Royal Flying Doctor Service - South Eastern Section
Jackie Hanniver has been a flight nurse with the Royal Flying Doctor Service for more than decade but as a person living with diabetes she also understands exactly what many patients with chronic illness can be going through. For National Diabetes Week Jackie talks about one of the mental challenges of dealing with diabetes for children with diabetes and their carers: burnout. She also talks about some ways to try and avoid burnout for both children and their carers.
Dealing with the ongoing management of a chronic illness can be daunting enough for adults, but for children it can be extremely overwhelming and difficult. And it can be just as stressful for the parents and carers of those children.
I’m Jackie Hanniver, the Regional Service Manager for the Royal Flying Doctor (South Eastern Section) based at Broken Hill in Far West NSW. I’ve been with the Flying Doctor for 13 years. I am a registered nurse and midwife, and before my current role, was a flight nurse with the RFDS. And I have type 1 diabetes.
National Diabetes Week is 14-21 July 2024 providing an opportunity to recognise the challenges those of us with diabetes face. People who have been diagnosed with type 1 or type 2 diabetes face many obstacles, but one that needs to be highlighted, and cannot be managed with a prescription, is diabetes distress or burnout. This is where the daily stresses of managing the disease becomes overwhelming and can cause feelings of failure.
I’ve had friends that were diagnosed with diabetes quite young, perhaps when they were two or three years old. They had all the support and routines mapped out for them. They knew what they could and couldn’t eat in the playground, at parties and sleepovers, and were confident in managing their own medication. But by the time they got to 13 or 14 – after a decade of rigorous routine – they were experiencing burnout.
They think “I’m sick of having to do this. I’m always having to count my carbs for every single meal, and I’m just going to ignore it. I’m going to forget that I’ve got it and I’m going to pretend I’m like everyone else.”
It’s an understandable reaction. Living with a chronic illness is hard, and it’s even more so when you’ve been doing it from an early age. Feeling different is never fun as a child, and when other kids can eat what they want and not have to worry, it can increase the feelings of ostracisation – even if in practice they are accepted and supported by their loved ones.
Manage you and your child’s expectations
Throughout my career, I have seen this scenario play out time and time again. My advice to parents and carers, as a health professional, AND a person living with diabetes is to make sure children feel supported and have a good understanding of their diabetes. This includes explaining that there may be times when their diabetes will be out of control no matter how disciplined they are, or times when it feels like it’s all too hard. These feelings are valid and should be discussed. Positive reinforcement and taking some of the burden off them can help. Remind your child all of the good things they are doing, rather than focusing on the areas where they might be struggling.
Sometimes a short break from the routine can make a difference, perhaps a short break from the meal plan for a night. Even as an adult I find this can help. What you want to avoid is that they stop their management for so long that they start to feel sick or risk harm.
Seek support
Finding support groups or connecting your kids with other people who live with diabetes can also make a difference. A chance to speak with others who go through the same thing can be refreshing, especially if they don’t have other children or adults in their day-to-day lives they can share with. It’s sometimes just nice to know you aren’t alone and that others are going through the same as you.
These support groups may be face-to-face, online support groups, or even just conversations with others living with diabetes. The National Diabetes Support Scheme (NDSS) has an online directory of local and online groups, but there are even some informal groups online that can provide a place for people who have similar experiences to share. The Juvenile Diabetes Research Foundation (JDRF) also has resources for peer support, events and even holiday camps for children living with diabetes.
Look after yourself too
It’s also important for parents and carers to look after themselves and avoid their own health suffering, as when a child is diagnosed with diabetes at a young age it can be hard for the entire family, including other children. There are dozens of extra decisions and responsibilities that have to be dealt with every day. It’s not just managing the diet and the medication, but about preparing for school, dealing with sport, children’s parties or even sleep overs at friends. Whether it is making sure others understand dietary requirements or how to watch for signs of a hypo (hypoglycaemia), every little change in routine creates challenges and brings uncertainty.
But there is a lot of support available. Information resources such as the NDSS and Diabetes Australia can help with understanding a diagnosis and assist with the day-to-day management of the disease and within communities there can be additional resources including information for kids and teens. Like with our kids, sometimes having someone else to talk to can be enough to help us keep going through the tough times.
At the first signs of burnout or distress, the first point of contact for help could be you or your child’s current diabetes network. However, if the stress or pressure reaches a point where it is negatively impacting on everyday life or mental health is being affected, your diabetes health professional or GP would also be able to provide a referral to a psychologist.
Living with diabetes isn’t easy, and there will be good times and hard times but no one has to do it alone. Help is out there and it can really make a difference.
