We have a problem – one that is dividing the global story about vitiligo and jeopardizing the possibility of finding a cure. Perhaps you don’t want a cure, and that’s okay. This story isn’t about you – it’s about the future of vitiligo and representing the voices of those with vitiligo as a collective.
Before we get started, I want you to know where I’m coming from.
The title of this article pains me – even as I write it. As someone who has lived with vitiligo for more than twenty years and has gone on to create a lifestyle blog for girls and women with the condition, I am one of the biggest advocates and cheerleaders for those with “dappled” skin. Living with vitiligo, a disease without a cure, is hard to say the least. That’s why a world that accepts these white patches and celebrates them as beautiful is a world that so many living with vitiligo need.
In fact, it’s exactly the type of world that Living Dappled seeks to create. Our mission is built around the concept of redefined beauty – embracing who you are, where you are. Wearing makeup? Seeking treatment? Comfortable in your skin? They’re all great. We just want you to own the day and be happy.
Luckily, we aren’t alone in embracing this idea.
Today’s media portray vitiligo as beautiful – and that’s not bad
Messages of diversity and inclusion are becoming more prominent, and acceptance is “in.” In the past year alone, health and lifestyle magazines have featured countless people with vitiligo, celebrating the beauty of their skin. Perhaps most widely celebrated was CoverGirl’s decision to feature their first vitiligo model, making Amy Deanna the face of their truBlend foundation commercial. It was significant signal to the beauty industry that standards are being redefined – and brands are progressively jumping on board.
That’s something to celebrate. Brands embracing and telling the stories of people with vitiligo is a huge step forward in raising awareness for a disease that has had little coverage and recognition compared to other skin diseases. Thanks to the inclusive messages of these brands, vitiligo awareness is on the rise and hopefully the bullying and social stigma associated with it will soon be on its way out.
That’s the good news. And yet there’s still a problem.
Vitiligo is a disease – and we’re confusing that fact
The narrative that we should accept vitiligo isn’t wrong – it’s just not telling the whole story. We should accept people with vitiligo and embrace them as beautiful. Unfortunately, that’s where the story stops and as a result, the message it sends is that vitiligo is simply a cosmetic condition that needs to be embraced. Yet this couldn’t be farther from the truth.
Vitiligo is a disease – an autoimmune disease – that causes the immune system to attack skin cells, resulting in the loss of pigment. And that’s not all – vitiligo can also impact other organs as well. In fact, 12-60% of vitiligo patients have hearing loss and 16% experience eye abnormalities. Yet the “acceptance” narrative is so strong that even vitiligo patients are arguing these facts.
This July, Aerie released its newest inclusivity campaign featuring models with “visible disabilities and illnesses.” When a woman with vitiligo made the list, vitiligo patients wrote back on social media, arguing that vitiligo “is not a disease or illness,” and that “it’s just cosmetic.” Most recently, news broke of a promising new treatment out of the University of Massachusetts’s Vitiligo Clinic and Research Center, and patients protested the use of the word “disfiguring” to describe vitiligo’s effect on the skin. And yet, vitiligo is a disease, an illness, and disfiguring – as hard as it is to hear that.
And that’s not all.
The vitiligo narrative that isn’t told in the media
The current narrative in the media celebrates people with vitiligo who have accepted their skin – and even people who don’t want to lose their vitiligo. Yet there’s another story that needs to be told. The unfortunate reality is that there are many people who suffer because of their vitiligo.
“I’ve witnessed my patients’ suffering and depression,” said Dr. John Harris, a dermatologist and physician-scientist who is also the director of the University of Massachusetts Vitiligo Clinic and Research Center, in a recent interview with The Conversation. “Most want to get rid of it, and many are devastated by it. Some are so ashamed of how they look that they refuse to leave their homes in daylight, they quit their jobs, and they lose relationships. Some of those afflicted with vitiligo have committed suicide.”
It’s not uncommon for patients to deal with bullying, social neglect, physiological trauma and depression. In some parts of the world, vitiligo patients even experience extreme shame and stigma. As noted in The Conversation, patients and their families can be excluded from arranged marriages. One patient even requested that his arm with vitiligo be amputated because ‘he could marry with only one arm, but could not with vitiligo.’
So why aren’t we telling these stories? Because this narrative is a much darker, painful confession that doesn’t make for compelling headline copy or feel-good news. This narrative story doesn’t fill you with pride. In fact, this narrative is so sad, most people are too scared to tell it.
And yet, we need to.
We need to tell a different story to find a cure
Doctors and brands are using scary words like “disease” and “disfiguring” and “illness” to talk about vitiligo. And we need to do the same thing – because the people that hold the keys to research for a cure are questioning whether we need one at all. Just ask Dr. Harris.
“This past June, a pharmaceutical researcher came to me and asked, “Why are we making drugs for this disease if people actually like it? Should we be spending our resources and time on this?” It’s a fair question, and I believe so strongly that they need to know the truth about how devastating this condition is for so many,” said Dr. Harris.
To find a cure and better treatments, we need to invest in research and clinical trials. To fund that work, we need to convince lawmakers, pharmaceutical companies and donors that there is a need. And yet the story being told is that vitiligo patients are accepting their skin and don’t think it’s a disease. That’s a problem.
And that’s why this story matters.
Telling the vitiligo story – together
There are people struggling with vitiligo today. And there are people accepting their skin today. Perhaps its wishful thinking, but I must believe that we can respect each other’s stories and ultimately find one message that bridges the gap. We need to tell a story that’s pro-choice – that says that you can choose to accept your vitiligo or not; that says you might not want a cure – but recognize that others do.
This story matters to the future of vitiligo. This story matters each time someone with vitiligo is featured in the news and media. This story matters each time someone speaks for vitiligo on social media. This story matters because it’s our story.
It’s up to us to tell the world about our beauty – but also about the struggle of our community. You have the chance to tell a story that reflects both narratives. And we’re here to help.
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.