Ana, a 16-year-old high school student who lives in New York City, was diagnosed with type 1 diabetes at the age of 10. Her older brother, Nick, had just been diagnosed, and Ana soon learned that she, too, had the disease. Ana and her mother, Angie, recently spoke to AJN about living with and managing diabetes.
"At first, it was hard to learn that I had a life-changing disease," Ana said of her initial diagnosis. "But it was a little easier because my brother had already gone through it." Today she is at an age where she can have greater autonomy in managing her condition. She uses an insulin pump and checks her blood glucose levels three to four times daily. Although her glucose levels sometimes reach too high or low, they are usually within her target range. "I tend to manage the physical aspects," she said, "although my parents keep reminding me to do my checks."
Although Angie worries about her daughter, she is happy to have Ana take on this responsibility. "It's very important to me that Ana become independent," Angie said. "That doesn't mean that I don't check up on her, but she needs to be able to manage the condition by herself. After all, she's going to college next year."
Ana started off using an insulin pen but later changed to a pump. While her mother feels the pump offers better management control, Ana sometimes feels concerned about its bulkiness. She finds that it gets in the way when she is dressing up, for example, or when she wears jeans.
"I sometimes get embarrassed at school when it shows. In grammar school, a boy once saw my pump and called me a robot. I don't like checking my blood in front of my friends. Even with my friends who understand, I sometimes hide it."
Some of the embarrassment, she says, stems from her classmates' lack of knowledge about type 1 diabetes. According to Ana, the children at her school sometimes confuse type 1 with type 2 diabetes and think patients bring it on themselves through an unhealthy diet. They also mistakenly think she is not able to eat any sweets. "People will say, 'Why do you have diabetes? You're not overweight, and you play basketball.' They don't understand that it's genetic."
"There is a lack of education," her mother agreed. "In grammar school, Ana was the only person with type 1 diabetes, and the other children didn't know anything about the disease. When teachers talked about diabetes in school, it was mainly about type 2 diabetes. Parents didn't seem to know how to explain to their children what it meant."
Although Ana is well aware of the importance of managing her diabetes, that doesn't mean it's always easy. She says it's sometimes hard to check her glucose levels between school and other activities. But it's not something she can forget about, even briefly. "You can't just put it away. You can't say, 'I don't feel like doing this today,'" Ana said. Her mother agreed: "You have to manage it, not let it manage you."
And there are added challenges for a teenage girl. Comparing her son's experience with Ana's, Angie said, "It's been so much harder for Ana as a girl. My son would have changes in his blood sugar levels if he was stressed over a test, for example, but Ana has many changes related to her monthly cycle, and it's different every month."
There are positive aspects to dealing with the disease, however. Ana says she loves her health care team (which included Jeniece Trast, author of the accompanying article) and checks in with them every three months. They help make sure she stays on track. Luckily, the family has good health insurance. "I cannot imagine how people without insurance pay for everything you need to manage diabetes," Angie said.
Every summer, Ana attends a camp for children with type 1 and type 2 diabetes, where now she's old enough to be a counselor. "It's my favorite week of the year," she said, "just knowing that every single person there is like you. All of us check our glucose together, we take insulin together, we talk about recent concerts we've been to. We don't feel different."
Ana also doesn't let her diabetes slow her down. She is very active, walks everywhere, and is on the high school basketball team. "But I have to check my glucose levels after playing sports because adrenaline can cause highs," she said.
Asked what message she would most like to share with other people who have type 1 diabetes, Ana said, "It sounds like a cliche, but I would say not to give up. There have been times when I've wanted to give up, I just felt tired of it. But there's only one way to look and that's up. You might have diabetes for a reason-you might be the next person to find the cure for diabetes."-Amy M. Collins, Editor