Discover our book club for young people living with arthritis
04 January 2024
There’s nothing like getting lost in a brilliant book, but it’s even better when you can have a good natter about it with your friends — and that’s what Young Readers Versus Arthritis is all about.
This is a book club for young people (aged 11-24) living with arthritis and musculoskeletal (MSK) conditions.
Gabi, 16, and Lydia, 24, are two keen members. Here they tell us about their experience living with arthritis, why representation matters, and how Young Readers Versus Arthritis offers a sense of community.
Living with arthritis as a young person
Gabi, 16, from Wales, lives with juvenile idiopathic arthritis (JIA) and juvenile dermatomyositis (JDM).
JIA occurs before the age of 16. It happens when the immune system (the body’s natural self-defence system) attacks the body. It can cause many symptoms including painful, stiff and swollen joints.
“It varies day-to-day, but my symptoms are usually clicky, achy joints, and sometimes my joints just give out,” Gabi explains. “If I'm walking, I might suddenly feel a sharp pain, like there’s a knife going through [my joint]. But it’s not just the physical symptoms, I also get fatigue and tiredness.”
Lydia, 24, from Scotland, lives with undifferentiated inflammatory arthritis. Inflammatory arthritis is when the immune system, the body’s natural defence system, goes out of balance and attacks the joints making them inflamed, swollen and painful.
Inflammatory arthritis is called ‘undifferentiated’ where it doesn’t exactly fit the pattern of a named inflammatory arthritis type such as rheumatoid arthritis, or psoriatic arthritis.
“On the physical side, my symptoms are mostly concentrated in my hands and my fingers,” Lydia explains. “I couldn’t tie my shoes, I couldn't cut food, and it slowly started affecting other joints like my knees and hips. But it's not just a physical thing: it's mental, it’s emotional, it's a whole process.”
The Versus Arthritis Book Club
At a recent residential event, a group of young people living with arthritis bonded over their love of reading. This sparked the idea of creating a book club.
Aimed at young people living with MSK conditions, Young Readers Versus Arthritis gives Lydia and Gabi the chance to read the latest page-turners and connect to other young people.
There are now two book club groups available:
- Young Readers Book Club (for 11-16 year olds)
- Young Readers Book Club (for 16-24 year olds)
We also recently hosted a discussion with Jenny Ireland, an author who has psoriatic arthritis. Her young adult novel is about 17-year-old Juliet, who lives with juvenile idiopathic arthritis.
Since it started, Young Readers Versus Arthritis has grown and grown across the UK. So, we’ve opened a waiting list for those who want to join.
Enjoying reading again
When you’re dealing with fatigue – as well as all of life’s distractions - it can be difficult to make time for reading. But Lydia stresses you don’t have to be a literary pro to take part in Young Readers Versus Arthritis.
“If you’ve not finished the book in time, that’s okay. If you don’t understand it, that’s okay,” she says. “Many of us have brain fog, and there’s no pressure or expectations. You’re not going to get a bad grade. We're just all there to read more and get to chat with each other.”
Lydia says that rediscovering her love of books has been a “fantastic” way to pass the time when waiting for hospital appointments.
“Before my diagnosis, I was huge into reading. Every family has one child who is book-obsessed and that was me. Then when I was diagnosed, I just stopped reading for fun. Book club was the first non-university book I had read in nearly five years.
“One of the books we read ends on a cliff-hanger, so I bought the next books in the series and took those along to hospital appointments. It was a great distraction in the hospital waiting room.”
On the flipside, Gabi says Young Readers Versus Arthritis has sparked a new-found love of reading.
“Before this, I didn’t really enjoy it. But after I joined the book club, everything changed. I thought ‘this doesn't seem so bad’. I have six weeks to read a book. I can take my time.”
Diversity and representation in books
Even though around 12,000 young people across the UK live with juvenile idiopathic arthritis (JIA), there’s still a common misconception that arthritis only affects older people. Plus, we rarely get to see thoughtful representations of arthritis in books, films and TV.
For that reason, we decided to read Jenny Ireland’s young adult novel about 17-year-old Juliet, who lives with juvenile idiopathic arthritis.
“At book club, we discussed how very few books we can think of have disabled people. But when we read that book, I felt very seen. I kept seeing myself in the character and having to pause to reflect.
“It was very comforting because it felt like it was written with me as the target audience, which I don't get from books much. It was almost like I knew her. I viewed her as one of my friends from Versus Arthritis.”
Writing as an outlet
Young Readers Versus Arthritis recently hosted a talk with author Jenny Ireland, who lives with psoriatic arthritis. She talked about her diagnosis journey, writing her book, and how she’s adapted to cope with her symptoms.
“We were shocked when she told us that she has arthritis,” says Gabi. “She shared her story and now I think a lot of us in book club want to share our story too.”
With that in mind, Gabi writes a lot of poems in her spare time. “I hadn’t realised how much I’d struggled, until I started writing poems,” she says. “It helps you understand that, even though you have the condition, you aren’t alone.”
Developing a community
Young Readers Versus Arthritis isn’t just about encouraging reading, it’s also a safe space where you can connect with others who understand what it’s like to live with pain and fatigue.
“It’s really fun to get to know people who also have arthritis,” says Gabi. “People share their tips and advice. And if you're having a bad day, they do everything in their power to cheer you up.”
Lydia says that our activities for young people, such as the book club, have given her a sense of community. “The people at Versus Arthritis were fantastic and really reassured me about the different struggles I was facing,” she says.
“Having opportunities like the book club has really made the whole diagnosis and disability process so much easier. It’s turned something that can be very isolating into a community.”
We’re here to help
If you’re under the age of 25 and have arthritis, you can reach out to our Young People and Families Service.
We offer helpful information and support on how to manage your condition. Plus, we put on a range of events across the UK where you can meet other young people with arthritis.
You could also:
- Call our free helpline on 0800 5200 520
- Join our online community
- Stay in touch and follow us on X (Twitter), Facebook and Instagram.