Coping with an inflammatory rheumatic condition diagnosis - Information for parents and carers

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

You and your family may experience a range of feelings including some of those listed below:

How 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 operating on autopilot to get through the day. It might feel hard to think about the diagnosis.

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

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

Worry: You might worry about how this is going to change your family’s life, what your child’s treatment will be like and what will happen in the future.

Guilt: You might 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. Sometimes parents might also worry that other family members are feeling left out while there is a lot of focus on your child with the condition.

Sadness: You may feel sad that this has happened to your child and to your family. You might feel sad when thinking about the future and wonder if it will be like the one you hoped for.

Relief: You might feel relieved to finally know what is happening to your child and how their condition will be treated.

These are all normal feelings to have just after your child has been diagnosed with a long-term condition.

What can you do to help with these feelings?

Remember that no one is to blame for the diagnosis

It might feel unfair that this has happened to your family, but there is nothing that you or your doctors could have done to stop this.

Talk about it

Talking through your feelings with family, friends and members of the rheumatology team can help. Some people find writing their thoughts and feelings in a diary is helpful. You can also find support groups and message boards online.

Ask for help

You do not have to do this alone and asking for help is a way of coping. There is a lot of information to take on at first and you probably have many questions. Do not be afraid to ask people to repeat themselves or to write down information. Let the rheumatology team know if you have any questions and you can speak to them on the phone or email them if you think of something after an appointment.

Take time out

At first it might feel like your life is being dominated by your child’s condition and everything else is getting pushed aside. Make sure you take time to plan fun activities and things to look forward to for your family. It is also important that you take time for yourself.

Find ways to help your child take control

Children often manage better when they are able to have some control over their treatment. You might ask your child to make some simple choices about the day of the week they want their treatment or whether they want to sit on someone’s lap or in a chair. You could make a calendar and ask them to tick off each day they have taken their medication.

Sometimes it can be hard for children to take their medication. Helping them to distract themselves by listening to music, playing a game or completing a puzzle can help, as can a little reward when they have had their injection. Rewards might include being allowed to choose a family activity or film for you all to enjoy.

For many people, the feelings peak and trough over time, and young people and families gradually become used to living with a longer-term condition. However, some people find that these feelings are hard to cope with and have a significant impact on their daily life. If this happens, it can be helpful to talk to someone about this. If you or your child are finding this hard then you might find it helpful to 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. Clinical psychologists are not medical doctors; they do not prescribe medication or perform any physical examinations.

What do they do?

They work with children, young people and their families to:

• Help children understand what is happening for them and their feelings about this.
• Help children and families to manage their treatment. This may be done individually or with parents / caregivers.
• Teach children and families about pain management techniques.
• Help families to prepare for transition to adult services when the child is a teenager.
• Help children to go home or back to school following a prolonged hospital stay or a long time at home.

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.