How to Be Yourself When Vitiligo Starts to Change Your Identity

Standing in front of the mirror today, I hardly recognize the girl I was as a child. The blonde hair and tan skin are gone, replaced by white strands of hair and ghostly white skin. At least, that’s what I really look like today. But the world only sees my dark brown hair dye and tanner – because that’s all I let them see.

Vitiligo, a skin disease that causes loss of pigment, has taken 100% of my skin color and now part of my hair color. I don’t expect you to understand how that feels – because the chances of this happening are less than .01 percent. In other words, it’s unimaginable. And yet, it happened to me. And after 20 years, I’m still trying to mentally grasp that change.

It can be hard to know “who you are” when your body is changing into something you don’t want it to be. Over the years, I’ve learned, often the hard way, how to focus on who I am instead of what I look like. Here’s how I found – and continue to find – the girl underneath my skin.

Celebrate often

Celebrating my life and the things that happen in it are a way to positively reflect on who I am. When I look in the mirror, I see the girl with vitiligo. But when I look inside, I see the girl who loves her husband and family, works hard for the things she’s passionate about and puts intention into the life around her. That’s who I am, and celebrating those things reminds me of that fact. For a few years, I kept a happiness journal, writing three things each day I was happy about or grateful for – my mini celebrations. Today, my husband and I have “red plate nights” where we celebrate each other’s accomplishments – big or small – with a red plate for dinner. And each time I’m feeling low, I sit down and make a list of all the things I have to celebrate in my life. These are the things that make up who I am and are worth far more than a glance in the mirror.

Avoid comparison

Comparison can be detrimental to your sense of self – and yet it so easily creeps in and alters your state of mind. I used to frequently compare myself to the girls around me, to models on Instagram and even to my imaginary self without vitiligo. Crowds were particularly tricky – I was quick to start watching the people around me, and comparison would easily follow. In every way, I fell short of what I thought a “perfect” girl looked like. And yet, no amount of comparison was going to change who I am. Today I take care to avoid mindlessly scrolling through social. I also try to focus on having an attitude of gratitude and put a lot of intention into taking care of my body to make self-love a priority – and toss comparison aside.

Live in the moment

Have you ever missed out on something because you couldn’t get out of your head? I certainly have. Living with vitiligo can make you feel like the ugliest person in the room – and the stares only reinforce your worst fear. Add this continuous stream of anxiety-ridden, self-conscious thoughts to any social activity and you wonder how you function. That was me. However, while I was consumed by anxiety, life was passing me by, moment by moment. Life’s milestones, big or small, can be interrupted by your life with vitiligo – or you can choose to live in them. It’s not always easy to quell the anxiety and focus on the moment at hand, but these are the minutes and memories you won’t get back. How do you live in the moment? That’s something I’m still working on myself, but I believe that the intention to do so is a place to start.

Do the things you love

I often find that when I’m doing the things I love, time flies the fastest – without me even noticing. These are the things that make me feel most alive – and have become things that are part of my identity. Two of my favorites? Being a blogger and a wife. Nothing passes the time like writing for Living Dappled or spending an afternoon with my husband. Pouring my time and energy into the things I love reminds me of who I am and why I matter.

Face your fears — one step at a time

As a child, I loved to swim. And yet as vitiligo slowly took over my body, I found myself avoiding the water at all costs. I didn’t need to feel any more insecure than I already did – and nothing made me feel worse about my body than a bathing suit. As my vitiligo took over my body, I started to wear tanner – and eventually made my way back to the beach. At first, I would panic about my tanner being less than perfect. But over the years, I’ve learned to enjoy the moment and let “how I look” go as much as possible. It took baby steps – and lots of encouragement – to get back into the water. But I’m so glad I did because it was part of who I am.