When it seems that no amount of talking, pleading or threatening re-motivates teenagers to get back on track with their management. They stop testing their blood glucose levels and fabricate a number if anyone asks what their blood glucose is, and they may become belligerent or even very angry when a parent asks them to test.
They accuse parents of nagging, and disregard any concerns the parent may have. Some even stop having regular insulin and only have an injection when they are about to go into diabetic ketoacidosis (DKA). The higher their glucose levels are, the more irritable they get. They may start missing school because they don’t feel well, which means they could start failing academically. They eat whatever comes their way without a thought. They stop doing sport and don’t seem to care about their diabetes one way or another.
What brings a teen to the point of giving up?
There are many reasons, such as:
- For the teen that has had diabetes since early childhood, he or she still has to integrate diabetes into their newly forming personal identity. For some, it is just not acceptable and they try to let it go.
- Many teens try to manage their diabetes well until they reach a point where it becomes overwhelming and they choose not to care about their diabetes any more. In this case, it is a defence against being overwhelmed.
They may feel guilty about it, but the burnout feeling is stronger.
- Some teens want to avoid all thoughts of diabetes because it triggers so much anxiety. This is another defence against being overwhelmed.
- Some teens just don’t want all the responsibility of managing diabetes – they want to be carefree and enjoy their teen years as others do.
- For others, it may be rooted in the feeling that if they go into a denial of sorts, they can live like everyone else and not feel so different or isolated. They adopt a laissez-faire attitude towards their diabetes.
- Some teens may develop apathy towards their diabetes, especially in social settings, as they try to feel accepted by their peers.
- They may have feelings of shame and humiliation about having diabetes which makes them want to avoid managing it.
- When teens have developed a tendency to judge their blood glucose readings as ‘good’ or ‘bad’, they may prefer to take a ‘don’t care’ attitude about the readings, or stop testing altogether to avoid feeling ‘bad’ when the reading is high.
- For teens that have been made all too conscious of the impending complications if they do not manage their diabetes properly, it may be that they develop apathy because they fear the complications and they’re defending against their fear.
- It may be the all-powerful feeling of youth – “It won’t happen to me and even if it does, I don’t care!” They want to live for the moment and not always be conscious of their future.
- Sometimes apathy may be due to just plain fatigue. Balancing school work, studying, social interaction, sports, and the constant management of diabetes gets exhausting for some teens. They can take breaks from all the activities during school holidays, but they cannot take a break from their diabetes. Their health depends on getting it right. If they reach a breaking point, also known as ‘burnout’ or ‘going on strike’, they give up everything, including caring for their diabetes.
- When teens with diabetes have a second or third condition to contend with, such as coeliac disease or attention deficit disorder (ADD) or epilepsy, the demands of managing diabetes can become overwhelming.
- Teens who are depressed will have no interest in managing their diabetes.
- Teens who are abusing drugs or alcohol will not take adequate care of their diabetes. Their senses are dulled as is their brain activity and diabetes is the last thing on their minds. These teens need specialist treatment for their addiction.
- If all the above reasons have been eliminated, then it may be that the teen has become desensitised to the importance of good control and has become lax in applying good management.
What do parents do?
Some parents have tried backing off and giving the teen some space to find their own way, yet it seems that some teens allow their blood glucose to get more out of control if no one is concerned.
One mother said, “When I ‘back off’ and give him some space, his sugars get even more out of control. He won’t go to school, he can’t get up or stay awake (I think from high sugars), and he gets very, very angry when I ask him to test. It’s turning into a power struggle and he is making this about me nagging him, not about his health.”
When parents notice that the teen has lost interest, they could suggest that he or she speak to someone else – a counsellor or another person with diabetes or someone they can trust – to help them get back on track. Some will refuse to go for counselling but they do need outside input.
The average teen is likely to put his or her social world before their diabetes management. Peers and friends are an important source of emotional support for teens with diabetes. Being together (‘hanging out’) rather than just doing activities together is how they like to be. Usually teens who have friends who are supportive of their diabetes appreciate it, and those who don’t have support, want it.
Supportive friends can and often do help with some aspects of their diabetes treatment, such as recognising when their friend is hypoglycaemic and finding some glucose to treat it. Research has shown that peer support has been associated with better self-care of diabetes. The challenge for health workers and families is to work alongside teens to enable them to manage their diabetes without cost to their social life
Teens need support and encouragement throughout their adolescent years to prevent them reaching a feeling of being overwhelmed. This means support from the doctor; support from the diabetes care-giving team; parent support; family support; support from friends who understand enough to provide the support; school support; and support from all those people who are somehow involved in the teen’s life.
This does not mean that the support givers have to always be hovering over the teen – they would probably hate that. They need to have an understanding of the needs of the teen in relation to their diabetes and be available and offer a helping hand when the teen needs them. They need someone to provide an outlet for their negative emotions – a friend who they can trust with their feelings. It can be face-to-face individual support, or group discussions, or it may be by correspondence on a blog site or a Facebook support page.
Going to teenage diabetes camps: At camps, teens are in an environment with their peers, having fun and learning at the same time. They can talk about their diabetes openly because they’re not thought of as different or any other thoughts that make them feel isolated. They can share their ups and downs and know that most of the others have had similar experiences. They receive some education and lots of support and a great deal of encouragement.
Sporting activities are helpful if teens are willing to get involved with a sport of their choice. Exercise releases natural endorphins, and endorphins are natural antidepressants. So the teen’s mood will improve and may be able to shake off the apathy.
Putting these steps in place does not mean that the teen will not sometimes develop apathy, but they do help to prevent burnout as much as possible.