Type “#vitiligo” into Instagram’s search bar and your screen will fill with images – more than 162,760 to be exact. To the outside eye, it might appear that the vitiligo community happens to be very active on the social platform. This is true, but it’s not by chance.
According to Elizabeth Witcher, recent graduate of the University of Oregon, social media actually provides a means of connection for those with vitiligo that is absent in the physical world. And she has her research to prove it.
A sociology and psychology major, Elizabeth used her senior thesis project to study the role that social media has on the emotional lives of those with vitiligo. Diving into her research, she interviewed 21 men and women with vitiligo – who also used Instagram – through video and instant messaging interviews. Expecting to find that people were making deep connections through Instagram though, she was surprised to find that that wasn’t quite the case.
“What I actually found in my sample was that participants were not developing intense, close relationships but rather they got support solely through the presence of others,” said Elizabeth, who will be attending the University of California, Davis for a PhD in sociology.
Likes and comments on Instagram become easy ways for the vitiligo community to give and receive support, which builds a positive atmosphere for those seeking connectivity. Hashtags make it easy to find the vitiligo community. And those with vitiligo can feel good as they post, knowing they are contributing to a growing awareness of the condition.
“Instagram provides representation that isn’t seen in everyday life,” said Elizabeth. “Prior to social media, most people with vitiligo felt alienated as there was no reflection of this part of them in daily life, nor a way to search out others.”
And she knows the feeling. Living with vitiligo since the age of three, Elizabeth grew up in a rural town in Oregon.
“I grew up very isolated,” said Elizabeth, who didn’t meet another person with vitiligo until she was 24. ““The area I lived in lacked any sort of diversity and no one knew what vitiligo was.”
Not only that, but Instagram – and social media – wasn’t around yet.
“The internet didn’t really become the thing that it is today until I was an adult,” said Elizabeth, who didn’t feel like she fit in until she moved to a bigger city with lots of different people. “There was no way to find other people with vitiligo.”
Today, vitiligo covers half of the twenty-nine-year-old’s body, but she’s in a better place both mentally and physically.
“Social media has had a very positive effect on my life,” said Elizabeth. “I’m able to interact with others and make connections that I otherwise would have never been able to make.”
Elizabeth created her Instagram account in 2013, but her first post about vitiligo wasn’t until two months later. Shopping in a Whole Foods, she took a picture of brown beans with little white spots and posted it on her Instagram with the caption, “#vitiligo beans.” Winnie Harlow actually commented on the post with a laughing emoji. And it was then that Elizabeth realized the value of hashtags in connecting with others who had vitiligo.
“So many of us find each other simply by searching #Vitiligo,” said Elizabeth. “I’m proud to be a part of this greatly supportive online community as we spread the word and break down the stigma.”
For more information about this research study, contact Elizabeth on Instagram at @elizzydizzy.
Erika Page is the Founder and Editor of Living Dappled. After getting vitiligo at the age of seven, she lost 100% of her pigment to the condition and today lives with universal vitiligo.