A love story, not a disability story — the main character just happens to have arthritis

Jenny Ireland mines her experience of dealing with serious health issues in her first book for young adults, which focuses on ability rather than disability

Fri, 14 Apr, 2023 - 02:00

Andrea Smith

Having had health issues with arthritis and anxiety, Penguin debut author, Jenny Ireland, is passionate about the need for more disability representation, especially in literature aimed at children and young adults (YA).

She hopes that her YA book, The First Move, demonstrates that characters with disabilities and chronic illnesses can live in a fully rounded way. The idea that her own children will grow up reading books that are a true reflection of the world they inhabit is important to Jenny.

“I just wanted to write a love story, not a disability story,” she says. “Everybody has their own problems and Juliet [the protagonist] just happens to have arthritis.”

Now 36, Jenny was born in Belfast to Paul Flynn, a GP, and Rosie Flynn, a piano teacher, and she has an older brother Adam. She studied law and French at the University of Liverpool. “I had no idea what I wanted to do,” she laughs. “I got to live in Paris for my Erasmus year, which was brilliant.”

Having completed her degree, Jenny worked as a paralegal in the area of family law. While she enjoyed the work, she left as she wasn’t suited to it. “I’m a very anxious person,” she explains. “Being in front of people and public speaking wasn’t for me.”

Jenny has lived with generalised anxiety disorder for most of her adult life. Exercise helps as does talking to her husband or parents. Although she didn't realise it, her anxiety was also present throughout her teenage years. “I’d be retching before I went into tutorials at university in case someone asked me a question and I didn't know the answer,” she explains.

It was while studying at the Sorbonne in Paris that Jenny began to experience a stiff neck. Then, when she was working at the solicitor’s office, her knees began to swell and she experienced muscle pain. The diagnosis of psoriatic arthritis was made when she was 23.

The writer is married to Chris, whom she met at school and began dating at 19. They have two children, Lyla (9) and Rory (8), and Jenny’s arthritis went away during pregnancy. While research is still ongoing, one theory is that the mother's immune system changes to prevent rejection of the foetus, which also decreases pain and inflammation.

“It was amazing, but then I had huge flares six weeks after the births,” Jenny explains. “Chris did a lot of the night feeding with Lyla because getting up was too painful for me, and my parents helped out a lot.”

Jenny Ireland, author. Photograph Moya Nolan

Jenny injects herself with biologic medication, which blocks specific parts of the immune system, such as the proteins that promote inflammation. While the treatment mostly controls the condition, she still experiences painful flares.

Back in 2019, she suffered a serious health scare when she experienced a sore throat, headaches, vomiting, and dizziness. She was admitted to hospital, where she underwent two brain surgeries for encephalitis — inflammation of the brain. One theory is that a regular virus became a life-threatening one due to the medication suppressing her immune system.

“I was in hospital for five weeks, but I was 'half out of it',” she says. “When I got home, I couldn't really walk because of muscle loss and, within a month, I was about two stone heavier, because of the industrial steroids I was on. I found that complete change in appearance very difficult, and not being able to walk was awful because my kids wanted me to do stuff. It was about a year and a half before I felt like myself again, although my short-term memory is still quite rubbish and I get hallucination-type dreams, where I’ll see spiders or mice everywhere.”

Jenny began writing in the sleep-deprived days after Rory was born, and got more serious about it in 2017 when she did a writing course with the literary agency, Curtis Brown.

“My incredible mum and dad paid for it,” she says. “That was the start of everything really because the tutor said I could write and to keep going. I kept trying, although I got a lot of nos at first.” The turning point was when she applied for the Penguin Random House WriteNow programme in 2020. Jenny was one of 14 out of 3,700 entrants selected for mentorship by a Penguin editor. “It changed everything for me,” she says.

Jenny has always been a fan of YA books and loves the emotionally intense nature of the genre. Her debut novel, The First Move, is about the beautiful and cool Juliet, who has severe arthritis and uses crutches. Juliet exists at the edges of her friends' social lives, skipping parties to play online chess with strangers under a pseudonym as she believes girls like her don't get to have their own love stories.

A new kid called Ronan arrives locally who is good-looking and smart and acts like he's cooler than everyone else. Juliet doesn't realise that she has already encountered him online as he also plays chess. It's his escape as he is plagued by guilt over what happened to his brother Ciaran.

The beautiful story is important because every year about one in 10,000 children in Ireland is diagnosed with juvenile idiopathic arthritis. According to Arthritis Ireland, there are an estimated 1,200 to 1,400 under-16s with the condition.

“I was thinking about how I would have felt in that position as I was so incredibly self-conscious at school and mortified by everything,” says Jenny. “I think young people dealing with anything extra in school are heroes because it's already hard enough being a teenager.”