10. JIA related challenges

When newly diagnosed, it’s a good idea to think about who needs to be told what and why. The “why” in practical terms will help the person who receives the information understand the impact JIA has on your child and their role in providing suitable support. JIA is not as common as some other childhood conditions and so there is a good chance that other people in your child’s life will not have any knowledge of the condition. For example, there could be frequent hospital and GP visits and there may be limitations on what activities your child can take part in during the early period following diagnosis whilst the treatment plan is settling in. Children and young people may experience pain and restriction in getting around and just doing normal day to day activities. Long-term conditions like JIA don’t just affect the child; the whole family is affected. The family could be involved in major changes to priorities and daily schedules. It’s important to understand the impact that looking after your child and understandably giving them extra care and attention, can have on their siblings. It can explain changes in behaviour which may seem less than helpful at times. With younger children, it might be useful to keep a diary of how your child is feeling. There are some good “feelings” information sheets you can download from the internet to help with communication and understanding.

These are made up of cartoon faces demonstrating various moods (happy, sad, frustrated, angry) and can be used to help your child to express to you their mood. You can keep a record of this to show to the healthcare professional. Most children don’t like to stand out from the crowd and they usually don’t want others to see them in pain or feeling uncomfortable; this may lead to them wanting to stay off school or nursery and losing their confidence.

As they get older, children and young people will naturally push against the boundaries set and test their independence, as all young people do. During these times, try to remain firm over the things that they have no choice over, like taking medication. If you say “would you like to take your medication now?” the chances are they will say no! Support your child to be resilient – the ability to adapt well to adversity, or even significant sources of stress. Resilience is an important attribute which can help with all that life can throw at us, for example, teaching them to accept change as being part of life – like when children move up in school or when we have goals that are no longer obtainable, and we must change them for more reachable ones.

Reassure your child that this disease is not their fault and try to avoid overprotecting them as they can miss out on activities with their friends. Overprotection, whilst understandable, won’t help their developing knowledge or independence. If you think your child is suffering with low self-esteem, feeling isolated or generally low, make sure you ask the specialist nurse or consultant if there are any resources to help. Your GP may also refer you to local psychology services or counselling support.