Learning that your child has arthritis can be confusing and worrying. You may have lots of questions, especially if reaching a diagnosis has taken some time, as it often does.
JIA (juvenile idiopathic arthritis) is the most common type of arthritis in children and young people under the age of 16.
Caring for a child with arthritis affects the whole family. Besides having to explain the condition to family members and friends, there may be challenges with schooling and extra-curricular activities. The good news is that with good management and support, your child can live a normal life. They don’t have to miss out on the fun of being a child! Some will even outgrow the condition and will not need treatment as adults.
Parents of children diagnosed with JIA often talk about the shock of being told their child has a condition normally associated with old age. There can be a range of emotions – bewilderment, anger, denial, and most of all, wondering why.
That’s why connecting with other parents of children with JIA is so helpful. There’s something special about sharing your experience with someone else in similar circumstances who understands exactly what you’re going through.
It is important to remember when talking with other parents about your child’s JIA and treatment that there are different types of JIA and even within these subtypes the condition can behaviour in different ways and require different management.
If the conversations you have with other parents about your child’s JIA and its management leave you with questions, we encourage you to talk to your health team.
Building resilience
Raising a child with arthritis brings unique challenges and also moments of strength and growth. Whether your tamariki has just been diagnosed or your whānau has been managing arthritis for years, it’s normal to feel overwhelmed at times. You may find yourself navigating school routines, appointments, flare-ups, fatigue, and the emotions that come with watching your child live with a long-term condition.
Building resilience doesn’t mean having all the answers or never feeling stressed. It’s about adapting well to adversity, finding ways to cope and bounce back, and learning as you go. Paediatric rheumatology nurse Nicola Gray explains that resilience is a process not a personality trait and it develops over time through small, consistent actions.
Some of those actions include:
- Acknowledging your feelings about the diagnosis and giving yourself permission to not have it all together
- Modelling resilience by taking decisive actions when things feel uncertain, and staying hopeful about what’s ahead
- Scaffolding your child’s wellbeing by helping them develop life skills, encouraging their independence, and talking positively about both the hard times and the wins
- Introducing simple coping strategies like deep breathing, visualisation, humour, and reflection
- Creating connection by involving your child in setting goals and making decisions, while also surrounding them with positive relationships
- Using validation to let your child know that their feelings make sense. This can help them learn to label and manage emotions in healthy ways
Life with arthritis can be hard, but it also creates opportunities for growth, creativity, and strong whānau bonds. Every step forward, no matter how small, builds strength. You don’t have to do it alone; we’re here to walk alongside you.
