Thrive Guide for Young Adults
Top tips about doing college with diabetes
In your future: new people, places, thrills, and things to do. Got questions about bringing diabetes along for the ride? Our friends at the College Diabetes Network share tips for heading to college as an independent young adult.
1. Talk About Diabetes as a Fact of Life
Throughout most of middle and high school, I kept my diabetes as quiet as I could. I didn’t really talk about it with any of my friends, and I tried to hide testing my blood glucose or giving myself insulin whenever possible. But the end of high school and start of college (or whatever your next step) is a great time to make a change.
Mine wasn’t a formal decision to talk more about my diabetes. At the end of my freshman year, I found myself in the dining hall with some of my sorority sisters, explaining the way the pump worked, how I counted carbs, and what testing my blood glucose was like. As I opened up, I grew proud to talk about my diabetes—not the most important thing about me, but certainly important. By my sophomore year, I had a fresh tattoo on my wrist of a diabetes symbol and my date of diagnosis.
[Diabetes Forecast says: It's generally safe for people with diabetes to get tattoos, as long as blood glucose is well controlled.]
You don’t have to tell everyone about your diabetes; it’s your private health information, after all. But having a few people know about it, in case you need help, is smart. Clueing in a friend or regular contact about your diabetes, what to do in an emergency, and health care provider names and numbers gives you a safety net, especially if you live miles away from home. You can take care of diabetes yourself—I’m not doubting your ability—but you’re safer when some other people are in the know. —Devon Constable
Before introducing diabetes to people in your life, think through or script how the talk may go. More helpful tips here!
2. Connect With Diabetes People
As a child, the thought of being forced to meet other kids with diabetes was repulsive to me. Struggling with a new diagnosis, I wanted more than anything to just be like everybody else, to not be defined by this new identity. Nothing screamed “abnormal” more than a camp for weird kids.
Fast forward to freshman year of college: I noticed that my biology lab partner had clear tubing coming out of her pocket. We became instant friends after our first conversation, and it was a perpetual relief to be around her. I was not alone in all of my weird diabetic anxieties, and my usual furtiveness about my condition fell away into openness.
After making this connection, I began a chapter of the College Diabetes Network at my school. A group of five came together regularly, first in empty classrooms for meetings, then at the dining hall for dinner, and then in each other’s dorm rooms for small parties. We slowly realized that we weren’t just members of a club but friends of our own accord. The community we had created didn’t magnify my identity of diabetes—as I had feared as a kid—but rather, through openness, finally gave my secret diabetic identity some precious room to breathe. —Dan Browne
3. Know Your Rights and Be Proactive
Before I started college, my mom and I were informed about disability services at the university, and my mom was on board. I wasn’t. Because of my feelings toward the word “disability” and dislike of asking for help, I had no plan or desire to register for accommodations. After months of begging, my mom and my professors convinced me to register. I’m glad I did. Accommodations help protect your rights in academics and extend to dining halls, campus housing, and even registering for classes.
Registering with disability/auxiliary services at your college overrides any rules about bringing food or drinks to and using electronic communications in class. Why does that matter? Because not everyone realizes that the juice box you carry is in case of hypoglycemia and that you’re bolusing—not texting—with your insulin pump! It was a comfort to know that any diabetes-related problems or emergencies wouldn’t jeopardize my grades. For example, if my pump site happened to rip out in the middle of the night before a test, and I woke up over 300 with ketones (dangerous!), I could take time to get my blood glucose in the safe zone and take the test on another day.
[Diabetes Forecast says: “Disability” is not meant as a label to limit you—in this sense, it’s related to your rights to fair treatment and opportunities to participate.]
In general, signing up for disability services involves forms from your doctor that state your diabetes diagnosis, include symptoms and medical needs, explain how diabetes is legally defined as a disability, and list specific modifications and why they are appropriate (such as being able to eat or drink at any time to treat a low blood glucose).
My accommodations counselor also helped me learn more about the Americans with Disabilities Act and how it applies to job applications, interviews, employment, and more. I now feel differently about the word “disability,” and I don’t see asking for help as a weakness. —Mindy Bartleson
Find out more about registering for accommodations at college and your rights at work, while traveling, in public places, and more.
4. Drink Responsibly
Drinking and diabetes is a taboo topic of which I became hyper-aware when I went off to college and got involved with the College Diabetes Network. After speaking with many of my peers, it dawned on me that nobody really knew how to handle the situation, so it often became a little messy. I remember panicking and thinking to myself, “How am I going to do this in a fun yet safe way?”
[Diabetes Forecast says: When using insulin, drinking alcohol can cause delayed low blood glucose for up to 24 hours. Eating some carbohydrate with alcohol and frequent blood glucose testing is essential.]
I learned that it was a matter of doing what I normally do, perhaps just a bit more frequently. I taught myself to check blood glucose as much as I needed if I was indulging in a drink. I knew to have my supplies on me at all times in case of emergency and have a buddy who knew about my diabetes. I also approached my endocrinologist, nutritionist, and my parents to seek their advice, thereby eliminating the stigma associated with talking openly about diabetes and drinking.
[Diabetes Forecast says: Drinking alcohol is illegal for those under 21 in the United States. If you choose to drink, know how to stay safe.]
The lessons I’ve learned about diabetes and drinking have come in handy and have allowed me to enjoy an occasional drink in a safe way. I went on vacation last month and had the chance to try my hand at mixology as well as a martini tasting. Instead of being clueless or stressed about the situation, I felt prepared and ready to have fun with my family as we enjoyed the opportunity together. Not only did we have a great time, but my diabetes was under control—a win-win situation in my book. —Molly Johannes
5. Accept That Diabetes Burnout Is Real
Diabetes is all the time. This is often the hardest aspect of diabetes for others to understand. In between insulin doses, on weekdays and weekends, when awake and asleep, we always have diabetes. As a result, the day-in, day-out turbulence of blood glucose and the struggle for control can add up to a kind of diabetes “sea sickness.” The waves don’t ever stop.
Call it what you will—diabetes burnout, diabetes distress—it’s hard to define and overlaps with related conditions such as anxiety, stress, and depression. As an aspect of mental health, it is ignored by many patients and providers. Help can seem elusive. And that’s if you can even bring yourself to admit to needing help. If there’s anything worse than having diabetes, it’s being burned out on diabetes—as if you’re too weak to even handle your own condition. And most of the “help” out there consists of banal platitudes that are easier said than swallowed: Be kind to yourself. Vary your diet. Try meditating.
When I first saw a therapist after years of underlying depression and anxiety, I was convinced that my diabetes was not the problem; diabetes, at least, I had a handle on. My therapist nodded gently when I told her this, but over several weeks I learned it was silly to pretend that a chronic condition didn’t affect me mentally. It turns out my diabetes burnout stems mostly from my assumptions for myself: I need to be in control at all times. Diabetes is who I am. If my blood glucose goes high, I am going to pay for it. My first step to relief was admitting to the opposite: I am not in control. I am not my diabetes. I am focused on being okay right now. —Dan Browne
Feeling like diabetes sucks? You’re not alone. Find resources here.
6. Stick Up for Yourself
A few summers ago, I learned that sometimes advocating for yourself happens on the spot.
When I arrived as a volunteer at a camp for special needs kids, I was told to turn in all of my supplies, including my meter, hypoglycemia treatments, and rescue inhaler. This, I explained, wasn’t an option. The nurse in charge questioned why I needed to check my blood glucose so often. Maybe I was brittle. Maybe I could do it in the bathroom. I wanted to volunteer, but I needed to be able to take care of myself—and not in a bathroom. She mentioned her 10 years of nursing experience, I countered with my 15 years of living with diabetes. I knew it was best at this moment to leave, although it felt a little like quitting.
As an independent adult, you’ll advocate for yourself—often without time to prep—even when people don’t take you seriously because of your age. Self-advocacy can be asking for a Diet Coke. It can be asking those around you to not tell that offensive diabetes joke. It can also be a moment when you feel unsafe, and you need to listen to that little voice inside your head. For those uneasy moments, knowledge, guidance, experiences, and practice will be your friends. —Mindy Bartleson
If you feel you’ve been discriminated against because of your diabetes, call 1-800-DIABETES (1-800-342-2383) for help.
7. Don’t Be Afraid to Try New Things
This applies to everything in life, whether it is diabetes related or not. It rang especially true for me when I made the transition from insulin shots to the insulin pump this past year. I’d hemmed and hawed over the decision to do so for years. The prospect of changing my insulin therapy so drastically was frightening to me, and I couldn’t help but focus on the potential negatives of making the switch.
But I measured the risk versus reward, and it seemed like the payoff would be worth it. I felt empowered by the support I had from my family, friends, and other members of the diabetes community. I took the plunge several months ago and don’t regret it for a moment. I find the pump much more convenient than any other form of diabetes management, and my blood glucose has noticeably improved.
In fact, my perspective on trying new and daunting things has taken a total turn. Rather than shying away from the unknown, I tackle it head-on with enthusiasm. This new attitude encouraged me to travel solo for the first time this year as well as pursue the writing career I’ve been dreaming of since I started college. Like the saying goes: You never know until you try. The possibilities are endless. —Molly Johannes
The Authors: Mindy Bartleson, 22, type 1 since 2000, is the former leader of the University of Georgia chapter of the College Diabetes Network (CDN) and is now a program assistant at CDN. Dan Browne, 23, type 1 since 2002, was CDN chapter founder and former president at the University of Mary Washington and now works for the New York Stem Cell Foundation and serves as CDN alumni liaison. Devon Constable, 19, type 1 since 2007, is founder and current president of the CDN chapter at Towson University. Molly Johannes, 22, type 1 since 1997, is the former president of the CDN chapter at the University of Massachusetts–Amherst and serves on the CDN Student Advisory Committee. Morgan Kath, 21, has a sister with type 1 and is the vice president of the CDN chapter at the University of Rochester.
The College Diabetes Network's free student membership gives students exclusive access to internships and job opening with CDN's partnering organizations and corporate members, notifications about clinical trials and patient advisory committees looking for participants, and a monthly e-newsletter with all of the latest news in the diabetes industry relevant to young adults. Student Members are also eligible to be a part of CDN's Student Advisory Committee, attend CDN's Annual Student Retreat, and attend a number of conferences with CDN staff. In a busy and stressful time of life when it's easy to let diabetes slide, CDN's Student Membership is there to help you keep your head in the game.
Head here to find or start a College Diabetes Network chapter.
Ready, Set, GO
Starting college? “Transition means change,” says Cynthia Muñoz, PhD, a pediatric psychologist at Children’s Hospital Los Angeles. And change is nothing to fear—especially if you start preparing early, she says.
Declaration of Independence
There’s no right time to become independent in diabetes management. In an ideal world, you’d start the transition at least a year before moving from a pediatric to an adult endocrinology team, which includes an endocrinologist, nurse, dietitian, social worker, and psychologist.
Early preparation can ease anxiety about the changes you face and give you time to create a plan. That might include getting referrals for adult-focused health care team members, learning how to work with insurance companies and order and pay for diabetes supplies, and reinforcing blood glucose checking and insulin dosing skills. Before going solo, you'll also want to know where, when, and how you’ll get and pay for insulin, strips, and other supplies. Prep work could also include plans for dealing with a less-structured schedule of college classes and unpredictable part-time job hours.
Now’s not the best time for drastic changes to your diabetes care routine—such as switching to a pump or adding a continuous glucose monitor—Muñoz says. The goal is to reduce the number of changes you’ll be dealing with at once. No matter what diabetes technologies you’re using, she says, your ability to check blood glucose and administer insulin based on your doctor’s orders is the most important factor for independence.
“The daily demands of diabetes are a bit much,” says Muñoz. As you gain independence, know that you don’t have to do it all on your own. Emotional support and encouragement from friends and family is especially key. Also, your health care team can link you to support services and, in some areas, young adult transition programs.—Morgan Kath
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