Why Summer Can Be Difficult for Those with Vitiligo (An Open Letter)

To the mothers, fathers, siblings, husbands, besties, aunts and uncles, coworkers and friends of those with vitiligo:

In high school, I vividly remember watching one of the popular, tan girls in our class writing a packing list for her summer trip to the beach. Of course, scribbled near the top in perfectly messy writing was the word “bikini.” I remember feeling so jealous as I watched this girl dream about her summer plans. I couldn’t even wrap my brain around what it must be like to be excited for summer – because all I felt was gut-wrenching dread.

Living with vitiligo has always been difficult for me. Summers? I would describe that more as a form of mental torture. For many, “summer” conjures images of cookouts, backyard sprinklers and beach days. For me, “summer” often meant staring eyes, pointing fingers, awkward encounters and sinking self-esteem. I would wonder how many times I would cry this summer, how many panic attacks I would have, how many days with friends and family that would be ruined by own lack of confidence. And when everyone else is celebrating the arrival of summer and you can’t find the ability to do the same, it can be yet another reminder of just how different you really are.

Today, I’m sharing some of the moments that trigger my stress and anxiety each summer. I don’t share this as a pity party, but rather to bring awareness to the fact that your loved one with vitiligo might not have the same joy about summer as you do. I hope you can take a moment to recognize the potential for these pain points in your own loved one’s life. You don’t need to fix it – in fact, you probably can’t. But being sensitive to these moments and being willing to just sit and listen can make a world of difference.

Full disclosure: I don’t have spots anymore since vitiligo took over 100% of my skin. But my “spotted” days were not that long ago, and some of these instances still trigger self-doubt for me.

Wearing shorts or swimsuits

Or really, wearing any summer clothing that puts your skin on full display. Would I rather wear pants? Heck yes, I would. Would I die of a heat stroke in hot, humid Virginia? Heck yes, I would. In other words, summers are difficult because you’re stuck between a rock and a hard place. You can be uncomfortable all day because of the heat – or you can be uncomfortable all day because people are staring. Perhaps the most difficult part is the first time it’s hot enough for shorts or a dress or a swimsuit. You’ve been hiding – intentionally or not – your skin all winter under long sleeves and turtlenecks and now you have to bare your biggest vulnerability to the world. Yikes. How can you help? Offer a compliment – or ten. Build us up. Shower us with love. Or take us shopping so we can find summer clothes we love so much that we forget we have spots.

Going shopping – and trying on clothes

Speaking of shopping – this can also be a confidence-buster. Dressing rooms were built for critical reflection. What if you’re already feeling low about the way you look? That dressing room mirror becomes your worst enemy. I remember many shopping adventures gone sour because I lost my self-esteem in a dressing room – or three. You need your friends there to build you up, but it’s also hard to see how different clothes look on your spot-free friends. The entire outing can be difficult if you’re not mentally ready. How can you help? Make sure we’re in the right head space when we go shopping. Again, offer compliments. And most importantly, be ready to call a time out if the emotional tide starts to turn.

Being in crowds or public spaces where people are likely to stare

Have you ever caught someone staring at you? How did it make you feel? Probably a little bit uncomfortable. Maybe a little insecure. Thank goodness that doesn’t happen often. Except for those with vitiligo. Do you know often people used to stare at me when I still had spots? All the time. Every time. If I left the house in the summer with any of my skin showing, I got stares. Let me tell you – it was exhausting. And hard. How can you help? Recognize the situation when it’s happening and ask if we’re okay. And then try to cheer us up.

Outdoor activities with little shade

You know the lava game that kids play? As someone with vitiligo, summers are a lot like the lava game for me. Except in this case, the lava is the sun and the shade is my only saving grace. It’s amazing how much I think about and look for shade now that I have vitiligo – and how stressful it can be when it’s not readily available. How can you help? Plan activities that have shade at least as an option. Going to the beach? Bring an umbrella. Sitting outdoors at a restaurant? Make sure it’s in the shade. And if you can’t have shade, plan your activity for early in the morning or late at night when the sun’s rays are a little more forgiving.

Photo by Shawna Simmons

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Erika Page

Erika Page is a writer and blogger with universal vitiligo. Her first spots appeared on her spine when she was seven years old and today vitiligo covers her entire body. Based just south of Washington, D.C., Erika founded Living Dappled to create a community of inspiration and hope for girls and women living with vitiligo.

4 Comments

  1. Zeb Clarke

    Thanks for sharing. I know exactly how you feel. I dread summers and look forward to Fall & Winter when I don’t need to think constantly about avoiding the sun

    • Erika Page

      Yes! It’s just so much easier. I find that I am usually mentally and emotionally exhausted by the end of summer because of this extra stress.

  2. Ann

    Living in Florida is a challenge for those of us with vitiligo. I no longer wear sleeveless shirts or sandals. I cannot stand looking at my many spots never mind having strangers stare at them. I use to love the beach and cannot remember the last time I was there. Family and friends really don’t get the impact it has mentally and emotionally. I continue to pray for a cure.

  3. Marie Drislane

    I am older with vitiligo (64). I’ve had it all over my arms and legs for the past 14 years. I don’t go out in the sun uncovered because I really do look crazily spotted but also because the sun is more damaging to vitiligo sufferers. The good news is that everyone thinks the sun is more damaging now and a lot of non-vitiligo people are covering up! You don’t look so out of place if you cover up. I shop at Coolibar and I have a long sleeved swimsuit that’s really pretty cute and I wear swim pants. I have a lot of people who don’t have vitiligo comment on how they like the outfit and are thinking about getting it because they are worried about melanoma. So I know that isn’t really good news that everyone is worried about the sun but misery does love company!

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