HOW TO TELL MY CHILD?

Simple and straightforward language is the most helpful for children. Ask them what they think IBD is, and correct any misunderstandings they may have. Listen to them – it lets you know what they can cope with. Ask them if they are worried about anything in particular. Try and answer their questions simply. Don’t be afraid to say that you don’t know the answer to all of their questions. Doctors may also find it difficult to answer questions as IBD is an ‘individual’ condition and people’s experiences vary so widely. Be honest and try not to make promises that you may not be able to keep, say ‘I will try to...’ or ‘I think I will be able to...’

If you can, try to balance the news by ending with a positive so that you leave them feeling that even though you may be ill now, there will be better times. Sometimes the child may find it too difficult to talk about your IBD with you, and may feel that they cannot speak to a family member either. Or you might have noticed a change in their behaviour since you told them about your IBD. If you feel it would help your child, you could suggest counselling to them as a way of talking through their worries or anxieties. Counselling sessions for children are tailored to be age appropriate, and if they are younger they may be encouraged to express themselves in non-verbal ways, for example through artwork or play.

SOME SUGGESTED WAYS OF SAYING THINGS TO CHILDREN

• ‘I have an illness called Ulcerative Colitis/Crohn’s Disease. I’m taking medicine to help me get well. Sometimes I feel ill or tired and sometimes I feel fine.’
• ‘The illness makes my tummy sore and makes me go to the toilet a lot, which can be awkward.’
• ‘Being ill makes me feel upset. I may seem tired and cross sometimes, but it is not your fault and I still love you.’
• ‘My tummy is red and sore inside. The tablets I am taking are helping to make it better. It is an illness that can get better for some time, and then get worse again, but it probably won’t go away altogether. If you have any questions about it, you can ask me.’

THE CHILD’S REACTION

You might find that your child does not respond to the news that you have IBD in the way you anticipate. They might not ask questions and may appear quite uninterested. But this does not mean that they do not care.

They may need time to absorb the information. You may find that their emotions come out later and they express themselves in actions rather than words. So their behavior could be an indicator of how they are feeling. For example, your child may behave unusually – they may become withdrawn or ‘act up’ in some way by being naughty, which could be their way of showing how upset they are. If your child is at school, and you are happy for the school to know about your condition, it could be a good idea to speak to your child’s teacher so that they are aware of the conversation you have had at home. The teacher can keep in touch with you should there be any change in behavior.

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