Living With Alopecia: Why Our Hair Loss Doesn’t Define Us

Hair can mean many things to a person. It can be a way to express a mood or vibe. It can be a connection to your ancestors or a means of making a statement (political or personal). At the very least, hair can be a way to just make yourself feel and look good. But for the more than 20 million women who are affected by alopecia in the United States, the sudden absence of hair can result in insurmountable feelings of sadness, anger, confusion, and loss that disrupts their lives completely.

But why does it have to be this way? Why is being bald perceived so negatively? For as long as the world has existed, society's standards of beauty has told us that women with full heads of hair and locks that graze their waist are the picture of femininity and elegance (see: the Birth of Venus). But in actuality, female baldness is more than beautiful — it's boldness. It's confidence. It's a redefinition of social norms. It's power.

We spoke to four women who are reclaiming what it means and looks like to live with alopecia. These images are part of a larger stock image shoot Refinery29 recently shot to increase visibility for people living with hair loss. Ahead, in their own words, why hair — and hair loss — does not define them.

Editor’s note: The following article includes discussion about domestic violence. Some details may be triggering. Please proceed thoughtfully. This interview has been edited for length and clarity.

"I was 13 when I started to lose my hair. After one swim practice, I went to rinse the chlorine off myself and afterwards, as I was brushing my hair, I noticed several large clumps being pulled away with the brush. I panicked. What ensued in the following months changed my world more than I could have possibly imagined. Doctor after doctor ran test after test. Some inserted needles into the epidermis of my head, injecting me with steroids to promote hair growth, others delicately offered contact information for the “best” wig stores near me, specializing in hairpieces for those with hair loss resulting from radiation, chemotherapy, or alopecia areata, a term that for me long felt like acid on the tongue. This was only the beginning.

"I lost all my hair, eyelashes and eyebrows, before my 14th birthday, and it hasn’t grown back since. When I first lost my hair, I felt like part of me had died. It seems dramatic, but in a culture obsessed with painting femininity as long flowing hair and smooth skin with small delicate features, I really didn’t check any of the other boxes. My mental health deteriorated. I wanted so badly to look like other people, and I knew it wasn’t possible. I wore bad wigs for about six years because they were all I had to fake a sense of normalcy, but something clicked when I got to college. I realized, in the best way, that absolutely no one cares what I look like.

"I have been completely bald for about 12 years now and I couldn’t feel more like myself. I gave up the idea of having hair ever again a long time ago, which admittedly brings me a tremendous peace. When I reflect on old photos, it makes me want to give young Han a hug, because if only she knew the strength and self-assurance she possessed, she would never want to look like anyone else. I feel the most beautiful and like myself when I remember I am love. I have love, I give love to friends and my partner, and family. I receive love from them unconditionally. There was a time in my life I didn’t think I was worthy of that."

"I lost my hair when I was 19. It took a year to be officially diagnosed with alopecia areata totalis, a genetic and rare autoimmune disease, but my hair fell out all at once in matter of a few months. My hair loss used to be something that brought me a lot of pain and shame, something I referred to as a flaw. I wore wigs for the first three years and hid it from everyone with the exception of my parents and siblings. It took a huge toll on my mental health. I went through a bit of an identity crisis. I felt like I had lost my femininity and was no longer a complete woman or even someone that deserved to be loved. I no longer recognized myself and for years, I couldn’t look at myself in the mirror without a wig on. I felt like the woman I was meant to be was robbed from me. At the age of 20, I was really struggling with depression and was suicidal for a short period of time. I was in an aggressive therapy program and tried to work through these identity issues. I had to take a break from school, work, and relationships.

"When I moved to NY at the age of 23 I had finally accepted the fact that I would never have hair again, but I still needed to fall in love with the new woman that was staring back at me. I was battling my inner self that was still carrying a lot of shame, but at the same time the wigs stopped feeling comfortable and started to feel like a foreign object on my head. The shame of hiding my alopecia became more overwhelming than the idea of going wig-less and living life as a bald woman, which ultimately pushed me to be open and accepting of my hair loss. I stopped wearing wigs in 2017 and never looked back.

"Being a Black woman in today’s society and growing up realizing that you are not what society deems to be the ideal 'beauty standard' was hard enough. I assumed I wouldn’t be accepted by others, but to my surprise once I started sharing my bald head with the world, most people embraced me with love and admiration. I have a really strong support system — my family has been there every step of the way and I know I wouldn’t be here today without them.

Now, being bald has become one of my favorite things about myself. I am so proud of the beautiful woman I am today. This took a lot of soul searching and a lot of tears. If I could snap my fingers and have my hair back tomorrow I wouldn’t. I am a proud alopecian and would never have it another way. I feel like when you are able to truly love yourself, feeling beautiful is a constant."

"I was 16 years old when my mom noticed my first bald spot on the back of my head. I was in denial and waited months to go to a dermatologist where I was then 'diagnosed' with alopecia areata. I was given creams, pills, shampoos, and steroids shots, and it became a back and forth battle between the hair growth and the hair loss. My hair was curly so I was able to come up with specific hairstyles to cover up my spots. However, there came a point where I could not cover them any longer. When I started college, I lost my lashes and eyebrows rapidly. My bald patches were connecting and creating larger patches. I began wearing head scarves every single day because I was afraid someone would see my bald spots. I was 19 years old and questioning my entire career choice. I would think, how could I be in front of a camera? I have no lashes, eyebrows, or hair.

"There came a point where the treatments were not working and I was just simply exhausted from trying to 'fix' or find a 'cure' to what I have. The pandemic definitely gave me a lot of time to reflect and the summer of 2020, I made the decision to shave my head. I felt so relieved. Even though I did not walk out my house bald right away, when I was ready, I started to embrace it. 

"I am still learning to accept my hair, even with all its uncertainties. Because I have alopecia Areata, I have bald patches that come and go. It certainly has taken a toll on my mental health. It took a while for me to start accepting my hair loss. When I see my hair start growing, I get frustrated because I know it's going to fall out again. Going out is not the same — people staring is overwhelming. You start questioning what people are thinking as you walk in a room. 

"I’m grateful I found a support group through The National Alopecia Areata Foundation. It was the first time I was surrounded by people who understood me. That's where I met Lindsey Sullivan, the group leader, who also has alopecia and never fails to have a smile on her face. I look up to Christie Valdiserri, the founder of The Baldtourge, a community of women and girls that are navigating hair loss. Anytime she holds an event I'm eager to go. These are opportunities where I get to be surrounded by women who look like me. It is so empowering. Christie reminds me that bald is bold.  

"I had to feel comfortable acknowledging my hair loss and what I was going through before I was able to share my story with others. Listening to other people's hair loss journeys inspires me so much. I am not yet 100% comfortable or confident opening up about my hair loss, but the reason I do it is so that I might help others."

Renee Reyes in Nanushka Evie top, $295, available at nanushka.com; Wiederhoeft skirt; Stylist’s own shoes; Odette Beau hoops, $180, available at odetteny.com. & Renee in Wiederhhoeft top; Melke Medusa pant, $720, available at melkenyc.com; Stylist’s own shoes; Stylist’s own earrings.

"I was 19 when I first noticed clumps of hair falling every time I rinsed my head in the shower. Over the course of four weeks, I went from having a full head of enviably silky hair to a bald-ish patchy mess. My parents, whom I was living with at the time while commuting to school, noticed this drastic change and my mother in particular was appalled. As an ex-model she valued beauty and was protective of my hair, constantly reminding me it was especially beautiful and something to be proud of. As common as alopecia is, they had never seen or heard of it on this scale and came to the conclusion such a sudden change in appearance could only result from doing hard drugs. I was in shock and confused myself, and the suspicion and accusations only worsened feelings of depression and the erratic behavior that comes with it, which didn’t help my case.

"I ended up homeless that year. I accepted the blame because I couldn't bear to tell them what I thought was the real cause. Now, keep in mind that alopecia areata is a genetic autoimmune disease, so despite common belief, stress is not the cause of this type of hair loss. My doctor did tell me however that certain challenging or traumatic life events can act as stressors that flip the 'on' switch for illnesses such as alopecia so long as there is genetic predisposition. A few months prior, I’d just gotten back from my first time going abroad alone. During that time, I was held against my will for more than a month. I was physically and sexually abused daily, and force fed drugs (so I guess my father wasn’t too far off, but it was neither a choice nor something I was doing currently). I would say that’s probably stressful enough to act as an 'on' switch. So I was homeless, hairless, deeply traumatized, and broke since I was robbed of most of my savings when my things were taken. I couldn’t attend class anymore, but worked a minimum wage job at a movie theater to try to slowly earn my savings back. A coworker named Taylor noticed I was in a rough spot and let me stay on their couch. Their living room became my new home base, and I finally had a chance to actually process the fact I was 19 and balding. 

"Eventually I could afford some cheap, fantasy-colored cosplay wigs. They would never fly in any professional setting, but they were cute and perfectly acceptable for my minimum wage retail gig. Even with the wigs, I still felt pretty lost, and it was strange to look in the mirror and not recognize myself. I didn’t take a single selfie for a whole year. I decided to compartmentalize my hair loss woes and use my free time and new stability to get back into some of my hobbies and passions. I had left behind a collection of several hundred plants in my childhood bedroom and missed them dearly. I started building a little stash of used horticulture textbooks under the couch and studied them relentlessly since I didn’t have access to the real thing. I may not have had my own plants anymore, but my studying did pay off when I landed a pretty awesome job at a plantscaping company and began working as a horticulturist. Distraction is a powerful and fruitful coping method! I showed up to my new job without a wig from day one. Plants tend not to care about human hair loss. 

"By the time I was back in school again, settled in my own dream apartment where Taylor was my official roommate and no longer just the owner of the couch I slept on, I realized I felt pretty darn content with myself. I had gotten my fair share of negative reactions and insensitive comments to my hair loss during all this, but most rolled off me since I was so preoccupied with other things. Going out in public repeatedly as my patchy self also gradually desensitized me to being seen in this state, and while I didn’t think I was beautiful, I felt totally comfortable in my body for the first time in my life. I decided to use the confidence I got from my indifference to whether or not I was beautiful to represent the rallying cry of the alopecia community, 'Bald Is Beautiful,' in the most literal way I could: by entering a beauty pageant. It would be amazing to normalize seeing more participants on stage like me. 

"I feel very fortunate to have made peace with my hair loss, especially knowing how emotionally devastating it can be. It bothers me knowing the stigma surrounding hair loss still has the power to limit a person’s quality of life. My beauty pageant platform gave me the momentum to establish a non-profit with the goal of empowering others to make peace with their condition and live confidently. Since losing my hair, I cherish myself both on days I feel beautiful and days I don’t. I’ve learned that beauty isn’t a requirement for loving my body and myself."