Coping with an inflammatory rheumatic condition diagnosis - Information for young people

Your diagnosis of a rheumatic condition (such as arthritis, lupus or another condition) might bring up lots of different feelings. Your rheumatology team are here to support you in adjusting to your diagnosis, managing your condition and learning more about it.

How do people sometimes feel after diagnosis?

Shock: You might not have expected this diagnosis and for a while after it might feel like you are in a dream or that things do not feel real for you. You might feel like you are trying to do everything on autopilot to get through the day.

Denial: The news may feel so overwhelming that you simply cannot believe it has happened to you or that it is real.

Anger: You may find yourself feeling angry with the doctor, nurses, or with your family members. You might ask, "why me?", and feel that it’s very unfair that this has happened to you.

Worry: You might worry about how this is going to change your life, what your treatment will be like and what will happen next for you.

Guilt: You may wonder if anything could have been done to prevent this or to get a diagnosis sooner. Sometimes people feel it is their fault or they have done something to deserve this, even though this is not true.

Sadness: You may feel sad that this has happened to you.

Relief: You might feel relieved to finally know what is happening to you and how it will be treated.

These are all normal feelings to have just after you are diagnosed. This is a process that many young people and families go through.

What can you do to help with these feelings?

Remember that this is not your fault

Having your condition is no one’s fault. It might not feel fair that this has happened, but there is nothing that you could have done to stop this happening.

Talk about it

Talking about your feelings with family, friends and members of the rheumatology team can help. If it feels hard to start a conversation, you could write a note or send a text message to say how you are feeling. Some people find writing their thoughts and feelings in a diary is helpful. Many conditions have support groups where you can speak to other people who have the same diagnosis as you. If you would like to know more about this, please speak with any member of the rheumatology team.

Ask for help

You do not have to do this alone. Asking for help is a way of coping. There is a lot of information to take on at first, so do not be afraid to ask people to say something again or write it down if you do not understand it. Let the rheumatology team know if you have any questions; you can speak to them on the phone or email them if you think of something after an appointment.

Have something to look forward to and celebrate your achievements

At first, it might feel like your life is being dominated by your condition and that it is taking over. Make sure you take time to plan fun activities and things to look forward to. It can be important to celebrate doing everyday things, too, like getting dressed independently or walking to school. Sometimes it can feel hard to take your medication and it might help to reward yourself for this, for example by choosing a family activity or film for you all to enjoy.

Find ways to take control

It is important to find some ways to take control of managing your condition. You might decide the time and place you want to have your treatment each week or what music you would like to listen to during it. You might have a chart showing which medication you take on which day and tick this off as you take it. As you get older, you might choose to give yourself your medication with an adult monitoring this.

For many people, the difficult feelings go away with time as they become used to living with their condition. However, for some people the feelings last longer or feel hard to cope with. If, after some time of adjustment, you would like to talk to someone other than friends and family, you can also talk to the paediatric rheumatology clinical psychologist about your feelings.

Who is the paediatric rheumatology clinical psychologist?

The clinical psychologist is part of the Psychological Medicine Service for Children, Young People and Families, which specialises in supporting children and young people diagnosed with medical conditions and physical health needs. In addition, they may also offer support to your family members if they think it would be helpful to meet with us. Clinical psychologists are not medical doctors; they do not prescribe medication, or perform any physical examinations.

What do they do?

They work directly with children and young people to:

• Offer support with difficult feelings about having a health condition, such as sadness, worry, anger, or stress.
• Help you deal with worries about how physical health may affect life at school, at home, or with family and friends.
• Help you think about how to talk to friends and other people about your physical health.
• Give you a space to talk about how you are feeling and how you are managing.
• Help you to understand what your diagnosis means for you and how you are adjusting to it.
• Support you to look after your health and cope with the day-to-day challenges it may bring.
• Help you to understand your treatment, and support you to find ways of managing with treatments you might be struggling with.

They can also work with your families/ carers to best support you.

How can I contact the paediatric rheumatology clinical psychologist?

You can talk to a member of the paediatric rheumatology team at Addenbrooke’s, who will be able to make a referral. You can also make contact directly:

Psychological Medicines Service for Children, Young People and Families
Box 267 Addenbrooke’s Hospital
01223 216 878

Further information

To make comments or raise concerns about the Trust's services, please contact our Patient Advice and Liaison Service (PALS). Ask a staff member to direct you to PALS, or call us on 01223 216 756 or email PALS.