More than a decade has passed since I lost all my hair to alopecia areata, and it has been a transformational journey for me.
Alopecia areata is an autoimmune disease that causes uncontrollable hair loss on the scalp, face, and body. The affected area can range from small patches on the scalp to total hair loss. Anyone, regardless of age, gender, or ethnicity, can develop the condition. Alopecia areata will impact more than 2% of the world’s population, including nearly 7 million people in the United States.
The chronic (long-lasting) and unpredictable nature of alopecia areata can cause a profound psychological impact, including loss of self-identity and withdrawal. This was true for me.
As a child, I used to get bald patches on my head, but they usually resolved on their own with minimal medical intervention. However, in 2013, my hair loss was rapid. Within two months, I lost all the hair on my head. My eyebrows and eyelashes disappeared soon after.
At the time, the U.S. Food and Drug Administration (FDA) hadn’t approved any treatments for alopecia areata. My dermatologist tried every tool she had in her toolkit, such as cortisone shots and high-dose steroids, but nothing worked. After a few months, my dermatologist told me that I had exhausted all medical options and I should embrace my baldness.
I must admit that the first couple of years as a bald person were rough. My confidence was shattered, and I didn’t recognize myself in the mirror. I felt alone and ashamed, as if I had brought this upon myself. I didn’t leave my home without a wig.
Other than going to work, I stopped leaving my home altogether. I didn’t know anyone who was bald due to alopecia areata, and the loss of my identity left me heartbroken.
I am fortunate that one year into my alopecia journey, I found the National Alopecia Areata Foundation (NAAF). NAAF is a nonprofit organization that drives research to find a cure and accessible treatments for alopecia areata, supports people impacted by the condition, and educates the public about the disease.
In 2014, NAAF hosted a patient conference in San Antonio, so our family decided to take the road trip there. My son was 7 years old at the time of my diagnosis and extremely protective of me. He didn’t want me leaving the house without my wig so people couldn’t make fun of him or me.
I will never forget the day my son and I walked into the lobby of the hotel where the NAAF conference was being held. He looked at the sea of bald heads in the lobby and told me to take off my wig as I’d fit right in! I had not realized how deeply my alopecia areata affected my son and how seeing other bald people normalized my condition. He never asked me to wear my wig again!
At my first NAAF conference, I met so many people who looked like me, from young kids to people in their 70s. I didn’t have to explain how I felt because everyone there understood the trauma that comes with losing all your hair. For the first time in a long while, I felt like I belonged. And that is the most basic human need: the need to belong, to be understood, and to be accepted for who you are.
NAAF gave me that sense of belonging, and I continued to attend the NAAF conferences annually. Over time, I became the NAAF support group leader in my community and joined NAAF’s Board of Directors in 2023.
Looking back, I wish I had looked for a community right after my diagnosis. By meeting others who looked like me, I would have felt less alone. I would’ve found comfort in knowing that I could overcome the sense of loss, because others had too.
I wish I had also realized how alopecia areata is not just about hair. It is also an emotionally scarring condition, and I let my grief swallow me whole. I wish I had sought the help of a mental health professional right away and learned how to cope with this loss.
Over the years, I have done a lot of self-reflection and healing. It took a lot of courage and vulnerability to stop wearing my wig—many at work even warned me that I may never get promoted because of the way I look. Spoiler alert: They were wrong! Finding my bald community instilled in me a fresh perspective on life and helped reconstruct my sense of self.
I have learned that this world is full of compassionate people who really don’t care whether I have hair or not. Hair, sometimes called a woman’s crowning glory, is not what defines me.
What defines me is my character and my values, and those don’t have anything to do with how I look. Losing my hair allowed me to discover inner strength that I didn’t know I had. I am stronger today than I was before I lost my hair.
I read somewhere that healing doesn’t mean that the damage never existed. Healing means that it no longer controls your life. I’ve found healing by being of service to others, and it has changed the trajectory of my life. I continue to work with NAAF to advocate for those of us with alopecia areata and increase awareness of the myriad ways that it affects a person
There is still so much to do. Kids with alopecia areata get bullied in school every day. Insurance companies do not extend coverage for wigs to people with alopecia areata. There is no cure yet.
But there is hope. In the past three years, the FDA has approved three medications to treat severe alopecia areata, but they don’t work for everyone. There is no FDA-approved treatment for mild-to-moderate disease. And there is no FDA-approved treatment for young people under the age of 12. I remain hopeful that more drugs will come to market that will help people with alopecia areata.
If you or someone you know has alopecia areata, please know that you are not alone. Alopecia areata can be a cruel condition. You are stronger than alopecia areata, and you have a large community to lean on as you navigate a new you.
I love this quote by motivational speaker Brené Brown: “You either walk inside your story and own it or you stand outside your story and hustle for your worthiness.” No matter your journey, I hope you hold your head high and own your story. You are worthy of love and belonging, hair or no hair.
