Out On My Own: Finding Independence

By Zach Jonas

Having type 1 diabetes in college can be challenging. Zach Jonas, a senior at Amherst, shares how you can navigate being alone for the first time, partying like an animal, and finding a support team.

Navigating the jump to college

When I was 18, I left my home in Kansas City to attend Amherst College in western Massachusetts, and I felt as if I lost my connection to my support network. The people whom I could trust to help me when I was hypoglycemic or having other diabetes issues – my mom, siblings, and close friends – were over a thousand miles away.

A few weeks into the semester, I ran out of insulin. Amid the exciting chaos of moving to a new place, taking new classes, meeting new people, I forgot to order my medication. How could I forget something so basic, something my life depends on?

There’s a famous graph in the diabetes world that’s shown at just about every diabetes conference, an endocrinologist once told me. It shows a sharp spike in the average A1C of individuals with type 1 diabetes at the age of 15 that doesn’t return to normal until almost 30. The point is that diabetes is the hardest to manage during this time of life. There are biological explanations, like fluctuations in hormones during puberty, but it also coincides with the moment when many people with type 1 leave their families to live alone for the first time.

On top of that, college is hard. Academic stress, alcohol, athletics, living alone, and feeling isolated – all of which affect blood sugar levels – can make living with type 1 on a college campus even harder. But there are ways to manage these problems and make life easier. Some advice I’ve received from a college friend who also has type 1 is this: “Take advantage of diabetes as much as it takes advantage of you.”

Getting the right accommodations

With that frame in mind, one of the first things to do at college is to request academic accommodations by contacting the disability services office (this office may have a slightly different name depending on the college). At most colleges, all you need to present is a doctor’s note or proof that you have diabetes to receive accommodations. Once you present your documentation, some colleges may have you meet with a staff member to discuss your needs.

My sophomore year, I was taking a (very) difficult final in organic chemistry when my blood sugar dropped below 50 mg/dL. My eyes were so blurry, a symptom of hypoglycemia, I could barely read the test directly in front of me. If I hadn’t used my accommodations for the final, (which allowed me 100 percent extra time), I wouldn’t have been able to finish the test. Especially since I had to wait nearly 30 minutes for my blood sugar to rise enough that I could see and think clearly again. Spending ten minutes to request accommodations at the start of the semester is worth it.

“Get accommodations. Get them all,” said Emma Smith, a master’s student at Boston College who has type 1 diabetes. “If something happens, you can fall back on them.”

“And there shouldn’t be any shame in using the accommodations that are given to you,” added Mia Eisenberg, an undergraduate student at Smith College with type 1.

Eisenberg, Smith, and I have found that our professors are usually very accommodating of our needs when it comes to managing our diabetes. Smith also recommends staying after class on the first day to let them know about your type 1 diabetes. It’s an easy way to meet professors and avoid an awkward misunderstanding if an alarm goes off in class or you pull out a phone to check the Dexcom app and your glucose levels.

For more information on advocating for yourself in college and your legal rights, the American Diabetes Association and the College Diabetes Network both have helpful guides and resources that can help you.

• Going to College with Diabetes: A Self Advocacy Guide for Students

• A Guide for Disability, Auxiliary, and Accessibility Services

Managing my diabetes

I try to keep in mind that college isn’t an excuse for me to let my blood sugars run out of control. Personally, after nearly a decade and a half of living with type 1 diabetes, I’ve noticed that I’m at my healthiest, physically and mentally, when my glucose levels are stable.

Once or twice a semester, I upload the data from my CGM to my phone (some people do it more often and many contact their healthcare team with their information). I use Dexcom Clarity, an app that helps me visualize the data. Looking at the patterns and trends from the past few weeks allows me to then make changes to my daily management. For example, if I see that my Time in Range value is below 70 percent, which indicates that my glucose levels are within the range of 70 and 180 mg/dL less than 70 percent of any given day, I know I need to make an adjustment to my diabetes care. A good time to make micro adjustments, I’ve noticed, is a few weeks into a new semester, just when my routine is starting to become more consistent.

I recently noticed that my glucose routinely spikes after lunch. I realized that it is probably a result of underdosing, so I’ve started to dose more. In a couple of days to weeks, I can open my Dexcom Clarity app again to see if that change helped increase the time I spend in range, or if I need to make additional adjustments.

For Eisenberg, who’s on the varsity crew team at Smith College, making micro adjustments is crucial to staying in range and being able to compete. During the rowing season, Eisenberg reviews patterns in her blood sugar and makes small adjustments to the basal insulin rate of her insulin pump. Keeping her blood sugar in range is particularly important because her teammates rely on her to be competitive during races. “It takes a lot for my team to trust that I’m doing my job,” she said. “We all have to trust that we’re all taking care of ourselves.”

Before making any major changes to your diabetes management, especially when it comes to adjusting medication doses, talk to your healthcare team. They can help you identify trends in your behaviors and glucose levels and make recommendations that can bring you in range more often.

What about having fun? (And staying safe)

“Can we talk about partying?” Smith asked me. “You're going to do it, so we might as well talk about it.” 

Drinking alcohol makes managing your blood sugar harder. That’s partially because alcohol blocks your liver from producing glucose which it gets from stored carbohydrate in your muscles. As a result of this, your glucose levels in the blood may go low. Even hours after I drink, while I’m asleep, I sometimes go low. This is called alcohol-induced hypoglycemia, and it can be scary and very dangerous.

To avoid alcohol-induced nighttime lows, I, like many others with diabetes, have created “going out plans.” For example, I always eat a meal before going out. When I’m at a party, I have sugar tablets or fruit snacks in my pocket in case I go low. Before I go to bed, I eat a snack – something with protein and fat – and underdose my insulin to ensure my glucose levels don’t go low while I’m sleeping. Wearing a CGM really helps – for example, it’s easy to set alerts at a much higher level to wake up in time to take glucose and avoid a low.

Smith has a similar plan – she brings fruit snacks with her when she goes out and makes sure to eat beforehand. But her nights out are complicated by the fact that she usually doesn’t have pockets big enough to carry her fruit snacks and her insulin.

“As a girl, our pockets aren’t very big,” she said. Luckily, during undergrad, Smith tended to go to the same parties as her friend Josh, who would carry her supplies. “I trusted him. I would give him one or two fruit snack bags and my insulin, and he knew never to leave a party without me. That was our deal. At the end of the night, he would give me my insulin back, and I’d let him keep the fruit snacks.”

The bottom line is that drinking alcohol can be dangerous, and avoiding alcohol is the healthiest choice for people with or without diabetes. However, if you do choose to drink in moderation, plan ahead, be smart, and talk to your healthcare team about the best ways to manage your diabetes and stay safe while having fun.

Taking care of mental health and finding a new support network

During our conversation, Smith mentioned that at college – and within the medical system as a whole – there’s not always “a lot of emphasis on mental health.” Often, for someone with diabetes, it’s hard to find someone to talk to about diabetes-related problems. Even close friends, Eisenberg, Smith and I agree, struggle to understand what it means to live with type 1 diabetes. Having a support network of people with type 1 with whom you can communicate is key to getting through rough moments.

Many colleges have a student-run organization on campus called the College Diabetes Network, or CDN, which was originally founded in 2009 by a college student with type 1 who felt isolated. During her undergrad at Santa Clara University in California, Smith felt isolated herself. She had only known a few students with type 1 diabetes throughout high school, but after serendipitously meeting two other students with type 1 diabetes at a party her freshman year of college, Smith founded the first CDN chapter at Santa Clara and served as president.

Being part of an organization like CDN is comforting because you can have honest conversations with other people with type 1 diabetes. “It was always nice just to know there was somebody else on campus who got it,” Smith said. Plus, making those connections means you have help when you need it. “There was one time when my Dexcom didn’t show up,” Smith said. “There was an insurance mix up of some sort. I texted [the CDN group chat] ‘Does anyone have an extra Dexcom?’” Someone replied, “Yah, of course.”

“If something happens to my insulin or I’m running super high, I’m freaking out and my mom is 900 miles away,” she said, “It was nice to know that there was some sort of safety net.”

Part of having a support network is also having medical support when you need it. Becoming familiar with your student health services, introducing yourself when you first arrive at college, and letting them know your diabetes regimen is key. Whenever you need anything related to your health, lean on them as a resource.

Traveling to college and, namely, living alone with type 1 diabetes for the first time, can be daunting. But taking advantage of the resources available to you, such as academic accommodations, establishing a healthy routine, and finding a support network, can make the transition to college much more manageable.

Despite having type 1 diabetes, “you're still a human being who has a life,” Smith told me as parting advice. “You deserve to live that life even if your pancreas doesn't work.”.

About Zach Jonas

Zach Jonas is a senior biology major at Amherst College. He was diagnosed with type 1 diabetes in 2007.