Living with vitiligo for most of my life has provided me with insights I never would have about the condition had I not lived it myself. Hopefully, the following three surprises I encountered can help someone else who is new to the condition.

1. Mindset Plays a Big Part in Self-Acceptance

There was a time in my life when I didn’t accept my skin because I was heavily influenced by social standards and societal norms. This meant that, from a young age, my mindset was negatively programmed in relation to my skin. It was full of harmful messages, personal judgments, and resentments, which made it hard to see that I could love my skin.

I started working on my mindset in 2013 after I publicly shared my story for the first time. It was in that moment that I realized I wasn’t living a life that made me feel fulfilled because I was so concerned about what others thought about my skin. During that year, I started working on developing a healthy mindset. I tried to understand why I disliked my skin and why I felt the need to heal my skin with treatment — and I began questioning whether certain behaviors happened because I was desperately trying to fit in … which I was.

I began working on the things I valued: beach holidays, wanting to feel at peace with who I was, enjoying social settings, and most importantly, being my most authentic self. This helped me to heal and start enjoying those things I had spent so many years missing out on.

Working on your mindset takes time, focus, and a commitment that you’ll put yourself first, which can be the hardest part. Incorporating daily practices such as positive affirmations, reminding yourself of those things people love about you, and being conscious of your well-being all help keep your mind healthy and positive.

2. Having Vitiligo Means My Children Will Have a Higher Chance of Getting It

A common concern among prospective parents is whether their child will develop vitiligo because of its hereditary link. While I don’t have children at the moment, it is something that has crossed my mind.

The reason for the concern is because we understand what it’s like to have the condition: the challenges we have to face, the feeling of having someone stare at us, and the additional work we have to do to ensure self-acceptance. Living in a world where there is so much value placed on the way you look, the last thing we want is for our children to feel rejected in a society that often promotes perfection.

If you have vitiligo, the risk of a first-degree family member (your child, sibling, or parent) also having the condition is about 5 percent, whereas the rate of vitiligo is about 1 percent in the general population. Fortunately, that means everyone is at relatively low risk of getting vitiligo, but the risk is higher for the children of people who have the condition.

3. The Vitiligo Community Provides Amazing Support

Whenever I reflect over the past eight years and the positive changes I have made in my life, one thing that stands out the most is the support I’ve received from the vitiligo community. The connections I have made, the conversations that have encouraged me to be confident, and the sense of togetherness I’ve felt — especially on social media — have been amazing.

Everyone with vitiligo has likely experienced some moments of isolation. Whether you’ve had the condition for most of your life or just a few months, the initial stages — as you try to understand what vitiligo is and what it might mean for you — can make a person feel lonely. Being part of a community is key to helping you not feel so alone. Not only does it help you feel supported, but it’s an opportunity for you to support others.

My Perspective articles discuss vitiligo from a specific point of view. My Perspective articles don’t reflect the opinions of MyVitiligoTeam staff, medical experts, partners, advertisers, or sponsors. MyVitiligoTeam content isn't intended as a substitute for professional medical advice, diagnosis, or treatment.