The Problem with Celebrating Vitiligo (as Something Beautiful)
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.
(Note: You can read Dr. John Harris’ response to the reaction regarding the new treatment here.)
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.
EXCELLENT PIECE…..THANK YOU, THANK YOU, THANK YOU, Erika!!!!!!!!!! I actually had a consult with Dr. John Harris in March of this year for evaluation of my vitiligo and I made it a point to tell him and the other doctors who were present that I did NOT like my vitiligo and to please continue researching for a cure.
Thanks, Amanda! I think it’s so important to share both sides of the story. Living Dappled was created for ALL women with vitiligo and we stand by that by trying to be the voice of both sides of this topic.
Amazing I live it! My son suffers everyday! No matter what I tell him. I pray for a cure everyday!
Written so beautifully. I do not accept my vitiligo and probably never will. I research almost daily to see if there is anything new out there to treat this. Drug companies are not doing enough and in my experience dermatologist in my area do not really care much about it maybe because there is no cure. I was diagnosed several years ago and freaked out. Maybe as an older woman I should have been more accepting to it, but like I said earlier, I never will. I do hope one day a cure is found for future generations, and I hope there are enough researchers out there that will fight to find a cure.
Thank you! This describes exactly how I feel about vitiligo and the need to share both sides of the story. I was only a child when my mother was diagnosed with vitiligo. I can’t even describe how much we all suffered as a family seeing my 40 year-old mother depressed for months and then years. Vitiligo captured my mother for the rest of my childhood and adolescence. Each year seeing less and less of my mom as her vitiligo spread on her body. My mom is now almost 70 years of age and still struggles with accepting herself.
Early this month, my 4 year-old son was diagnosed with vitiligo. The disease that took my mom and my childhood now has its grip on my son. To said that I’m horrified by the potential of it affecting my son the same way it affected my mother is unspeakable. While I can see the value of creating a culture of acceptance about vitiligo, I believe that the effects of this disease on the afflicted and their families is undeniable.
Pris, well said. Although I’m sorry for the impact this disease has had on your family. Not everyone can come to a place of acceptance – and that story needs to be told too. Thanks for being a part of the Living Dappled community.
I absolutely agree with this. It is a disease, and it need attention. You’re not born with vitiligo it’s acquired. Your immune system is making a mistake and attacking your body. As much as diversity and feeling accepted is important, it still needs to be flagged that a constantly changing skin disease should not be normalised. Better treatments and/or a cure is extremely necessary because you aren’t naturally supposed to have patches like that. Besides, vitiligo is a great disease to study/research because you can understand the immune system visually, and how it moves within the body. It can give insight into many other things scientifically. Find a cure. Find a cure, and again… Find a cure.
I am a 72 year old woman with Vitliligo. I’m happy for those who have embraced Vitiligo and call it beautiful! I am not one of them, in fact, I hate it! Some days I wish I didn’t have to leave the house, My friends say they don’t even notice it, which only makes me feel worse. Aren’t they even looking at me? When I look in a mirror it’s all that I see! I’ve tried every makeup that promises full coverage and/or lasts 18-24 hour. None of them do what they promise. And finding the right shade of makeup, well good luck with that. Maybe some people think at my age, I shouldn’t care! I hate this disease, disorder, or whatever you want to call it. I hope and pray those who want improvement or a cure receive it! I don’t think it will happen for me in my life time. Surely there are others who feel the way I feel, I hope I’m not alone in my struggle! I’m happy to stumble upon your blog, thanks for listening! Please find a cure!
Marcie, thanks for the comment! I feel your pain – I often feel like my feelings aren’t validated when friends and family try to make me feel better by saying “it doesn’t matter” and “I never notice it.” You aren’t alone there! We’re coming out with a list of top-rated foundations and camouflages for vitiligo soon that might help – keep an eye out!
My vitiligo grows so very slow and it makes me very shy and sad. I keep asking why me. But when I saw my father struggling with prostate cancer and kidney problem eight years ago and then I had to given up my womb because of myoma, I knew that I had to accept myself the way it is. So, I made a decision to be brave. My family supports me, my friends at work are so kind. But yes I am still a weirdo in a crowd. Some will look at me twice with a disgust mimic, some with sympathy, and some even ask me with no hesitate, what is wrong with your skin. And I (with a little bit hurt in me) will answer them kindly with a smile on my face. I could not force people to understand me, they might not know anything about vitiligo. So, the easiest way is the choice that I have to live a happy life no matter what. God loves me the way I am.