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Talking to others about my health condition


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.

🗨 ‘I’ve got arthritis which means that my joints are sometimes stiff and painful. Some days I feel much better and I try not to let it stop me from doing anything I want to do’.

You could practise what to say with a friend or a family member first. For each person you want to tell you might want to think through with someone you trust the pros and cons of telling them and what you might say.

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.

🗨 “I’m having a flare up of my arthritis so I’m a bit slow today. I’ll get quicker, what’s your excuse?”
🗨 “I’ve got arthritis – what’s your problem?”

The important thing is to remain positive and confident and not to let people drag you down.

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

Useful events and information

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

If you wish to meet someone else with JIA or discuss any of these issues further please contact the Rheumatology Team.


Rheumatology Nurses
0114 271 7786

Occupational Therapist
0114 271 7227

Psychology Department
0114 271 7296

Is something missing from this resource that you think should be included? Please let us know

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Please note: this is a generic information sheet relating to care at Sheffield Children’s NHS FT. These details may not reflect treatment at other hospitals. This information is not intended as a substitute for professional medical care. Always follow your healthcare professionals’ instructions. If this resource relates to medicines, please read it alongside the medicine manufacturer’s patient information leaflet. If this information has been translated into another language from English, efforts have been made to maintain accuracy, but there may still be some translation errors. If you are unsure about any of the guidance in this resource or have specific questions about how it relates to your child, always ask your healthcare professional for further advice.

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Rheumatology Team
Tel: 0114 2717786


Western Bank
S10 2TH

United Kingdom

Switchboard: 0114 271 7000

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