I got vitiligo at the age of seven. The white dots along my spine seemed innocent enough, but my mother knew better. Her mother, my grandmother, had lived with vitiligo for most of her life. A dermatologist confirmed the diagnosis.
Despite beginning a topical steroid to treat the white spots, my vitiligo spread–and rapidly. First to my knees and elbows, and then on to almost every other part of my body. The steroid couldn’t keep up and due to a number of reasons, my parents and I decided not to pursue further treatment. Over the course of the next two decades, I lost 100% of my skin’s pigment.
The transition from fully pigmented to fully depigmented was a difficult one–a mental and emotional rollercoaster that left me with low self-esteem and high social anxiety more often than not. While there were joy-filled moments tied to my vitiligo–like when my friends outlined my spots with gel pens–the reality is that the majority of my teenage and young adult years were filled with anguish.
Before I share what that was like, please know that this experience is shared solely with the intention of raising awareness of some of the invisible impact of this skin condition, and more importantly, to help validate the experiences of others going through a similar situation. Today there are many people who embrace and celebrate their vitiligo–and that warms my heart to see. Unfortunately that wasn’t my experience. And if it hasn’t been yours, you are not alone.
Here’s what it was like growing up with vitiligo.
I felt “different”
I spent nearly two decades with speckled skin. While it started with a spot or two, there was about a decade where the vitiligo was incredibly obvious. The spots covered me head to toe and there was no hiding that I had the skin condition.
Everywhere I went, I could feel the stares, whether real or imagined. The double take or over the shoulder glance, or even worse, the blatant stares, left me feeling like I was a freak. I hated the attention, and yet with skin like mine you couldn’t not notice it. More than anything, I just wanted to blend in and be “unseen.” Yet everywhere I went, the stares reminded me of just how different I really was.
I felt alone, and lonely
I grew up in a very small, rural town. Other than my grandmother, I didn’t know anyone else with vitiligo–or ever see anyone with the condition. And while my grandmother had it, we never talked about it and I don’t know that I was very aware of her having it. Awareness and education around the condition was essentially nonexistent–a far cry from the growing support around vitiligo today.
At times, I would try to express how I felt about my vitiligo. Friends and family were encouraging and supportive. Yet more often than not, their well-intended comments–like “I barely notice” and “you’re beautiful anyway”–left me feeling even more misunderstood. So, I stopped talking about it because I felt like no one “got me.”
I couldn’t stop thinking about my skin
I struggled significantly with the changes in my skin color. So much so that it became the focus of my mental attention. Vitiligo was the lens through which I saw my life. Meeting someone new? I wondered what they might think about my skin. Trying on clothes? I dreaded looking in the mirror. Going to the pool? I didn’t want to put on a bathing suit.
I would go to bed thinking about my vitiligo, and wake up to start thinking about it again. There was nothing I wanted more than to wake up one day and have the spots be gone. So much so that I would spend hours imagining what I might look like if I didn’t have vitiligo.
I was never bullied or teased (surprisingly)
Most of the people with vitiligo that I know that grew up with the condition can share a story or two about being teased or bullied because of their skin. But not me. To this day, I cannot remember ever being bullied or teased because of my skin. Perhaps I blocked it out. Perhaps I just got lucky.
Despite this, as I reflect back on that time period, I didn’t need other bullies–because I was my own worst bully. The negative thoughts that flowed through my mind about my skin were obsessive and toxic. It was a mental battle, and I was losing.
If any of the above describes your experience, I’m sending you a virtual hug. You aren’t alone. Your experience is real and valid. And you have communities ready to support and encourage you through the organizations like the Vitiligo Society and Living Dappled.