In our January|February edition, our series The Invisible Struggle focuses on this chronic, misunderstood condition
When you think of arthritis, where does your mind go? Does it conjure up images of older people, with aching joints; an unfortunate inevitability as we age? If so, this happens to be the most common misconception of this condition, which can affect anyone, right from the moment they are born.
In fact, there are over one million people in Ireland who live with arthritis, including 1 in every 1,200 children and young people under the age of 16, making it the single biggest cause of disability in this country.
Its name, derived from the Greek words arthro-, meaning ‘joint’ and -itis, meaning ‘inflammation’, is an umbrella term encompassing more than 100 diseases of the joints. Depending on the type of arthritis, specific symptoms vary, but usually include pain and stiffness.
Jenny Ireland, an author who lives outside Belfast was diagnosed with psoriatic arthritis, which one out of every three people with psoriasis will develop, at the age of 23. The Young Adult writer released her debut novel The First Move last year, in which the protagonist has severe arthritis and uses crutches, finding escapism in the world of online chess under a pseudonym.
Here, Jenny discusses her diagnosis, what arthritis is like to live with as an invisible illness and how she manages her symptoms.
Hi Jenny, thank you for opening up about this to us. Firstly, can you tell us more about your diagnosis of psoriatic arthritis, at the age of 23?
I was studying in Paris when I first felt symptoms; a pain in my neck and upper back. I was only 21 then, and just assumed it was muscle pain. It wasn’t until I was working as a paralegal when I was 23 that my knee started to swell and I decided to get it checked out. After a couple of consultations, I was diagnosed with psoriatic arthritis relatively quickly. I don’t remember my diagnosis being a huge shock. My dad was a doctor and I assume the possibility must have been broached with me before I was actually diagnosed.
How can you describe what it is like to live with?
Exhausting. Mentally and physically. I actually find the fatigue that comes with the pain, as hard to deal with as the pain itself. It’s particularly difficult at the minute because both my kids play football so I’m constantly on the side lines watching them. I wouldn’t miss their matches for the world, but the standing around is very hard on my joints. It’s easy to get upset about the condition. Most of the time I just get on with things and try to ignore it the best I can, but occasionally I’ll allow myself a day of wallowing in self-pity before I kick myself out of it again. It’s an unpredictable disease which makes it very difficult to manage. Some days I could be at the gym using the cross trainer, and others I’m using crutches, or at home taking painkillers, hiding under an electric blanket because my knees and elbows have swollen up like balloons.
How have you learned to manage your symptoms?
Painkillers, biologic medication, steroid injections, hot water bottles, ice, and humour. Always humour. It’s so easy to get bogged down, thinking about the way life was before the diagnosis. A bit (a lot) of black humour goes a long way. I have a wonderful support network as well, a husband and parents who can tell very quickly how bad I’m feeling without the need for me to say anything at all. Living in the North, I have access to the NHS, which has been brilliant. I have been under the same consultant for about ten years now and I couldn’t ask for a better doctor.
Your debut novel The First Move centres around a character with arthritis; that representation must have been very meaningful to you?
Honestly, I didn’t set out to write a book about a character with arthritis, but when I started writing it just made sense that the protagonist should share my diagnosis. And why not! And it was definitely therapeutic. It wasn’t until after I finished the book that I realised many of the things my protagonist said and thought, were things that I find very difficult to voice.
Is it important for you to dismantle the misconceptions around arthritis; that it is a disease that only effects elderly people, for example?
Absolutely. Not just arthritis, but chronic illness in general. Not that often do we see realistic portrayals of chronic illness in literature or on screen. I hope The First Move might give people an insight into what it’s like to live with arthritis as a young person. I knew I wanted to write a love story, not a disability book. For me it was important that my main character was just a teenager, who wanted her own love story and just happened to have arthritis. There are so many kids and teenagers with chronic illnesses who are just that, kids and teenagers with normal lives, normal wants and desires, and they absolutely deserve to have their voices shared. And if someone with arthritis or a chronic illness relates to Juliet’s story, or someone without a chronic illness reads the book and has a greater understanding of what it’s like to live with, then all the 5am writing sessions will be worth it.
In 2019, you were hospitalised with encephalitis. It’s thought that, after taking a monthly injection to ease joint pain, which suppressed the immune system, an ordinary virus turned into a life-threatening one. Did that experience alter your outlook in life?
It did absolutely. It made me realise how unbelievably fragile our lives are, that everything can change in a moment and nowadays I definitely care less about the little things. My favourite thing to do now is stand on the side lines, watching my kids play sports. Perhaps it would have been the same if I hadn’t been so ill, but I definitely feel more grateful for small pleasures than I ever did before. It also made me realise how much I love to write. Getting back to writing after a horrible recovery was more important to me than I ever could have imagined. I also don’t fear illness quite like I used to. Going through that experience made me realise first -hand that serious illness is just a part of life, and is something that will touch us all at one point or another.
For more information, with thanks to Arthritis Ireland, pick up the January|February edition of Irish Country Magazine