“I Realized There Were Others Out There Like Me”

Photo: Courtesy of Jennifer Leahy for Facebook.
Since its launch 12 years ago, Facebook has become so engrained in our everyday lives that we don’t even think twice before signing on each morning. But for many, it’s also proven to be pivotal in forming long-lasting connections.
In honor of Friends Day and the company’s 12th birthday, Facebook (for the first time ever) invited an intimate group of its community to sit down and discuss their experiences with Mark Zuckerberg and Sheryl Sandberg. Among them were Abby Asistio and Rachel Regal, who shared the powerful story of how they met through the social networking site and bonded through their struggles with alopecia, an autoimmune skin disease that results in hair loss. Shortly after having her youngest daughter, Regal knew there was something more going on than a little postpartum hair loss. After a trip to her doctor, she was diagnosed with alopecia and told there was only a 30% chance she would respond to treatment — and her insurance wouldn’t cover it. Within two years, she lost all of her hair. As she sat at home, struggling to understand what was happening and what she should do, she came across Asistio’s Facebook page. Asistio, a singer in the Philippines, has lived with alopecia for most of her life and started an online campaign — #AlopeciaAwareness — encouraging women to embrace hair loss and find the bravery to go bald.
We chatted with the pair at Facebook HQ, where they shared with us what it’s like to struggle with the disease, why they stopped wearing wigs, and how they define beauty.
Tell us more about your experience growing up with alopecia.
Asistio: "I had alopecia since I was 4. It started with round patches, but eventually, I became bald. I even lost my eyebrows and eyelashes. So it was difficult growing up as a little girl, because it was obvious that I was sick. I wore a hat to school and got ridiculed and bullied by some of my classmates. I felt like I could never be beautiful according to the world's standards because I didn't have hair. "I started wearing wigs in high school. And as much as I projected to others that I was okay and confident with myself, I knew I had so many limitations, doubts, and fears about myself. I was just blessed to have great and supportive friends and family [who] never made me feel different. My faith also helped me not to focus on the external and more on the kind of person I was becoming."
When did you decide to stop wearing wigs?
Asistio: “I had a huge turning point in my life in 2012. Being an artist in the Philippines, I got suggestions from some friends to go bald. I was defensive about it at first, because I felt like they wanted me to be someone I'm not. "I wasn't comfortable showing my head to people. But it did make me wonder. When I got home, I searched for photos of bald women. I came across those with alopecia from different parts of the world and was encouraged by how brave they are about their condition. That challenged me to step out of my comfort zone and decide to rise above my baldness.
"I made the decision to lose the wig and write a song that spoke about my hair loss journey. On September 25, 2012, I had a concert for Alopecia Awareness called Stripped, sang my song, 'Beautiful,' and showed everyone my shiny, bald head for the very first time."

What did that feel like?

Asistio: "It was such a liberating experience. Along with stripping my head of the wigs and bandanas came the stripping of my soul — letting go of all my fears, doubts, and insecurities as regards to not having hair. It was like some sort of rebirth. I'm meant to make a stand for this disease and help others rise above it." Tell us why you started the campaign.
Asistio: "I loved blogging and expressing myself. I also loved taking photos [and] videos and uploading them on Facebook and Instagram. I wanted to make a difference and I thought the best way to start is within my circle of friends and family. I wrote a blog about my alopecia journey, coming out bald, and started the Double A hand sign campaign. Surprisingly, a lot of people decided to support and help. A lot of people shared my blog and posted their own photos! The campaign eventually spread [to] different parts of the world." Tell us how you discovered Asistio's campaign.
Regal: "I discovered Abby’s campaign when I was trying to understand my diagnosis with alopecia. Determined to search for answers and connect with something, I had gone home and started searching alopecia on the internet. It led me to Abby’s page on Facebook.
"I started following her, admiring her from the U.S. as she was in the Philippines. One day, I decided to message her and we started a friendship and communication based on both of our weakest, most vulnerable parts of our life. She started encouraging me to embrace my condition, as I was beautiful as I was. Eventually, I started finding others on the Facebook page from all parts of the world and didn’t feel so alone anymore."

Why was connecting with others going through a similar situation so important?

Regal: "Connecting with others was very important to me, because being a mom of three, my life is mostly spent at home. I was the only one with the condition that I knew of in my area and in my family. [I felt] like I was the only one in the world with this condition. Finding Abby and others helped me rise above my depression, simply by seeing their pictures on Facebook. Not all pictures were happy pictures, many were heartbroken and a lot of tears, but that was the truth. It was a hard position to be in and understand."
Photo: Courtesy of Jennifer Leahy for Facebook.
Your daughter Eliana was also diagnosed with alopecia — what has it been like for her?
Regal: "Eliana was diagnosed at age 6, shortly after starting kindergarten, with a small patch on top of her head. I remember at that point, I had just come to an acceptance with my bald head, but still had my eyebrows and eyelashes. Then, one day after Eliana stepped out of the shower, I noticed a small tiny bald patch right in the center on top of her head. I remember looking down at it in shock. [Was] the hair loss that just robbed me and nearly broke me in many ways going to do the same to her?
"When Eliana learned she had developed alopecia, she was okay with it, because she'd seen pictures on Facebook of other children and adults with alopecia; her perception of differences had already been changed. But at school, it was hard to keep that at-home confidence. Over that summer, Eliana lost 80% of her hair.
"On the first day of second grade, she wanted me to do her hair the way I had always done it, but we couldn’t — she'd lost too much. She got frustrated...then angry. I just hugged her and she belted from the belly of her stomach, crying so hard, saying 'I MISS MY HAIR!' I started to get emotional with her, too. I knew how she felt. It makes the biggest difference knowing you’re not the only one.
"Now, she is in third grade and her hair has been growing back at a rapid speed. She has hard times when people mistake her for a boy and she gets emotional, but we talk and I find ways to remind her of where she came from and where she is now. I keep her aware that it could always fall out again. It could stay, it could not, but how she handles the change is the most important thing of all."
You asked Sheryl Sandberg how she defines beauty — how do YOU define it?
Regal: "Beauty is unconditional love for yourself. When you love yourself as you are, you love who God has made you to be. When you have that kind of beauty, the rest of you just shines out for others to see and for others to want for their own self and others. That is true beauty."

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