For Rocyie Wong, who is a known psoriasis advocate that has lived with this chronic skin condition ever since she was 14, rejection was a familiar, if unwelcome, friend. “Most people don’t know how painful psoriasis is,” she says. “So it never crosses their mind at how physically challenging it is to have skin that flakes and itches all the time. I actually had to stop going to school at certain points to just recover, so while others took three years to complete their courses, I took four. I was 20 at the time.”

An ambitious soul like any other youth, Wong had landed a corporate job after graduation and dreamt of joining her peers in making their societal debut. One day, however, as she sat in her office chair, her skin burned. “While I’ve managed to make a space for myself via my online platforms like PsoGood and Safe Space, I can’t imagine the stress of those who still have to go out every day despite having psoriasis. It isn’t just about the physical discomfort; it’s anxiety every time you go out and the exhaustion that builds from bearing the burning sensation every time you so much as move. Some days, even though I’m way more comfortable in my own skin today, I still get anxious and have to go out wearing a cap.

“People can be unknowingly hurtful. They’d ask things like, ‘what is wrong with you’, or ‘are you vegan or something?’ Which is just uncalled for.”

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By the time Wong turned 25, it was 2018 and her 11th year of living with psoriasis—though she describes it as one of the lowest points in her life, it was a major turning point as well.

“There was this huge brand that wanted to look for a ‘different’ kind of beauty,” she shares. “It took a lot of convincing from friends and family, but I eventually decided to take a chance on myself. Then, when I finally came to the shoot, the people there asked if they could see my skin, because I was still covered up with long sleeves then. And when I finally worked up the courage to show myself, one of them went, ‘wah, that is actually quite serious’. I didn’t get called back after.”

Frustrated and hurt, Wong came home, and in a fit of rage, took out her phone, and promptly posted her first ever photo on social media that revealed what her skin looked like. “I was terrified,” she says, “but I was also so angry. If the world wasn’t willing to give a more compassionate and empathetic space for people who looked different, then I would.”

From thereon, she got the ball rolling, launching a body positivity campaign called Project Naked, a series of stories that not only detailed Wong’s own account with psoriasis but also never-before-seen photographs of her skin. Within less than a month, the response Wong received was overwhelmingly positive, which hardened her resolve and got her to create Safe Space, an online support group for patients with psoriasis that began in Malaysia, but eventually branched out to international waters.

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Wong actively engages with her fellow psoriasis patients online, and hopes that her social media platforms will be able to not only better inform people about the autoimmune disease, but provide better tools for people with the condition to care for themselves holistically. “I’ve had more than a decade’s worth of experience meeting doctors of all kinds,” says the activist. “I tried all sorts of treatments and have been met with varying degrees of side effects afterwards. We have so many great medical innovations out there, but we frankly aren’t equipped with the knowledge to better guide people with chronic conditions—nor do we prioritise them at all.”

Sonya Danita Charles, a model who’s had vitiligo since the age of eight, also says as much. “The other day, while I was walking from my condo, a stranger had come up to me to ask what happened to my skin,” she recalls. “And when I told him I’ve had this condition since I was eight, he just stared at me and said, ‘I’ll get you in contact with someone who is familiar with Indian medication—you should give it a try.’”

Dumbfounded at the man’s reaction, it struck Charles that the public held an odd reluctance in accepting how she, and others with the same circumstances, have chosen to embrace it, and by extension, themselves. “It’s like they think we’re accepting defeat, or that we don’t want to make an effort for ourselves,” she says, bemused. “It’s as though not rejecting ourselves is somehow unfathomable. Instead of saying, ‘good on you for embracing yourself’, they ask you, ‘why’? It’s almost as if they expect us to be ashamed of how we look.”

Charles, was 21 when she returned to Malaysia after finishing her degree in fashion marketing in the US, and dreaded the locals’ scrutiny towards her vitiligo. “Growing up in Southeast Asia, I feel like they’re more critical here about your looks compared to when I was in the States,” she says. “And for me, being Indian while having two skin tones, the reactions were… very interesting, to put it mildly. I even had a woman telling me that I should try taking bleaching pills, just to be a singular colour.”

It was then she bumped into a photographer in Kuala Lumpur, who, in just their first meeting, asked if she would like to do a photoshoot together. Charles hesitated at first, but took the leap anyway. Needless to say, after witnessing the first few photos of herself, she felt freed.

“To most, posting those images may not seem like a big thing, but for me, it felt like the point of no return. So when all these kind responses started coming in, I felt like I’ve finally came into my own person.”

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Charles started a local organisation for people with vitiligo called the Vitiligo Association Malaysia, determined to build a proper platform for a severely under-represented community in Malaysia. “A lot of people don’t know what vitiligo is, and it’s not talked about enough,” she says. “We need to educate people to be kinder; to not look at us as though we are aliens, as though we are pitiful. We do not need your sympathy, and we do not need you to treat us as though we are contagious. We want to be treated with dignity and respect. That’s why I want to build this support group, a safer environment where people from all walks of life can come and not worry about being judged.”

Model and Odissi dancer Vanizha Vasanthanathan had been at the brunt of schoolyard teasing; being the only Indian student in a Chinese vernacular school, she’d always been the odd one out, and was called names like, ‘hei ren ya gao’, referring to the Darlene toothpaste logo, which depicted a black man with white teeth. “It left a stain in my mind,” she says softly. “I didn’t feel good about myself, and looking back, even when I started modelling, I could clearly see how uncomfortable I was with the way I held myself. I always hunched my back, it was as though I wanted to hide.

“And before I got to the international stage, I never saw anyone like myself, who was a brown woman in the deeper spectrum. It was always fairer women, no matter the race, that were featured in the media. I didn’t feel beautiful back then even when the people around me lauded me for my looks. So, when my senior, who was the fashion designer that offered me my first modelling gig, I couldn’t believe it at first, I was like, ‘why me? I’m not even beautiful.’”

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Vasanthanathan is frustrated at Malaysia’s lack of inclusivity. “It’s no secret that we’re under-representing brown women still despite the changes made in the local fashion and beauty industry,” she says. “You’d be surprised at how many brands are still not onboard with using darker toned models like myself in their commercials. Worse still is when brands continue to practise ‘tokenism’— wherein you think you’re being inclusive just because you have the one dark-skinned model or that you have the one darker shade in your make-up line.

“However, when I first participated the 2018 China fashion week, it felt so surreal to me,” Vasanthanathan recalls. “The audience over there, including the designers, had expressed how much they loved my skin tone. I thought they wouldn’t sign me up at first, but they did—I even got to walk the Jakarta and Lakme Fashion Weeks too! Modelling had definitely changed my life, and even made me love myself more.”

She adds: “I get messages online from parents who said that their child hated how dark they looked, but after seeing me out there—on billboards, on the cover of magazines and on runways—they see themselves in a more kinder, positive light. And that to me is just so humbling. It’s what drives me these days, and why I haven’t given up on modelling even when the going gets tough. Because I want to represent people like me, the Malaysian-Indian community, and say, ‘Hey, I’m here. Just like you will be one day.’ We have so much room for improvement when it comes to representation and inclusion.”

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