There is no right or wrong way to cope with a medical diagnosis. For most of us, it takes time to understand the illness and treatments.

Depending on how old you are, initially, you may leave some of the “knowing stuff” to your caregivers, but as you get older it is important to get an understanding of your illness and its treatments so that you can be ready for when you are an adult. We also encourage you to share how you feel.

The most common roadmap for patients is that they will be seeing the doctor on a regular basis. You may need to see a physiotherapist and possibly need treatments in the hospital.

Physical activity

It is very important for people with chronic illnesses to stay as active so that their muscles stay strong and joints don’t become stiff.

When first diagnosed, or when there is a lot of inflammation in the joints physical activity might need to be limited until the joint symptoms settle down.

The physiotherapist or doctor can provide specific advice about what types of activities are appropriate and will advise when it is safe to return to your usual level of exercise and sport.

The long-term goal is to participate in sport at school and other activities.

The Royal Children's Hospital physiotherapy guide, although written specifically for Juvenile Idiopathic Arthritis, provides general advice on physical activity.

Wellbeing

For some young people it feels like it has been a complete upheaval to their life. For others, it is something that is quite manageable. 

Every family approaches this change differently. Sometimes parents may be a bit overwhelmed and get a bit overprotective. They may try to make you feel better by giving you “stuff”. In the long term, we know this isn’t good for you. Continuing doing the things you want to do and still completing your chores around the house are important parts of your life. Keeping things as “normal” as possible helps you and the rest of your family as well.

A positive outlook and continued physical activity will help you get adjusted to the illness. This doesn’t mean you won’t have days where you’re upset or angry because of your illness, this is all very normal.

Expressing yourself is a very helpful way to put things into perspective. Some young people want to talk, some write, some draw, some want to play sport or their music. All these are really useful ways of directing your anger or frustration.

Have you told any of your friends about your illness? It can help to tell your closest mates. Your rheumatology service can support you in doing this - just ask them.

Sometimes the best thing to do is chat with someone who has had the same experience as you have had. 

If you have been diagnosed with arthritis, Arthritis & Osteoporosis NSW have opportunities for children and young people to interact with other children through camps.

Kids and young people alike have told us they have really enjoyed the camps, not because they sat around “talking”, but instead they go a lot of fun things to do and realised that there are other people like them.