility at such a young age, but it is what it is. when you find a doctor, listen, but always question, do your own research, listen to other t1s-they are the people who can help you the most. doctors arent living with this 24/7, they dont know everything.
the books people have recommended here are excellent, a big help to have everything to hand in a couple of books. one book that id also recommend is "the book of better" by chuck eitken. i cannot sing it high enough praises as it will make you laugh out loud at D and the ridiculousness that it is at times. when im having a hard time with D sometimes i pick it up and read a chapter or two and it will make me laugh. sometimes bitterly, other times heartily.
good luck with everything, it gets easier.
Maybe I'm not as into the "overwhelming and scary and sad" side of things as I still remember how horrible I felt and, however annoying diabetes is, it's better than feeling like I did when I had undxedabetes.
I have been diabetic since 18 months old and am 32 now. The biggest piece of advice is to not give in to temptation or peer pressure. Complications can arise later in life if you do not take care of yourself and I am dealing with that now. Just remember that it is no one else's health except yours. My biggest mistake was not thinking I could succumb to complications. We as a community are here to help and if you need anything or want to talk please don't be afraid to ask. I am more than happy to help you in what ever way possible.
I too was diagnosed at age 17 while a senior in high school, and also had no relations with diabetes in my family. You've gotten some good advice - I would second the advice to buy some good books and read them now (or at least read them once you've finished mailing your college applications :)
My reading list for you: "Type 1 Diabetes" by Hanas; "Using Insulin" or "Pumping Insulin" by Walsh; and "Think Like a Pancreas" by Scheiner. Buy them now and read them while you have the most interest and questions about your T1. Knowledge is power and will overcome your fears and trepidation.
If you read these you will know far more than your doctor. There is no need to be scared of T1D. It sucks that you got it, but it is very manageable, and you'll do great. Good luck.
I was 16 when I was diagnosed a junior at the time, and 33 years later, and a daughter who is 24 things worked out o.k.. When I went to college you can pretty much be like everyone else you just have to make sure you have everything you need to make it that way. Just keep on top of your blood sugars and eat when you need to. Other then that you are just like everyone else, the only difference is you have to provide the insulin manually instead of automatic.
Amen
Sorry you had to join this club, but you've come to a great place for venting, asking questions and getting tips. As far as going off to college, I was 30 when Dx'd with type 1 so I don't have direct experience but I have found there are more of us out there than I thought there would be. As someone suggested, meeting with your university health services is a great idea. And, maybe you'll find there is a support group of fellow students with type 1. Or start one. And there is a benefit, believe it or not. You will become so much better at taking care of yourself - not just the diabetes, but other aspects of your health and life that you'll be stronger and more fit than your comrades. This will really strike you when you get past 30 years old! I now remember a fellow student with type one (this was way back when) and when they were making roommate decisions, she was placed with a nursing student. It was a great idea and even then got the clearance (which probably isn't necessary now) to have a mini-refridgerator in her dorm room. Kinda like my ballet dancer background gave me a strong self-discipline sense, the type 1 will do the same.
I was diagnosed my freshman year of high school. I never read a book, joined a support group, talked to other diabetics, etc. I just sorta did my own thing and it went fine. Don't be scared!! It's going to be ok!!
I'm now 18 and a freshman in college. Personally, I made the choice from the day I was diagnosed to not let it prevent me from doing anything. I go to IHOP at 4am after a night of partying, I travel, I seriously do everything. I promise that it's not as scary as it seems. It takes some time to get used to it, but you're still the same person you've always been, just with a defective immune system!
I'm a full-time student at a college in Washington, DC. I live like most kids do- I live in a dorm with 5 roommates, I'm in a sorority, I take really stressful classes and I party like the best of them. It's definitely doable! Diabetes is NOT a disability, it's just an annoyance. The main advice I have for college is to bring your own chasers to parties/pregames, test every once in a while, get a cute cross body bag and stash some snacks in it, figure out how to eat healthy even if it's a little more expensive, and work out at least a few times per week. Some days you are going to feel like absolute shit, and it's ok to miss class/stay home and watch netflix. Just make sure you stay on top of your workload.
Just remember, you are NOT YOUR DIAGNOSIS, diabetes can't stop/won't stop you, and you can contact me with any questions about how to be an actual college kid in this day and age :)
EDIT: University health services cannot do s*** for you. Just saying. I met with them and they literally told me they don't deal with people like me, and if I need something I should go to the emergency room.
I was 4 when diagnosed, had many ups and downs over the years but think advice wise it's best to keep your goals, aim big, and don't let anything D related get in the way of it. Everything is still achievable with a little extra thinking. It is quiet common for things to just go to craziness and you end up feeling overwhelmed by everything and everyone offering "friendly advice". Believe in yourself :)
D wise, testing regularly is pretty much the biggy (and you can't test to much). Although once the dust settles think the best thing I ever got was a pump. Brilliant things and helped massively on giving more freedom to do what I like. And if you ever have any questions the people on here and in chat are always around and have seen probably just about everything.
Hey sorry to hear that. BUT that is not the end of the world, at least there are so many worse diseases one could have. I was diagnosed 13 years ago. It has been a challenge with ups and downs but I did everything and even more that I wanted to. I lived through high school, college and just finished law school. I had been an ordinary kid. I decided I did not want to be open about my disease, I hate people feeling sorry for me, so I had to always have it all together so far managed great. Only couple of people close to me know I am diabetic. I am not saying you should do the same. In fact I think it will be easier if you will be open, but just giving u example that with proper self control u can avoid being different or weird (actually only dumb people would think being diabetic is weird but its nit a secret college and high school kids are dumb and judgemenral). You will just be fine as long as you keep monitoring bg, keeping up the diet.
Leah, I love your summation: "Diabetes is NOT a disability, it's just an annoyance" I hope you'll let me use that line. I also wanted to follow up on my advice to contact the university health services. They may not be able to do anything directly, but if need be, they can make the paper work associated with getting any medical help smoother.
Take a look at College Diabetes Network - many schools have chapters now and they can give you the inside scoop on ways to prosper on campus.
You may also run into parent anxiety syndrome, where they worry so much that they won't stop pestering and ruin their own tranquility with worry. If that happens, get one of the free logging apps like (MyCareConnect) that automatically share your BG. This way they will know that you are testing and how you are doing without intruding. May not happen in your family but sometimes being the parent of a sick child is worse than being the sick child.
P.S. You really do need the kind of contact that TuD and CDN can provide to complement your medical team. There are people who have been there and are doing that and will "hear" your questions in a better way.