3. Adjustment to diagnosis
The world of diabetes | Te ao Mate huka
For many whānau (family) life can already be full of challenges and supporting a young person with diabetes may come as a shock along with a huge sense of responsibility. Diabetes does not just affect people’s physical health, but it can also affect people emotionally too.
There’s a lot to navigate to as you take in new information and skills and adjust to what it means to have a child (tamaiti) with diabetes. It may feel like you have a lot of decisions to make, have concerns you are not doing things right and wish diabetes never entered your life. After a while you may feel burnt out and “over it”. Depending on the developmental age and stage of your child they may struggle to fit diabetes into their life and may no longer care about their diabetes management.
Hearing of the diagnosis and learning about diabetes can cause many feelings including sadness, anxiety, anger and disbelief. You may notice that your child and whānau members respond differently to you or experience the same feelings but at different times or with different levels of intensity – this is all completely normal. Adjusting to a chronic health condition like diabetes can be likened to a grief response. This makes sense given you may grieve the health your child had or your idea of what their childhood may become. You might be concerned about what they could miss out on or worry about what it means for their future. Not many parents anticipate diabetes to be part of their parenting and world.
Parents and whānau are important role models and can help their young people learn how to cope with the inevitable stressors in life. While understandably you wish you did not have to deal with it, diabetes can be used as an opportunity to boost your resilience and self-care and support your child to do the same.
You can read a transcript of the video here.
You can boost your ability to cope by trying the following:
Focus on the things you can control such as your own activity level, food intake, attendance at appointments and response to emotions
You can read a transcript of this video here.
Talking about how you feel can help! Reach out to supports such as friends and family you trust, your GP, Diabetes Youth Auckland and the diabetes team. It can be helpful to talk to people who “get it” as it is a unique experience. There is a psychologist available in the diabetes team who can talk with both yourself and your child about your experiences.
Be gentle with yourself and your young person. Treat yourself and your child with compassion and patience. Acknowledge and validate the wide variety of emotions and emotional expressions that are likely to occur. Try to avoid jumping to reassurance (“you’ll be fine”) too quickly, and allow space for your child to process this diagnosis.
While there can be similarities, everyone’s journey is different. Try not compare yourself to others and remember that everyone adjusts and learns at their own pace.
It is okay to have moments of overwhelm and stress, after all this is new and challenging. Remind yourself of what you are doing and what you have achieved. You could note these small victories down in your phone or in a notebook and refer to them when you are feeling like it’s all a bit much.
Practicing gratitude on your own or as a family can help focus on what you appreciate and enjoy in life rather than what may not be going well. Even when diabetes is hard, what else may be going well in your life? Can you think of three things that you are grateful for each day and share these with your whānau. They don’t have to be big and can be as simple as: I am grateful for the sun on my face and that my kids went to school today.
There are lots of times when applying a problem-solving approach can be helpful (e.g. my child doesn’t like eating breakfast). Identify the issue, brainstorm all possible solutions, choose your top three and then rate these with pros and cons before selecting which solution is the most effective.
Remembering self-care! Te Whare Tapa Whā is a holistic model of health and can remind us of how we can care for our whole selves:
Taha wairua: the way people view wairua can be very different. For some it relates to their spirituality or religion and for others it is their values, beliefs, sense of purpose and meaning in life. You can engage in karakia, prayer, ask a higher power for support or guidance, mediate, practice mindfulness, do some deep breathing exercises or guided imagery. Recognising past and current achievements and setting goals or intentions for the future may also help in this area.
Taha hinengaro: this is your mind and heart, how you think and feel. You can engage in a hobby, talking through fears or worries, watch a favourite movie, read a book, do relaxation exercises, practice allowing space for emotions, go and see a trained professional for counselling or therapy.
Taha whānau: this is your family and social connection. You could socialise with your loved ones in person, online or phone call, spend time with pets, connect with your neighbours or community.
Taha whenua: this represents your connection to the land: You can return to your iwi, visit a place you feel connected to, take in a beautiful view, walk around a park, think about the place you consider home, spend time somewhere you feel comfortable and safe.
Taha tinana: this is your physical wellbeing. You can enjoy your favourite meal, have a long bath, go to kapa haka, eat nutritious food, exercise, take a nap, rest, go for a walk around your favourite place, get a massage.
https://www.diabetes.org.nz/diabetes-and-your-emotional-wellbeing
https://www.kidshealth.org.nz/diabetes/emotional-mental-wellbeing-in-children-with-diabetes
JDRF-Parent-Wellbeing-Guide-Digital.pdf