Teenagers with chronic health conditions: challenges

If your teenage child is living with a chronic health condition, he might be facing challenges that other teenagers don’t have to deal with.

These challenges could include lots of GP or hospital appointments, time-consuming medical treatments, intrusive daily medications, missed social activities, feelings of isolation, and extra planning for going out with friends.

A chronic health condition can also sometimes affect puberty. For example, some conditions that affect nutrition or growth can delay puberty, and some neurological development disorders can cause early or late puberty.

Your child’s condition might also affect the way she feels about her body or how she controls her emotions.

And then there are your child’s feelings. He might feel embarrassed to tell friends about his illness or treatments. He might worry about being ridiculed or bullied. Perhaps it’s difficult for him to make or continue friendships, especially if his illness keeps him away from school a lot.

Don’t be too surprised if your child feels angry or pretends she doesn’t have an illness. This is pretty common. Some teenagers can also be uncooperative about treatment – for example, by avoiding medications, bingeing on cake if they have diabetes, or smoking if they have asthma.

If your child’s illness has just been diagnosed, adjusting to it can be difficult. And if your child has had the condition for a long time, the teenage years can bring extra challenges.

A little bit of denial can be helpful because it allows the young person to take some risks and get on with trying things, but it isn’t good if the denial keeps going. If this happens, teenagers end up not sticking to their treatment plans, which can mean they get sicker and go back to hospital more often.
– Susan Towns, Head of the Department of Adolescent Medicine, Children’s Hospital Westmead

Helping teenagers with chronic health conditions ‘just be teenagers’

You have a big role to play in helping your child with a chronic health condition just ‘be a teenager’.

When teenagers with chronic health conditions just get to be teenagers, they can feel a real sense of achievement and independence. This might come from something as simple as dressing themselves, especially if your child can choose clothes that suit his personality rather than his illness.

Helping your child find this sense of independence isn’t always easy, especially if you’re used to caring for your child when she’s sick, taking her to hospital or managing her medical treatments. It can be hard to let your teenager take risks and test her abilities, but this is the first step towards working out how much independence your child can handle.

You could try:

  • letting your child take reasonable risks and go through disappointment – for example, let him organise a social outing with friends by himself
  • finding ways to get your child involved in routine household chores alongside his siblings – for example, if doing the vacuuming or bringing the washing in isn’t physically possible, perhaps folding clothes and making lists are
  • letting your child go on a school camp or stay overnight at a friend’s house
  • letting your child know that you expect mature and respectful behaviour – for example, ‘We expect people to speak to each other respectfully in our family. It’s not OK to call people names’.

Smoking, drinking and sexual health
As your child gets older, her health professionals will talk to her about how things like sexual health, smoking, alcohol use and drug use will affect her condition.

If you can talk to your child about these difficult issues too, you can guide your child towards sensible and responsible decisions. If you’re not sure about how alcohol, drugs, smoking and so on might affect your child, you can always check with your child’s health professionals.

Parents need to keep things as normal as possible and help their sons or daughters achieve their own goals of adolescence, while supporting them to manage their chronic health condition. We encourage parents to avoid the ‘overs’: over-protection, over-permissiveness, over-indulgence, over-anxiety.
– Susan Towns, Head of the Department of Adolescent Medicine, Children’s Hospital Westmead

Helping teenagers manage chronic health conditions

Many teenagers living with chronic health conditions want to manage their conditions themselves, and this can be a good thing. How much responsibility your child can take on will depend on his condition and his needs.

Here are some ideas for building your child’s health independence.

Trial runs
You could set up some ‘trial runs’ to see whether your child can remember her medications or medical appointments by herself. If your child can recognise early warning signs that things aren’t going well and if she knows how to respond quickly, this is also a great start.

Social outings
You can help your child manage social outings by working through the practical issues beforehand. Together you and your child could come up with a plan for handling things like getting around in a wheelchair, injecting medication, emptying a colostomy or urinal bag, checking blood sugars and so on.

Your child might also need a backup plan for when things don’t go well. This could be taxi vouchers or making sure friends have emergency contact numbers.

Routines and schedules
If you or your child sets up routines, schedules or reminders for medications and appointments, he won’t need you to remind him. You could use a calendar or a smartphone app.

Rules and risks
Rules are important for all teenagers, especially rules about risks, safe behaviour and communication. You could talk with your child about monitoring medications and symptoms, or what might happen if she combines medications and alcohol.

Friends
If your child explains his health condition to his friends (and their families), these people will know what kind of support your child might need. It’s also helpful if they know emergency contact numbers and what to do if your child suddenly gets sick.

The learning curve
As your child takes on more responsibility and independence, there might be times when things don’t go to plan and she ends up in hospital with medical complications. This can make you and your child feel anxious, but it’s part of how she’ll learn to manage her condition herself.

If you’re finding it hard to let go, it’s best to get some help from an adolescent health professional like a psychologist or a social worker. They’ll be able to work out how to support your child without undermining your child’s confidence.

Coordinating care for teenagers with chronic health conditions

You might need to coordinate your child’s care until he can take full responsibility for it, where this is possible.

Coordinating care often involves getting the different services involved in your child’s treatment and care to communicate with each other. For example, you might need to make sure key staff members at your child’s school or college understand her medical condition and treatment regimes, or ensure your child’s specialist is consulted if your child is admitted to the hospital emergency department.

As part of this, you might need to keep and share an up-to-date list of phone numbers and emails of all these professionals.

Some parents use a specific diary with a notebook section and pockets for cards, brochures and reports. Other parents use smartphone apps to take photographs of instructions, record treatment information and set up reminder schedules.

Being an advocate for teenagers with chronic health conditions

During the teenage years, depending on your child’s condition, he’ll start to see the GP and medical team alone. Eventually he’ll move to the adult health care system.

Your child might also be choosing subjects at school, looking at colleges or wanting a part-time job.

Through this period, you still have a major role to play in advocating for your child, guiding her into and through the adult health world, and supporting her as she negotiates school and a changing social life with friends.

Finding role models for your child and getting him to talk to older peers who have similar chronic health conditions can be a good start.

Peer support groups or online chat groups with other young people who have the same condition can help your child feel less alone or different.

Depending on your child’s condition, you might find that you shift from being your child’s primary carer to being her primary advocate and life coach. As part of this role, you could talk to your child about:

  • understanding her rights and responsibilities as a health care consumer
  • coping with pressure and managing stress
  • being assertive and speaking up about concerns
  • keeping notes and reports from appointments
  • learning to coordinate the professionals and services involved in her health care and education, where this is possible.

My Health Record is a personally controlled online summary of your health information. Your child is allowed to manage his own record from the age of 14, if he’s able to.

Getting help when your child has a chronic health condition

Young people with chronic health conditions can have higher rates of depression and other emotional problems. If you’re worried that your teenager isn’t coping well or if you’ve noticed she’s angry, down or really denying things, it’s a good idea to get some support from adolescent health professionals.

Multidisciplinary teams of specially trained doctors, psychologists, nurses, occupational therapists and social workers can help your family to support your child. Your GP should be able to give you a referral to these specialist services.

Don’t forget to look after yourself too. If you’re meeting your own needs, you’ll also be better able to meet the needs of your family.

And if you’re worried or stressed, talk to someone about it. This can help you deal with negative feelings and avoid more serious problems later. Meet with your GP if things seem more serious.