Embarrassed. Uncomfortable. Exhausted. Alienated. Damaged. Annoyed. Ugly.
These were just a few of the words that came to mind when I recently asked people living with vitiligo how it felt to be stared at. After living with this skin condition for more than twenty years myself, I can relate to every single one.
When you live with a highly visible condition like vitiligo, stares are part of the norm. It’s hard to leave the house without catching at least one person staring at your skin. Most of the time, people are genuinely curious – and that’s expected. Since only 1% of the world has vitiligo, it’s still rare to see and many people still don’t know what it is. And while it’s good to learn about new things, that doesn’t excuse the staring.
Here’s why. Staring might be a curiosity – people see something they’re intrigued by and want to understand it. But for the person receiving that stare, it can be far more emotionally traumatizing and damaging. In other words, curiosity shouldn’t be at the cost of causing another person emotional or social trauma.
To put it in perspective, here’s what it’s like to be stared at:
You feel embarrassed
Everyone has something they don’t like about their body – acne, weight, dry skin, differently-shaped belly buttons. If you are reading this now, I know you have yours. And for many with vitiligo, the white spots are the thing they dislike most about their body. Now imagine if every time you left the house, you caught people staring at that one thing. In fact, they might not just stare – they might come ask you about it. Your biggest vulnerability becomes a topic of staring, pointing and even conversation. How would that make you feel? Embarrassed? Yes, you might be.
You’re reminded that you’re different
Today as a culture we’re much more open to celebrating differences – but by and large, people still want to fit in. The desire to be a part of a group is a natural human instinct. Living with vitiligo, I would often forget that I had spots – until I caught someone staring. Staring is a raw reminder that you are “other than;” that you don’t fit in; that to many, you look weird. The simple act of a stare can be enough to shatter the head space you were in – and make you feel immediately uncomfortable.
You start spiraling emotionally
A stare is just that – someone looking at you. Yet the emotional reaction it can trigger in the person being stared at can be truly traumatizing and damaging. Going to the beach or spending any time in public with spots was always difficult for me. The casual glances and stares would send my brain into overdrive and make me feel like a spotlight was following me. My day out with friends or family would quickly be squashed as my mood turned sour and the stream of negative self-talk began. One stare could result in an entire day of low self-esteem.
You feel unseen
I know, it’s ironic to feel unseen while you’re being stared at. Yet for many with vitiligo, you can feel like people aren’t seeing the real you – just your condition. Vitiligo can create a drastic change in your appearance – but not in the way that you want. You want to be noticed for your smile, your kind demeanor or maybe another physical trait. Yet it can seem like all people see is your skin – the one thing that truly doesn’t feel like you. Your chance at the first impression you wanted has been robbed – because your vitiligo speaks for you and sometimes, louder than you.
Have you ever been stared at? How did it make you feel?
Photo by Shawna Simmons
Erika Page is a writer and blogger with universal vitiligo. Her first spots appeared on her spine when she was seven years old and today vitiligo covers her entire body. Based just south of Washington, D.C., Erika founded Living Dappled to create a community of inspiration and hope for girls and women living with vitiligo.