The Singaporean actress shares how lupus inspired a complete lifestyle change and revealed what’s truly important in life.
This story first appeared on MajulahMelayu.SG
“In 2023, the condition started to attack my kidneys. That’s been the hardest…sorry…talking about this always breaks me. That’s been the hardest part for me, because the kidneys are such crucial organs. My biggest fear is that I’ll need dialysis one day.
Not a lot of people know what lupus is. It’s an autoimmune disorder. We all have an immune system, right? And our immune system is designed to protect us. But for people like me, our immune system thinks our body is the enemy.
It can attack any part of your body, affecting all your good cells and organs. For me, the disease started off by attacking my red blood cells, so my blood count would get really low. To this day, I need a blood transfusion every time that happens.
I first realised something was wrong while I was shooting a drama. I was on set, and I suddenly noticed all these rashes on my body. They’re like purple dots on your skin. I was a nurse before, so I recognised the symptom. I knew it wasn’t a good sign.
I didn’t want to think too much about it, but my gums started to bleed spontaneously. I kept having to rinse my mouth because the bleeding won’t stop. And the rashes got so bad, even my make-up artist was like, ‘What’s going on?!’ She had to keep covering them up.
That’s when I knew something was definitely wrong with me. And true enough. After many hospital visits, medical tests and follow-ups with different doctors and specialists, I was officially diagnosed with lupus in late 2016.
I was in denial at first. Like, so what if I have lupus? I’ll be fine. I can still work. We have drugs to manage this. But one of the drugs they make you take is steroids, and steroids make you want to eat non-stop. I started to gain weight, and it was very obvious on TV.
I wouldn’t say it was the peak of my career, but I was getting lots of jobs at the time. And it affected me when people pointed out how much weight I had gained. They’d say stuff like I have a moon face or that I’m so chubby now. People can be so insensitive.
Someone in production – I won’t name who – even told me, ‘Can you not take your medicine first? Because we can see it on your face.’ All guess what – I actually stopped taking my medication. I’m a people pleaser by nature, and I succumbed to the pressure.
I wanted to look good for the production. I wanted to look good on TV. And I wanted people to just shut up and stop talking about how I look. But every time I stop taking steroids for work’s sake, a flare or an inflammation happens, and I’d have to be hospitalised again.
Each time I’m hospitalised, I undergo a blood transfusion because my blood count has dropped dangerously low. And each time I fall sick, I can’t just take panadol and sleep the fever away. Unlike regular people, my body doesn’t just recover in a matter of days.
It can take weeks and even months for me to recover, and I’d have to be warded and isolated from my kids. It’s not fair to my family, and I couldn’t keep repeating this cycle. It was exhausting. It reached a point where I knew I had to make a drastic lifestyle change.
And I think that’s been the hardest part for me. Because I’m so used to being active and doing whatever I want. I’m so used to eating anything I want, but now I can’t. I have to be mindful of every single aspect of my life.
I’ve also had to turn down job offers – at least for the time being – until my condition stabilises. Limiting my interactions with people has been difficult, because people keep thinking I’m rejecting them, but I’m not. I’m just prioritising my health for a change.
You know, when I was diagnosed with lupus in 2016, I was pregnant with my second child. Lupus has been a part of my kids’ lives from the get-go. Back then, they were too young to notice anything, so it didn’t really affect them when I was hospitalised a bit too often.
Now that they’re older, they have a lot of questions, especially the second one. He’s in primary one now, and he’d ask things like, ‘Mummy, why do you always go to the hospital? And why do you need to stay there so long every time?’
He’s become very curious, and I had to eventually tell him the truth. ‘Adek, mummy has lupus. There’s no cure for it, but I have to go to the hospital so that the doctors can make sure I’m okay.’ He still doesn’t fully understand the situation, but he would nod anyway.
It was hard when I was hospitalised for two months, and my kids were not allowed to visit. Doctors wanted to limit human interactions. Thankfully, my husband and parents were there to look after them, but I realised that I really need to value my time with them.
As an actor, I’ve spent so much time shooting on set, especially last year when I was in Melaka for three months. But what am I chasing at the end of the day? I love my work, but it takes such a huge chunk of time from my family, and I don’t know how much time I have left.
I had to learn the hard way that my career is really not everything. I’ve sacrificed so much…sorry, it’s hard to speak about this. I’ve sacrificed so much family time for the sake of my career, and I’m beginning to realise that maybe it’s not worth it.
Time just keeps moving forward, and once you lose it, there is no way you can get it back. So make the best out of the time that you have, especially time with your loved ones, because that is really, really irreplaceable.” – Izyan Mellyna
Interview by Arman Shah
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What a deeply emotional and heartfelt story, brought to life through such beautiful photography! And what courage from Izyan to share her story with such honesty. Thank you to you both, for this message about what truly matters in life, about taking care of ourselves and those that we love, about having the strength to make the difficult decisions, to prioritise those things that matter most to us. We hold Izyan in our thoughts, hoping that the months and years ahead and filled with good health and precious time together with her family.