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
* Type 1 diabetes is an auto-immune condition
that occurs when the pancreas stops producing insulin. It usually starts
under the age of 30 and the onset is sudden. People with Type 1
diabetes must inject insulin to survive.
* Type 2 diabetes occurs when the insulin is
either insufficient or does not work properly. Approximately 85 to 90
percent of people with diabetes are Type 2, and many people who have
this condition are undiagnosed. It was formerly recognised as an
adult-onset disease, but now occurs in children and teenagers too,
because of unhealthy diets and lifestyles.
* Symptoms: Frequent urination, excessive
thirst, increased hunger, unexplained weight loss, fatigue, poor
concentration, numbness in hands or feet, blurred vision, frequent
infections and slow-healing wounds.
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