“The teenage and young adult years were the hardest of my life,” says Emily Coles, diagnosed at age 3 with type 1 diabetes. “I was furious — diabetes made my life so much harder than the lives of my peers.”
Emily’s experience was a common one. Adolescence and young adulthood (approximately ages 13 to 28) is often the most dangerous and difficult time of life for a person with type 1. According to a study in the Journal of Pediatric Psychology, adolescents with type 1 have high rates of both depression and anxiety. Other research has found that only 14% of those with type 1 ages 18 to 30 meet their A1C targets, the lowest rate for any age group. They are also more likely than older patients to be hospitalized or to die from DKA (diabetic ketoacidosis).
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Lucile Packard Children’s Hospital at Stanford University advises parents, “The teen years can be a challenge for any child and more of a challenge for teens with diabetes. Teens want to fit in. Being different in any way from his or her peers can be stressful.”
If their friends want to stop on the way home from school for a pizza, what should a young adult do? Teens need help to learn to manage such situations.
Even with good management skills, glucose control is especially difficult in adolescence. High levels of bone and muscle-building growth hormone (GH) block the action of insulin and cause blood sugar levels to swing out of control. Unpredictably high readings can stress adolescents to the point of giving up.
Sometimes, emerging adults rebel against the demands of managing diabetes. Jennifer Walker, who was diagnosed at age 8, remembers, “When I went to college out of state, I wanted to feel as care-free as any freshman, away from the watchful eyes of parents. I stopped taking my shots and got what I deserved — frequent hospital stays. Mom threatened to take me out of school. That was the end of my rebellious stage…I thought.”
Emily Coles rebelled differently, as a result of her need for independence. “When I was a teenager,” she says, “I developed a compulsive overeating disorder, and it was horrendous for my glucose management. My parents had been laying out three diabetes-healthy meals a day, and that was all I ate. When I was 13 or 14, they stopped. I could get my own food. I realized I could eat away from the meal plan and I wouldn’t die right away. The world wouldn’t end if I ate a whole bagel. I might feel bad if my sugars went up, but I could assert my independence and control, and that was more important to me than how I felt physically.”
Barbara Anderson PhD, and Howard Wolpert, MD, wrote in Diabetes Care, “The overwhelming changes in the first phase of the young-adult period include graduating from high school, moving away from home, beginning new educational directions, and beginning to work and to be self-supporting. These challenges are often a distraction from the demands of managing diabetes.”
For a person with type 1, moving away from home safely involves ongoing work and planning. Emily Coles says, “As a child, diabetes meant making sure my peers and teachers knew I had special needs, that I was different, and that if I started acting strangely, I needed help. Any time I’m in a room without my parents, there has to be someone there who knows I have diabetes. As an adult, it’s still huge.”
As a result, it can be a tremendous adjustment for a young person with type 1 to live alone. Jennifer Walker says, “You have to grow into it, and find your confidence. I had a roommate for 2 years after college, so if/when things happened, I knew I wasn’t by myself.”
Type 1 can put barriers in the way of finding work. According to JDRF, you don’t have to tell prospective employers or co-workers about your diabetes, but probably should if you need accommodations, like short breaks to test sugars or give insulin. JDRF’s work webpage points out that employers may have misconceptions about what people with diabetes can and can’t do — “Can you drive?” — but they can be educated, and that the qualities diabetes develops in people, such as discipline, patience and regularity are highly prized by employers.
Dating and starting relationships with diabetes brings additional challenges. What do you tell potential partners about diabetes and when do you tell them? Do you inject or check blood sugar in front of them? Should you show them your monitor and/or pump? “When I was in high school,” remembers Jennifer Walker, “on my first kiss, my date asked if he could catch diabetes. I didn’t know if should feel hurt or angry.” Those who wear insulin pumps and CGMs may get self-conscious about them, though other people usually don’t care.
Thinness is so prized in our society that some young people will cut back or stop taking insulin in order to lose weight, a condition called diabulimia. They may think weight loss will make them more attractive and gain them better treatment from others, but the high sugars that come from this practice can hasten complications and death.
Graduating from pediatrics
One of the traumatic things about becoming an adult with diabetes is moving from pediatric care to adult medicine. Wolpert and Anderson write, “The adult medicine culture is generally less forgiving of the behavioral and developmental struggles of the patient, and this can be unsettling to some young adults. In addition, many parents are unnerved by the abrupt change in their role when their child ‘graduates’ from the more family-focused pediatric environment.” The stresses of life changes and diabetes lead many young patients to stop seeing their doctors for long periods, a recipe for disaster.
Jennifer Walker says, “Changing from pediatrics to adult was awful. My pedi was everything to me. I clung to him; he explained things to me. The adult doctors were just throwing things at me. ‘Let’s try this,’ they would say, without explaining anything. Fortunately, I have a good one now.”
Some pediatric clinics will help patients who are “graduating.” Joslin Diabetes Center in Boston has a transition program which helps families adjust to the change and find adult providers who understand the issues of young adults. It’s important that the pediatrician communicates with the adult doctor. Get your pediatrician’s help with this.
Growing into adulthood often endangers medical insurance coverage. Because of costs of care such as insulin, aging off parent’s insurance plans can be life-threatening for people with type 1. People may die while trying to ration insulin or go without.
It’s possible to plan ahead and prevent such crises. The American Diabetes Association has excellent information and resources on insurance. Several states have programs like California’s MRMIP (Major Risk Medical Insurance Program) that help people pay for insurance. And there are much cheaper, older insulins available, although they are not as easy to use as the newer, high-priced ones.
Does type 1 make you stronger?
Like any life challenge, type 1 diabetes can make people stronger and more focused. Emily Coles is now 44, runs a successful dance studio, and studies marine biology. She says, “Diabetes created my system of priorities in life. A whole lot of things that people get tied in knots about, I don’t think are important. When we go on a trip, my partner’s measure of success might be ‘Did we do everything we set out to do?’ Mine might be, ‘Did I die?’ Diabetes makes you tougher. It’s a lifelong practice of getting bad news every day and figuring how to act based on that news. Doing what you need to do and then moving on.”
Jennifer Walker was a graphic designer for 20 years and now teaches English to second graders. She remembers the advice she got from her doctor years ago: “You have to give yourself a chance to mourn that you have diabetes and your life was changed. You will make mistakes, but you’ll get through it.” She adds, “You’ll do some irresponsible stuff in your lifetime, but never be so irresponsible that you can’t fix it.”
Lucile Packard Children’s Hospital reminds parents and patients that managing diabetes can be part of young people’s taking control of their lives and can help them grow into independent adults.