It often starts with a question. Or a stare. Or a suggestion to “see a doctor.” For Farah, it began with small white spots on her left cheek that didn’t go away. For Space Dollah, it was the slow spread of patches across his face and body, pushing him offline for six months. Both live with vitiligo. And both have had to answer—out loud or in silence—what it means when your skin becomes the conversation.
Vitiligo is not painful. It doesn’t itch. It doesn’t threaten your physical health. But it’s visible. And in a world hyper-focused on symmetry, smoothness, and standardized beauty, visible difference creates social tension. You don’t get to choose when people notice. You just learn to expect it. At cafes. On public transport. In casual conversations that turn into impromptu medical interrogations.
“People ask if it’s a burn,” Farah said. “Some describe it as a strange disease.” At 26, she’s learned how to shrug it off. But there were months of uncertainty and self-doubt before acceptance. Confidence didn’t come from affirmations—it came from exhaustion. From realizing that no explanation was ever enough. And then comes the choice: cover it, treat it, or own it. All are valid. All require effort. None guarantee peace.
Vitiligo affects 0.5% to 2% of the global population. That’s not rare. But it rarely feels common, especially in cultures where skin color is closely linked to perceptions of health, hygiene, and worth. Dr. Irene Lee, a consultant dermatologist, says vitiligo occurs when the body’s immune system attacks the pigment-producing cells, leading to depigmented patches. While it isn’t contagious or life-threatening, the condition is emotionally charged.
“It has nothing to do with cleanliness,” Dr. Lee emphasized. “But the stigma remains.” Especially in Southeast Asia, where fairness is often idealized and differences in appearance are either scrutinized or pitied. People don’t see the clinical mechanism. They see contrast. A face that looks “uneven.” A body marked by shapes they can’t explain. And they ask.
For Syed Abdullah—better known by his content creator alias, Space Dollah—the questions eventually became too much. A frequent social media presence, he suddenly vanished. “I didn’t want to go out. I didn’t want to be seen,” he shared on a podcast. “The patches were everywhere. It wasn’t just my face.”
When your identity is tied to visibility, vitiligo feels like a betrayal. It rewrites the script. Filters don’t help. Neither do comment sections. Coming back online wasn’t a declaration of confidence. It was a quiet, necessary act of reclaiming space. “I realised I don’t need to care what others think,” he said. But he admits it took years—and the steady, silent support of friends and family.
Technically, vitiligo is treatable. There are steroid creams. There’s light therapy. There are laser treatments that promise to reintroduce pigment. But for many, the treatments are temporary, costly, or unpredictable. And the emotional toll of constantly trying to "fix" yourself often outweighs the physical benefits. Dr. Lee points out that early intervention can help. Mild cases may even respond to non-steroidal creams. But outcomes vary.
Cosmetic coverage is another option—not to hide, but to feel in control. Like makeup for acne or hairpieces for alopecia, it’s not about shame. It’s about agency. Some, like Farah, choose no treatment. Her skin began to recover without medication. The patches faded on their own. But she doesn’t claim it as a cure story. “It’s still a part of me,” she said. “I’m not trying to erase it anymore.”
No amount of sunscreen or serum can prepare you for unsolicited comments. Or pitying looks. Or the slow emotional fatigue that builds when every encounter carries a possibility of misunderstanding. Vitiligo doesn’t make you sick. But it can make you tired. Tired of being brave. Tired of educating others. Tired of feeling like you have to.
Support networks matter—not just medically, but mentally. Those who have family or community backing often fare better. But that doesn’t erase the lonely middle—the time between diagnosis and self-acceptance. Mental health professionals increasingly recognize this. Skin conditions with visible symptoms are now being linked to higher rates of anxiety and depression. Not because of the condition itself, but because of the social friction it creates.
You might have seen vitiligo in beauty campaigns. In magazine spreads. In hashtags about body positivity. But representation doesn’t always mean recognition. And it certainly doesn’t equal understanding. When vitiligo is celebrated in ads but misunderstood in daily life, the disconnect can be jarring. Visibility helps, but only when it's paired with context. Real stories. Real conversations. Not just aesthetics.
Influencers like Winnie Harlow have changed the global narrative—but that doesn’t mean the local one has caught up. In many communities, the condition still invites whispers and misinformation. Representation should not flatten complexity. It should expand it. Not every person with vitiligo wants to be a model. Not every story is a triumph. Some are mundane. Some are painful. And all are valid.
We need more than visibility. We need nuance. We need stories that show vitiligo in classrooms, in boardrooms, in dating profiles—not just as inspirational case studies, but as ordinary people navigating ordinary lives. Because if the only time someone sees a face like theirs is in a campaign, they’re still being treated as a symbol. True representation doesn’t just say, "You belong in the frame." It says, "You don’t have to earn your place here." Until we reach that point, the work isn’t done.
Acceptance isn’t a straight line. It zigzags. Some days, it looks like walking out the door without makeup. Other days, it’s cancelling plans because you’re just not up for the stares, the small talk, the silent judgment. It’s not a one-time declaration of self-love. It’s quiet endurance. Choosing not to shrink when someone flinches. Choosing to stay visible, even when your appearance keeps being misread.
For Farah, it meant allowing herself to exist beyond the lens of recovery. “Once I got used to it, I started to see it as normal.” That’s a sentence you don’t hear on skincare ads. But it’s the kind of truth that matters. For Space Dollah, acceptance meant returning—not to social media, but to himself. He didn’t need to prove he was “brave.” He just needed to stop hiding. That, too, is courage.
There’s a softness to real acceptance. It isn’t loud. It doesn’t come with hashtags or high-gloss confidence posts. It sounds like: “I’m tired of explaining. It feels like: “I’m going anyway.” It’s not always about loving how you look. Sometimes, it’s just about not letting it stop you from living. And that, in a world still obsessed with symmetry, is quietly radical.
Because vitiligo isn’t rare. But empathy for it is. Because the condition itself is simple—a loss of pigment. But the experience is layered: cultural bias, emotional fallout, societal myths. Because no one should have to explain their skin to feel human. Living with vitiligo means carrying two versions of yourself—the one before the patches, and the one that showed up after. It means remembering that both are valid. Neither needs permission.
When your skin tells a story, you don’t always get to choose the narrative. But over time, you learn how to edit it. Quietly. Fiercely. And in full color. These stories matter because they create space. Space to reframe what beauty looks like. Space to understand that health doesn’t always mean visual conformity. Space to recognize that discomfort often says more about the viewer than the viewed.
They matter because people with vitiligo are not just awareness day tokens. They are students, creators, parents, performers—living full lives beyond the pigment. By listening to their experiences, we aren’t just supporting inclusion. We are recalibrating what we accept as normal. And that shift, from staring to seeing, from judging to understanding, is where real change begins.
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