Kipo changed his T-shirt from yellow to blue to support our international friends with the international colour of arthritis awareness: #GoBlue4ArthritisKids
World Arthritis Day 2022: Hearing the voices of young people with JIA
After Sophie's amazing Instagram takeover for World Arthritis Day 2021, we once again wanted to share real voices explaining the frustrations and challenges of being a young person with Juvenile Idiopathic Arthritis (JIA). So we invited Chloe, Liz and Sophie to take over our Instagram account for World Arthritis Day 2022.
What you will notice is that in amongst the struggles and difficulties runs a theme of inspiration and hope. That despite the challenges they face, these young people are leading their lives with a positive attitude - seeing the good even in difficult circumstances, following their dreams and inspiring and encouraging others too.
You'll find their original posts on our Instagram account but we think they have done such a brilliant job that we wanted to give their voices a permanent spot on our website here too.
Hi, I’m Chloe and I’m 14 years old. You might remember seeing my JIA story recently on the JAR website.
I wanted to share some of the hardest things I’ve found about having arthritis for World Arthritis Day.
The huge lack of awareness is definitely one of the hardest things about it. Not everyone knows about arthritis and that young people can get it. Because it is often an invisible illness that you can’t see, people don't always relate to it when you try and explain.
That’s why I want to raise awareness on important days like today, World Arthritis Day, and for WORD day (World yOung Rheumatic Diseases day) which happens in March each year.
For a long time, before my medication was working for me as it should, I could have days and days of pain and it made me so tired. It can hurt a lot and I could come across as being very quiet. I am lucky because I have some amazing friends who I don't have to explain my feelings about arthritis to. I don't like a fuss to be made of me but then because people can't see what is wrong, it can be really hard! The tricky thing is it can change from day to day so people say things they don't mean to come across as hurtful but can feel a bit hard to hear; like "but you were fine yesterday" or "but you could do it yesterday!"
One final thing I want to share with you for World Arthritis Day before I hand over to Liz, is an example of a conversation that I seem to have ALL the time with people.
It goes like this:
What's wrong with you?
I am feeling a bit sore.
Why are you sore?
I have arthritis.
Don't old people get arthritis? Aren't you too young? Will your bones break?
It can be embarrassing and so awkward to explain! I would love people to understand more and if there was greater awareness then maybe these conversations would be easier.
Thank you for making a difference by sharing these posts for World Arthritis Day so that one day, we will live in a world where there is greater awareness and understanding that arthritis can affect young people too!
Me, My JIA and the JAR Charity:
When I was diagnosed 16 years ago, JIA was not widely known about or understood and we didn’t have a charity like JAR who could help us. I, like many other people, thought arthritis was something older people get!! But having JIA myself opened my eyes to the fact that anyone at any age can have arthritis!!
Several years after my diagnosis, I was one of the first patients to be given an Anti-TNF medication which changed my life and helped turn a negative into a positive!!
I just wish I had kept a diary!! Even though it is not easy it can be a real help to keep a diary, whether it is on paper, voice recorded or a video diary and whether you do it yourself or get help with it - it can give you something to look back on, something to help you remember coping techniques or if you want to you could even turn it into a book to help others.
Although sadly I didn’t keep a diary, there were some things that would never leave me. So with help from my family and friends, I used my experiences, my journey and my passions to write my own book, which is called “Coastal Expressions” and is available on Amazon in Paperback and Kindle form or you can order signed copies from myself via my Facebook Page: Liz Sabin – Author. [You can also read more about Liz and find out about her book when she shared her JIA story with us here.]
I wish all those years ago we had a charity like Juvenile Arthritis Research to help us and I’m very grateful for the work they are doing to raise awareness and help others with JIA, so please if you or anyone you know has JIA or you just want to know more about JIA and the work that JAR does, have a look at their website and get in touch with them as I’m sure they can help in many ways.
As an adult with JIA it is common to hear people say “Oh it’s not Juvenile Arthritis now you are an adult, it must be called Rheumatoid arthritis by now” or words to that effect, which is not the case at all!! “Juvenile” means symptoms began before the age of 16, it doesn’t mean children’s arthritis!! So no, it doesn’t change to any other form of arthritis. If it is JIA, it always will be JIA no matter how old you are!!
Another common phrase I hear, which really annoys me, is “You don’t look disabled!!” Just because you don’t look disabled, doesn’t mean you’re are not disabled!! Disabilities come in all shapes and sizes and can be hidden and unpredictable. So a saying I like is “Don’t judge a book by its cover!!”.
These are common things that people with JIA and many other disabilities have to fight against and a difficult fight that is!!
Arthritis And Adulthood:
Is arthritis easier to understand and cope with as an adult?
The simple answer is, it is never easy no matter how old you are!! Yes you may be able to understand what’s going on better as an adult but there are a lot of things that having arthritis changes.
For instance, I’m sure, like me, when you are/were a child you think/thought and maybe even imagine(d) what you will/would do when you grow up, such as getting married, having a family, getting your own home, a job or even your own vehicle!! At the time it all seems easy and a given, but then you get JIA and all those things suddenly become harder and have added complications. It’s not necessarily that you can't do all of those things because a lot of the time you can, but to do them you have to take different things into consideration, such as whether things need to be adapted, whether you need help, what physical and mental effects these things may have on you and whether people will give you the support you need.
Arthritis never stops challenging you, no matter how old you are, you just have to keep going and remember these sayings “I am who I am” and “If at first you don’t succeed try, try and try again” and always try to turn negatives into positives!!
"Help" - a poem by Liz Sabin
One of the hardest words for someone to say is “Help”, but it’s very often needed more than you realise.
It is very frustrating and upsetting when you realise you need “Help” and you feel your independence slipping away but you mustn’t be afraid to ask for “Help”. There are many people and items that can “Help” you so you don’t have to struggle.
Getting help doesn’t have to be all negative, it can also be positive, it can give you strength and courage to keep going and to “Help” you find a way to live the best way you can.
On the other hand don’t be afraid to “Help” or to offer “Help” as just knowing someone is there and willing to “Help” is a big “Help” in itself, though be careful what you do and how you do it so that everyone is kept safe.
Please don’t be afraid to ask for “Help”, to offer “Help”, to “Help” and to look out for signs that “Help” is needed, even little things can go a long way.
Arthur It Is – a poem by Liz Sabin
Arthur doesn’t mind how old you are,
And who you are is neither here nor there,
For even though it could leave a scar,
Your life is all it wants to share.
Arthur brings you medications and pain,
It can get in your eyes and in your mind,
It stops you living life in the fast lane,
But Arthur’s not always unkind.
Arthur is a friend who never goes away,
It helps you learn how much you can do,
How to do and see things in a different way,
And even though Arthur has its moments it cares about you too.
Arthur changes lives,
And gets people in a tiz,
In our bodies it thrives,
As Arthur It Is.
Thank you so much for taking the time to read my ramblings and I hope they help in some way or another. Also a huge thank you to Juvenile Arthritis Research for including me in their posts and for all the brilliant work they are doing.
Stay safe & best wishes
Liz Sabin (adult with JIA and Author)
I’m now handing over to Sophie who did a brilliant Instagram takeover for World Arthritis Day last year with JAR. She’s back again this year to leave you with some inspiration.
Life with JIA?
Since it’s World Arthritis Day, I thought I would share how I do life with JIA to help anyone who is feeling lost, to know how special and worthy they are! I was diagnosed with arthritis when I was 10 years old. It was definitely a scary time and everything was very uncertain. I had regular treatment, regular hospital appointments and a fair amount of struggles. You can read more of my story here.
My dream has always been to be a hairstylist. However, everyone including doctors, were unsure how I could cope being stood up for so long and being at funny angles occasionally. I really wanted to follow this dream that I was so very passionate about, so I got a Saturday Job whilst I was at school. It was very hard at times dealing with school and a job, but I loved it. Throughout my qualification, I adapted different ways of doing things, doing it the Sophie way! I did find it very difficult at times but eventually I figured things out!
Three years down the line, I’m now the proud owner of my own business, Sophie’s Hair Magic (@SophiesHair_Magic ), and I do it all with JIA! I’ve never let anything stop me - you just have to slightly adapt the way you do things. This just makes you appreciate the little things even more and realise how far you’ve come! Never give up, you can do it!
[If you missed Sophie's posts last year, they are well worth a read. You can find them here. ]
Here at Juvenile Arthritis Research, we feel it is important to show a balance of the reality of life with JIA as well as offering hope in showing how people with JIA overcome many of the challenges they face. Chloe, Liz and Sophie have managed to do this so well in what they have shared today.
When we invited them to take part in our Instagram takeover for World Arthritis Day, we had no idea just how incredibly poignant and inspiring their posts would be. We know much of what they have said has resonated with the experiences of many of us with JIA and we just want to say the biggest THANK YOU for doing such a terrific job of sharing their experiences and wise words with us today. And THANK YOU to everyone who has commented and shared their posts - as well as being an encouragement to Chloe, Liz and Sophie, it also makes a real difference in reaching others to spread the word that arthritis affects all ages.
And if you would like to share your JIA story with us, either on our website or as part of a future initiative like this one, please get in touch. Raising awareness is vitally important to break the stigma, help those with JIA feel less alone and to improve diagnosis times for those awaiting diagnosis.
You can also use the "Your Voice" virtual comment box to submit comments, opinions, frustrations and anything else JIA-related.
Please remember that these posts are the personal experiences of Chloe, Liz and Sophie, so always consult your own doctor and medical teams for any medical advice.