Learning to Live with the unexpected

When you graduate high school, you ask yourself the question: “What’s next?” That uncertainty of adulthood is scary—yet exciting. For me, though, it sometimes feels like the “What’s next?” was decided for me.

In July 2023, I decided to take a gap year and work in Queenstown, New Zealand. When I first arrived, my bright-eyed, confident self was excited—but also nervous. I was 18, in a different country, and didn’t know a single person. I had so many plans and couldn’t wait to start my new job.

But only a few weeks in, I began noticing unusual muscle soreness, fatigue, and a bit of weakness. I brushed it off as my body adjusting to the new climate and physically demanding job. But over the next six weeks, things got worse. I couldn’t get out of bed. I started falling frequently. Standing up became difficult, and stairs were suddenly my worst enemy. I called in sick more times than I could count and had lost a frightening amount of weight.

When my parents came to visit, they realized how bad things were—before I was ready to admit it myself. I think it really hit me when they beat their 18-year-old son to the top of a staircase. They insisted I see a doctor. I’m pretty sure they were met with the classic teenage eye roll and a stubborn “I’m fine.”

I eventually saw a doctor, who ordered blood tests and asked me to try a squat. I could lower down—but couldn’t get back up. I had to crawl to find something to pull myself upright. It was one of the most embarrassing moments of my life. That’s also when I found out I had lost 26kg in just six weeks. The next day, I got a call: my CK levels were around 10,000. I needed to return to Australia for urgent treatment.

Once home, I was admitted to the hospital within days. After confusing a few specialists, I was referred to a rheumatologist. Following a muscle biopsy, multiple tests, and what felt like a whirlwind of pokes and prods, I was diagnosed with Anti-SRP Immune-Mediated Necrotising Myopathy (IMNM).

My treatment began with Rituximab infusions, along with Methotrexate, Folic Acid, and Prednisone. I spent about 10 days in the hospital before being discharged. After a few infusions with no progress, my team switched me to IVIG.

Since then, I’ve been battling this illness every day. Some days are better than others. I’ve spent more time in hospital than I can count, not just for flare-ups but for other complications. I’m now on a first-name basis with many of the nurses and doctors. I even spent my 20th birthday in a hospital bed.

Treatment has been a long trial-and-error process—chemotherapy, steroids, monthly IVIG infusions—and constant adjustment. My diagnosis is rare for someone my age, as IMNM typically affects middle-aged or elderly individuals. It’s tough being one of the youngest people in Australia with this condition. I can’t always keep up with my friends, and on the outside, I don’t “look” sick. But I’m living with a chronic, invisible illness.

Although my journey is far from over, it’s taught me how strong I truly am. I still wonder about what’s next for me. But every challenge has made me more resilient. I wouldn’t be here without the unwavering support of those around me:
— my family, who reminded me of my strength when I forgot it,
— my boyfriend, who held me up (sometimes literally), and
— my friends, who brought light to even the darkest days.

I’m still learning to embrace the unknown, to find beauty in the small moments, and to remind myself that this journey doesn’t define me—it’s just one chapter of my story.

To anyone else walking a difficult path: strength isn’t the absence of struggle—it’s the courage to keep going. And even when I don’t feel like it, I believe I will find out what’s next for me.