Holly's story: "My second family" — finding support through arthritis diagnosis at 10

Holly, from Aberdare, Wales, was just 10 when she was diagnosed with polyarticular juvenile idiopathic rheumatoid arthritis and feel very isolated. Thankfully she was soon introduced to Arthritis UK’s Young Person and Families Service (YPFS), a vital source of support who she now considers her ‘second family’. Holly is currently planning a fundraisers for Arthritis UK and wants to become a YPFS volunteer to provide that same vital support to other young people living with arthritis.

Arthritis diagnosis at 10 led to isolation

I was 10 when I was diagnosed with polyarticular juvenile idiopathic rheumatoid arthritis and I remember feeling overwhelmed. I didn’t know what arthritis was so I Googled it, saw images of older people with arthritis, and thought, ‘Wow, I literally have a condition no other young person has.’ I felt quite isolated.

Covid delayed my specialist appointments by three months and, in that time, I lost the ability to walk and had an awful rash that made my skin feel like it was burning off in the shower. We didn’t know what was going on and it was scary for my family too. 

School was especially challenging, I was diagnosed in year 6 and I was never there because I was so sick. By year 9 it was affecting my mental health so I was referred to a psychologist who worked with school. It was stressful not knowing what was wrong and yet trying to explain it to others, luckily my medical team contacted school so it wasn’t all on me to educate them. 

Little things added up, for example I was allowed to wear trainers from Year 7 to 11 because school shoes don’t have ankle support. I also had a laptop for coursework as I can’t keep up when writing and was allowed to leave lessons five minutes early with a friend so I could get from class to class safely. During exams, they let me leave a mock when I had a bad flare because the room was so cold and move to a room where we could control the temperature.

The hard moments have fuelled my fight for change

Not every teacher was understanding and I had a few interactions with cover teachers who would doubt me. Once I had back spasms in PE but the student teacher said, ‘You don’t have arthritis, that’s something old people get. If you’re going to fake something at least make it realistic’. I just went into a corner and sobbed.

Although moments when someone dismisses my arthritis crush me, they also add fuel to the fire. That time I told the head and they dealt with it but trainee teachers need better education so other young people with arthritis don’t go through what I did. I know it can be frustrating for teachers, but it’s even more frustrating for a student with arthritis. They are dealing with arthritis for a few hours, I’m dealing with it every day of my life.

I’m now about to start my final year at college studying musical theatre and was recently offered a place to join and train with a dance workshop once a month. Never in a million years did I think I would get this opportunity, it’s a big accomplishment for me and I hope it inspires other young people with arthritis, shows them they can achieve things they never believed possible.

Vital support from YPFS

Taking care of my mental health has been especially important, as my psychologist said, my journey will always be a rollercoaster but I’ll always make it to the end. Having Arthritis UK there from the start gave me a certain stability.

When I met my rheumatology team for the first time I was introduced to someone from the Young People and Families Service (YPFS) at Arthritis UK. I’ve made most of my friends through Arthritis UK and we have group chats where we help each other through the bad days, that community is everything.

I go to the YPFS residential every year and I love it, meeting other young people with arthritis is so valuable. When I look at them I see their diagnosis didn’t stop them, it wasn’t the end of their story.

I did a fundraiser in 2022 for three charities, including Arthritis UK, doing 100 different karate moves every day in May to raise £1215. This October I’m doing one just for Arthritis UK, a night at the musicals where there will be performance and we will share stories of people with arthritis and celebrate the work of Arthritis UK. 

I’ve been working with YPFS for six years, they’re like a second family and I don’t want to say goodbye so I’m hoping to stay on as a volunteer, helping out at events. I know what a difference YPFS has made to me so being part of that for other young people feels meaningful.