‘How can I help my teenage daughter accept that having a chronic illness is part of her life?’

Question

I have a 13-year-old child with type 1 diabetes and coeliac disease. She was diagnosed at age four. She seems just fatigued with having to be different and cope with a chronic disease. There is no let-up. She’s very anxious and depressed. This is all added to the general teen angst of being 13.

How do I help her accept that this is part of her life that I nor anyone else can change, without it being totally overwhelming?

Answer

Accepting and living with a chronic illness is challenging at all life stages but it can be particularly so during the teen years. A young child can be more matter-of-fact in their acceptance of a diagnosis and more easily go along with all the treatments and challenges, especially if their parents are positive and supportive. However, as the teen years start, children become more self-conscious and critical. They become acutely aware of how they are different and can begin to wonder, “why me?”. They can start to envision their life and are more likely to worry about the future. Young teenagers can more intensely feel their emotions as they rage against their diagnosis and feel depressed by its implications.

This is of course very hard to witness as a parent. You have already gone through the ups and downs of getting diagnosis and managing treatments for your child. You have probably had your own feelings, of worry, anger, guilt and grief as you have helped her manage. Seeing her now struggle with similar emotions can be particularly upsetting. In addition, young teenagers may not manage their emotions well and can more easily take them out on other people – perhaps you feel your daughter’s rage inappropriately directed at you? This is hard to deal with.

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Below are some ideas to help your daughter cope and on coping as a parent too.

[ ‘How can I respond maturely to my seven-year-old daughter’s fussiness and controlling nature?’ ]

Be remarkably patient

It is a long journey with lots of ups and downs to come to accept a chronic illness in your life. Moving to a position of serenity about the things you can’t change is not an easy feat and takes time. As a teenager forging her own identity, your daughter is starting this journey for herself and there are bound to be many ups and downs. While as a parent you can wish that she would just “get on with it” or accept things, you have to be patient and go at her pace. Your job is to be a supportive guide on the journey, feeling her upset when she is down and noticing and celebrating the small steps of progress she makes.

Expressing emotions is very important

See it as a good thing that she expresses her emotions and upsets. This lets you know what is on her mind and can make her feel better if you respond by listening and understanding. While you might want to teach her how to respectfully communicate her emotions, meltdowns and outbursts are better than nothing and superior to her repressing all her emotions, which can lead to depression. For example, if she appears depressed you want her to express the feelings of loss, sadness and grief that underpin it. Grief is one of those most healthy of emotions that when expressed well can help you move towards acceptance and health.

[ ‘My son rarely speaks and never cries at creche’ ]

Problem-solve challenges one by one

Encourage her to talk about the specific worries on her mind. Is she self-conscious about being different? Or worried about missing out on what her friends are doing? Or is she just fed up with the treatments? Then you can try to problem-solve with her some solutions that might make things a little better, such as exploring how to talk to friends about her illness, scheduling activities carefully so she does not miss out and discussing treatments with her medical team to make them less inconvenient. Ensuring your daughter’s illness does not dominate her life and that she engages in all the fun activities and milestones associated with being a young teenager will be key to her coping well.

[ ‘My three-year-old’s tantrums are wild. What is the best way to handle him when he gets so angry?’ ]

Get more support for you and your daughter

Dealing with chronic illness can be a lonely business and make you feel isolated. Reaching out to gain the support of other people in a similar situation can make a big difference. There are Irish-based and international support organisations (eg diabetes.ie and coeliac.ie) that provide support to both parents and teenagers. Many of the international organisations arrange online zoom support groups for teenagers and parents as well as interesting APs and supports. If face-to-face support is what you need, contact the national organisations to make contacts near you.

If your daughter was to meet one or two similar or slightly older teenagers dealing with similar challenges, it could be very beneficial. Meeting a young person in their 20s who has been through similar ups and downs and who is now coping could be inspirational to her.

• Send in your question by filling up the form below, or by emailing health@irishtimes.com (with “John Sharry” in the subject line)

• John Sharry is founder of the Parents Plus Charity and an adjunct professor at the UCD School of Psychology. He is author of several parenting and mental health books. See solutiontalk.ie for details