Supporting You and Your Child's Wellbeing

Growing up with a chronic illness can have a significant impact on children and their loved ones. Chronic illness brings unique experiences and challenges that can be difficult for children and parents and carers, and have a significant impact on wellbeing.

Our art therapists have passed along some tips and reminders for supporting your child and looking after yourself. 

Supporting Your Child

Listening and talking 

Follow your child’s lead with these conversations. Sometimes they might not want to talk about things, and that's okay. Sometimes they might want to talk about really difficult topics, and that's okay too.  

It can sometimes be tricky to talk about physical or mental illness. Sometimes talking to a co-parent or friend first before talking to your child can be helpful. Young Minds has a brilliant resource on talking about mental health, including some conversation starters. 

Exploring activities together  

Lots of hospital appointments and/or home treatments can mean you and your child spend a lot of time together, but these activities can be difficult or stressful for you and your child. There may be something your child loves to do that you could do alongside them, or you could try something new together. Young Minds have a list of suggested activities of different lengths, many of which may be fun to do as a whole family. 

Your child may not always want to do an activity together, and this is okay too - they may just need some space. This can be an opportunity for you to take some time for yourself, as well. 

Be led by your child 

Encourage your child's voice and try to support the needs they share. Following their lead in what they need can help your child to feel more in control of what’s happening to them and cope better with the effects of their condition. 

Supporting their interest in community  

Growing up with a chronic condition can be an isolating experience, and we often hear children and young people share that they feel different and alone. We also often hear that meeting people with similar experiences is life changing, making them feel less alone and having a support network of people who ‘get it’ to turn to. Supporting your child's interest in community in person or online can help them to form connections that have a long term positive impact on how they feel. You  can also speak with your art therapist about possible peer support groups they would recommend your child getting connected with.  

“Instagram was huge for me. At 15 I saw for the first time that there were other people like me and I wasn’t alone. My parents were nervous when I started messaging people because of the whole ‘stranger on the internet thing’, but after they got in touch with the parent of one of the friends I met we were then able to meet up in person. I am now 23 and they are still one of my best friends. Our mums are friends too and sometimes we all hang out together” - Nina* 

Coping strategies 

Stress and other difficult emotions are a normal part of life. Children with chronic conditions may have more experience with stress from having to manage symptoms and treatments. Coping strategies are the ways we manage stress. For example, doing messy painting as a release or deep breaths to feel calm. Having this ‘toolbox’ of strategies to turn to in difficult situations is important. As a parent/carer you can help your child identify healthy coping strategies that work for them, and support them in using them. For example, if colouring helps them feel calm then reminding them to bring their materials to situations they find stressful like hospital appointments. 

If you don’t know where to start, we have a range of therapeutic art activities that you and your child can try.  

Help them to recognise their strengths 

Growing up with a chronic condition can lead to developing different skills and strengths to their peers. For example, patience, empathy, and self-advocacy are three skills we often see in children with chronic conditions. Helping your child to recognise and celebrate their skills can help their confidence and sense of self.

Parent Carer Wellbeing

Looking after a child who is living with a chronic condition can come with extra challenges. It is difficult to witness your child living with illness and distress, and this may impact your own wellbeing and mental health. 

Having appointments, hospital stays, or other ways of care can also make it difficult to do things you may previously have done to look after your wellbeing and mental health. 

Sammy, whose daughter lives with Lupus shared:  

“Sophie was 14 when she was diagnosed with lupus at Alder Hey. Like many parents I did what we do and I swooped into action and tried to wrap her up and support her with everything I could and support her, but what I forgot was to look after myself. It just didn’t even feature in my plan at that point it was all about my daughter … she had had about a month in and out hospital like jack-in-the-boxes. We lived about an hour and twenty minutes from the hospital, it always involved desperate dashes and it was all incredibly stressful. She was having all sorts of tests for lots of horrible scary lupus side effects. When she got out of hospital and had gotten on an even keel I just felt like I had fallen off a cliff with exhaustion and just complete stress.”

It can be difficult during stressful times, but your mental wellbeing is equally as important as your child's. You may have heard the idea of it being impossible to “pour from an empty cup”, and so working out ways to “fill your cup” is really important.  

Sammy, Sophie’s mum, shared: “I learnt one of the biggest lessons of my life: If I wasn’t okay then I certainly wasn’t going to be okay to support my child.”  

We asked some of our art therapists who work with families to highlight some useful things to remember: 

• Be patient with yourself - it is okay not to get everything right every time. Be kind to yourself, it is your first time too. With chronic conditions, it can often feel like you have just got the hang of symptoms or healthcare being a certain way when they change again. It is okay not always knowing what to do, you are learning too.  
• Lean on your community - you don’t have to do this alone. Share the highs and the lows with those around you and lean on trusted friends and family for support. Parents and carers often share that friendships with others in similar situations are extremely helpful. Many condition specific charities run groups for parents and family days to help connect other parents and carers.  
• Take time for yourself - Give yourself the personal time you are encouraging your child to have. Using this time to do things you know make you feel good, or trying other activities, like being outdoors or trying a new craft, can make a difference to how you are feeling.  
• Reach out - if you are struggling to cope then speak to your GP. They can signpost and refer you to support.