Families living with chronic illness can come across many obstacles, so many must develop new ways of working when a parent becomes ill. As families come in many shapes and sizes, the complexity of each family's situation is unique and wide-ranging.
I wanted to explore my children’s view and experience with my illness, so that other adults who live with chronic illness might get a glimpse into how children who live with them might see their roles. I also want to share the strategies we’ve tried as a family – some that helped and some that didn’t fit.
A brief insight into our family
Joel and I married in 2003 with the eldest born in 2004 and youngest born 21 months later. I was a primary school teacher and Early Years specialist, but am now disabled and unable to work – or do much at all. Joel is my carer and the boys are young carers. I also have government allocated hours for a carer to help me dress and eat each day.
I’d lived with atypical migraines since puberty and in 2014, I was diagnosed with a rare brain disease. My symptoms include constant pain, poor mobility and falling or fainting without warning. I’ve had three brain and three skull/ spine surgeries so far and am mostly bedbound. My carers, and these include the boys, always have to be alert.
How much should we tell our children?
Having a complex, chronic illness is hard to explain to anyone, let alone children – whatever their age. There’s no “one size fits all” way to deal with chronic illness and its impact on family life. Each child will react differently to these changes.
As a parent and teacher, I believe that we should be led by our children, so Joel and I agreed that if the boys asked us something it meant they were ready for an answer. However, all parents feel differently about this and many choose not to tell their children much about their concerns or reality. My thoughts and opinions in this article are just that, and might not be right for you.
Children often know more about what’s going on than we think. But what they feel, see, hear and understand will likely be different to what we think they’re experiencing. This can lead to confusion, upset or anxiety – even when we think we’re protecting them.
I believe that hiding the facts from them can create an emotion explosion. So I recommend that you talk to them, but take into account their age, level of maturity and emotional wellbeing. It may not be appropriate to share all the facts, especially with young children, but they do need to understand what’s happening.
My boys’ views on chronic illness
I asked both my boys questions about our own journey with chronic illness. They were eight and ten when my conditions deteriorated and they remember key moments from then. Now they can articulate their feelings and reflect on their journey.
The strategies we’ve developed over time together and with professional support, helped the boys speak freely to me when I asked these questions individually. It takes time and hard work to get to the point where your child can speak this frankly.
Joel and I read their unedited words and although it was emotional, their candid responses made us so proud of them and what we’ve achieved together.
What my boys had to say about chronic illness life
Here are some of the key things that my boys said about what happened, how they felt, and what helped them. The boys trust that I’ll represent their views clearly, so I've only edited their words to give context. I’ve used E to refer to Eldest and Y is Youngest.
E - I can’t remember much about my feelings when Mum got really ill but I think that Mummy and Daddy dealt with it first, then Daddy told us what was happening.
Y - I was sad for her because I knew it would be hard. I knew it would be alright though because we’re a good team.
E - I remember Mummy and Daddy showing us a map of the skull to explain Mummy’s first surgery. I was really scared at first but at least I knew what was happening. When I knew what was going on, I felt fine. I was glad I could say where I wanted to stay when they were away.
Now everything is explained. Daddy tells us the logistics of what’s happening at the hospital and what we need to know for the time they’re away. When we’re at home we go and see Mummy if she’s too ill to come downstairs and watch TV or a film together. Daddy always tells us if Mummy’s fallen in the night.
E - At first I bottled up how it affected me but could talk to Daddy because it wasn’t happening to him. It’s only the past couple of years that I’ve felt able to talk about it openly to both Mum and Dad, which has helped my wellbeing.
E – What it’s like to have a parent with chronic illness is not easy to compare to anything else. I think I’m doing a similar amount of jobs to my mates but they’re different, such as us making dinner and learning to listen for the alarms. We have to be more responsible. I can’t just sit back, I have to help.
Y- I think I’ve been encouraged to take up more jobs and be more helpful than people my age normally are. We could just let Daddy do it all but we choose not to as we’re not that type of family. We help each other out.
E - I’ve learnt to be more caring and how to manage my feelings.
Y - I’m good at encouraging others and being supportive. I’ve learnt to be empathetic. We understand everything better when Mummy tells us how she's feeling, so we ask her each day.
Y- When we go out as a family, it’s more stressful than before as we have to think about Mummy’s wheelchair, make sure it’s accessible and not too noisy for her. When we’re spending time together at home, it’s really fun because we have a similar sense of humour and always find something to do that everybody enjoys.
I find our family meetings helpful because we can speak without judgement and we’re encouraged not to bottle things up. This means we don’t offend each other or hurt each other’s feelings at other times because we know how they’re feeling.
Y – Who I talk to when I am experiencing problems depends what it is, but I can talk to Mummy or Daddy. If it’s about another family member upsetting me I find it easier to talk to Mummy because of how she responds.
Y - I worry about Mummy’s condition worsening.
Y – Things that make me happy about my family are the way we’re open about our feelings and how we are accepting of everyone. “Family first - friends second.” I love that we’re a tight knit group. I’m proud of my family because of the way we all deal with Mummy’s illness and that we’re accepting of everyone; we don’t discriminate. I’m proud of how mature we are.
If I could change anything about family life, it would be spending more time together. It doesn’t matter how long it is, it’s about being together.
Youngest also had this advice for other children:
“It’s not great at the start but once you get used to it, it makes you a better person because you learn to adapt quickly.”
The boys’ responses are clear that occasionally we could have done more to help them understand. We were vaguely aware that we all needed support after we’d been through crisis mode so sought professional help, which has helped us all.
How our children developed their own emotional toolkit
When we realised that my illness was going to be long term, we took the following steps to support the boys. As time went on we knew how important it was to include the children in decisions. Through doing this we were able to develop their emotional toolkit.
- We let the school know early on and involved the boys’ teachers. We discussed home life, school work and behaviour, at school and at home.
- I started a Positive Jar which involved each of us saying something good about our day, however small. This was written on paper and put in the jar.
- We asked the school community for support, which was offered by so many parents. I worried at first that having lots of people involved in after school care was disruptive. I now think this prepared them for having lots of other adults, like carers, in their lives.
- Social workers visited the boys at home to see how they could support them. Youngest was given art books and Eldest was given links to resources.
- We started family therapy when we recognised we weren’t coping. These sessions had a long lasting impact for coping with chronic illness life. Youngest said: “We really didn’t want to go but it was helpful. I was able to voice my emotions in a constructive way and it gave us opportunities to find out more about how each other thinks. It gave us the skills to continue learning about each other and communicating effectively so we could continue our journey after therapy finished.”
- We put therapy into practice during family meetings where we’d discuss positives and negatives we were experiencing, often working together to find solutions.
- This is still how we communicate day to day, dealing with any situation quickly so it doesn’t escalate. Now we celebrate at the end of each month, noting our own positives, things we’re grateful for and what we’re proud of.
- We make it a priority to spend time with each other every day. We discuss the positives and negatives from each day and talk through any problems.
- We celebrate our small wins each day and rewards bigger wins by doing something together.
What our children might want to tell us but can’t
Of course, no matter how open communication channels are, children of all ages and walks of life often find it hard to tell their parents what’s upsetting or worrying them. Children dealing with a parent being ill might often bottle their feelings up, as they don’t want to worry or burden us. Look out for signs that:
- They’re sad about friendships or family relationships
- They’re scared about what’s happening to the parent who’s ill
- They can’t compare this to anything else as it’s all new to them
- They’re annoyed with a sibling and bottling it up is making them feel agitated
- They feel left out of decision making about where they go or what they do
- They feel it’s unfair that they have to do so many jobs at home
- They’re bottling their feelings up and getting anxious/worried/angry
- They’re stressed or embarrassed about being out together
- They’re embarrassed by your need for equipment e.g. wheelchair/stairlift
- They’re uncomfortable with anything that makes them look different
- The support you’ve found or fought for makes them anxious
- The strategies you’re trying are making them uncomfortable
- They’re being picked on or bullied for being different
Strategies that parents can use to support children
It’s always important to take the time to see how children are coping with all the add-ons that come with a life with chronic illness. Below are some strategies you can use with them and see which things help them feel more confident. Always take into consideration their age, maturity levels and confidence, and remember, these things can take time.
- Explain to them what’s happening at an age-appropriate level
- Use books from the library that help children understand hospitals/disabilities
- Collect a special box of toys to reward small wins
- Set up a system for family meetings and hold these regularly
- Let them choose an activity (can be free) to reward them for meeting productively
- Start with one regular time each day to be present and actively listen to them
- Use puppets with children who can’t talk about things
- Help them find a hobby that helps them let off steam
- Use a microphone (a pretend one is fine) and let them interview you about whatever they want to
- Write them a postcard/letter about how you’re feeling
- Leave your feelings of guilt about being ill aside - this doesn't help you or them
- Find the child’s strengths and areas to work on
- Find at least one positive in every day─ however small it is
- Ask them what another child with a parent who has a chronic illness might want to say
- Use creative outlets, such as art, music, dance etc.
- Encourage them to keep a secret journal that you promise not to look at (keep your promise)
- Allow them to be angry
- Spend time together as a family to reward children for completing a goal
- Teach them how to do one or two of your care jobs
- Start a Positive Jar and set a time when everyone can sit and listen to what was put in the jar
Questions that parents can ask to encourage communication
It’s also important to give your child a voice. Often, they might not know how to broach certain subjects or talk about difficult topics. Try asking them some of the questions that I have asked my own boys:
- How do you feel about Mummy being ill for a long time?
- How do you feel about things changing at home?
- How do you find time spent as a family?
- Who do you talk to if you’re having problems?
- What things do you worry about around chronic illness?
- What things make you happy about your family?
- What things make you proud of your family?
We probably don’t realise just how much our children are aware of the impact of chronic illness. Children have a unique insight into what happens in their family but it’s hard to know how to talk about so many things related to chronic illness.
Hearing my boys talk about the crisis times when they were so young has made me consider how seeing me in pain and hearing me cry must have affected them. In the past I’d have felt guilty, but now I see that this has developed their empathy for others.
Today they even see the positives from chronic illness life. They benefit from time as a family and know that I’m always around to facilitate them navigate school and home life. I’ve also become their confidante and we’ve all become much closer.
When we developed their emotional toolkit they also grew in confidence. They were able to tell us what they wanted to happen and where they wanted to be. Looking at this with teacher eyes, I realise it gave them some control when they didn’t have any.
We’ve always tried to include the boys’ feelings in decisions we’ve made that impact them. My understanding of how children adapt is from my work as a teacher, but these strategies have been developed by listening to our children’s needs.
My children are much older now, so can express themselves articulately. Yet they can do this so much more effectively because of the strategies we’ve put in place. I’m not saying we got it all right first time but by working together, we got there.
This is how chronic illness has impacted my family, and I hope you can use some of it to help you navigate relationships within your own. My opinions are based off my own experience as a mother as well as 15 years of teaching children from different backgrounds and cultures. Finally, the biggest takeaway that I would like you to take from this is, to listen to your children!
UK/MED/20/0173 June 2020