I am not fine but that’s okay.
I’d like to think I’m a resilient person. On the outside most people see a healthy, sporty and happy 26-year-old Landscape Architect and netball tragic. Yet, hidden beneath that facade, I have a painful secret.
At 23, after completing my masters and moving halfway across the country, my body was in crisis. My partner at the time was dressing me each morning. I was waking up at 5am just to give me enough time to make it to work by 8.30am, when work was only 2km away from home. I couldn’t explain what was happening to my body and I was afraid of taking time off my first professional job. Add to this I’d just moved 2000km away from my family to peruse my dream career. My world as I knew it was falling apart and that world would be gone forever.
In August 2017, I was diagnosed with Rheumatoid Arthritis. An autoimmune disease in which my immune system has kindly decided that my joints are the enemy. Suddenly my life revolved around doctors, specialists, blood tests and an unshakable case of feeling like I had no control over my life and body.
This disease is often called an invisible illness and the inclusion of the word “arthritis” leads people to compare me to their grandparents. A little joint soreness that any off-the-shelf cream can soothe. I look fine on the surface. I work, I play sport and I get by like all other 20 somethings. Except everything hurts and it’s not a little bit.
This invisible illness heavily impacts my day to day life, whether you see it or not. It’s definitely not just a little joint soreness. It takes over everything. Fatigue, brain fog, skin irritation, teeth, organs, staying out of the sun and hair loss; these are the things that really get to me. Don’t get me wrong, the joint pain hurts but when you’re 26 and losing your hair on top of that, it’s a mental battle.
Unsolicited advice is also part of the journey. If you’re brave enough to be open about your disease like I am, everyone has their quick fix. It comes from a good place but when it’s constant, you don’t want to be the sick person anymore and there’s a good chance that you’ve already researched it. That little bit of advice usually makes them feel better because what you have can’t be fixed. I find this often with people who don’t really want to engage with what my new needs are and just want me to get on with everything I used to do without issue. Chronic disease has an uncanny way of weeding out who you really want to be in your life but it’s a hard pill to swallow.
One of my toughest challenges is managing the side effects of immunosuppressive medication. For different people this means different things, for me it means taking a drug called Methotrexate weekly. Commonly this drug is linked with chemotherapy, but people with Rheumatoid Arthritis take a much, much smaller dose. It still makes me nauseous, tired, sick and my hair has thinned significantly over the last few years. What people don’t realise is that even though I take it, I’m still in pain. This medication slows down the deterioration of my joints, which allows me to function. Add to this it’s not a “one size fits all” approach and every person with my disease goes through a trail and error process to manage their life.
The hardest thing for me is being cautious on a suppressed immune system. A cold for someone else might be a lot nastier if I were to catch it. Which means constantly being on the lookout for people who are sick, asking people in my workplace to stay home from work if they’re sniffly and adapting my lifestyle 7 days a week. I ask myself each day, “If I go out today, could I get sick?”
One positive side to COVID-19 has meant that a lot more people can empathise with this feeling and I hope that once everything picks up, people remember this and change for the better. I know the chronic illness community would be forever grateful.
A tough task of having this illness at a young age is the guilt that comes along with it. I could be sitting on a train and I’ll feel the guilt of not standing up for someone older than me, despite feeling like I could pass out at any moment. To help my pain and inflammation I stopped drinking alcohol over 12 months ago and that has a profound impact on your social life in Australia. I have come to terms with it but there’s always a strange interaction when you tell someone for the first time. They often ask throughout the night out of guilt that you think you’re missing out. When you know it’s for something far better, then you don’t really feel like you’re missing out on anything at all.
Growing up in the digital age also has many advantages. Simple tools like online shopping, delivery and pick up services are invaluable to those of us who can’t carry a basket, push a trolley or stand in a long line. I’d need someone to help me if it weren’t for those tools. Also, the ability to communicate and connect online means that you can speak to others that are going through similar things. It’s lead me to talk to an entire community that I would never have connected with before and has also given me the benefit of hindsight with so many people older than me who can pass on what they’d wish they did at my age.
These experiences of living with a chronic illness are tough but it also has pushed me to advocate for myself more than I would’ve before. There are plenty of people out there in the world that are willing to help and willing to make it an easier journey if you trust your instincts and keep looking for the best in people.