Erika Page Created the Vitiligo Community She Always Wanted: 'Knowing Somebody Got Me Was Everything'

Before founding Living Dappled, Erika Page felt alone with her vitiligo and tried to “fight” it. Making a place for others to be seen has helped her embrace it

Sandy Swagger Jones
Sandy Swagger Jones

When Erika Page was seven, she began noticing white spots on her spine. Her mother, suspecting that it might be vitiligo (as her grandmother also had the condition), took her to the doctor, who confirmed the diagnosis.

Though she initially began an aggressive steroid treatment, Page and her mother decided not to continue with it due to the potential long-term side effects, and over the next 20 years, Page watched as her skin and hair continued to lose pigment until she eventually ended up with no pigment left in her skin and hair mostly depigmented.  .

Vitiligo, a disease that causes loss of pigment in patches of the skin, is an autoimmune disease that’s believed to affect around 1% of the population. Until recently, it’s been somewhat misunderstood due to its rarity, but lately, it’s gained public awareness through visible figures with vitiligo (including models like Winnie Harlow, Breanne Rice and Amy Deanna) and more inclusive cultural moments (Barbie launched a doll with vitiligo in 2020). 

But growing up, Page, 34, felt alone and misunderstood, an experience that inspired her to launch a community called Living Dappled in 2016. It serves as a place for women living with vitiligo to connect and learn more about the condition.

Her journey to accepting life with vitiligo was a long one, which resulted in unhealthy habits along the way (including becoming addicted to self-tanner). But after much reflection, she’s come to a place of self-acceptance and is grateful to be able to dedicate a portion of her life towards helping others to do the same.

Read more about her experience in her own words below.

<p>Courtesy of Erika Page</p> Erika Page as a teen with her siblings

Courtesy of Erika Page

Erika Page as a teen with her siblings

My struggle to cope

It was in high school that I really started to struggle with my vitiligo. In my 20s, I started wearing self-tanner [to try to achieve an even skin tone] and eventually, because I did lose all of my pigment, I could put on tanner [evenly]. At first it gave me a huge sense of joy and freedom because it helped me look more like I thought I should.

I'm Caucasian but I grew up with tan skin. My family tans very easily in the summer and so wearing tanner helped me restore the image of what I thought I should be looking like. It also allowed me to walk down the street without being stared at for the first time that I could really remember. I spent so many years living with spots being very visibly different from others and I just felt like I couldn't go anywhere without being stared at. I wanted nothing more than to just be invisible and to blend in. And so tanner gave me a way to do that.

I ended up wearing tanner and makeup head to toe for about seven years and I would not leave the house without it. It did give me a lot of freedom, but very quickly it became a toxic relationship because I was so dependent on it. I started planning my life around applying tanner and if there was even a streak out of place, it was enough to send me into a downward mental spiral.

Eventually, I decided to start [tapering off my use] by lightening the color of the tanner that I was wearing. Ultimately, I decided to throw away the bottle one day ahead of a body confidence workshop that I was attending. I didn't really have a plan at the time, but I threw away the bottle and let my tan just fade over time and ended up never putting that back on. Since then, I have tried to start embracing and accepting my skin the way it is and trying to see the beauty in that.

<p>Courtesy of Erika Page</p> Erika Page with dyed hair and self tanner

Courtesy of Erika Page

Erika Page with dyed hair and self tanner

Losing my pigment

I ended up losing 100% of my skin's pigment, and I'll be the first to admit losing all of my pigments made it easier for me to try to start loving my skin. Being one color is a lot easier for me mentally than living with spots, because a lot of people just assume that I just have pale skin and they wouldn't know that I had a condition unless I told them about it.

And so in that way, I'm allowed to have a little bit more privacy over this experience where for many years, it was so obvious — anyone could tell that I had a skin condition or something was going on. That part of the social experience of living with vitiligo is gone, and that does make life a lot easier.

Being the person that's leading Living Dappled and this community, people do look at you and your story —and so when I am someone who maybe has it easier because I don't have pigment, that is not lost on me.

But at the same time, it took me 20 years to naturally lose 100% of my pigment. And because I have lost all of it, I have limped through every step of living with vitiligo that there is. I've been there for the first spot. I've been there for losing pigment fully on my chest, and then on my hands, all of these different stages of living with vitiligo, and now living fully depigmented.

I like to think of it as, I've walked pretty far through this. And because of that, I think I'm able to relate to a lot of people and what they're going through.

Related: What Is Vitiligo?

Finding support

Mental health and support tied to vitiligo was not a thing when I was growing up with it. The thing that ultimately ended up helping me the most was reaching out to and connecting with other people who have vitiligo. Ten years ago, there weren't even really people posting on social media about it, and the pictures that were out there were textbook clinical pictures that were a little bit daunting to look at if you're seeing vitiligo for the first time. It wasn't the models that we see today. 

It was very lonely living with that condition. I would talk with my friends and family about it but it was hard for them to understand what I was going through because they couldn't relate. It’s really hard to put yourself in the shoes of someone who is losing their pigment one spot at a time. I think that's hard to imagine, for a lot of people. And so, a lot of the times the well-intended encouragement that was offered back to me, like, “Oh, I hardly notice” or “You're so beautiful,” things like that just ended up making me feel misunderstood and isolated. 

It wasn't until I was in my twenties that I started looking online to see what was out there about it. I ended up finding this other girl my age who had it and we talked on the phone for like an hour. I sobbed when I hung up the phone because for the first time in my life, I felt understood and I didn't know that I had been needing to feel understood so much. It gave me confidence and a morale boost that helped me feel that I'm not alone. Knowing that somebody got me was everything.

Those connection points over time are what allowed me to have the confidence to start taking steps, like throwing away the tanner bottle, and eventually, leaving the house without makeup on. And I eventually stopped dyeing my hair. I think more than anything, [having this community] has really been the thing that helped me live with this condition.

<p>Courtesy of Erika Page</p>

Courtesy of Erika Page

Related: Grandfather with Vitiligo Crochets Dolls for Kids with the Condition: They &#39;Feel Represented&#39;

Helping others through their vitiligo journeys

I started Living Dappled years ago when I was looking online and realized the little bit of information that was out there was focused on treatment and the medical side of things, but there was a huge missing part of the story. 

I felt like it was an everyday story that wasn't being told – everything from waking up and finding a new spot, to looking in the mirror and not even recognizing yourself, to not knowing when you're going to lose more pigment or if you are ever going to lose more pigment, to being stared at in the grocery store and having that moment ruin your whole day.

There are all these little moments that are part of living with vitiligo and I wanted to give those living with the condition, especially women, a resource and a safe haven to go to so that they could feel understood and hear stories from other women living with condition, get answers to their questions about their vitiligo and feel like somewhere in this world, someone understands them and what they were going through. What I ended up creating was the blog and then more recently, I created a membership network, which is a private Facebook group for people who want more community and connection.

Women have told me that they sat down and read the blog start to finish. It was the first time in their life that they didn't feel alone. The blog gave them confidence to stop hiding their vitiligo, or maybe post the first picture that ever showed their vitiligo on social media.

One of my favorite stories is from a woman I now consider a dear friend. Her name is Leah and we were doing a photoshoot in New York City for the blog. When we do these photo shoots, we don't work with models, we just work with everyday women who model for us. She signed up to participate in the shoot and I had her put on a dress that came down just above the knees, because she had vitiligo down her legs, and we wanted to photograph that.

We were walking around New York City, which is a very busy city, lots of people all around taking pictures. And later that day, we're at lunch. And she shared that that was the first time that she had ever worn clothing that showed her vitiligo like that. I was so proud of her in that moment because that is such a huge step and a very scary step for a lot of people, to let people see that. She said that being surrounded by this group of women who had vitiligo who understood it and got it and were there to support her gave her the confidence to do that.

Related: 10-Year-Old Model with Skin Condition Challenges Beauty Standards: &#39;You Don&#39;t Have to Be Perfect to Be Beautiful&#39;

<p>Courtesy of Erika Page</p>

Courtesy of Erika Page

A work in progress

A lot of people say that they've accepted [their vitiligo] and embraced it and all that, but I don't think that is a one-time decision and then you're done. Every summer, I still have skin envy looking at other people who have beautiful tan skin and don't have to slather themselves in as much sunscreen as I do. I have moments of a lack of confidence or doubt in the way that I look. So, it's not that all of that is gone. 

But overall, I have embraced the idea of trying to love myself the way that I am. That is a journey that I'm still on and will be on for the rest of my life. That’s an everyday thing that shows up in the small moments. It’s about pushing away the negative thoughts when they pop into my head. It's about trying not to compare myself to others. 

I'm now the mom to two girls and it has certainly crossed my mind that they could get vitiligo. I have a lot of thoughts and emotions when it comes to that. But I also know that if they were to get vitiligo, they aren’t growing up in the world that I grew up in. They are growing up in a world where there's a Barbie with vitiligo. And there have been a lot of vitiligo models on billboards. And I am surrounded by a community of people who have vitiligo and are all here to support each other. The amount of resources and support for those of vitiligo has exploded over the years. And awareness and acceptance of vitiligo, in general, has really exploded. I'm thankful that we are now living in this era where that is true.

I would encourage anyone struggling with vitiligo to reach out and ask for help or find other people living with a condition. There are tons of support groups, there are vitiligo conferences, there's Living Dappled, obviously. We know a lot more about vitiligo today than we ever did before. There are a lot more resources out there and awareness for vitiligo than there ever was before. But that said, there's still work to be done. And so reaching out and finding people who are going through this, who can help you feel understood and supported, is probably the most important thing that you can do if you're living with this condition.

<p>Courtesy of Erika Page</p> Erika Page as a young girl

Courtesy of Erika Page

Erika Page as a young girl

If you told young Erika about the girl that I am today, I would not have believed you. I literally thought the only way to be happy was to not have vitiligo and I would have fought you tooth and nail for that if you told me otherwise. There is hope. You just keep trying. And I know it can feel so dark and depressing; I have been there crying on the floor thinking that my life was over because of this. It’s not. And there are a lot of people that want to help you. Keep trying and keep fighting for the version of you that loves yourself.

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