Olivia

"Always remember when you are struggling you are not alone. It is not easy - trust me, I know. Stay strong and never give up."

Olivia is 10 years old and wanted to share her JIA story written in her own words. She has written it in the style of chapters and called her story “Arthritis and Me”. 

"Arthritis and Me" by Olivia aged 10.

In this story I will be talking about my life with juvenile idiopathic arthritis (JIA). 

Chapter one - before diagnosis… 

When I was born in 2016, I had no idea what was going to happen later on in life. I didn't have any problems growing up. I was running, jumping, and climbing with my older brother and sister.

Around 2024, when I was 8 years old, I started noticing my feet felt stiff and it hurt to walk. My mam thought it was just growing pains but little did we know it was far worse. I started having paracetamol a lot and this is when we finally made a trip to the doctor. 

Chapter two - the diagnosis

After loads of x-rays and trips to the doctor, we went to the hospital. That’s where my life felt like it went downhill. I had to have blood tests. Then I was diagnosed with JIA. They gave me lots of tablets to start with including steroid tablets, then another tablet to stop side effects.

This took me a lot of time to get used to. I had to take them and then go to school. This made me feel sad because I felt sick after taking them and they were not very nice. After completing my first week of steroid medication, the steroids were reduced by one each week until I was on none and had a checkup with the consultant. When I saw the consultant, he noticed that my feet were still really swollen. We realised that the steroids hadn’t worked. He put me back on 9 tablets until it was decided what we needed to do next. I went home and started the course all over again but this time the pain was worse than ever and even walking a few steps hurt so bad I just gave up walking. 

The next month I saw the consultant for a routine checkup. They told me I had to be admitted to the ward for an IV drip of steroids for 3 days because the steroids yet again didn't work. When I got the news that I needed an IV drip I started crying because I don’t like needles and thought it would hurt. Once I calmed down, I went to the ward where they gave me a room and let me settle for a bit. When they took me down to the room for the special tube (cannula) to be put in which the IV drip would then go through, they gave me numbing cream, cold spray and a buzzy bee to help the pain. They put it in my hand and then I screamed. It hurt so bad I thought I was going to pass out or be sick. While my mam was over there panicking asking if this was a normal reaction like she always does. Of course, they said yes then she came and hugged me tightly before we went back to my room where they connected me to a longer tube to put medicine in for 1 HOUR. It was COLD! They gave me a warm pack and left. I had to keep the tube (cannula) in my hand for 3 days. 

The next day, they gave me a telly and asked what I liked doing. I said I like doing crafts and LEGO so then they came back with a LEGO set of flowers and some colouring pens and paper. I had to call my dad to help with the LEGO because my mam is terrible at it. 

On the final day, I was scared about them taking the tube out because I thought it would hurt. It didn’t. It tickled and fell out when I took the plaster off. They trained us on my new medication which is a jab (injection) in my upper leg. It is called methotrexate. Then I spoke with my physio and went home and slept.

After a few weeks on my new medication, I had a checkup and then….. 

Chapter three - the big dayyy

It was the day I was going to have steroid injections in my feet. I was crying while waiting because I was scared. My dad was laughing at me while my mam was comforting me. I walked into theatre and met the person who put me to sleep (the anaesthetist) and the doctor who would be doing the steroid injections. They were using a mask and gas for me to sleep through the procedure. If you ever get the mask and you feel dizzy, don’t panic. It’s the anaesthetic kicking in. They gave me 5 injections into each foot, so 10 altogether. I was asleep for about 1 hour. All I remember is me saying “my head! my head!” then everything went muffled - and then boom I was in the recovery room. I waited for my mam to come. I guessed it right, she sprinted in. After I was able to eat something and go to the toilet, I realised that I still couldn't walk so they wheeled me to the car and my dad lifted me into the chair. When we got home, we borrowed my neighbours wheelchair to get around. We even went to Alton Towers and had to take the wheelchair with us. Spoiler alert – In my opinion the Bluey ride is not a young children's ride - even my dad thought it was fast!

Chapter four - how I am doing now 

As of this summer, as a 10-year-old, I now run, I now jump, I now climb. People think it’s not that big of a deal to do all these things that most 10-year-olds can do. But for me it is massive. Even when I run small distances, or jump small heights or even only climb 2 steps at indoor climbing, my mam and dad are so proud. I’m proud of myself too! I can do everything I love doing now.

Chapter five – my top tips 

Always remember when you are struggling you are not alone. It is not easy - trust me, I know. Stay strong and never give up. Even if you think it will never get better, things often do with the right treatment and support. Some people will tell you that arthritis is for old people. I’m here to tell you that it’s not. That’s why it’s called ‘J’ I A with the J standing for JUVENILE because it is when arthritis symptoms start under the age of 16.  But the most important thing is never give up and to keep trying! 

If you would like to share your JIA story, please get in touch.

If you are concerned that a child or young person may have JIA and would like to know more, please visit www.thinkJIA.org

For support at school, please visit our Parent Zone. Schools and universities can request an information toolkit to support children and young people with JIA in their setting at www.jarproject.org/schools 

Many of the resources we have developed can support children and young people at school and with explaining their condition to others such as our "I have JIA" cards. You can access these here.

For support with Mental health, please see our Mental health and wellbeing page here.  

You can also help us be there to make life better for children and families affected by JIA by supporting our work at www.jarproject.org/fundraising