Did you know that around 2,100 New Zealanders are estimated to be living with lupus, and nearly nine out of ten are women?
Lupus is a long-term autoimmune condition where the immune system mistakenly attacks healthy tissues. It can cause inflammation in the joints, leading to pain, swelling and stiffness, but it can also affect the skin, kidneys and other parts of the body.
When your health changes, what you can do
Arthritis NZ funded research has found that lupus disproportionately affects Pacific people in Aotearoa New Zealand, with higher rates also found among Māori and Asian communities. But behind these statistics are real people and the challenges they face in everyday life.
A recent Pacific Media Network item highlighted this research that explored the experiences of Pacific women living with lupus. It showed how the condition affects much more than their physical health.
The research found that for some women, fatigue, pain and unpredictable symptoms meant stepping back from family responsibilities, church and community activities. These weren't simply things they enjoyed doing, but were important parts of their identity, culture and sense of belonging. Having to step back left them feeling isolated and unable to contribute in the ways they once had.
While these findings reflect the particular experiences of Pacific women, they also raise an important question for anyone living with arthritis or another long-term condition:
When your health changes what you can do, how do you hold on to the things that make you feel like you?
It might be spending time with whānau, working, volunteering, playing sport or simply being there for others. Finding different ways to stay involved, asking for support and recognising that your contribution still matters can make a real difference.
Three things that can help you live well with lupus
1. Know your lupus – what's normal for you?
Lupus affects everyone differently, and symptoms can change over time. You might notice more fatigue than usual, painful or swollen joints, or changes to your skin.
Keeping a symptom diary can help you recognise patterns and give you something useful to discuss with your healthcare team. It's also worth asking what signs of a flare to look out for and when to seek medical advice.
2. Protect yourself, even when you're feeling well
Did you know lupus can affect your kidneys without obvious symptoms? Regular blood and urine tests are important, even when you're feeling well.
Taking prescribed medication and protecting yourself from UV exposure are important ways to manage lupus and reduce the risk of flares. At your next appointment, ask how your lupus is being monitored and what you can do to protect your long-term health.
3. Make room for the things that matter
Fatigue can be one of the hardest parts of living with lupus, and it's not always relieved by a good night's sleep.
Rather than pushing through on a good day, try spreading activities out and taking breaks before you're exhausted. Think about what's important to you. Perhaps you can't manage a whole family gathering, but you could join for an hour, or ask whānau to help with preparations.
Small changes can help you stay connected and keep doing the things you enjoy.
Connect with others who understand
Living with lupus can sometimes feel isolating, particularly when others can't see what you're dealing with.
Arthritis NZ has a dedicated Lupus Online NZ Facebook group where you can connect with others, share experiences and find support.
Want to learn more? Explore our Lupus web page
Coming in the November edition of Joint Support magazine
Look out for two stories about lupus, including two young women raising awareness through their monthly podcast and how a generous bequest has helped support lupus research in Aotearoa.
Arthritis Assist is here to help: Our Health Coaches can help you explore practical ways to manage everyday challenges and prepare for health appointments.
Contact us or call us on 0800 663 463
