The teenage years are a time of physical, mental, and emotional growth. Like all times of transition and change, the going can get rough at times. For teens with diabetes, diabetes and its care can be one of the rough spots. Just as the changes happening in their bodies make maintaining blood glucose control more challenging, teens are often expected to take more responsibility for managing their diabetes. At the same time, the increasing demands of school, the possibility of holding a job, and the opportunities for a wider social life can make diabetes care seem relatively unimportant in the teenage mind. With all of these competing demands and pressures, some teens quit taking care of themselves.
When this happens, what is a parent to do? Understanding the global issues facing teenagers, as well as those particular to the teen in question, will help to address the problem. Here’s what happened to two teenagers as they hit their mid- to late teens.
Jessica is 15 and has had diabetes for 9 years. When she was much younger, her parents monitored her blood glucose levels, recorded the numbers, measured and supervised her food intake, and made frequent adjustments to her insulin doses. Her blood glucose levels were reasonable, and her HbA1c test results were usually under 8.0%. (The American Diabetes Association recommended goal for HbA1c, a measure of blood glucose control, is less than 7% for most people with diabetes.)
Jessica never had a severe hypoglycemic episode that required treatment with glucagon (a hormone that raises blood glucose levels and that must be injected), and she only ever had ketones in her blood or urine when she was sick. (Ketones are acidic by-products of fat metabolism. Their appearance in measurable amounts can indicate that a person doesn’t have enough insulin in his system to use glucose for fuel effectively.)
As a child and preadolescent, Jessica seemed to accept her diabetes. She told her friends about it, was interested in carrying out her diabetes care tasks properly, and could be trusted to take care of herself when her parents weren’t around. When she turned 12, her medical team and family decided to start her on insulin pump therapy. Jessica was thrilled with her new pump and the freedom that it brought her. Her parents were pleased that Jessica was capable and responsible about caring for herself, and although they knew the teen years could be rough, they fully expected that Jessica would be able to handle her diabetes and her pump.
However, as Jessica moved into her teens, her behavior around her diabetes care changed. She became increasingly secretive about it, often had to be reminded to take her bolus insulin at mealtimes, and stopped keeping track of her blood glucose levels. When her parents asked about her insulin regimen or blood glucose levels, she became angry. In addition, Jessica’s activities often kept her away from family meals, and when she didn’t eat regular meals, her parents noticed that she grabbed food and snacks on the fly.
When Jessica and her parents came for her regular diabetes appointment, she sat sullenly in the doctor’s office with her arms folded across her chest. She had no comment when she was told that her HbA1c was now 10.5% and that she had ketones in her urine.
Chaz is a 17-year-old who was diagnosed with Type 1 diabetes when he was 11. His HbA1c was usually around 8.5%. Chaz had never been interested in his diabetes management and had been resistant to following any kind of meal plan or learning how to count carbohydrates. His parents felt as though they constantly nagged him about his diabetes care.
This year, as he moved toward high school graduation, the situation got worse as he allowed school pressures and senior activities to get in the way of his diabetes care. He admitted to being scattered, disorganized, and random in his approach to caring for his diabetes. He readily acknowledged that he skipped injections during the day when he “didn’t have time” to do them or couldn’t find his supplies, and he also often skipped his basal insulin at bedtime because he fell asleep before taking it. At his most recent medical appointment, his HbA1c was 11.7%.
At the root of the problem
Most parents of teens with diabetes will tell you that to one degree or another, they have seen similar behaviors. What happens to a well-intentioned, well-cared-for kid that causes him to quit caring about his diabetes? Maybe it isn’t that he has quit caring about it, but that he can’t make it the priority that it needs to be. There are probably as many reasons for lapses as there are teens, but there are some common issues that contribute to poor diabetes management during adolescence. Here are some of them:
We live in a sped-up world. People are busier than ever, and we encourage our children to be busy and involved. Most high school students not only have academics to think about but also sports, extracurricular activities, college entrance exams and applications to work on, and a job. They have little time for themselves, and most of the unscheduled time they do have is spent communicating online, text messaging, or phoning friends. Today’s teens are stressed, fatigued, and often have difficulty keeping up with the things they want to do, let alone the things (such as diabetes care) that they do not really want to do.
Teens are risk-takers. It has long been known among developmental experts that risk-taking behaviors are a big part of adolescent behavior. Part of adolescents’ make-up is that they don’t think bad things will happen to them, and they also have difficulty delaying gratification. Teens have a tough time doing something — or not doing something — today because it will have an effect on them in the future. Alcohol consumption, tobacco use, other drug use, unprotected sex, and other risky behaviors are common among teens. When it comes to diabetes care, skipping blood glucose monitoring or insulin injections may be a way of testing the limits, or it may reflect a teen’s inability to consider the potential consequences of these actions when he’s preoccupied by something else.
Independence struggles abound. One of the normal and universal tasks of adolescence is to separate from parents and to form one’s own identity. This includes not only pursuing individual interests and forming one’s own opinions and values, but also having more physical independence. However, parents remain legally and morally responsible for their teen’s safety and health, and when a teen has diabetes, parents need to supervise and stay involved to make sure that the diabetes tasks are getting done. Not surprisingly, staying involved in diabetes care while simultaneously loosening the reins in other areas can be difficult. Some teens resist parental involvement in their diabetes care to exert their independence generally. In addition, diabetes care issues can become a focal point for conflict, even if the real sources of conflict have little to do with diabetes.
Diabetes care is not a priority. Adolescents with diabetes have trouble making their diabetes a priority in their lives. It is not that they don’t care about it, but they tend to care more about other things, such as fitting in with their friends, not being noticed for having diabetes, and not being different from their peers. They usually do not want parents, friends, and teachers to focus on their diabetes, and when there is focus on it they can be easily embarrassed. They care about their activities, sports, friendships, and, hopefully, class work. If diabetes care fits easily into the day, it might happen. If not, it might not happen.
Diabetes care is complicated. Today’s diabetes care regimens are more complicated than regimens in years gone by, when one, two, or three injections of insulin a day were the norm. Most teens are now encouraged to inject both a basal insulin once or twice a day and fast-acting insulin at meals or to use an insulin pump. They are asked to check their blood glucose level four or more times a day, count carbohydrates, eat healthy foods, exercise, carry supplies with them, maintain an insulin pump, and keep records of their blood glucose levels.
Although these therapies have the distinct advantage of providing a better match between insulin, food, and exercise, they require time and constant attention. And teens are notorious for not being able to attend constantly and consistently to anything! Most are not particularly good at it. How often do teens have to be reminded to pick up their laundry, take out the garbage, or do other chores? In many cases, a complicated, modern diabetes regimen is more than an adolescent can handle on a sustained basis.
Tips for helping your teen
The good news is that most teens who have periods of giving up on their diabetes care eventually mature and start to do better again. There is often a struggle around the transfer of responsibility that typically occurs between 13 and 17 years. Kids whose parents took full responsibility for their diabetes care when they were children are accustomed to having someone else do it for them. It takes some time and maturity for them to begin to consider themselves responsible for their diabetes. In the meantime, here are some suggestions that may be helpful while you wait for your teen to take hold.
Stay involved. Most teens (and adults, too) don’t do well with diabetes tasks unless someone is helping to encourage them and make them accountable. To help your teen take charge (without feeling abandoned to figure it all out on his own), ask your teen what is helpful for you to do and what is not. Make a point of repeating this conversation from time to time, even if things are going well. Your teen’s needs will change over time: He may need you to do more during stressful times such as final exams, or less, as he decides that taking more responsibility is worth the increased freedom he gets as a result. If you see that diabetes care tasks are not being done, let your teen know that you’ve noticed, and ask what’s going on. Then listen carefully so that you can help your teen work out a solution.
Find a health-care provider your teen likes. A strong relationship between your teen and his doctor, diabetes educator, or dietitian is critical, both to the health-care provider’s ability to evaluate and motivate your child, and to your child’s ability to communicate with the health-care provider. Do your best to choose health-care providers who listen to what your teen has to say and who are willing to offer alternatives based on your teen’s preferences. If you see your teen listening silently to a plan of care then failing to follow it once out of the office, it may be that your teen doesn’t feel safe objecting to the plan or asking for accommodations. He may need some help with speaking up, or he might do better with a different health-care provider. However, it may also be that he feels uncomfortable expressing his needs or concerns openly in front of you. So don’t hesitate to allow your teen some time alone with his health-care providers.
Help your teen be accountable. I’m not suggesting that parents be the “diabetes police” but rather that the family work together toward helping the teen be responsible and accountable for the required tasks. Your child knows that the tasks are important and may skip them to test you to see how much you care. He is more likely to do a blood glucose check or take an injection if he knows you will be checking up on him. So let your teen know that you will be checking his meter memory or uploading his pump data to a computer periodically to see how he is doing. Many teens will not object to this accountability strategy when given advance notice. Even better is to let your teen know that you would like him to do the uploading and to review the data from his meter or pump with you at a set time each week. In this way, you can problem-solve issues together and strategize solutions to problems such as missing insulin doses. Your teen also should understand that the information may be communicated in some way to his health-care provider.
For teens whose diabetes is not in control, it can help to obtain HbA1c tests more frequently than every three months (the usual recommendation). A rising HbA1c can alert parents and teens to the need for action, while a decreasing HbA1c shows that diabetes control is improving and provides motivation to keep up the effort.
Help your teen fit diabetes care into his life. If your child is too busy or too disorganized to perform his diabetes care tasks, help to show him how it might be done. He may need to drop an activity — at least temporarily — to regroup. He may need some help with the organization of supplies or figuring out how to have time to take care of himself.
Stephen recently quit checking his blood glucose at lunch because he did not carry — nor did he want to carry — his meter with him, and it was out of the way to get to his locker, which was in another building, far from the cafeteria. When it became apparent that he was not monitoring his blood glucose level at lunch, and his diabetes control was suffering because of it, his parents asked him to strategize some possible ways to fix the problem. His sister suggested that he keep a meter in her locker, which was right next to the cafeteria. Nice sister…problem solved!
At times it may be helpful to give your teen a break from total responsibility for his diabetes care by giving him an injection, counting his carbohydrates for him, or setting out his monitoring supplies.
Simplify the regimen. When a teen is on a complicated insulin regimen, such as taking four to six injections a day or using an insulin pump, and isn’t doing well, it is often best to step back a bit to something easier. It is better to take three injections a day and get all your insulin than to supposedly be taking five injections a day and miss a couple of them. Some teens may need to take a break from their pump for a while if they can’t sustain the effort. Sometimes the flexibility of pump therapy normalizes life to the degree that kids forget they have diabetes — and consequently forget to take bolus insulin doses. If your teen isn’t sticking to his diabetes regimen, talk to your physician or educator about simplifying it.
Consider yourself. Think about your own feelings, expectations, and behaviors regarding your teen’s efforts to become more independent. Might you be holding the apron strings too tightly? Do you feel ambivalent about letting go? Are you giving mixed messages about your teen taking on more responsibility?
Parents often know they must encourage their teens to stand on their own two feet, but they have great difficulty doing so because of fear that their child will not rise to the challenge. Some parents prefer to be the ones in control for other reasons. And some parents — often inadvertently — convey the message that they are not interested, not willing, or too busy to be involved in their teens’ diabetes care. A close look at yourself may help to explain some of your teenager’s behavior.
Seek counseling. Depression is often the reason that a teen quits caring for himself. A teen who is depressed may or may not have other symptoms of depression such as crying, anger, and changes in appetite or sleep habits, but a teen who quits taking insulin and quits caring for his diabetes is sending a clear message that he needs help. It may not be diabetes causing his depression, but diabetes care suffers because of it.
Some adolescents, especially girls, omit insulin doses as a way to control their weight. This is a very dangerous practice that can lead to serious health problems. Like girls who have eating disorders, however, teens who are omitting insulin are often reluctant to admit it.
Back to Jessica and Chaz
As it turned out, Jessica was not doing well with her diabetes because of her overpacked schedule and her desire to lose weight. However, when she skipped regular meals to cut calories, she got hungry and started snacking. Then she didn’t know how much insulin to take, and she also didn’t want to develop low blood glucose. Her “solution” was to omit her insulin. When she did, she discovered that she could eat more than ever and not gain weight, which encouraged the behavior. But her high HbA1c result and ketones showed that there were serious consequences to what she was doing.
After a long discussion with her doctor, Jessica agreed to give up her pump for a while and also to eat regular meals. She agreed to drop her involvement in drama club, which was the activity that caused the most disruption in her schedule. She and her family worked out a meal schedule that accommodated her other activities most of the time. She also saw a dietitian for suggestions on appropriate amounts of food. Although psychological counseling was suggested, she wanted to see how things would go without it, and her parents agreed to oversee the plan. Jessica was relieved to know that she had help in her self-care and that she, her health-care team, and her parents could all come up with a plan that could work for her.
Chaz started doing better after he agreed to carry a small meter and an insulin pen in one of the pockets in his cargo pants. With his doctor’s advice, he also moved his basal insulin injection from bedtime to morning, when he would be more reliable about taking it. He also asked his girlfriend to help him be accountable about monitoring and, as it turned out, she was more effective than his parents were in this role. Chaz also was maturing as he prepared for high school graduation, and he started to realize that his life and health were dependent on him.
Being there for your teen
The physical and developmental turmoil of adolescence is almost universally a rough time for parents and teens. Teens with diabetes are at additional risks during this period. If you see that your teen is skipping diabetes care tasks, delivering a lecture or policing his activities is unlikely to be helpful. Instead, one of the best things you can do is to try to engage your child in a conversation about it and attempt to understand his feelings, thoughts, and frustrations. Sometimes, just knowing that there is an interested parent or other team member available to support and encourage him is all that is needed.