In the view of society, hair is connected with youthfulness and beauty in women, virility, and masculinity in men. It should come as no surprise that hair loss may make many men and women feel self-conscious. But should that be always the case?
Caroline Mangune Alanis was only 4 years old when she lost all her hair, “I don’t even know what it is like to have hair.” she said. Caroline has Alopecia Universalis (AU) — the rarest form of Alopecia Areata, it’s an autoimmune condition that attacks the hair follicles.
Growing up Bald
Born in the Philippines to a strict father and a sweet and kind soul mother, as she describes, “My dad didn’t allow me to go out with friends a lot. I was never allowed to go on sleepovers. He sheltered me from people. I never realized that until I was an adult, and reflected on my childhood.” She also has two brothers who were protective as well.
At the tender age of 4, she was already practicing “DAILY AFFIRMATIONS” although she never knew how impactful they were, “I was always told to look in the front of the mirror. I would say, I am beautiful, I am strong, I am special. I have beautiful eyes, beautiful skin, etc.” Her parents never told her the pain and heartbreak of raising her, rather they just always told her how special and beautiful she was, “They always told me I was meant to stand out.”
She had no recollection of the time her hair started falling out, but she was told that her hair fell off within a 2-week time frame, “My mom said it could have been brought by stress from an earthquake we had in the Philippines.”
Caroline was never allowed to say negative words about herself, or else her father would scold her. She was imparted that words she says about herself will either bring her up or tear her down, “So maybe I thought negative things about myself, but I never said it. Growing up bald, I never felt ugly, just incomplete.”
Growing up bald, I never felt ugly, just incomplete.
– Caroline Mangune Alanis
Although her parents taught her how to be courageous and had always made her feel how beautiful and blessed she was, growing up bald was not easy — she had to endure the everyday pressure of life. “There was the pressure of seeing little girls with beautiful hair and wishing every day that I had that. There was the pressure of kids being mean and pulling off my bandana and laughing at me because I was bald.” She faced the pressure of name-calling and bullying.
Caroline’s parents finally convinced her to start wearing a wig which, unfortunately, didn’t make things easier as she recalls. Walking home from school one day with her brother, a girl decided it would be fun to pull Caroline’s wig off and throw it on the ground. “At that moment, all I could do was cry and run home,” she adds, “every day I feared leaving the house, the emotional scar is unimaginable.”
She learned how to hide her AU, she felt as if people wouldn’t accept her for being her so it became a secret, and only her family and those she truly trusted, which were not many, knew the real Caroline.
In high school, only a handful knew about her AU, “which made it so easy to try to blend in since I never wanted to stand out, never!” The ironic part about it, as Caroline describes, was she would always be the one to be called by her teachers to lead a project, sing solos, and participate in plays and fashion shows. They even nominated her to join the homecoming queen and enter a beauty pageant. However, “I realized that my fear never really went away by keeping my AU a secret and the emotional scar was also still a part of my life.”
Every day I feared leaving the house, the emotional scar is unimaginable.
-Caroline Mangune Alanis
Being Bold With The Love Of Her Life
She met her husband Mark from work, where they were both managing stores at a mall in Chicago. They became best friends and were each other’s plus one at weddings, “We didn’t start dating until I transferred to another mall.” she said.
But the day has to come when she must tell Mark about her condition, “Telling Mark about my alopecia was very difficult. He once told me that he loved hair and eyes on a woman,” she adds, “He himself has gorgeous hair.” Caroline felt she didn’t have one of the criteria Mark was looking for. Although she mentioned several times that she had something to tell him and he would always say “whenever you are ready.” Caroline thought that they both knew that Mark is aware of her wearing a wig, they just never talked about it.
Mark and Caroline had been dating for about a year when she finally tried to tell him one evening. She got choked up and started crying. He told her, “Caroline, don’t you think I know you by now from your head down to your toes?” He had tears in his eyes. She then asked Mark why he didn’t tell her. He replied, “I wanted you to trust me enough to tell me”.
As they began to start their family, Caroline’s AU became their secret. She held her family bound to her alopecia. When her daughters’ were infants, she wouldn’t carry them in public for fear that they would pull her wig. “They were taught never to touch mommy’s hair, ever!”
Her daughter could never have friends sleep over because it would be very uncomfortable for Caroline to be her in her own home. “My daughters were always fearful when we were out in public, especially on windy days.”
Caroline’s baldness was a big secret, even her husband’s family didn’t know, “because I hid so much all my life, I didn’t realize I walked in fear every day. I didn’t realize I lived in bondage.”
Mark told her, “Caroline, don’t you think I know you by now from your head down to your toes?” He had tears in his eyes. She then asked Mark why he didn’t tell her. He replied, “I wanted you to trust me enough to tell me”.
Embracing Being Beautiful
In the summer of 2015, her life opened a new door, she became a part of an International Alopecia Group on Facebook and realized that her journey with AU has prepared her to help others like her. She saw so many men and women devastated by losing their hair. They were going through a lot of emotional pain, “You see, alopecia can happen at any time in one’s life so the adults experience a loss and have to grieve.” Caroline said. Alopecia might not be life-threatening but it is life-altering. Hair, eyebrows, and lashes truly make a difference in one’s appearance, “I myself put my face on every day.” she added.
She also saw some men and women walking proudly bald. One man, in particular, Anthony Carrigan, an actor who also kept his alopecia a secret but he came out and had been helping others and is a beacon of light.
Then, Caroline started giving advice about doing daily affirmations, “doing lots of SELF LOVE!” as well as giving makeup tips, the alopecia community knows her as the “Eyelash Queen”.
But once the parents of alopecia children started posting their heartbreaks, “that’s when I realized my parents’ challenges of raising me, a bald child.” Caroline started reiterating what her parents taught her. She gave advice to parents, about how special their child was, how they were perfect and beautiful just as they were. “Alopecia children are so strong,” she noted.
“I then realized I was all those things: perfect, beautiful, and strong,” she said, but her baldness was still a secret. Caroline thought to herself, how does she encourage others to accept themselves if she herself could not let people know about her condition? So as those thoughts lingered in her head, she began telling her family and friends — she only wanted to tell people, not show people. Her goal was to have 30 different wigs for each day of the month.
“But God! God had other plans for me,” the unexplainable started occurring, her wigs became unbearably uncomfortable to wear, “it almost felt like my scalp was burning,” which she thought was completely strange since she has been wearing them for 40 years. It took a lot to take a look at herself bald. She then began to think, “How can I tell my daughters and others that beauty really lies deep within if I myself can’t see past my lack of hair?”
On August 14, 2015, on her way home with her husband from dinner, Caroline’s wig was getting itchy so she took it off to scratch her head. She was about to put her wig back on but Mark held her hand to stop her. He said “Honey, don’t put it on, you’re fine. You are safe with me, nothing can hurt you, and no one will hurt you. You are beautiful.” She reluctantly did what he asked and wanted to be strong for him.
Mark kept holding her hand tight and kept asking if she was okay, “I just kept saying it is scary.” As they were nearing their home, her husband pulled over and said “Come on let’s take a selfie.” to lighten the situation. Her husband dropped Caroline off in front of their home, with her wig in her purse. Mark told her to go ahead and go into their home.
“For the first time in 40 years, I felt God’s love on my head. The soft wind touched my head, a few raindrops falling on my head. I cried and laughed as I ran to my house.” she recalls.
After that night, her husband helped Caroline with her small steps into seeing herself for who she was — a beautiful woman living with AU. Slowly, she found herself no longer wearing her wigs. They would go on drives and take walks on the beach. “I felt free, my secret slowly fading; including the emotional scar.”
I felt free, my secret slowly fading; including the emotional scar.
-Caroline Mangune Alanis
“On Sept 9, 2015, I posted it on Facebook, I cried the whole night. Everyone was so kind. I was still afraid, but I started walking bald.” she expressed.
In the fall of that year, it started getting cold and she didn’t like her hats since they looked terrible without any hair. She was pretty sad because she really did not want to start wearing her wigs again, “I just prayed and asked God to lead me in what I am supposed to do. I got my answer on Sunday, October 4th,” A lady stopped her and asked if she has Alopecia, to which she responded “Yes!”. The woman said, so did she, and asked Caroline, how does she do it? — She knew the lady meant how she could walk around without her wig.
Caroline answered “I don’t know. This is all new to me. “God is giving me the strength to do this. I couldn’t have done this on my own.” So that day, she officially retired all her wigs. “Yes, I put them all away for those special occasions,” she added.
She has met so many people just like her all over the world which inspired her to start her own Alopecia Group in Chicago, where they meet once a month. “I love having a family I call my own, people who truly understand me.”
The Chicago Alopecians
Caroline together with her friends started the Facebook group, with her as the main facilitator. It is a place where they can share their personal journeys and ask for advice or help. The Chicago Alopecians’ mission is to ensure that no one feels alone. Recently, they have been planning to create more events to cater to everyone, children, teens, and men.
“We each have our own alopecia journey and we just want to connect with each other,” said Caroline. They also allow wig vendors in the group, “Chicagoland is such a big place. I love having a solution for everyone in the group.” As of writing, they currently have 332 members, and they’ve also started an Instagram page to widen their reach.
For the international group, Caroline is also encouraging others to create their own alopecia groups — their own tribe in their local towns.
“I have always known God wanted me to stand out, but I was always afraid. These days, I am no longer afraid to not have my wig on, I embrace it.”
Caroline is truly a woman who is defying what society calls “beautiful”.
