In 2018, I learned that I had alopecia areata, an autoimmune condition that causes hair loss.
As my hair began to fall out, I felt alone and isolated.
Finding a community on Instagram helped me learn to accept myself.
I grew up in Honolulu, Hawaii, where long, luscious hair is a cultural staple. It's not uncommon to see people with hair down to their waist. For most of my life, my hair grew past my ribcage and was dyed shades of pink and blue. Like many others, I didn't think much of having hair until 2018, when my hair started falling out in clumps.
In February of that year, I went on a trip with my sister to Austin, Texas. As I waited for her to finish showering at the hotel, I ran my fingers through my hair and skimmed something smooth and cold. It felt instinctively wrong. I asked my sister to take a look and her eyes widened with panic. There was a dollar-coin-sized bald spot right in the center of the back of my head.
A handful of doctor visits later and I learned I had alopecia areata, an autoimmune condition where the body attacks your hair follicles. It's unpredictable and there are no proven preventable treatments or cures, only steroid shots in the scalp when a patch shows up. From there, it's a waiting game to see if hair regrows, while hair might fall out from elsewhere on your body.
Despite alopecia being mainly cosmetic, my mental health deteriorated over the following weeks. I felt silently suffocated by the endless list of societal beauty standards for women, especially in the western world. I'd wake up each morning analyzing the loose hairs on my pillow. I'd hold my breath every time the wind blew, potentially exposing my bald spot to strangers behind me. I dreaded washing my hair because I didn't want to see how much would fall out.
Besides the day-to-day struggles, I worried no one would find me attractive - and that even I didn't find myself attractive anymore.
I felt alone and isolated; I didn't know anyone else with alopecia. While my friends and family were there to support me, there was only so much they could say or do. They couldn't understand the nuances of this experience. I couldn't find any support groups near me in Hawaii, and unfortunately, I couldn't just hop in the car and drive somewhere else.
And that's when I decided to turn to Instagram. While the platform has become known for worsening our mental health by making us feel bad about ourselves, I felt desperate for connection: and that was where I discovered other women going through the same thing I was, just by searching through alopecia-related hashtags.
One woman, Vanessa Rosa, showed off her bald spots on her account. When her condition became extreme, she showed her shaved head. I messaged her and she said that she was there if I ever needed to talk.
Like me, Rosa didn't know anyone else who had alopecia when she was diagnosed at age 12, so she hid it. By age 19, she felt frustrated letting alopecia control her life and decided to make a change by coming out online.
She started a separate public account called @thealopeciaclub to be a safe space for people to talk about their alopecia experience. So far, the account has over 600 followers.
"If I continued to bottle up my emotions with alopecia, it was going to end badly so I should use that energy to help others with the help I wish I had gotten," she told me.
When baldness is talked about, it usually has to do with men, not women. There are rarely bald women represented in the media.
"Having a sense of community is so important in fostering feelings of unity and acceptance. This can be an absolutely crucial part of healing and developing resilience when faced with a unique challenge, such as an uncommon medical condition or certain stressor," Natalie Capano, a New York-based therapist with Cobb Psychology LCSW, told me. "The internet is a wonderful place to meet people in a way you might not normally… Hearing other people's experiences can make you feel less alone, feel seen, heard, validated, and understood."
Another account I found was @baldbossmovement, which features images of women flaunting their bald heads and memes about being a woman who is bald today. The account, run by Arkansas-based Nell Coleman, has over 19,000 followers. Coleman, who is bald by choice, told me she started the account in 2012 to "bring together women from all walks of life and push the mission that hair is like an accessory."
Many community members, some of whom have attended real-world meetups in cities like New York and Atlanta, have alopecia, Coleman told me. The account has become a place where women can talk about their journey and encourage others to embrace their baldness and share it publicly.
"Finding community helps change your mindset and what you think becomes your reality," Coleman said.
Seeing others confident and happy without hair helped me see the beauty in myself when I felt like it was falling out by the day. As Coleman told me, hair " doesn't determine your beauty or worth, you do."
Seeing bald women standing alongside their partners helped me envision my own future with alopecia, ranging from dating to going to the beach despite having visible patches. From there, acceptance became easier - and life with alopecia has too.
Read the original article on Insider