Meet Abbey, a 21-year-old full-time university student who was diagnosed with Juvenile Idiopathic Arthritis (JIA) just before her second birthday. Her childhood involved frequent hospital visits, joint injections, medication infusions, doctor’s appointments, and surgeries. Missing school was common, and Abbey hated feeling left out.

“Having flare-ups in early learning and primary school was never fun. I loved school and sports, so missing school for appointments or sitting out of sports was tough. Juggling schoolwork, a social life, and flare-ups were challenging, especially during ATAR in Years 11 and 12. We had lots of three-hour exams, and I really struggled to write long essays and sit for extended periods. Dealing with pain constantly can also affect your mood, making you feel sad, annoyed, mad, or even grumpy. It’s been an emotional rollercoaster,” Abbey reflects.

Navigating the Highs and Lows

One of the most uplifting aspects of her experience was the incredible people she met along the way. From compassionate doctors and nurses to her supportive physio, Abbey feels fortunate to have been cared for by such a dedicated team. She also formed meaningful friendships with others who had arthritis, finding comfort in the shared understanding and connection. Attending AOWA’s Camp Freedom was a highlight, as was nearly five years of playing netball when her medications were effective.

However, Abbey’s journey was not without its challenges. Over the years, she was prescribed a wide range of medications, some of which came with difficult side effects.

There were times when the medications made her feel quite ill, while others lost their effectiveness, leaving her in pain and discomfort. She experienced more severe side effects, such as hair loss and jaundice, which added to the emotional and physical toll. One of her most challenging times was battling macrophage activation syndrome, a rare and serious JIA complication that left her very ill and required a long, exhausting recovery.

“What do you feel was key to helping you when things were tough?”

• Medication: “Taking all my medications at the right times helped keep me going and stay healthy.”
• Balance: “It’s important to keep a good balance between moving my body and my joints and knowing when to rest with ice packs, heat packs, pain relief, and a good book or movie.”
• Support Network: “Having a strong support network of friends, family, doctors, and even teachers made a huge difference. Knowing someone had my back, whether during good times or bad, was comforting. My best friend in primary school always slowed things down to my pace in sports or at lunchtime, so I didn’t feel alone or left behind. In Year 11 and 12, a teacher would include mini aerobics stretch session halfway through class because she knew I needed to stretch. She made it fun and included everyone so I wouldn’t feel embarrassed.”
• Understanding the Condition: “It really helped to understand what was happening inside my body. When I was 10, Nic (my physio) asked me to make a poster about arthritis for homework. That poster taught me a lot, and it was the first time someone really explained and helped me understand what was going on. Before that, most conversations were directed at my parents.”

“What advice would you give to kids or teens with JIA who are finding it tricky?”

• Ask for Help: “Don’t be afraid to ask for help. You don’t have to go through this journey alone. There are people out there willing to help in any way they can, whether it’s asking your doctor for pain relief, requesting extra time on a test, or asking your sports coach for a rest break.”
• Stay Active But Listen to Your Body: “It’s important to keep moving, but also to know your limits. Find low-impact activities you enjoy, like swimming, Pilates, or yoga, especially during flare-ups. Sometimes it was tricky to figure out what exercise was good for my body. Nicole and the physio team from Western Kids Health were a huge part of helping me figure this out”
• Focus on What You Can Do: “It’s easy to get caught up in what you can’t do, but setting small, achievable goals can help you feel more in control. Celebrate your accomplishments, even if it’s just getting out of bed in the morning!”
• Go to Camp Freedom: “My physio, Nicole, spent years convincing me to go, and when I finally went at 15, it was the best experience. I met people who understood what I was going through. Once I finish Uni, I want to go back as a volunteer.”
• Be Kind to Yourself: “JIA can be really hard, and it’s okay to have days when you feel overwhelmed. Give yourself permission to take it one day at a time. Find what makes your body happy, whether it’s a hot bath, a movie night, or a swim in the ocean, and make time for it. You’ve got this.”

Abbey is currently in her fourth year at Edith Cowan University, where she is studying a double science degree to become a nurse and a midwife. She’s set to graduate in December and is thrilled about the future. Next year, she will start her dream job as a nurse and midwife at King Edward Memorial Hospital. Reflecting on her journey, Abbey never imagined she would work in healthcare, especially after spending so much time in hospitals as a child. However, she believes her JIA diagnosis gave her a unique insight into the patient experience, which she’s eager to bring to her nursing role. Looking ahead, Abbey is excited to start her new job and has big plans to travel the world!

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About Western Kids Health

The Western Kids Health Complex Care Team is recognised for enhancing the lives of children and youth with complex and invisible conditions, such as JIA, chronic pain and fatigue, Ehlers Danlos syndrome and hypermobility spectrum disorders, through a multi-disciplinary, evidence-based team approach. Comprising physiotherapists, psychologists, occupational therapists, and dietitians, the team collaborates with esteemed professionals and community providers to deliver comprehensive care. Western Kids Health leads AOWA’s Hydrotherapy for Kids and Teens and Healthy Bones & Joints classes each term. The team received international recognition as an Ehlers Danlos Centre of Excellence in 2023.

Website: westernkidshealth.com
Phone: (08) 6112 2977

 

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