Living with Vitiligo? It’s Okay to Not Be Okay

Living with vitiligo isn’t for the weak – it takes guts, courage, resilience and a lot of love to make it through just one day with vitiligo. But that doesn’t mean you’re going to be strong and resilient every minute of every day. It’s okay to not be okay when you live with vitiligo. And here’s why.

Vitiligo is a crazy, unexpected thing

Who would have ever thought you would end up losing your skin color? You worry about failing a test, losing a relationship or not getting that job or internship – but losing your pigment? I would have never guessed that my life would take this turn, and you’re probably with me. Vitiligo is an unexpected thing. It turns your life upside down. You go from being “normal” to being the person that people stare at, the person who struggles with self-love, the person who can’t get dressed in the morning because nothing will fix your skin. You don’t feel like you anymore, and you don’t know how to handle it.

It’s an everyday struggle that – for most – has no end in sight

When facing something difficult, people often look for hope – an end or a break from what they’re dealing with. If you live with vitiligo, you likely don’t have that luxury. There is no cure for the condition, and most treatments are hit or miss at best. So when you’re facing something like vitiligo, when you don’t see an end in sight, it can be scary. It is scary. It’s a big thing to face and understand that your life might never be the same – that you might carry this burden with you for the rest of your life.

It’s something you have no control over

For twenty years, I’ve watched the tiny spots on my skin spread and take over my entire body – talk about feeling helpless. You don’t realize how much your skin is a part of who you are until you watch it being stripped of color. And you can’t do anything about it. You can’t change it, stop it or make it better. You just have to accept it. And that’s hard to do when accepting it is the very last thing you want to do.

So yes, it’s more than okay to cry until your tissue box is destroyed. It’s okay to feel sorry for yourself. It’s okay to feel angry and frustrated – because these are all normal feelings when you live with vitiligo. Living with spots is hard, and it’s okay to have those moments of weakness.

But don’t lose yourself to it. Cry and then wipe your eyes. Pout and then pull yourself together. Yell and scream and then calmly tell yourself it’s going to be okay – because it is going to be okay. Each time you get through the pain, you become a stronger person. And the stronger you become, the more you love yourself for who you are, and the less the pain bubbles to the surface.

You can do this – we can do this, together.