"I learned how to hide my AU. I felt as if people wouldn’t accept me for me so it became my secret and only my family and those I truly trusted, which were not many, knew the real me." -Caroline
Please share your story:
My name is Caroline Alanis. At the age of 4, I lost my hair to Alopecia Universalis (AU). For those unaware of this condition, AU is an advanced form of alopecia areata. Although the exact cause of AU is unknown, it is thought to be an autoimmune condition in which an affected person's immune system mistakenly attacks the hair follicles.
Growing up bald was not easy. Although I had parents that tried to show me how to be courageous and tried to show me just how beautiful and blessed I was, I still 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 pressure of kids being mean and pulling off my bandana and laughing at me because I was bald. There was pressure of name calling and bullying.
My parents finally convinced me to start wearing a wig. It didn’t make things that much easier. I remember walking home from school one day with my brother and a girl decided it would be fun to pull it off and throw it on the ground. At that moment, all I could do was cry and run home. Every day I feared leaving the house, the emotional scar is unimaginable.
I learned how to hide my AU. I felt as if people wouldn’t accept me for me so it became my secret and only my family and those I truly trusted, which were not many, knew the real me. In High School only a few knew about my AU. This made it so easy to try to blend in; I never wanted to stand out, never! The ironic part about it was I would always be the one to be called by teachers to lead a project, to sing solos, participate in plays, fashion shows, and they even nominated me to join homecoming queen and enter a beauty pageant. One thing I realized, my fear never really went away by keeping my AU a secret and the emotional scar was also still a part of my life.
When I started my family, my AU was not only my secret but it had become my husband and my children’s secret. I held my family bound to my alopecia. When they were infants, I wouldn’t carry them in public for fear that they would pull my hair (wig). They were taught never to touch mommy’s hair ever! They could never have friends sleep over because it would be very uncomfortable for me to be me in my own house.
I am now 48 years old; married with 3 beautiful daughters. I joined an International Alopecia Group in July 2015 and that's when I realized my journey with AU has prepared me to be able to help others like me. But my baldness was still a secret. How do I encourage others to accept themselves if I myself could not let people know about my condition. So I started telling my husband's family and friends. I only wanted to tell people, not show people. But of course, God had other plans for me. The oddest thing was I started becoming uncomfortable wearing my wigs. This was strange because I have been wearing them for 40 years. It took a lot for me to take a look at myself bald. How can I tell my children and others that beauty really lies deep within if I myself can't see passed my lack of hair.
My husband helped me with my small steps into seeing myself for who I was, a beautiful woman living with AU. Slowly I found myself no longer wearing my wigs. We would go on drives, take walks on the beach and even take a selfie. I felt free, my secret slowly fading; including the emotional scar.
It started getting cold and I didn't like my hats since it looked terrible without any hair. I was pretty sad, because I really did not want to start wearing my wig again. I just prayed and asked God to lead me in what I am supposed to do. On Sunday October 4, 2015, a lady stopped me and said. "Excuse me, can I ask you a question?" I said "sure." "Do you have alopecia?" I said "yes!" She said "so do I.” Then she asked. "How do you do it?" I knew she meant how am I walking around without my wig? I told her "I don't know?" I said "This is all new to me." I told her "God is giving me the strength to do this. I couldn't have done this on my own." So that day, I officially retired all my wigs. Yes I put them all away for that special occasion.
I was so fortunate enough to meet others just walking around bald. They said “I would have never seen you had you worn your wig." How can I reach others if I am not true to myself? It took a lot to accept myself, with lots of guidance from God. I am finally in a place where I no longer need to wear a wig to feel complete!
How has your story shaped you into who you are today?:
Although growing up with AU wasn’t easy, as I look back, it has made me appreciate everything I have in my life. For the longest time I never realized how bound I was by my secret, my emotional scar and my wig.
Now, I no longer hide behind my wig. I am living with AU and you could say that I’m proud that I can say that and show people that I am still beautiful without hair. Now when I tell my daughters it is just hair, it is not just talk, I actually walk the walk. I used to think my lack of hair was an imperfection; I know now that it is my strength.
I am no longer afraid of not having my wig on. It was my armor but I was meant to stand out not blend in. God has always wanted me to stand out, now I am no longer afraid to stand out. I embrace it. And I am meeting and connecting with others who are just like me.
What encouraging words would you give to someone who shares a similar story? :
To all the parents who have children with alopecia, I can only imagine how devastating it is for you. But I must admit, I had great parents who never showed me their heartbreak. They only kept reinforcing I was blessed and special. Alopecia children grow up to be strong. Let them shine! For all the ladies and gentlemen, you are not alone. I know it can be difficult to not have hair but I can honestly say now, I wondered why I waited so long to surrender to alopecia! I understand that our struggles are the same but our journeys are different. So whatever makes you feel comfortable to be you, wig or no wig, let it be your choice. We only have one life to live, so live it!
Styled by: CoChicStyling
Photos by: Jazi Photo