Alopecia: Why Hair Isn't 'Just Hair' to Black Folk

There’s been a lot of conversation recently about alopecia in mainstream media. As a Black woman who has a strong genetic link to alopecia, I have a lot of mixed feelings, as I’m happy people are finally talking about alopecia since it’s very common in the Black community, but I’m unhappy to see how much misinformation is out there about the condition and how little people know about how race interferes with both having and managing the condition. 

For Black folk, our hair is everything, so this is important. 

Let’s break this down:

What is alopecia?

Alopecia is a non-contagious autoimmune disease that can cause hair loss due to the body targeting and damaging its own hair follicles. It can create hair loss anywhere on the body, and while it can sometimes grow back, it’s not guaranteed to. 

According to the American Academy of Dermatology Association, there are three main types of alopecia:

• Alopecia areata
• Alopecia totalis
• Alopecia universalis

Alopecia areata is a patchy baldness that can happen anywhere hair grows, such as the scalp, eyebrows, facial area, etc. Alopecia totalis causes complete baldness of the scalp. The rarest of all the alopecia subtypes is Alopecia universalis. That leaves the entire body hairless and bald.

The main (and usually only) symptom of alopecia is hair loss, although the patterns of hair loss may shift. Sometimes there may be more or less hair loss depending on the time of the season, and the hair can even grow back in some spots only to then come out in others.

The National Alopecia Areata Association reports that “6.8 million people in the United States and 147 million worldwide have or will develop alopecia areata at some point in their lives.”

That being said, alopecia is one of the top five conditions impacting the Black community, representing 8.3% of our dermatology visits.

A very very very short (and somewhat personal) history of Black hair

Hair is not, and has never been just hair to Black people. I’ll say that again in a bit.

Before Africans were enslaved as a part of the transatlantic slave trade, hair served as a means of telling people’s social rank and role in society. Hairstyles were unique and specified down to tribes, health statuses, jobs, and more. Hair told a social story, baked in tradition and culture.

When the transatlantic slave trade devastated parts of Africa and the lives that it touched, the enslaved Africans were forced to negate those traditions. Hair took a new meaning, except the ones defining that meaning were the white Europeans and colonists. They compared Black hair to that of an animal, as a means to degrade and strip us away from our pride and history. 

At times, we tried to find new ways to embrace our hair, but due to the hypersexualization of Black women, there were laws put in place to force Black women to hide their hair (The Tignon Laws) as to not attract white men, which would threaten the status quo for white women. Even then, we did our best to adapt by embracing self-love, but many of us were forced instead to assimilate in order to survive. 

With centuries worth of negative tropes and stereotypes surrounding Black hair, Black folk resorted to pressing our hair out (anyone else getting flashbacks to the hot comb the night before Christmas or Easter?) because if we didn’t, we ran the risk of being denied jobs, loans, or y’know, just in general being treated worse. 

Our livelihood became intrinsically linked with how straight we could get our kinks and coils. Permanent chemical relaxers, which have been linked to fibroids, became a norm for Black women. So much so, I was permed at age 6 (way too young) and continued to be well into my adolescence and teenage years. I assumed that that’s just what Black folk did with our hair and that our natural hair was bad and ugly and that’s why. I remember my grandmother laying my edges with the thick cream that burned my scalp, telling me how we had to get my hair to “hang” and swish back and forth, something our hair doesn’t naturally do at all, unlike Eurocentric hair. 

Like many people, I wasn’t introduced to my natural hair until I was 18 years old, when I had to learn how to take care of it. I had people criticizing me, telling me that it’d stop me from getting jobs and opportunities, made me uglier, and some people even called me names — but I stood strong and kept it. I eventually learned to love parts of myself and my Blackness that I never loved before I went natural because I had to take extra time and care and really learn my hair in ways I never did before. However, no matter how much you love your hair, it doesn’t change the fact that I’d be wearing my 4A/4B kinky coils in a white supremacist society that favors either looser curls or no curls, to begin with. You can’t self-love your way out of racism. That’s why just now in 2022, the house of representatives passed “The Crown Act,” a law prohibiting race-based hair discrimination. 

One of the “fun” parts is that Black people have been and are ridiculed for their hair regardless of what state they wear it in. We get degraded for wearing our natural hair, but then if we permanently straighten our hair we are seen as self-hating. Countless jokes and memes on the internet surround Black people wearing weaves and wigs, only for the same techniques to be stolen and appropriated. We can’t win, and society doesn’t want us to feel pride in our hair for racial and capitalistic reasons (the Black hair industry is only a trillion-dollar industry). 

To take care of and love your hair as a Black person is a revolutionary act within itself due to how white western society has treated our hair, to the extent that they’ve instilled self-hatred for the unprocessed hair that grows out of our own head. Loving your natural hair shouldn’t be seen as revolutionary, but here we are.

How racism impacts Black folk with alopecia

Two things I want to drive home:

• Black people, especially Black women, have been discriminated against and degraded for their hair so badly that it’s caused forms of generational internalized self-hate. Black hair is everything to a lot of Black folk.
• Alopecia is an autoimmune disease that a large portion of Black folks have, and while it can be treated, it still causes what can be severe hair loss.

There have been few studies done on alopecia as far as the epidemiology of the disease. Obviously, I can’t make a blanket statement, but it’s highly coincidental that a disease that disproportionately impacts Black people has few studies done in comparison to other skin-based diseases. The less research there’s been done, the fewer people (read: Black people) know about a condition that so largely impacts them. 

When Black people, especially women, lose their hair, they’re losing something much larger. Our hair has been a central part of our identities for hundreds of years, whether the narrative was one that we controlled or not. When so much is at stake socially, politically, and internally, all because of how we decide to style our hair, what happens when we lose it?

We’re stripped of our history, culture, and even identity.

In an ideal world, this all changes. More research is done, we learn more about a disease that our mothers, aunts, and grandparents have experienced, and the lens that the western Eurocentric world looks through when it comes to Black hair is dismantled and shattered. However, that’s not where we are. 

When a Black person speaks up on their experience with alopecia, it’s imperative that we listen. When jokes are made, no matter how “well-meaning” they may be, they’re still ableist and wrong. 

It’s time we educate ourselves on the realities of the disease and how they impact a group of people whose cultural history and identity is so tangled up in their kinks and coils. It’s because of racism not many studies are done, and extra emphasis is put on Black women when we lose our hair due to alopecia. That’s our now, but it doesn’t have to be our tomorrow. 

Hair isn’t just hair for Black folk. Never has been, but maybe hopefully someday it will be.