Most parents feel the safest when their child is at home sleeping. But that’s not necessarily the case when the child has Type 1 diabetes.
“You’re worried that they might not wake up in their sleep when their numbers go low or go high,” said Pauline Levy, whose 16-year-old son is diabetic.
Individuals with diabetes could go into a coma if their blood sugar, left untreated, goes too far out of range for a sustained period of time, she explained.
And so begins the list of worries that starts for some families when their sons or daughters are not even 2 years old. By the time many diabetics reach their turbulent teens, parent-child tensions have created stress levels so high that depression sets in and never seems to leave.
The stress, combined with despondent thoughts of “Why me?,” can sometimes be overwhelming, according to one researcher, who adds that when adolescents start to spiral into a negative outlook, they may end up “giving up on their dreams for no reason.”
For Levy and son Lee, parts of the scenario are all too real. “You hear a commercial for diabetes,” she said, “and it’s about all the horrible things that can happen to you when you have high blood sugar.”
Her concern for Lee’s future increases when he doesn’t manage his blood sugar properly.
“Lee can’t wear a Continuous Glucose Monitor,” Levy said. “His skin can’t tolerate adhesives without getting a rash.”
The device can monitor a diabetic’s blood sugar 24 hours a day, said 44-year-old Ginnie Flynn. Flynn’s 13-year-old daughter, Caroline, has a Continuous Glucose Monitor to help manage her Type 1 diabetes. If levels go too high or too low, it beeps and sends an alert to an app on a smartphone.
While awake, many diabetics can feel drastic changes in blood sugar.
“When I go low, I feel shaky and lightheaded,” Caroline said. “When I go high, I go to the bathroom all the time and have a wine-like smell to my breath.”
In addition to being conscious of how they’re feeling, diabetics also have to meticulously weigh and count how many carbs are in everything they eat. But unlike those with Type 2 diabetes, the sugar in a candy bar has the same effect as the sugar in a piece of fruit, Caroline’s mother said.
According to the American Diabetes Association’s website, about 5 percent of the population has Type 1 diabetes. Former Chicago Cubs player Ron Santo died due to complications of this genetic condition.
While many diabetics wear Continuous Glucose Monitors, those who can’t are forced to check their levels “the old-fashioned way,” by drawing blood multiple times a day to get a blood sugar reading, Levy said.
“Lee’s a teenager now, and like most teenagers, he’s a little bit rebellious,” Levy said. Sometimes, Lee either doesn’t take the proper amount of insulin or he refuses to catalog when his last injection was.
“We have to write everything down in our phones,” Levy said.
That information is then relayed to Lee’s endocrine specialist, who meets with him four times a year to help monitor his eating habits.
“When his numbers are too high, we’ll ask him basic questions somebody responsible managing his disease would be able to answer,” Levy said. And when he doesn’t have an answer, she said it “can cause a lot of stress in the family.”
Dr. Jill Weissberg-Benchell, a child psychologist at Chicago’s Lurie Children’s Hospital, said parent-child tensions are common in households with a diabetic child. Adding to potential resistance on the part of the children, “there are any number of factors that can affect your numbers on a daily basis,” she said. “You could be doing everything right and still be sky high.”
Because parents are worried about their child, they ask a lot of questions.
“This can sometimes cause children to feel persecuted, even though it comes from love,” Weissberg-Benchell said.
For the teenagers with Type 1, stress is everywhere. Mental and emotional stress is common enough in teenagers without the added burden of medical concerns. Levy said her son frequently has to step out of exams halfway through because his levels are too low.
The stress of the condition “basically runs our whole life,” said Catherine Williams, 51, mother of three Type 1 diabetics. John, 17, was diagnosed at age 11. Peter, 16, was diagnosed at age 10. Emmett, 12, was the earliest to get diagnosed, when he was 5 years old.
Peter was diagnosed shortly after his younger brother. “His initial reaction was, ‘Now, I can do it with you,’ ” Williams said. Emmett, who can’t remember not having diabetes, and Peter have kept fairly positive outlooks as they have gotten older.
The oldest of the three, John, has had a harder time. Now that he’s in high school, “John is in a complete and utter denial and angry phase,” Williams said. The nurse at his school is able to monitor his blood sugar levels, but he receives Cs and Fs because “he’s just so angry,” she said. “This illness is stopping him from living his life.”
According to Weissberg-Benchell’s research, “Teens with diabetes have a higher risk of depression.” Doctors are unsure whether this increase is due to the stress of keeping up with their medical condition, or due to a biological shift in blood chemistry.
She said psychologists employ a practice known as “cognitive behavior therapy” to help adolescents understand their automatic reactions to distressing events. The ultimate goal is to help the child find a healthier way of looking at the situation.
“I don’t know a single diabetic who didn’t have a depression in high school,” said 33-year-old Andrea Fiore, a Type 1 diabetic since age 11. She suspects it has to do, at least in part, with the hormonal changes that take place during puberty.
Exercise can help manage blood sugar numbers. Fiore’s son takes swim classes, Williams’ sons all play sports, Flynn’s daughter takes ice skating lessons and Levy’s son plays basketball. But it’s not a miracle fix.
For Fiore, puberty started a downward emotional trend that took her years to recover from.
“I had raging hormones and the disease, my A1c’s were through the roof,” Fiore said. “It led to a depression, I beat myself up because I wanted to be perfect.”
She said she went through a period of denying she had diabetes. That resulted in multiple seizures per year because her blood sugar was too high. “I was hospitalized, and I self-medicated.”
Fiore hit “rock bottom” at 21. “I needed to get sober and get my life together.”
She hopes her son won’t have to go through the same troubles she did. Hunter is 4 years old, but was just 22 months when he was diagnosed with Type 1 diabetes.
“It was absolutely devastating,” Fiore said, especially because she knew what this diagnosis meant for his future.
Hunter was too small for a Continuous Glucose Monitor, so “for the first year, he was on daily injections,” Fiore said.
Fiore, Williams, Flynn and Levy all expressed hope, thanks to rapidly changing technology and a growing awareness of Type 1 diabetes. Williams, who has 10 children, said her oldest daughter just entered medical school.
“I’ve got several kids who want to go into medicine,” Williams said. “They want to find a cure.”
Caroline, 13, is actively involved in raising awareness. She created a curriculum for different grade levels at her school to teach other students about the condition.
“I went through a period where I wasn’t taking good care of myself,” Caroline said. “I was sneaking food all the time without covering for it [with insulin injections].”
But after befriending a kindergartner with Type 1 diabetes, her whole outlook changed.
“She looked up to me, kind of thinking I was perfect,” Caroline said. That friendship, together with her commitment to ice-skating, motivated her to take better care of her blood sugar levels.
