“For anyone newly diagnosed - it will get better”

10 January 2020
Caitlyn who has juvenile idiopathic arthritis.
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Caitlyn, now 16, was diagnosed with juvenile idiopathic arthritis when she was seven. Here she shares her experiences growing up with the condition and how writing her own blog has helped her to process and share how she’s feeling.

“It can feel scary, but there’s always a way around things”

When I was diagnosed, I don’t really remember how I felt. I remember how my family reacted, and I just felt confused. I hadn’t really heard of arthritis before, but I knew it was mainly associated with older people. It was definitely a shock to hear.

At first, it was mainly my family and teachers who knew about my condition. My friends at school understood as much as I did – which wasn’t much. They knew I struggled with writing, and my teachers gave me a writing support for my table, elevating my books so it was easier to write on.

Even now I still struggle sometimes. I’ve just completed my mock (GCSEs), and I did most of them on a laptop due to extended writing periods. But any impact arthritis has had on school, I’ve always found a way around!

“It’s difficult when you can’t do the things you love most”

I've faced many challenges along the way. Not only with my physical health, but mental health, too. It's hard to accept that I'll never grow out of arthritis.

I missed a lot of school for hospital appointments and a lot of my hobbies (drawing, costume making, writing, etc.) are creative, and involve my hands. Unfortunately, the joints most affected by arthritis are my wrists. Sometimes, this did hinder my creativity and left me feeling lost.

I’m quite open about the fact that I have arthritis, I recently did my English spoken language exam about it. My class was left quite surprised (minus the few who already knew) and I also spent one PSHE lesson showing my form my blog and speaking about the links between arthritis and mental health.

“I started my blog to help me process how I’m feeling”

My blog has been helpful for me personally, but I also hoped that by sharing my own experiences I would be able to help other young people who have arthritis.

I’ve also used it to ask my friends questions too, such as ‘how has me having arthritis impacted our relationship?’ and to my surprise, they all said it hasn’t impacted our friendship at all. I was very happy and relieved to hear this and was reassured that I no longer needed to feel insecure about when we go out together or partake in physical activities.

I usually get the same response when I tell new people that I have arthritis, they say things like, “But you’re so young!”. It’s a common mistake that arthritis is only associated with people who are older, but I try to be as open as I can, so more people understand that young people get it too.

“Make sure to rest and lean on those closest to you for support”

Ibuprofen and rest are two things which definitely help me! I wholeheartedly appreciate the effort taken by my consultant, the people who provide my medication and also anyone and everyone at the hospital that has helped me these past eight years.

On some bad days, I rest and on others I try to push through any physical activity as sometimes doing this can lessen the pain and help mobility.

I've received so much support from my family and friends too, my parents especially. They're always taking time out of their day to take me to the hospital. Without their support I would be in a lot more pain.

To anyone newly diagnosed, or to any young person who also has arthritis: it will get better. There’s going to be bad days, but the good days will outweigh them. I’ve had many bad experiences with arthritis, but I’ve also made some amazing friends and have had some good experiences too.

In your area

Our Young People and Families service are here to help young people and their families feel less isolated and provide peer support opportunities through a variety of events, including our residential activity weekends, workshops, education/careers, and whole family events.

Find out more and keep an eye on what’s coming up in your area or email us on ypf@versusarthritis.org.

Find the right support

If you’re living with arthritis, or know somebody who would benefit from our support, we’re here whenever you need us. You can: