Children's Mental Health Week 2022

Update: Please visit our Mental Health Hub for mental health support and links to other services that can help.

All this week, we've been focussing on the importance of mental health on our social media channels in recognition of Children's Mental Health week. We are very grateful to the parents and young people who contributed their experiences to show just how much a condition such as Juvenile Idiopathic Arthritis (JIA) can have on mental health. We felt they deserved a permanent spot on our website so we have pulled them all together in one place here.

These experiences resonate with so many people and as well as demonstrating the reality of living with JIA, they are also hope-filled and show that it is possible to have a positive outlook in spite of the challenges. But if there are times when it feels like the storm clouds won't pass, it is also vital to seek help.

We all have mental health. Mental health simply means health of the mind and it’s really important to look after our minds just as we look after our physical health.

This week we want to highlight the importance of mental health, especially for children, young people and families who may face additional challenges due to living with a long-term health condition.

Here's what Place 2 Be say about this important week:

“Children’s Mental Health Week is a key national moment for spotlighting and recognising children’s mental health. This year children and adults are being encouraged to consider how they have grown emotionally, recognising that trying new things can help people move beyond their comfort zones, and that challenges and setbacks can help them to mature and adapt.”

We know that living with a long-term condition like Juvenile Idiopathic Arthritis (JIA) can throw extra challenges your way at times for both the child or young person with the condition and their parents/carers.

So for Children’s Mental Health Week this week, we will be taking a look at both the impact that life with JIA can have on mental health as well as remembering some of the positives that we can focus on too.

Receiving a diagnosis of JIA can come as a shock. It may be something that you’d never heard of before. You may feel overwhelmed at the thought of a life-long condition and the impact it will have on your child’s future. As well as coming to terms with the shock of diagnosis, there are also the medications and treatments to understand and adjust to. It can all feel incredibly overwhelming.

It's important to remember that your child is still the same person that they were before their diagnosis. JIA may now be part of their life but it doesn’t have to takeover their whole life.

There is a lot to adjust to but like anything new, it soon becomes part of a new normal.

If you need any extra support, please ask for help. You can speak to your GP or contact one of several organisations such as Mind, Young Minds or The Samaritans that can help.

For those of us that have been on the JIA journey for a while, one of the things many of us have noticed, is that our child with JIA has developed a resilience, courage and strength that they may not have had before.

It's a road that none of us choose to travel and a journey that none of us have chosen to be on, but each day our amazing children inspire us to continue this journey with resilience and strength.

It's vital to remember, that sometimes this means asking for help for someone to stand with you on the journey. Asking for help is never a sign of weakness but shows incredible strength.

One of the biggest challenges that we hear about time and time again is in relation to medication – whether that be via injection, tablet form or infusion.

Some children and young people are affected by the side effects of medications, some may develop an anxiety around needles, some might not want to take their medication because of not wanting to be different to their friends.

As with so many things in life, there is rarely a one-size-fits all solution but there are options if you or your child are struggling with challenges surrounding medication. Being open and honest with your rheumatology team is really important so that they can understand if a medicine is not working for you – not just in terms of effectiveness at treating JIA, but the overall picture of how you are feeling about it.

Keep those lines of communication open – between parent/carer and young person and also with your medical team. Everyone is working together to do what’s best for you.

Having JIA or being a parent/carer of a child with JIA is often described as a rollercoaster. The condition itself can be so variable and so can the emotions that go alongside all of the ups and downs of the journey.

But one of the things we hear from those who have been travelling this road for a while is that the longer that you are on the journey, the stronger you get.

You learn your own coping strategies to deal with flares. You develop the confidence to speak to medical teams as equals to advocate for yourself/your child. You help to educate others about what JIA is and yes, children can get arthritis too and no it’s not just a few aches and pains but a life-long condition which can be debilitating.

Remember that strength is not always about battling through no matter what, but is also asking for help when you need it.

We know it is important to raise awareness of Juvenile Idiopathic Arthritis (JIA) by helping to make others aware of some of the things that living with JIA involves... the medication, the side-effects, the injections, the hospital appointments, managing fatigue, the worry and the "what if's" of living with a life-long condition which can be unpredictable and variable even on a day to day basis, and so many other things could be included in this list.

Raising awareness is not for sympathy. We don't want others to feel sorry for us or our children but we do want them to understand that things are different for us, that sometimes we need to be thinking of so many factors when planning ahead or making decisions.

We want there to be understanding when our children "look fine" but they may actually be struggling or in pain. We want others to understand the difference between just being tired and experiencing fatigue. We want teachers to find the balance between stretching our children to their full potential without pushing them on the days when things are difficult. We want others to understand that on some days success is climbing a mountain whilst on other days, getting out of bed is an achievement. That is the level of variability that some of us are living with and we would love there to be more understanding.

As Children's Mental Health Week draws to a close this weekend, we're sharing one of the most thought-provoking quotes we heard recently from a parent of a young person with Juvenile Idiopathic Arthritis (JIA).

Writing our own story is a motto that we live by here at Juvenile Arthritis Research...the charity was founded because there were areas in research into JIA that no-one else was looking at, there were gaps in information and support for families with JIA that we needed to fill and so little had changed in terms of JIA awareness for several decades. We knew we had to do something, and that something had to make a real difference to the lives of those with JIA and their families. So we began to write our own story and we still continue to do that.

In relation to mental health, the parent that told us this quote was explaining how they had been told by their community nurse that they'd have to re-decorate their yellow kitchen as their child who had just been diagnosed with JIA would be likely to develop a phobia of the colour yellow due to the colour of methotrexate injections being yellow.

They resolved at that moment to let that not be the case and found ways of incorporating the colour yellow into many areas of their lives so that it didn't become an issue. We know of people with JIA who were told that they couldn't go on a school trip or shouldn't go into a certain profession. In those cases, they went onto do those things and show that JIA didn't have to stop them.

Every person's situation is unique, there is rarely a one-size fits all solution, you can find your own ways to overcome some of the challenges that JIA may throw your way...You write your own story!