Author Jenny Ireland: Living with psoriatic arthritis and why representation matters in books

16 October 2023
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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. But the truth is, it can affect anyone, at any age.  

We rarely get to see thoughtful representations of arthritis in books, films and TV. So that’s why, when Jenny Ireland, 36, got her debut book deal, she knew she wanted to tap into her experience living with psoriatic arthritis. 

Here the author shares her diagnosis journey, how writing can be an outlet, and why representation really matters.

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Feeling heard: The importance of arthritis representation in books 

“You just don’t see chronic illnesses in literature or TV that much,” explains Jenny. “So, I wanted to write a love story where the protagonist just happened to have arthritis.” 

With that goal in mind, Jenny wrote The First Move, a young adult novel about 17-year-old Juliet, who lives with juvenile idiopathic arthritis. 

“Juliet is very cynical about love and thinks ‘girls like me don’t get the big love stories’,” explains Jenny. “She plays chess online a lot and keeps to herself. But, like anybody, she wants that big romance.” 

“In the story, some characters say, ‘Oh you’re too young to have arthritis’, so a lot of the challenges she’s had, I’ve faced too. I think it’s important to tell this story because I’ve had a lot of people say to me since it was published ‘I had no idea arthritis was like that’.” 

Psoriatic arthritis symptoms 

When she was 23, Jenny was diagnosed with psoriatic arthritis and says that “since, then it’s been up and down.”  

“Like a lot of people, I’ve had to try to find the right medication and that’s where I am at the minute,” she says. Jenny tends to have pain and swelling around her knees and elbows. “When my arthritis flares, my mobility is really bad, which can be hard when you have kids,” she says. 

Overall, though, Jenny says the biggest hurdle she faces is fatigue. “You can get used to the pain to a certain extent, but it’s the tiredness that I find really difficult. I’m falling asleep in front of the TV at 6 o’clock.” 

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Managing pain and fatigue  

Over the years, Jenny has learned to cope with her condition through a mixture of medication and self-management. For instance, exercise offers some relief. 

“When I’m sore, I don’t want to exercise. Which I’m sure is true for many people. But then you get sorer, and it becomes a vicious cycle,” she says. “But I’ve found that even though it hurts when I’m doing it, exercise definitely helps me.” 

“I’m also always attached to a hot water bottle. I walk around with them all day. I use a lot of ice and take painkillers too.” 

Writing as an outlet  

Putting pen to paper can be a great way to deal with complicated thoughts and feelings. Plus, it’s a great way to keep track of your symptoms and experiences if you live with arthritis.  

For Jenny, writing has been an outlet and allowed her to express things that, in real life, she would find difficult to say aloud.  

I found it cathartic to be in this other world. It gave me a bit of headspace.

Jenny Ireland, who lives with psoriatic arthritis

“Through the book, I was able to get into Juliet’s head and talk about body image, how she didn’t want to be a burden - thoughts I wouldn’t say to someone in real life, but which were a lot easier to say through Juliet.” 

“I’ll often say ‘I’m fine’ as a stock response. I still find it difficult to ask for help. And that’s something I put into the book too. A lot of the time, Juliet says ‘I’m fine’ when she’s not fine at all.” 

For other people with arthritis, Jenny wholeheartedly recommends giving writing a go. “It lets you get out of your head and lose yourself in another world,” she says. “Or you can write about things that are true in your life that you might find difficult to express aloud. It helps you deal with things in a different way.”  

Challenges and strengths as a writer with arthritis 

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Some people who have arthritis in their hands might find it challenging to type for long periods of time or grip a pen.  

But, for Jenny, the main challenge she faces when writing is fatigue. That's why she paces herself and takes care to manage her energy levels.  

“My process is to get up and work at 5:00am. I work far better in the morning and can get two hours of uninterrupted writing done. I fall asleep around 8:30pm these days, so mornings suit me best.” 

Jenny also says she’s grateful for the strong support network around her. “My husband works from home a lot of the time, so he can do the school run if necessary. And even if I don’t say anything, my parents know by looking at me, how bad it is. So, they’ll help look after the kids. I’m lucky in that way, I really am.” 

Living with arthritis has brought its own challenges, but Jenny says it’s also given her a unique outlook on life too. “I think having arthritis has made me more empathetic as a person,” she says. “I can look outside of myself and think about what other people are going through.  

“That was a big theme in the book. It’s not just about Juliet and her problems. Everybody else is also going through something behind the scenes. Yes, her challenges are more visible and physical. But lots of the characters deal with mental health issues, family issues, among other things. It may sound strange, but I find that realisation quite comforting, that everyone has their own stuff to deal with.” 

Creating a community through writing 

Getting an arthritis diagnosis can sometimes feel isolating, confusing, or even a bit overwhelming. So, it can be comforting to know that there’s someone who understands how you are feeling.  

Seeing your experience in a book can make you feel seen, represented and that you belong – and Jenny has seen this in response to her book.  

“A teenager... read the book and messaged me to say ‘I’ve got a condition that’s like Juliet’s and I’ve never had a character that I’ve related to so much. It’s given me hope that I’m going to find my own love story.’ It was the nicest message to read.” 

“Everyone’s journey is different, and some people might not see themselves at all in the book. Even for those not living with chronic illnesses, I think being able to learn about arthritis is important.” 

The Versus Arthritis book club 

There’s nothing like a great page-turner to bring people together.  

At a recent Versus Arthritis residential, a group of young people living with arthritis bonded over their love of reading. So, together, we decided to form the Versus Arthritis Book Club for young people (aged 14+) living with arthritis.  

Every other month, we dig into the latest page-turners, host talks with authors like Jenny, and give you the chance to connect with other young people living with arthritis. 

Since it started, the book club has grown and grown –and nowadays, it has members from all over the UK.  

We have opened a waiting list for those who want to join, and if there’s enough interest hope to run more clubs for different age groups in the future. 

You can register your interest here or email e.tuckey@versusarthritis.org for more information. 

Get support  

If you or a family member under the age of 25 has arthritis, don’t forget we run a Young People and Families service that offers information and support and puts on a range of events across the country.  

Plus, if you need advice or support, you can always: