Durban - The teen years are a time of challenges. Peer pressure, school stress, unwelcome parental control and pushing the boundaries are a turbulent mix.
Throw diabetes into the equation and you are in for a bumpy ride.
Dr Kuben Pillay, a paediatric endocrinologist in Westville, even goes so far as to describe it as, for some adolescents, a “nightmare”.
“Teenagers want to be cool, like their friends, and diabetes makes them different,” he says. “They have to test blood glucose levels several times a day and inject insulin accordingly. This becomes difficult when they are trying to hide it from their friends.”
They are also at an age when they are more likely to indulge in risky behaviour, and diabetes does not take kindly to reckless management.
Westville teenager Eden Roughley, 17, has learned the hard way not to trifle with it. She was diagnosed with Type 1 diabetes at the age of four.
“I went into denial when I became a teenager,” she says. “Testing my blood several times a day and injecting insulin became a chore. Instead of testing daily, I would do it only a couple of times a month. I was hospitalised a few times because of this.”
Diabetes has taken its toll on Eden’s eyesight, one of the side effects of uncontrolled blood glucose levels. She has also developed an underactive thyroid and takes medication for it. But these complications have also been a wake-up call.
For the past few weeks, she has been monitoring her glucose six times day. She has also switched from insulin injections to using a small pump the size of a cellphone that she wears in her pocket, that delivers a measured dose of insulin through a canula in her stomach.
“It works better for me than injections,” she says.
She goes to gym before school and is following a healthy diet.
“I am taking it seriously, but it is still hard,” she says.
Some teens accept that diabetes is part of their lives and deal with its demands.
Shivani Ruthan, 17, of Westville, was diagnosed 10 years ago and says that although it was scary at first, she has accepted it.
She tests her glucose about six times a day and injects insulin accordingly.
“There are days when it gets tiring and, when my sugar is low, I feel dizzy and get headaches. However, having diabetes has made me more responsible. I go to gym most days and am careful about my diet.”
Cameron Baker, 20, of Summerveld, is an Enduro off-road motorcyclist, and during a five-hour race he will test his glucose when he stops to refuel. “Diabetes has made me lead a healthier lifestyle,” he says.
Rourke McGrath, 12, of Mount Edgecombe, is philosophical about his diagnosis.
“Some people have asthma, I have diabetes,” he says. “About six months ago, my sugar started spiking and I realised I was not testing as often as I should be. I now test six to seven times a day and set reminders on my phone so I don’t forget.”
Teenagers from disadvantaged communities have a different set of problems. They have poor access to diabetes education at local hospitals and clinics and many are not referred to regional hospitals in time.
Poverty is a huge factor, says Sister Pilile Dlamini, a diabetes nurse educator at the paediatric clinic at Inkosi Albert Luthuli Central Hospital (IALCH) in Durban.
“Teenagers may have to travel long distances to hospital for a consultation, insulin and testing strips, and transport costs for a mother and child can be prohibitive, so often the teen has to travel alone,” she says.
“People with diabetes need to eat a healthy diet, but when there is no money for food, teenagers will deliberately omit insulin and this can be life-threatening.”
Dlamini says that in childhood, the management of Type 1 diabetes is the responsibility of the parents, but in adolescence there is a shift in care towards promoting independence and responsibility for self-management, while parental involvement decreases.
At the same time, the teenager has to deal with challenges like puberty, peer pressure and the temptation to experiment with drugs and alcohol.
Most teenagers are also embarrassed about having diabetes. They feel different from their peers and the condition is not understood in many cultures and communities, she says.
“Most teens know how to manage their diabetes, but many of them are non-compliant.”
The HIV epidemic has also affected teenagers with Type 1 diabetes. Some become Aids orphans and head households with younger siblings. Some are fostered by relatives who have no knowledge of the condition.
Children with diabetes at IALCH are supplied with glucometers – small devices that measure the glucose in the blood – and when they attend the paediatric clinics, readings are downloaded on to the computer and doctors and nurses are able to see how well, or how poorly, levels are being managed. They also keep diaries of their glucose control. Not all hospitals and clinics have this level of service, however.
Westville dietician Kelly Francis says many teenagers say they are tired of monitoring what they eat and checking blood sugar levels.
“They need to eat regularly at the same time every day,” she says. “Irregular eating and skipping meals can adversely affect blood glucose levels.”
Pillay is acutely aware of the difficulties faced by adolescents and the relentless daily management of diabetes, from which there is no respite. While many teenagers with diabetes live responsibly, some indulge in high-risk behaviour.
“Drug-taking occurs in all socio-economic groups and cultures – they just use different drugs. They may abuse alcohol, but it will be different alcohol. Truancy is a greater problem in poorer areas.”
Another risky, secretive and increasingly common practice among teenage girls is the manipulation of insulin dosages to get or to stay slim.
Insufficient insulin means they will lose weight and when a girl wants to be skinny for her school dance, it is tempting.
“It is, in fact, an eating disorder and we should recognise it as such and supply the treatment and support needed,” says Pillay.
Many teenagers feel frustrated at being accountable to parents for diabetes control.
Bridget McNulty, editor of Sweet Life magazine and a Type 1 diabetic, says the daily challenges – eating the right food, getting enough exercise and trying to find balance in blood sugar readings – are heightened when you’re a teenager, not only because your hormones are running riot, which affects blood sugar, but also because of the social pressures of trying to fit in, the relationship between insulin and weight and, of course, wanting to rebel against your parents.
“A lot of the teenagers I’ve spoken to and who are part of our community on www.sweetlifemag.co.za and Diabetic South Africans on Facebook have said that they went through a phase of not being in good control because they wanted to assert their independence and were sick of their parents worrying about their diabetes. It’s perfectly understandable, but a really dangerous way to do it.”
Parents walk a fine line between over-protectiveness and natural anxiety.
Dawn Jordaan says she worries about her daughter, Alison, 14.
“Although Alison manages her diabetes well and has a great group of friends to help her, I worry a lot when she is not under my care. I allow her freedom to go out, sleep over at friends’, attend parties etc, and she has to be responsible with her diabetes. I do monitor and check her blood sugar readings when she comes home, and she has to message me her pre-bedtime reading as well as wake-up numbers. I leave most of the checking with Alison, and ask every now and then how her readings are.
“She also knows that if she is struggling, she can come to me and we can look at what’s happening and make necessary adjustments. She has a CGM (continuous glucose monitor) with her insulin pump, which helps tremendously.
“I would advise parents to allow their teens some freedom to show how capable they are, but be prepared to help when needed. During stressful exam times or when they are ill, we need to take over and help.
“Lots of praise when things are going well, and support when things are not, will ensure that teens and parents work together towards the same goals.”
The two types of diabetes