Black Girl Bald: The Truth About Living With Alopecia As A Black Woman

Today marks the end of Alopecia Awareness Month. Here's one woman's story.

By Jazzi Johnson

As a black woman, I always feel powerful. I walk with my head up as I listen to the genres of music we’ve sculpted from drums and banjos; I dance the dances we’ve created and perfected and re-created again through centuries; I stand in awe at my ancestral maternal lineage, and feel a large imprint of history and legacy and accomplishment every chance I choose to sit in that intrinsic power. I feel a part of this beautiful, dynamic, complex community of black women in America— except for one thing.

One of the greatest attributes about black women - and all women, I suppose - is the identity that is assumed about our hair. Particularly, black women’s hair has always stood out, as it deviates from the European standards of beauty. As diverse as we are, black women’s hair uncategorically unifies us. Curly, kinky, loopy, frizzy, fluffy, nappy, twisted, long, short, light, dark—no matter the texture, you know that when you see it, you see us. Learning to care for your black hair, and (many times) other black people’s hair as well, is a rite of passage for black girls and women. From afro puffs and cornrows to hot combs and maybe even a perm (once upon a time)—it’s a shared experience that every black girl and black woman can relate to. 

Except for me, that is.

Since I was 11 years old, I’ve worn a wig to hide the fact that I was born with alopecia areata— an auto-immune disease that causes a drastic loss of hair on the scalp, face, and body. And during that time, I allowed myself to be embarrassed, ashamed, and fearful of being exposed as the bald black girl. So, I hid it. But it was more than just hiding: it was what I felt necessary to fit in, to feel comfortable, to be accepted. I know there’s nothing wrong with wanting to appear like everyone else, it’s natural to want these things—especially for my then pre-teen self. In fact, those are still the motivations that determine why I wear wigs now: they neutralize me and I enjoy the way I look with hair. But there was an additional problem: wigs caused me to feel complete; surprisingly enough, not as a black girl, but as a person in general. 

For most of my early adult years, I failed to feel like a whole black woman. As if I were sorta-kinda a black woman. As if I lacked the necessary experience to align myself with the beauty that I see in all of the black women who exist in my world. Partially, it was due to the fact that I allowed myself to function as an outsider.

My auto-immune disease once controlled me. From turning down sleepovers because of the dreaded ‘let’s play with each other’s hair’ scenario, to deciding that dancing wasn’t the life for me because of the anxiety I experienced about uniformed hairstyles and the security of my hairpiece on my head. I allowed my differences to become a nuisance to my everyday life. I allowed myself to live in the fear of being exposed; of being mocked and taunted; of being my true self.

I was mocked and taunted, in fact. Some of the experiences I had in middle school -- when they would laugh about me in large groups, call me names behind my back, or even try to pull off my wig --  are some of the worst memories of my life. But we were all children, curious and indifferent. I don’t hate anyone for some of the things that were said and done to me, but I'm not about to try and meet up with the assailants for coffee or anything.

Around the time I decided to begin telling my close friends and intimate partners about my disease, I was 19 years old and it was the best thing I could have ever done for myself. From one a-hole hysterically laughing (before apologizing—um, too late) to another totally and completely not giving a f*ck, t o another offering up home remedies, I found out what I both can and can’t tolerate as far as humor and sincerity about my identity. I am not my hair, but I certainly am who I am because of it. 

Alopecia is not a disease that is often talked about. In fact, there are literally zero celebrities who have ever confessed to having it (although many have been speculated). Still, there are approximately 6.8 million people in the United States who deal with its emotional, psychological, and sometimes physical effects. Although little is known about it, I know that mine is hereditary: I have three family members who suffer from it. Others may develop the disease over time, or even as a reaction to damage to the scalp. I used to champion my struggle of having alopecia for my entire 27 years, over others who may have developed it later in life (as if there’s ever a true winner in the struggle Olympics and the prize wouldn’t be some janky ass hair growth pill)— but we’re all growing here, right? In truth, whichever way you develop it, it’s a traumatic experience and can be a major blow to the ego and self-esteem.

Luckily, I’ve always been lifted in love and support since my birth, beginning with my mother to my extended family, spanning the sea of friends and (most) past-lovers whom I’ve confided in.

Particularly today, with primarily black girls and women legally fighting for their right to wear their hair in its natural state, there’s still a longing for that experience that I may never be able to get. And I’m fine with that. But what I’ve come to find about myself, and about the truth of physically appearing different than others, is that there is never a reason to remain hidden about the true and deep aspects of yourself. Even if they make you uncomfortable, or will cause you to lose a lover, or even temporarily lose yourself... Feeling complete should never come from the false ideal of conformity, but from setting yourself apart from everyone else by declaring your differences. 

For years, I’ve debated writing and publishing this piece because I thought it would cause attention to me that I fear, that it would open up the space for people to inquire about things that I’d prefer them not to, that it would assist in other’s opinions about who they think they know me to be. What I’ve come to learn is that these differences, these alternate experiences, this unique disease I’ve always thought of as a hindrance to my gifts, has always been the hidden gem that’s set me apart from my peers in more ways than one. It’s my personal magic.

This one’s for all the alopecian girls who cried in the mirror on a really bad wig day. Jazzi cares, if don’t nobody else care.

To stay informed about the forthcoming Black Girl Bald mini-doc series, sign up here.

[Photo: Curtis Bryant Photography]

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