Published: June 2020
Updated: May 2022
Families living with chronic illness can meet many obstacles, so many must develop new ways of working when a parent becomes ill. Of course, families come in many shapes and sizes, so every situation is unique.
I can't delve into the complexities of individual circumstances. Still, I can share my family's experience with chronic illness and its impact on them. Today, I want to explore how my children feel about living with a chronically ill parent. I hope that other parents living with chronic conditions may get a glimpse into how their children cope and see their roles within the family unit.
I'd also like to share some strategies we've tried as a family. I'll include some that helped and some that didn't work for us. Consider them all - they may work for you!
A brief insight into our family
Joel and I married in 2003. Our older son was born shortly after in 2004, and his brother followed almost two years later.
I was a primary school teacher who specialised in a child's Early Years. I loved my job, but chronic illness means I'm now disabled and unable to work - or do much at all. Joel is my primary caregiver, while my sons are classified as young carers.
I also have a daily caregiver allocated by the government. They come in to help me dress and ensure I eat enough good food.
I've lived with atypical migraines since puberty. Then, in 2014, I was diagnosed with a rare brain disease: idiopathic intracranial hypertension (IIH). My symptoms include constant pain, poor mobility and falling or fainting without warning. I've had six brain and three skull/ spine surgeries, but I'm mostly bedbound nowadays. My caregivers - including my boys - always have to be on high 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, after my diagnosis, Joel and I agreed that we'd answer any questions from our boys as honestly as possible.
However, all parents have different parenting styles. Some may choose not to worry their children about their concerns or troublesome details. The thoughts and opinions in this article are simply my own - they may not be suitable for you, and that's okay.
Children often know more about what's going on than we think. But what they see, hear and understand will likely be different to what we, as adults, think they feel. Even the most empathetic parent can struggle to think like a child.
When we're not working on level playing fields, the confusion can lead to upset and anxiety - even when we're doing our best to protect our children.
I believe that hiding the facts from my kids can build up to an emotional explosion of bewilderment, anxiety, and fear. So, I tell my children as much as I can while considering their ages, maturity, and current levels of emotional wellbeing.
I don't share every detail or fact, especially when my children were fairly young. Still, I try to help them 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 some key moments from then. Now they can articulate their feelings and reflect on their journey.
With lots of strategies and professional support, my boys felt comfortable talking freely to me when I asked questions. It's not an overnight thing - getting to the point where my children can speak this frankly has taken lots of hard work.
Joel and I read their unedited words. 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 the Elder, and Y is the Younger.
E: I can't remember much about my feelings when Mum got really ill, but I think 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.
E [Cont.]: Now everything is explained. Daddy tells us the logistics of what's happening at the hospital and what we need to know when they're away. When we're at home, we 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 [Cont.]: At first, I bottled up how it affected me but could talk to Daddy because it wasn't happening to him. It's only been in the last couple of years that I've felt able to speak with Mum about it too. Being able to talk about it freely has helped my wellbeing.
E [Cont.]: 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. We're more about 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 usually 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 [Cont.]: When we go out as a family, it's more stressful than before. We have to think about Mummy's wheelchair, make sure the place is wheelchair accessible, and that it's not too noisy for her.
Y [Cont.]: When we're spending time together at home, it's really fun. We all have a similar sense of humour and always find something to do that everybody enjoys.
Y [Cont.]: 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 or hurt each other's feelings outside of meetings because we know how we're all feeling.
Y [Cont.]: Who I talk to when I am experiencing problems depends on what it is, but I can speak to Mummy or Daddy. If it's about another family member upsetting me, I find it easier to talk to Mummy.
Y [Cont.]: I worry about Mummy's condition worsening.
Y [Cont.]: 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 how 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.
Y [Cont.]: 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.
My younger also had this advice for other children:
Y: "It's not great at the start, but it makes you a better person once you get used to it. 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 being in crisis mode. We sought professional help, which has helped us all.
How our children developed their own emotional toolkit
When we realised that my illness would 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.
1. 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.
2. I started a "Positive Jar." It involved each of us saying something good about our day, however small. This was written on paper and put in the jar.
3. We asked the school community for support, and it was offered by so many parents. At first, I worried that having many people involved in after-school care would be disruptive. I now think this prepared my children for having lots of other adults, like caregivers, in their lives.
4. Social workers visited the boys at home to see how they could support them. The younger was given art books, and the elder was given links to resources.
5. We started family therapy when we recognised we weren't coping. These sessions had a long-lasting impact on managing our lives with my chronic illness.
My younger said:
"We really didn't want to go, but it was helpful. I was able to voice my emotions constructively. It also gave us opportunities to find out more about how each other thinks. It let us continue learning about each other and taught us how to communicate effectively enough to continue our journey after therapy finished."
6. We put therapy into practice during family meetings. We'd discuss the positives and negatives we were experiencing, often working together to find solutions.
This is still how we communicate daily, 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.
7. We make it a priority to spend time with each other every day. We discuss the positives and negatives of each day and talk through any problems.
8. We celebrate our small wins each day and reward bigger wins by doing something together.
What our children might want to tell us but can’t
Of course, children of all ages and walks of life often find it hard to tell their parents what’s upsetting or worrying them. Even if communication channels are very open within the household.
Children dealing with an ill parent might often bottle their feelings up, as they don’t want to worry or burden us. Look out for signs that:
1. They’re sad about friendships or family relationships
2. They’re scared about what’s happening to the parent who’s ill
3. They can’t compare this to anything else as it’s all new to them
4. They’re annoyed with a sibling, and bottling it up is making them feel agitated
5. They feel left out of decision making about where they go or what they do
6. They feel it’s unfair that they have to do so many jobs at home
7. They’re bottling their feelings up and getting anxious/worried/angry
8. They’re stressed or embarrassed about being out together
9. They’re embarrassed by your need for equipment, e.g. wheelchair/stair-lift
10. They’re uncomfortable with anything that makes them look different
11. The support you’ve found or fought for makes them anxious
12. The strategies you’re trying are making them uncomfortable
13. 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. See which things help them feel more confident. Always consider their age, maturity levels and confidence, and remember, these things can take time.
1. Explain to them what's happening at an age-appropriate level
2. Use books from the library that help children understand hospitals/disabilities
3. Collect a special box of toys to reward small wins
4. Set up a system for family meetings and hold these regularly
5. Let them choose an activity (which can be free) to reward them for meeting productively
6. Start with one regular time each day to be present and actively listen to them
7. Use puppets with children who can't talk about things
8. Help them find a hobby that helps them let off steam
9. Use a microphone (a pretend one is fine) and let them interview you about whatever they want to
10. Write them a postcard/letter about how you're feeling
11. Leave your feelings of guilt about being ill aside - this doesn't help you or them
12. Find the child's strengths and areas to work on
13. Find at least one positive in every day─ however small it is
14. Ask them what another child with a parent who has a chronic illness might want to say
15. Use creative outlets, such as art, music, dance etc.
16. Encourage them to keep a secret journal that you promise not to look at (keep your promise)
17. Allow them to be angry
18. Spend time together as a family to reward children for completing a goal
19. Teach them how to do one or two of your care jobs
20. Start a "Positives Jar." Then, set a time when everyone can sit and read aloud everything put inside.
Questions that parents can ask to encourage communication
It’s also essential to give your child a voice. Often, they might not know how to broach certain subjects or talk about complex topics. Try asking them some of the questions that I have asked my own boys:
1. How do you feel about Mummy being ill for a long time?
2. How do you feel about things changing at home?
3. How do you find time spent as a family?
4. Who do you talk to if you’re having problems?
5. What things do you worry about around chronic illness?
6. What things make you happy about your family?
7. 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 they may find it difficult to talk about their feelings related to chronic illness.
Hearing my boys talk about the crisis times when they were so young has made me consider how seeing my pain and hearing me cry must have affected them. I'd have felt guilty in the past, but now I see how much empathy for others they have.
Today they even see the positives of chronic illness life. They benefit from time as a family and know that I'm always around to help 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, the children also grew in confidence. They could tell us what they wanted to happen and where they wanted to be. Looking at this with my "ex-teacher eyes", I realise it gave them some control when they didn't feel like they had any.
We've always tried to include the boys' feelings in decisions that impact them. My understanding of how children adapt is from my work as a teacher. However, these strategies have been developed by directly listening to our children's needs.
My children are much older now, so they 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 the first time, but we got there by working together.
This is how chronic illness has impacted my family. I hope you can use some of it to help you navigate relationships within your own. My opinions are based on my own experience as a mother and from 15 years of teaching children from different backgrounds and cultures.
Finally, the biggest takeaway that I would like you to take from this is:
Listen to your children, don't judge their feelings, and encourage them to share with you as often as they’d like.
NPS-IE-NP-00386 May 2022