Here, Type 1 Diabetics share their experiences with managing diabetes during their transition to college. They discuss what worked well for them, what they wish they would have known going into college, and resources they found helpful. Each story is different as everyone has their own way of managing diabetes and a unique college experience. Remember, there is no right way to make this transition. Every student finds their own way to be successful navigating college life, let alone diabetes.
LEXI
disability services and academic accommodations are a game changer
What I have learned about management is that being on top of it has positively impacted my college experience. When I wasn’t paying as much attention to diabetes, it would impact my grades because I would have trouble focusing on schoolwork.
What I wish I would’ve known is that I should have filed paperwork with Ability Services my first year because it helped a lot with my confidence talking to teachers about my situation. I didn’t file paperwork until my second year of college and it made it a lot more stressful for me when I had to miss class because I felt as though I was in trouble for something I couldn’t control.
My advice for transitioning t1ds is to go out and seek for resources that will help you in college as a diabetic. Ability services, a diabetic association or club, peers with diabetes, and definitely scholarships for diabetics. The resource that helped me the most was ability services. I filed paperwork saying I was a diabetic and then I was able to hand documents to my teachers that gave exceptions to missing classes, late assignments, having to leave class to correct my blood sugar, etc. It definitely helped me feel supported by my instructors when I had conversations about my situation and my privileges with the paperwork.
LIV
it is important to advocate for yourself
I think the most valuable lesson I’ve learned over the course of my four years at Amherst is how to be patient. There’s so many variables that come into play in college that we often wouldn’t think twice about when we’re home-socializing with friends and how to manage blood sugars, managing my blood sugars at cross country and track practice, the dining hall and the anxiety that comes along with it, and also feeling as though you need to explain yourself and diabetes to everyone you meet. In terms of managing diabetes at college, it’s much easier than it sounds it just requires you to be patient with yourself and to know that it will get easier over time.
One of the reasons I wanted to go to Amherst was to move across the country from home (Los Angeles for me) to prove to myself that I could manage Type 1 on my own and thrive. I really wanted to get out of the bubble. I’ve loved my experience at Amherst and wouldn’t change it for the world, I just wish that I didn’t hold myself to this standard of being perfect and coming across as though I had it all figured out. I was afraid to be vulnerable with my friends about the hardships of Type 1 and it took me about a year to do so. But when I finally did, that’s when I had this full butterfly experience and I felt like my most authentic self, diabetes and all.
Find other diabetics at your school! Anytime I saw someone at Amherst I would not only say hi, but then made a genuine connection and we’d get meals together in our dining hall. It’s easy to feel alone and overwhelmed in college, but meeting other diabetics that share similar stories and anxieties made me feel so much more comfortable at school. This might sound silly but a few months leading up to school, I would study the nutrition facts at our dining hall for each meal, just so I had an idea of what was available for every meal and which foods I should eat and which ones I should avoid (the vegan dessert at Amherst was delicious but would wreck my blood sugars haha). I also talked to my coach about Type 1 and how she could help me and what my teammates could do in order to have my teammates be able to help me. One of the best parts about college is that I’ve made some of my best friends there and I learned that my friends want to help with Type 1 as much as they can and I feel really grateful for them. Don’t be afraid to speak up and advocate for yourself!
ARIANA
tell your professors and friends about T1D
Make sure you become familiar with your on-campus health center, as they will act as your resource for anything you need while at school. I personally kept my endocrinologist from home and scheduled my appointments during summer and winter breaks, but it could also be beneficial to find a local endocrinologist near your school.
Now let me just say this, carb counting is hard on it’s own. Now mix it with figuring out your own portions and the unfamiliar food of new restaurants and now it’s a whole new ballgame. I highly recommend downloading a carb counting app and paying attention to what you eat! Also, I know it’s been said, but don’t stress about taking insulin in the middle of the dining hall. People have so many different things going on that no one really notices a quick injection. Plus…. it keeps you alive so everyone else can just deal wid it.
I always made a point to let my professors know about my type 1 and that I may need to eat in class at times, even if I figured that nothing would happen throughout the semester. Especially if they had a rule about no eating in class. It kept my mind at ease knowing I had someone who knew my condition in case there was an emergency. Of course, it’s not the most fun thing to do – to tell anyone about your type 1 for safety reasons, but it is the smart thing to do. Of course, it’s important to let your new friends know about your diabetes, especially if you’re going out to parties, experiencing new things, and exploring your new
city.
*From Ariana Frayer on https://cupofoj.com*
EMMA
connections to other diabetics help build a supportive community
One big thing I’ve learned is that sometimes you just have to take breaks. If you’re working on an important assignment and you feel low, it’s definitely better to take a short break and have a snack and let yourself come back up instead of struggling to finish the work right then. It can sometimes feel like a waste of time but you always have to put yourself first and sometimes diabetes is going to get in the way of your original plans, which can suck, but it doesn’t mean you’re a bad student or you’re not trying hard enough. Before transitioning to college, I wish I had known how helpful it is to have connections to other people who are diabetic. It can be extremely isolating when no one understands what you’re going through, and this is on top of all the normal hardships of starting college! I don’t know any other students at my school who are diabetic, but I started following some Instagram accounts and found that it was helpful to see other people going through the same experiences.
One piece of advice for t1ds who are transitioning to college now would be to make sure to advocate for yourself. It can definitely feel awkward at times, but the payoff is worth it. For example, contact the disability services at your school and request extra time on exams so that if you go low you will be able to get your blood sugar back into a good range for taking an exam and don’t have to worry as much about finishing on time. If you have a roommate, make sure you tell them you are diabetic and give them a short run down of high/low symptoms and where you are going to keep juice boxes and what to do in an emergency if you have a seizure, etc. You don’t have to give super personal details to this person you have just met, but you should make sure they’re aware of the basics. Personally, this was extremely important for me because there was one night where I woke up super low and disoriented and tried to get out of bed and ended up falling over and had a seizure and my roommate called the campus 911 and everything turned out fine.
One thing I did to prepare for college was try and find stories of other diabetic college students and read about their experiences.
Some random tips:
-I always keep a box with juice boxes right next to my bed (or in my bed, the years I had a lofted bed) and this is helpful for easy access during any nighttime lows.
-if you don’t already, wear a medical ID because this can be useful in emergency situations
-make sure you will have access to a fridge to keep insulin in!!
-if you’re going to be going to parties or drinking, make sure you go with a friend who knows you are diabetic and knows what to do in an emergency. And eat snacks!!
-try not to let being diabetic keep you from doing anything you really want to do! It might take some extra planning, but if there’s something you want to experience (e.g. studying abroad, working in a research lab, training to run a half-marathon, etc.) you should go for it!!
K
don't let diabetes stop you from going to your dream college
Diabetes never really affected where I wanted to go to college. I knew it would be a transition to get all of my supplies and prescriptions. I am lucky enough to have a family member near my college so that helps. Being able to manage everything before college is always a looming fear. I’m able to do all my site changes for my insulin pump, but it is a little frightening to be completely on my own because I will be across the country from my parents. I know that diabetes is something that I will always live with but I really didn’t want it to have an effect on going to my dream college.
RAQUEL
college is the perfect time to build a diabetes network
I was lucky to be part of the college diabetes network chapter at UT Austin in college. This was really my first time having a true “diabetes community”. I quickly realized that I could learn SO much more from my friends than I had ever learned from my endo. They taught me so much about navigating diabetes as an adult. My doctor would give very basic guidelines/advice whereas my friends understood what living day to day with diabetes is really like. I learned how to be more intuitive with my management and go with the flow of life with diabetes. I lowered my a1c down into the 6 range for the first time during college (after having t1d for over 14 years by that time).
I wish I knew that having a lower a1c was possible for me! I wish my doctors had pushed me to be in range for a normal person rather than “fine for a diabetic”. Once my a1c was in range, I felt SO much better all the time… I felt like me! I wish that they taught me more about drinking with t1d and how to deal with crazy eating schedules.
I would tell others going through the college transition to do their best to join or build a t1d community. Even if it is just one person (even an online friend!), having someone in your life who truly understands what you are going through gives you so much relief. It can be so hard to go through college with diabetes on your shoulders on top of the normal college difficulties. Having someone to vent to or rely on in emergency situations is everything! I would also encourage them to give themselves lots of grace. College is hard. It is important to believe in your ability to manage your diabetes well but also don’t get down on yourself when it doesn’t go the way you want! It happens to everyone and the best thing you can do is learn from it and move on.The best resources that helped me prepare for college were from the College Diabetes Network. Aside from that, just talking with others who have gone through it was helpful. Having a CGM was also a game changer for college. I wish this was more accessible to all who are living with t1d, but if you are able to get one it will give you more confidence in sleeping safely, having fun and living your best college life!
GÖKÇE
it is ok to focus on your health
I was diagnosed only a week before and I wasn't informed very well. I wish that someone told me i shouldn't be so hard on myself and it takes time to figure things out and it's okay. I can't speak for the diabetics who have had it for a longer time but if they are diagnosed relatively recently I'd like to say it's really okay to take some time off and focus on your health. I didn't do that, I put college first and then my health in second. It caused me so much pain. I wish I listened to my parents who wanted me to take some time off to adjust to this new chronic illness I just found out. I guess I didn't realize what it meant at first and felt like it wasn't real.
So, my advice would be; always put your health first, don't feel bad or don't blame yourself if you need some time off. Don't hesitate to ask for help. People around you love you and want what's best for you. Also definitely try to make some diabetic friends around your age. I didn't know anyone until I found this app [Diabetes Management Platform] and it helped me so much. It took away the feeling of loneliness and constant self blaming.
KATIE
design your schedule in away that works for you
I have learned that even for my early 8 am classes, my blood sugars are better throughout the day if I wake up a little early to make and eat breakfast even though it’s hard to get up that early. I also learned that I should be more mindful when registering for classes/creating my class schedule for the semester when I’m able to (I also recognize it isn’t always possible to craft the “ideal” class schedule based on when certain classes are available). One semester I had classes straight through from 10:30-4:30 and my blood sugars did not appreciate skipping lunch that first week (I later made sure I ate something during my 10-minute passing breaks). To try to avoid this issue, you can talk to the Academic Support Center (or similar resource) on your campus so you request the accommodation of “early registration” to ensure you have early access to classes before they fill up so that you can try to make time for meals in between classes if that’s something you know your body needs.
Disclosing that I am a T1D to my roommates, RA, professors, and anyone else I have felt comfortable disclosing to has been more helpful than I originally thought. When I first got to college and being away from home, I was worried about having my support systems far away, but I have luckily been able to find support here on campus in a variety of forms and have been able to educate a few people along the way (but educating others is certainly not a requirement or your responsibility). For me, telling others about my diagnosis has not only provided me with additional support but if anything were to happen to me I know these individuals would be able to help me (or find appropriate help) during an emergency - which could be life-saving. You shouldn't feel pressured to disclose, but for myself, it felt like the right thing to do and I'm happy I did.
I wish I would have known about and reached out to the dietitian/dining services staff sooner than I did so I wouldn’t have guesstimated the carbohydrates of the meals served in the cafeteria for as long as I did. If the carb info isn’t readily available to you, you should ask (it’ll make things easier, I promise!) Talking to other diabetics about their experiences in college helped me get a better sense of what things I should be aware of (but I also know not everyone has access to or feels comfortable reaching out to diabetics who are or were recently in college). Talking to the Academic Support Center on my campus was also helpful since those counselors were able to help me with setting up accommodations for classes and they reassured me that I can still be successful in college and extracurriculars while having diabetes.
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