Coping with your child’s type 1 diabetes diagnosis

They say the emotional impact of your child being diagnosed with type 1 diabetes (T1D) can mirror the stages of grief some people experience after the loss of a loved one.  

This might sound strange to those people who haven’t experienced it, but mourning the loss of your child’s life pre-diabetes and adapting to your ‘new normal’ as a family is a highly emotional process that can be difficult to navigate. Financial stress can also add another layer of concern for newly diagnosed families.

Recognising some of these stages and having strategies to help you as an individual and as a family is important. As with any form of grief, everyone’s journey is unique. 

At every stage, there is support available to help you and family through this. Visit our mental health resources page for ideas on where to start.

Download JDRF’s free book for parents of kids and teens diagnosed with T1D.

Denial 

Many parents find it hard to believe when their child is first diagnosed with T1D, especially when there is no family history of the condition.  

It might be difficult to comprehend that this illness is chronic and life-long, and that there are very real consequences if diabetes is not managed well.  

You’ll be learning a lot about how to manage your child’s T1D in this period. It can sometimes feel like information overload. Pace yourself and try to absorb the information that you need at the time – remember that you can always ask questions later. You don’t need to remember absolutely everything in these first, stress filled days and weeks. Thinking too far ahead can be overwhelming at this early stage. 

If possible, connect with other families living with T1D to get their advice and support and to not feel so alone. JDRF has a Peer Support Program that connects newly diagnosed families with others further along the T1D journey.  

Anger 

When your child is diagnosed with T1D it’s easy to think ‘why me?’ or ‘why my family?’. It can feel unfair, and feelings of anger towards the world can bubble to the surface.  

Anger is a very normal response during the early stages of your child’s diagnosis. Trying to focus on the positives and regularly practising gratitude as a family can support you to minimise these feelings of anger and hurt. 

If these feelings become more permanent or impact on your daily life or wellbeing, please speak to your GP, counsellor or psychologist.

Bargaining 

“If I could take it away and have it for myself I would” is a phrase spoken by most T1D parents. If it worked like this, there wouldn’t be many children living with T1D.  

Many parents struggle with the enduring nature of the disease, perhaps wishing for time off from the constant monitoring and decisions. 

This phase can also be accompanied by a sense of guilt and responsibility, causing parents emotional pain. Guilt is part of the parenting experience, whether diabetes is a part of your life or not. During this time it’s important to not make any major life altering decisions. Your emotions are heightened and you’re all still trying to make sense of what has happened.You might struggle to believe doctors when they tell you there was nothing you could have done to prevent this. Sit with this uncomfortable feeling, and know that you are still trying to process this experience.  

Having your support network around you is important throughout these phases. Friends who help you talk through your feelings without judgement are invaluable.  

Again, if these bargaining feelings are impacting heavily on your life, please seek professional help. 

Acceptance 

Your child’s diagnosis is an emotionally turbulent time: be kind to yourself as you begin to adjust to the practical and emotional demands of diabetes. This period of adjustment is different for everyone, as everyone’s resources, support and experience will be different. In time, you’ll notice that you’re beginning a journey of acceptance. 

Although most parents wish their child’s diagnosis never happened, they can usually reach a place where they accept it’s part of life and that, while different to what they may have imagined, life continues to move forward. 

It’s important to note every family’s journey is unique and the grief process is not linear. So you might find yourself dipping back into grief phases as time goes on.  

Having a strong support network and a regular self-care routine is vital to your ongoing wellbeing as a parent and carer. 

The mental wellbeing of your family is as important as their physical health. Seeking regular professional help is recommended for anyone who finds the emotional toll challenging.  

Chat with other parents who know what you’re going through – join our private Facebook support groups for parents and carers of children living with T1D, or sign up to our Peer Support Program.

Read more: Accessing mental health support with type 1 diabetes