Nathan Reilly has had type 1 diabetes since he was a baby. And until last week, the 19-year-old always had his mother to help remind him of the litany of tasks people with diabetes must do.
Check blood sugar. Adjust insulin pump. Watch what you eat. Be careful how much you run around.
Now a freshman at Pennsylvania State University, where he is studying data science, Reilly, of Hatboro, is confident that he can manage on his own. He spent much of his senior year of high school practicing the routine, preparing.
But of course, he still worries a little.
A few times in high school, during hockey season, Reilly fell asleep with low blood sugar and experienced a seizure overnight. The experience was scary, but at least his mother was there to take care of him.
“I’m not, I guess, worried about it here, because I’m not playing [hockey] — it’s less of a risk. But it’s just one thing that I think about,” Reilly said.
He’s now living in a dorm room. If his blood sugar is low when he tests before bed, Reilly plans to stay awake until it comes up.
Managing a chronic health condition, such as diabetes, can be difficult regardless of age. But a new study suggests that it may be especially challenging for college students, who are adjusting to all the changes that come with campus life, plus managing a complicated disease on their own, without help from their parents, for the first time.
Diabetes distress — which is different from regular stress and anxiety — is high among college students and can negatively affect their quality of life, according to a small survey-based study in Ohio. The study, by researchers at Ohio University and published in the Journal of the American Osteopathic Association, also found elevated diabetes distress among faculty and staff.
“This is a population we need to focus on in terms of addressing their health outcomes,” said Elizabeth A. Beverly, an assistant professor of medicine at Ohio University and the study’s lead author. “If you’re not controlling your diabetes ... for even four years, that can have a major impact in terms of complications down the road.”
Diabetes distress is a negative emotional reaction to the experience of living with a condition that requires around-the-clock attention and lifestyle changes.
People with type 1 diabetes, an autoimmune condition in which the body does not produce insulin, must diligently track their blood sugar levels and their carbohydrate intake, and administer insulin. People with type 2 diabetes, where insulin production is compromised, may also need to adhere to nutrition guidelines and take medication.
Frustration with these self-care requirements, concern about the future and the possibility of developing complications, and perceived lack of support from family and friends can contribute to diabetes distress.
To better understand diabetes distress on university campuses, Ohio University researchers conducted the online survey of students, faculty and staff about their experience managing diabetes in December 2017 and January 2018. The study was funded by a grant from the American Osteopathic Association.
Of the 173 people who completed the survey, 56 were students and 117 were employees. About half of the participants had type 1 diabetes; the remainder had type 2.
The study had some limitations, most notably its small, homogeneous sample size, having been conducted on just one college campus, where a majority of students are white and middle class.
Still, the findings support earlier research that diabetes distress is a significant issue and point to the need for more research among a broader student and faculty population, Beverly said.
About 27% of respondents with type 1 diabetes and 30% of respondents with type 2 reported high diabetes distress. Previous studies have reported lower levels of diabetes distress — about 22% — among broader patient populations.
Students reported higher rates of diabetes distress than faculty and staff, Beverly said.
Feelings of powerlessness, and stress about eating properly and adequately managing diabetes, were the most common concerns participants reported.
Many survey respondents showed signs of severe depression.
Food is something Reilly thinks about a lot, and is an aspect of college he anticipates he’ll need to approach with extra care.
“Any of the foods that wouldn’t be an issue for just anyone are an issue for me,” he said.
Pizza, for example, is loaded with fat and carbs. Reilly must plan carefully to adjust his insulin pump to accommodate the effect a slice would have on his blood sugar levels.
As he starts out in a new school, Reilly wants to make sure the new friends and classmates he meets don’t misunderstand what it means to have diabetes. He can’t eat whatever he wants whenever he wants, but he is still in control of his life.
“It is kind of a pain to deal with, but a lot of people that I come across are like, ‘Oh, you can’t do this, you can’t do that.’ And that’s not the case,” Reilly said. “I can do pretty much everything someone without diabetes can do. I just have to be careful.”