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5 Lies to Stop Telling Yourself if You Live with Vitiligo

5 Lies to Stop Telling Yourself if You Live with Vitiligo

woman with vitiligo, hand on hip

I spent the first half of my life telling myself lies: I’m ugly, I’ll never be happy, I don’t deserve to be loved. The stream of negative thoughts was toxic and un-ending. The words were rooted in a deep fear. And I believed every single one.

It wasn’t until this past year that I truly started to unpack this deep web of lies rooted in my thoughts. I attended a body confidence workshop in New York City hosted by Sarah Herron, former Bachelor contestant and founder of SheLift. Sitting in a circle surrounded by women each struggling with their own confidence, I found myself moved to tears as I started identifying the negative narratives I had let live in my head.

Just a few months later, I came face to face with the realization that I was my own worst bully as I listened to Natalie Ambersley speak at World Vitiligo Day about her own experiences with self-bullying. I was lucky to have grown up in an environment without a lot of bullying from peers. Yet I was my bully – I had been the mean girl feeding myself lies and whispering hurtful words. That realization was simultaneously shocking and freeing. If I was responsible for my pain, I could be responsible for changing it.  

That journey brought me to Rachael Hollis’ book, Girl Wash Your Face. In the introduction, Rachael writes, “You, and only you, are ultimately responsible for who you become and how happy you are… But that truth will never be believable if you don’t first understand the lies that get in the way of it.” Chapter by chapter, she walks you through the lies in her own life and how she’s worked to overcome them.

Everyone struggles with lies. You have two options: believe the lies and hold yourself back, or kick those lies to side and choose to find another truth. The danger in believing these lies is that they can influence your life. If you don’t believe you are worthy of love, you might not be open to dating. If you don’t believe you have support in this journey, you might never reach out for help. By choosing another truth, you give yourself the power and permission to find a happier, healthier life.

It turns out that I am beautiful – snowy white skin and all. I am truly happy. And I do deserve love. I was able to accept these truths by saying goodbye to the lies I’ve telling myself. Here are a few of them.

The lie: I’m ugly

Perhaps the more accurate lie was, “I’m a freak.” That’s how I felt growing up with vitiligo. Being “beautiful” was something that I thought happened to other people. I would have settled for “okay-looking” or “just average.” Being entirely ordinary would have been a serious upgrade from how I felt. So yes, I believed I was ugly. And once I lost 100% of my skin’s pigment to vitiligo, I believed that I needed to wear tanner to be pretty. Then one day, I went to the store without makeup. And then I went to the gym without makeup. And then I went a whole weekend without makeup. And then one day last year, I threw away my entire bottle of tanner and never put it on again. The surprise ending? I love my snowy white skin, the fact that I never get tan lines and the fact that my skin is the same color every season of the year.

Tip to Try: Going to the store for five minutes without makeup one night was the small step that sparked a year-long journey in self-acceptance for me. I never intended for it to be the start of something bigger, but I found that facing my fears in the smallest of ways gave me newfound courage and confidence. Try facing your own body confidence fears by making one small change today.

The lie: I’m alone

Yes, living with vitiligo can make you feel alone. I spent the better part of my life feeling alone and misunderstood when it came to my skin. Growing up in a small town and living with a rare disease meant I rarely saw another person with vitiligo. I often felt that my feelings were misunderstood, so I learned to keep my pain to myself. It wasn’t until I was in my twenties that I found another girl with vitiligo online and asked to speak to her. We were on the phone for more than an hour – and I burst into tears afterwards, overwhelmed at the flood of emotions I was experiencing. For the first time in my life, I didn’t feel alone. And that feeling gave me a power that I hadn’t expected. I felt understood, accepted and confident. Fast forward a decade and I have an extensive network of friends with vitiligo that I meet through Living Dappled and events like World Vitiligo Day. I am not alone.

Tip to Try: Many living with vitiligo feel that those without it have a hard time understanding how it feels to live with this disease. Today there are many support groups online and with local chapters. Reach out to one group or person to start the conversation.

The lie: I need my vitiligo to disappear to be happy

The weight of living with a disease without a cure can be soul-crushing. It’s so hard to accept the fact that vitiligo will likely be a part of the rest of your life. At least, it was for me. In fact, it was so hard to accept that for years, I held onto the idea that by my twenties, it would be gone. In this daydream, I would finally be happy and be able to start really living my life. The idea was absurd – not only had I given up treatments early in my journey with vitiligo, but the spots were covering most of my body. It wasn’t until my early twenties that that reality came crashing down. I’m not sure what brought that moment about, but as I was staring in the mirror one morning, I realized that I will likely have vitiligo for the rest of my life. I spent the next four hours crying inconsolably. But as hard as that moment was to accept, it gave me the freedom to start living in the ‘now,’ instead of waiting to be happy. I do a lot of things to find joy in my life – staying physically active, keeping a happiness journal and going to therapy are just a few. Today, I am happy – and I do have vitiligo.

Tip to Try: I believe that happiness has a lot to do with your perspective. You can choose to be happy by looking for the joy in your own life. I do this by keeping a happiness journal. I have a small notebook I keep next to my bed and I write down three things I’m thankful for or happy about each day. This practice takes no more than a few minutes each day – but it helps me build a habit of seeing joy.

The lie: I need people to like me

I grew up not liking myself – or at least, my skin. That dislike drove me to seek acceptance from others to help me feel good about myself. Since I couldn’t offer myself love or acceptance, I looked externally to find proof that I was worthy of it. Small things – like people saying hello, thinking about me or simply including me in an activity – have often been those signs for me. Yet seeking this feeling externally leads to a lot of disappoint and rejection – and often unnecessarily. The reality is that not everyone will like you. And you also have no business needing them to. I needed to like myself – and be comfortable knowing that was enough. If I’m being honest, I still don’t have this one figured out entirely. My self-love and acceptance have soared in the past year. Yet I built a habit of seeking acceptance from others – and that’s a tough habit to break. For now, I’m trying to be more cognizant of how I react to those around me – and reminding myself that I am enough. 

Tip to Try: I’m still working to change the narrative in my head – and that requires practice and repetition. To help drill one of the things I need to hear into my thoughts, I made the word part of a password that I use daily. By typing the word every day – sometimes multiple times a day – I get fresh reminders to be kind to myself.

The lie: I can’t live the life I want

This lie was perhaps the most heart-wrenching of all. Growing up with vitiligo, I couldn’t help but feel as if I had been robbed. The beautifully tan-skinned girl I had once been was gone, along with the life she would have lived. I wanted to go to the pool and go shopping without overwhelming anxiety. But instead I was trapped in this reality without any end in sight. I felt as if I couldn’t live the life I wanted. I felt forced to change my life to fit my spots. And yet, that was another lie. I met my husband – a true beach boy at heart – when I was in my twenties. At that time, I was wearing tanner head to toe to cover my skin and the idea of being seen in bathing suit made me sick. But I was in love – and was willing to push my boundaries for him, and for myself. The short story is that each trip became a little easier and today I don’t wear tanner at all – or think twice about being in a bathing suit. I found that I can do the things I want if I only have the confidence to try them.

Tip to Try: Are you willing to push boundaries and get uncomfortable? That’s what it took for me to live the life I wanted. It wasn’t easy, but it was possible. And practice made perfect. Try listing the things you want to do in your life but feel like you can’t because of your skin. Which one can you try – even it’s a small step?

What lies are you choosing to believe because of your skin?

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