Being part of the 1% of the population with vitiligo can feel lonely at times. We often find ourselves navigating our cities, jobs, and universities while being the only person around with the condition. Yet even though real life can be isolating, the online vitiligo community is thriving. Just search “#vitiligo” on Instagram, and 195,529 stunning posts will bless your feed.
Our voices matter. Our stories are so unique, but our challenges and narratives of persistence resonate with the universal adversity people face on every day. By being vocal and cultivating honest conversations, we can create friendships and connections within our vitiligo community – and it can start with something as simple as Instagram.
Here are five ways to raise awareness for vitiligo on Instagram.
Share your story
Many of us with vitiligo have become accustomed to the stares and pointed fingers of curious strangers. In my own experiences, I have felt almost like an animal in a zoo. It takes courage to face the world and live boldly and unapologetically while having vitiligo. So, what’s your story? Sharing your story educates the other 99% of the population without vitiligo. Instagram is a powerful platform to share your coping mechanisms, pigmentation updates, struggles and triumphs while living with vitiligo. Consider Instagram live as a way of actively engaging with followers and sharing what vitiligo means to you. If you feel more comfortable writing a long post about your journey, share it all at once in a post – or day by day. In whatever shape or form, get your story out there!
Use top vitiligo hashtags when you post
To maximize your outreach and have the most impact, be sure to include trending vitiligo hashtags when posting about your journey. Find the top hashtag’s by searching #vitiligo and seeing how many uses each one has. Here’s a list of some of my favorites: #livingdappled, #vitiligo, #vitiligogirl, #vitiligogirls, #girlswithvitiligo, and #inourskinwewin. That’s just to name a few!
Share your photos with vitiligo support groups and organizations
There is an abundance of support groups and nonprofits who are seeking stories like yours to highlight on their Instagram feeds. Organizations like the Vitiligo Research Foundation (@vrfoundation), Living Dappled (@livingdappled), Vitiligo Bond (@vitligobond), and Vit Friends (@vitfriends) are great resources to engage with when seeking to raise awareness. These accounts are at the core of the vitiligo community and can act as a tool to raise awareness and build support. If you wish to be featured on these accounts, tag the organization on your posts or send a direct message with your pictures and a note.
Join a vitiligo awareness project
If you think of your skin as art, you aren’t alone. It has been therapeutic for me to find beauty in the pattern of my spots and attempt to celebrate vitiligo instead of shaming my skin. The very real and visible allure vitiligo offers to some has inspired a plethora of awareness projects. For example, photographer Brock Elbank (@mrelbank) is currently developing a photo series highlighting the uniqueness of vitiligo and the individuality of each pattern. You can also be a part of awareness projects that focus on healing with the daily struggles of living with vitiligo, like the Tough Skin project (@tough.skin). By reaching out to the Tough Skin project, you’ll have the ability to showcase your story and your spots while raising awareness for mental health and visibility within vitiligo community. If being photographed isn’t your style: celebrate your spots and be painted. The account Pigment and Paint (@pigmentpainter) would love to paint you. Send over your story and a photo and be illustrated.
Submit your photo to submission-based vitiligo accounts
There are also several submissions-based accounts to connect with on Instagram. Follow accounts like @Vitiligo.Beauty, @Vitligopeople, @Vitiligobeauties, @Vitiligo.World, or @Vitiligo.Jpg to share your picture and written story. These accounts celebrate spots and fearless beauty. Don’t be shy – raising awareness for vitiligo cultivates education and positivity. Sharing your story is important and may inspire someone else to share theirs. The ability to have candid conversations about the condition will only aid in creating positive change within the vitiligo community and beyond. So, get involved!
Do you use Instagram to raise awareness for vitiligo? Tell us how in the comments below.
Simone Girma is an LA-based communications graduate working for NBC. She’s lived with vitiligo for ten years and has learned how to appreciate the story of her skin – something she aims to share with readers.