Talking… to your children about your condition

Telling your child about your condition can bring your family closer together, help you feel less alone and stop your child from feeling confused about why you don’t always feel well.

It was important to me to involve my young children in looking after my stoma, to help us all adjust to the change in lifestyle. They all had a role, including naming my stoma, helping me to choose clothes that looked good and passing me all my supplies to do a bag change.

Yvette, living with Colitis
Timm image 7

Openness is super important. I think because we have not been embarrassed by it, our children are not embarrassed by it, so they don’t hide it away. They say to kids at school ‘that’s my mum, she’s ace’.

Timm, husband to Sam, living with Colitis

I had told my children that I was having an operation but not what the outcomes could be or the length of time I could be in hospital. They got very confused when I was in hospital for six weeks. If I had been more open and talked about going into hospital sooner, that could have been avoided.

John, living with Crohn's

Talking Tips

Be clear

Use simple and straightforward language tailored to their age and level of understanding. You might want to focus less on detailed anatomical or medical information and more on everyday effects like how the condition makes you feel, what things you can’t eat or why you might need to rest more than usual.

Be honest

The chances are that every now and then, your Crohn’s or Colitis will stop you going to school plays or taking them to football training. Explaining that your condition may be ‘up and down’ could help your kids understand that it won’t always affect you in the same way, and that you’ll have both good days and bad. You can explain that it’s the illness stopping you from doing things - it’s not that you don’t want to see their school play. Be honest and try not to make promises that you may not be able to keep.

Reassure them

Your condition may make you more tired and easily irritated, but this isn’t their fault and it doesn’t mean that you don’t love them, or that you’ll stop caring for them. Just like they feel grumpy or unwell sometimes, so do you.

Encourage openness

Asking your child questions can help them feel part of a discussion, for example, if they’re worried about anything in particular, or if there’s anything they want to know about your condition. Get them to ask questions too but don’t be afraid to say if you don’t know the answers. You can always try and find out the answer together, maybe by asking the doctor or nurse together at your next appointment.

You might find it helpful to use jokes to diffuse the tension when talking about potentially embarrassing topics, like farting. As one parent said: “if they could talk about bowels, they could talk about anything.”

Useful information/links