Talking to others about my health condition

Introduction

Living with a chronic condition can lead to young people feeling isolated and different from their parents, peers, siblings, and teachers. This can leave young people wondering whether to tell people about the condition. As part of coping with living with a chronic illness it can be helpful to build a good support network.

Is it helpful to tell your friends and other people you have a long term health condition?

Some chronic health conditions are not visible or obvious to others, making it hard for you to decide if you should tell them or not. Telling other people about your condition can sometimes be difficult for a number of reasons:

• you may see it as an invasion of your privacy
• you may worry how others will react
• you may worry that others will change their behaviour or attitude towards you
• you may worry that you will be labelled or judged and that people won’t be able to see all the important parts of you

Not telling anyone about your condition can sometimes make you feel that you are keeping a big secret. This may cause you stress or worry about being discovered. At times it can also make you feel that you are alone and no one understands.

Sometimes you and your parents or carers may have different opinions about the pros and cons of who and what to tell others. We hope this material will help you think through these things together.

Sharing information about your condition

Some young people have told us that telling someone or ‘disclosing’ your condition to others can be positive. It may lead to:

• a sense of relief that it is no longer a secret
• increased support from those around you
• improved understanding from friends, teachers and others, in particular about your treatments and side effects
• increased understanding of the skills you have developed to help you manage your condition (which you can use in other areas of your life)
• a small group of allies who can help out in difficult situations

Who should I tell?

It is up to you who you tell and how much you disclose. Remember that you don’t have to tell everyone everything. Like with any decision you may want to think it through with someone you trust and decide what you say and to whom. What you want to share with other people may change over time.

What could I say?

You may want educate people about the condition and its effects on you day to day. Encourage them to ask questions and ask if they would like to read about the condition. Follow their cues – provide as much information as they are able to take in at that time.

Look after yourself: explain if you can’t join in, and offer an alternative, for example getting together another night. It may be useful to rehearse a little script so that it’s not a big deal for you to explain.

Dealing with unkind comments

From time to time you may experience thoughtless or unkind comments from other young people who don’t understand and who are picking on a difference between them and you. There are different ways of dealing with this including ignoring the comment, responding to it, or using humour.

What else can I do to make me feel less alone with my condition?

Some young people have told us that joining an online group related to their condition has helped. Attending events run by the hospital to meet other people with similar conditions can also be useful.

Further information

 Useful websites

• versusarthritis.org
• oliviasvision.org
• ccaa.org.uk
• nras.org.uk

Useful events and information

• Beads of Life Workshop
• Joints in Action Day
• Facebook group (parents)
• Coffee Mornings
• Christmas party (under 10s)
• School information pack