Emerging from the COVID cocoon: Strategies for families newly diagnosed with T1D

This content was co-written by Simone Collins, Diabetes Social Worker at Canberra Health Services and Melanie Cullen, Paediatric Psychologist and Insulin Pump Program Coordinator at JDRF Australia for families of children newly diagnosed with T1D.

The outbreak of COVID-19 has impacted people in all walks of life on an international scale. Our lives have been transformed by the introduction of social distancing measures and are about to shift again as our states and territories begin easing these very necessary restrictions.

It’s enough to make anyone worried, overwhelmed, anxious and afraid. For many newly diagnosed families in the type 1 community, navigating their own intense emotions can be compounded by the uncertainty in the wider community during these challenging times.

A type 1 diabetes diagnosis can turn your world upside down and, in these strange times, can be even harder to come to terms with. Why?

• You’re dealing with your child’s diagnosis in an artificial and contained environment, away from the ‘real’ world. There’s an accumulation of stress as you contemplate the return to work and school.
• You’re being exposed to huge volumes of inconsistent information, not only from the media but also from the type 1 community. (If you’d like to read about T1D and COVID-19 from a trusted source, click here.)
• You’re undergoing one of the biggest learning curves of your life during a global pandemic. A T1D diagnosis can make you feel saturated with information. During COVID-19 these feelings may be amplified by a variety of factors.
• You might be feeling a spectrum of emotions during this time. It can be challenging to identify and manage these emotions, during a time of high stress, as you adjust to your child’s T1 diagnosis. Rest assured this is completely normal and to be expected.

So, as we begin to emerge from our COVID Cocoon and return to work and school, here are 8 coping strategies you can use during this challenging time. It’s important to remember there is no ‘one size fits all’ approach and they will work for different people at different times.

8 coping strategies for families of children newly diagnosed with T1D:

Communicate with your support system openly

Think of creative ways to stay connected with your family, your child, your partner and your diabetes team. If you can’t be in the same place, explore options like social media, email, phone or even telehealth services. Check-ins with these pillars of support will help to reduce anxiety and reassure you that you’re on the right track.

Take care of yourself

When you’re in a state of worry and increased stress, like you are when your child is diagnosed, processing simple day-to-day tasks can be difficult. That’s why it’s important to take a moment to address your own needs. Give yourself permission to practice self-care, in any way that you feel you can at this time. Remember the benefits of fresh air, sunlight and warmth, nutritious food, rest and exercise as this will naturally support an increase in your mood.

Remember comparison is the thief of joy

It can be tempting to compare your experience with other families in the T1D community and beat yourself up if your life doesn’t look like what others share online. It’s easy to forget you’re the expert on your child and what works for you as a family. Trust your own intuition to help you know what advice is likely to be helpful and scroll past the posts that increase your worry and uncertainty.

Remember social media reflects a snapshot of someone’s day and a window into their life, it does not give you the full story. Make sure you’re not compelled to follow advice that does not resonate with you.

Take your power back

The best way to increase your confidence is to have a plan. As we transition back to work and school, start by having conversations with your family about how this might look. Ask questions which will shape your plan and help you feel in control. Some questions could include: How would you tackle returning to school from a practical perspective?  How will you plan canteen days? Who do you want to tell?

Please remember to talk to your child during these planning stages. Your child is a wealth of knowledge and they may have different thoughts, feelings and worries compared to you. Children see the world differently to adults and therefore process information in a very different way. Find out what their fears or worries might be about returning to school and plan for these as well.

Let the dust settle after diagnosis

Adjusting to T1D in your family will take time, so don’t rush it! You are establishing a new routine, which can sometimes feel overwhelming and artificial, so pace yourself and set yourself up to succeed.  One way to cope with educational overload is to get creative with visual cues around the house and write lists if this would work for you. Remember, the intense emotions on diagnosis will change over time.

Be balanced

Anxious feelings can often unconsciously shape your conversations around diabetes. As a parent, it can be difficult not to make diabetes the first conversation you have with your child. It can be much more helpful to start with questions around their day, friendships and experiences as you would have pre-diabetes. Make diabetes your second or third line of questioning! As a result, you will create a more balanced relationship and prevent your child from picking up on your own fears or worries.

Manage expectations around your new world

Up until now, you’ve been managing T1D in an artificial, contained environment which may have allowed you to micromanage your child’s diabetes. Diabetes management can look different in a world without sleepovers, school camps or birthday parties and parents home due to changed working conditions.

The impending return to work and school may create unexpected conflicts, as you navigate the change in routine and expectations as you come out of the COVID Cocoon. Try to be flexible and open to managing diabetes in these new situations – there is a way to create balance and fit diabetes into your life. Be patient, be kind to yourself and remember your diabetes team is there to support you and assist you to plan for this transition.

Check in with your child

Adults process information very differently to children. Their concerns might not be the same as yours, yet they look to you to give them cues that things are alright. So, try to listen to everything they have to say before bringing up your own feelings. Listening and simply being there is often all they need.

Some other strategies which may help support them include physical affection (lots of hugs!), building their confidence by including them, as much as is age appropriate, in their diabetes care and helping them to find their strengths and supporting them to link back in with their interests and friendship groups.

If your child is newly diagnosed and you are freshly navigating T1D life, JDRF Australia have a range of support services available.

Your support toolkit

To access a closed Facebook group to connect with JDRF Australia’s community and network, you can join here:

• T1D Connect Parents and Carers of Newly Diagnosed
• T1D Connect Parents and Carers
• T1D Connect 25+
• T1D Connect 14-24

If you, or your child, are struggling talk to your diabetes healthcare team who can guide you on how to access counselling support.

To talk to someone urgently contact:

• Beyond Blue beyondblue.org.au 1300 22 4636; or,
• Lifeline lifeline.org.au 13 11 14.

Download some further resources on mental health and COVID-19 here:

• Australian Psychological Society: Tips for coping with coronavirus anxiety
• WHO: Helping children cope with stress during the 2019-nCoV outbreak
• WHO: Coping with stress during the 2019-nCoV outbreak