Navigating life with resilience and self-compassion through chronic illness
Lupus is one of those medical conditions that is not commonly discussed. With more than 10,000 people diagnosed with Lupus in the past 30 years, according to the Malaysian SLE Association, we spoke to Sofia to find out more about life with Lupus.
Lupus is an autoimmune disease where the body attacks its own tissues, leading to inflammation, pain, and damage to organs. The thing is, lupus affects 90% of women, typically during their reproductive years. And while the symptoms are unpredictable—sometimes mild, sometimes severe—what stays constant is the fact that women with lupus face unique challenges that extend into their physical health, mental well-being, and sometimes, even their relationships.
In Sofia’s case, it wasn’t just about managing her symptoms; it was about finding understanding in a world that often overlooks what it means living with a condition like this.
Diagnosis: A Long Wait
Lupus is notoriously hard to diagnose because its symptoms mimic so many other conditions. Sofia recalls how long it took before doctors finally pinpointed the problem.
“It actually took quite a long time to get diagnosed after my symptoms started. It was a tough process since my symptoms were often mistaken for other conditions,” she shares. Misdiagnosis and delays are common with lupus, highlighting the importance of persistence when you know something isn’t right.
Living with Lupus
If there’s one thing I learned from Sofia, it’s that living with lupus isn’t just about fighting physical symptoms—it’s about learning how to adapt and listen to your body; a balancing act. Sofia explains, “I learn how to avoid things that trigger my symptoms, for example stress, certain foods, and definitely too much sun. Sunblock is non-negotiable for me!”
And it’s not just physical; lupus takes a toll on your social life too. “I also listen closely to my body and rest when I need to, even if that means skipping plans. Some friends don’t always understand why I can’t be active,” she admits. This is a reality many living with lupus face—balancing the desire to be social with the need to rest, knowing that overexerting yourself today can lead to pain tomorrow. Sofia’s advice? “It’s all about finding balance and pacing myself.”
Support System
For anyone with a chronic illness, a strong support system can make all the difference. For Sofia, it’s her partner and family who truly help her stay strong through the ups and downs. “Having a supportive partner and family who truly understand what I’m going through is such a blessing,” she says. When you’re battling something as unpredictable as lupus, it’s easy to feel isolated, especially since others can’t always see what you’re going through. That’s why having people who get it—who can support you emotionally and physically—is vital.
Awareness: More Than Just a Diagnosis
Lupus is often misinterpreted as just another autoimmune condition—one that’s not ‘serious enough’ to warrant attention. But for Sofia, spreading awareness is essential. “Lupus is often misunderstood, and more awareness can lead to better understanding and support for people living with it,” she says, emphasizing how crucial it is for society to grasp what lupus entails.
The reality is stark: lupus affects major organs like the skin, kidneys, heart, and lungs, with flare-ups striking unpredictably. For Sofia, greater awareness isn’t just about recognition; it’s about ensuring no one has to suffer in silence or without adequate support.
Advice for Newly Diagnosed
Sofia’s advice for anyone newly diagnosed with lupus is simple yet powerful: practice self-compassion. “Be kind to yourself and take things one step at a time. Rest is not a weakness… it’s part of staying strong,” she shares.
She also highlights the importance of setting boundaries, which many of us struggle with. “Surround yourself with people who lift you up, and never be afraid to set boundaries to protect your health.” Her approach revolves around listening to her body, respecting its limits, and prioritising health over external pressures.
And lastly, she adds, “And never forget your sunblock! Think of it as your invisible armor.” A simple but effective reminder to keep protecting yourself, even when the battle feels invisible to others.
