“It started with a fever, then every part of my body was swelling – my hands, face, feet. It was very distressing. I would just sit in front of the mirror and cry,” Illani told FMT Lifestyle.
Doctors initially suspected allergies, then dengue. But her condition kept worsening. “The joint pain was so bad, I couldn’t move at all.”
After being transferred from hospital to hospital and undergoing multiple medical tests and procedures, doctors finally told her they suspected she had an autoimmune disease – lupus.
Illani, now the executive secretary of Persatuan SLE Malaysia (PSLEM), shared her experience of dealing with lupus with FMT Lifestyle in conjunction with World Lupus Day on May 10
Systemic Lupus Erythematosus (SLE), is a chronic autoimmune disease in which the immune system mistakenly attacks the body’s own tissues and organs.
She still vividly remembers what went through her mind when the doctor delivered the news. “I told the doctor I don’t drink, I don’t smoke, I don’t even drink coffee. I practise yoga and go hiking. How could this happen?”
By the time Illani was properly diagnosed, she had spent a total of 18 days flat on her back, disoriented and feeling vulnerable. “I felt a lot of shame. Two weeks ago, I was strong and healthy. Now, I needed a nurse to bathe me.”
A steroid injection eventually triggered the signature butterfly rash on her arm, confirming her diagnosis.
The emotional toll hit as hard as the physical one. “I was in denial. I just kept telling myself, I’ll get better again,” she said.
“I had to relearn how to walk. Just sitting or standing was painful. It took me six months to climb the stairs. A whole year before I could jog,” he said.
But just when she thought she was improving, she received another blow. It was 2022 and the lupus had progressed to lupus nephritis, a serious complication that affects the kidneys.
“I just blacked out,” Illani said. “I couldn’t believe it. I did everything right – medicines, food, physiotherapy.”
That was the moment denial gave way to anger. The disease was not just taking a toll on her, it was wearing down her family members too.
She also developed shingles, which she described as the most excruciating pain she has ever endured.
Like many lupus patients, she became highly sensitive to sunlight, as exposure could trigger severe flare-ups.
As a result, she often spent days sitting in the dark. And although her condition has improved, she remains indoors between 9am and 4pm.
“I was depressed, defeated. I started to feel suicidal. I couldn’t even cross the street to go to the grocer. I’d pass out because of the sun. You watch people go to work and you feel like it’s so unfair,” she said.
Eventually, she sought counselling, and now at 32, Illani is in remission. She’s quick to clarify that remission doesn’t mean being cured, it simply means the disease is dormant, not gone.
“It can still flare up,” she explained. “Certain things don’t go away. Fatigue is still there. If I walk a lot in a mall, I need two days to rest. When I book a hotel room, I make sure it’s north-south facing to avoid sunlight.
“You can still live a normal life, but redefine what normal means,” Illani stated.
After taking four years off to heal and adjust, Illani returned to school and is currently pursuing a Master’s in Library and Information Science, all while staying actively involved with PSLEM.
This past Sunday, over 500 participants gathered at Taman Tasik Titiwangsa in Kuala Lumpur for Walk-A-Payung 2025 – a symbolic 3-km walkathon organised annually by PSLEM since 2007.
Participants walked under umbrellas, a visual metaphor for protection against sun exposure.
The event also marked the official launch of “iLawan Lupus: A Patient Dialogue Book on SLE”, developed by AstraZeneca. The book captures real patient voices and narrative, offering hope that others won’t feel alone in their battle against lupus.