One moment, our young friend Laura Bernstein, then an eighth-grade student here in Tampa Bay, was sitting in class doing her schoolwork.
The next her teacher grabbed her insulin pump and started walking away.
Laura has had Type 1 diabetes since she was 9. Her insulin pump is, literally, her lifeline, supplying her with the insulin that her body can't.
Laura grabbed her insulin tubing and shouted for her teacher to stop. The problem was soon cleared up: He thought her pump was an iPod and quickly returned it after Laura explained that she had diabetes.
Problem solved — except that Laura was forced to defy a teacher, explain her medical condition to all of her classmates and experience, once again, how hard it can be to advocate for yourself when you're a young person living with a chronic illness.
Nothing about living with a chronic illness is easy … especially when you're in your teen and young adult years. The life transition from being a child to an adult is difficult for everyone, but is a unique experience for those living with illnesses such as diabetes, asthma, food allergies and others that require continual attention and monitoring. The courage needed is astounding. Then, there is the loneliness. At times, it seems impossible for the person with disease to be understood.
Even if you have adapted to living with chronic illness from a young age, you can find yourself feeling more alone and "out-of-the crowd" than your peers. It may not always feel possible to fully participate in the same activities, and common events like prom, going out to eat with friends, parties, or sports can become an issue.
Young adults with chronic illness may find themselves in difficult situations: They need to find a corner to use their inhaler or measure their blood sugar level, or unintentionally become the center of attention when they have to double-check ingredients in a restaurant. Living with chronic illness feels like a weight that never goes away.
Some cope by downplaying their illness and pretending it's not a problem. Others talk about the topic frequently, or limit their activities because of fear of what may happen to their blood sugar or breathing from dancing at prom or having alcohol at a party. Others even take dangerous risks because they don't want to feel different and excluded from social events. They might not ask about the ingredients when they order a meal, despite their food allergies, or go on a hike without their inhaler or asthma medication.
Living with a chronic illness is, in part, living another life. One where you tell certain people and not others about your illness; where you constantly have to think whether you can do certain activities and what you need in order to do those activities; whether you can trust certain people in the event you get sick; whether you have enough medicine. There are a lot of "if's" in the life of a person living with chronic disease. Feelings of uncertainty can predominate decisions, especially when things go wrong.
Amanda Mezer, a college student from Tampa, recently had her own alarming experience. Amanda has had Type 1 diabetes since she was 6. While living in student housing she experienced severe bullying from her roommates related to her diabetes. The roommates claimed she was a danger to their well being and an annoyance because of her diabetes regime; the school later took this stance as well.
The "evidence" for their claims? Amanda, like many other young adults with diabetes, wears an insulin pump and a glucose sensor. She left a few glucose test strips on the floor and put her used insulin pump tubing in the dorm room's trash can. Neither posed even a remote threat to anyone.
Amanda is using the latest technology to make sure her health is maintained. To be penalized by her roommates and eventually the school for taking on this responsibility highlights the need again for greater understanding and support for students with special health challenges.
These stories emphasize some of the challenges of living with a chronic condition like diabetes. That is why Bringing Science Home's Students with Diabetes is such a groundbreaking effort. Begun by former Miss America Nicole Johnson and funded through a gift from the Patterson Foundation, this initiative recognizes the connection between living with illness, stress, environment, and daily behavior. Students with Diabetes aims to help college students learn skill sets for succeeding despite living with a chronic disease. This amazing effort links the bridge between clinical care, and positive success building. It shows young adults how to live positively with illness, so they understand they can do anything they want.
The college organization exists on college campuses across the country, with the founding chapter at the University of South Florida in Tampa. The mission is to help young adults with diabetes launch into independent life with confidence and optimism. Students with Diabetes is currently a college student group, but is beginning the first teen chapter in the Tampa Bay. This fall, the first chapter of Students with Asthma group will start. It will address skill and success building in college, similar underlying concerns as the Students with Diabetes group.
Students with chronic illness face enormous challenges outside the health clinic. The struggles of daily life, learning to manage relationships with peers, and learning to advocate for oneself are profound.
For more information, visit www.studentswithdiabetes.com.