Talking to children about your illness

Some suggested ways of saying things

• 'I have an illness. It is called [your illness]. The doctor is giving me medicine to help me get well. Sometimes I will feel ill or tired and sometimes I will feel fine. Dad/Mum will help me to take care of you until I feel better.'
• Simple and straightforward language is the most helpful, for example: 'Some of the cells in my (tummy) are growing too quickly and have made a lump that is sore. The doctors will take the lump out during an operation.'
• 'Being ill makes me feel sad. You are a help. But it's all right for you to feel sad (or angry or happy or whatever). Our feelings change but Mummy/Daddy and I will always love you.'
• 'The multiple sclerosis is active again. That makes me angry and sad, too. I need to use a wheelchair now because my walking is affected. Doctors know a lot about taking care of people when this happens.'

Sometimes it can be helpful to use books about your illness to help you to describe it. Below is a list of suggested books which may be helpful, but your specialist nurse or local hospice may also be able to help recommend other books which are suitable.

3-5 years

• When Dinosaurs Die: A Guide to Understanding Death by Laurene Kransy Brown and Marc Brown, publisher: Little, Brown and Company (2006)
• I Have Feelings by Jana N Hunter, publisher Frances Lincoln (2002)
• Badger’s Parting Gifts by Susan Varley, publisher: Collins

6-10 years

• Muddles, Puddles and Sunshine, Winston’s Wish (2000)
• When Someone has a Very Serious Illness by Marge Heegard, publisher: Woodland Press (1991)
• A Dragon in your Heart by Sophie Le Blanc, publisher: Jessica Kingsley (1999)
• What on Earth do you do When Someone Dies by Trevor Romain and Elizabeth Verdick, publisher: Free Spirit (1999)
• Waterbugs and Dragon Flies by Doris Stickney, publisher: Continuum (1982)
• The Secret C: Talking Straight About Cancer by Julie Stokes, publisher: Winston’s Wish (2000)

11-13 years

• Finding a Way Through When Someone Close has Died by Pat Mood and Lesley Whittaker, publisher: Jessica Kingsley (2001)
• Can I Still Kiss You: Answering Your Children's Questions About Cancer by Neil Russell, publisher: Health Communications Inc (2001)

Teens

• Straight Talk about Death for Teenagers by Earl A Grollman, publisher: Beacon Press (1993)
• The Young Person’s Guide to Multiple Sclerosis by Kerry Mutch and Alison Whittam (2010), publisher MS Trust
• Healing your Grieving Heart for Teens by Alan Wolfet, publisher: Companion (2001)
• A Pocket Full of Plasters, Winston’s Wish

Some don'ts

• Don't lie.
• on't trouble them with complicated medical details, money problems (except when it will affect them), or your worries about waiting for the results of tests, etc.
• It is best to avoid words for cancer, such as 'the big C', or 'breast mouse' for breast cancer, or 'a nasty tree growing inside me' as this can give children the wrong idea which can be very frightening. Just say 'cancer'.
• Don't make promises you may not be able to keep. (Say 'I think I will be able to...' or 'I'll try to...')
• Don't be afraid to say 'I don't know'.
• Don't push children to talk if they do not want to.