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The Invisible Toll of Hair Loss and Alopecia

On March 14, a 12-year-old girl from Elkhart, Indiana, died by suicide after being bullied for having alopecia. Her name was Rio Allred. “She loved art, reading, band, camping, kayaking, [and] playing video games,” per a memorial fundraiser started by her family (GoFundMe). She was “charismatic” and “smart” and was known to “root for the underdog and to stand up for what is right.” A week following her death, students from her school walked out to protest the school’s handling of bullying (WNDU). Some of Rio’s classmates ripped the wig she wore off in front of the class. She was struck in the head simply for not having hair. Despite attempts to get the school to address the bullying within the first few weeks of school, Rio was forced to endure attacks by classmates with little to no administrative intervention (WNDU). 

Alopecia is the medical term for baldness or hair loss. There are different types with varying severity and causes. One of the most common forms, alopecia areata, is an autoimmune disease that occurs when the immune system attacks hair follicles, resulting in hair loss (National Alopecia Areata Association). 

TAKE ACTION

• Follow PsychoHairapy, a mental health and hair movement redefining how we look, talk, and care for hair.

• Donate to organizations like Hair 2 U, Hair We Share, or Wigs By Tiffani providing free wigs to people experiencing medically induced hair loss.

• Demand your representatives to support Wigs as Durable Medical Equipment Act, which ensures Medicare covers the cost of medical wigs for cancer patients and people with alopecia areata.

Public figures like actresses Viola Davis, Jada Pinkett Smith, and Congressperson Ayanna Pressley have been vocal about their struggles with the condition and the shame surrounding it (Buzzfeed). While most with the disease are considered healthy, alopecia-related stigma and society’s emphasis on hair, specifically for women, play significant roles in the emotional trauma of those with alopecia. 

“How I show up in the world as a bald Black woman is disruptive for many people,” Pressley said in an interview (Washington Post). “It challenges conventional and societal norms of what is professional, of what is pretty, what is feminine, what is acceptable, and that is‑‑you know, some days are harder than others. And so, as I said, I have freed myself of the secret, but I have not freed myself from the shame.”

Affecting about 6.8 million people in the U.S. and 147 million globally, alopecia areata is unpredictable. Genetics does play a role, but it’s not the only determinant. For some, the hair regrows but might be followed by episodes of hair loss. Yet, some have permanent hair loss. Those with alopecia areata might have comorbidities including lupus, thyroid disease, atopic conditions like asthma, and mental health problems (NAAF). However, having alopecia doesn’t automatically predispose you to or indicate an underlying condition. 

Alopecia is often downplayed as a cosmetic issue as it’s not “medically disabling,” but people with alopecia describe how emotionally, mentally, physically, and financially debilitating it can be (NAAFJAMA Dermatol). Some might experience clumps of hair falling out in the shower or the hairbrush, leading to round patches on the scalp. As a result, people with alopecia might shave their heads. 

One study researching public perceptions of people with alopecia found that those with severe hair loss were seen as sick and contagious, unattractive, unintelligent, and dirty. This stigma also extended to the workplace, with some saying they would not be comfortable hiring someone for a job with severe hair loss. The isolation and shame experienced by those with the condition are caused by societal discrimination, not biology. Though there is no cure for alopecia, some people opt for wigs or invasive treatments to deal with alopecia and hair loss stigma. Depending on the route, a person can spend approximately $50 – $10,000 to conceal or manage their condition (Allure). The price doesn’t factor in yearly maintenance or the emotional cost doled out in therapy or counseling. 

Hair loss, generally, can cause “psychological distress.” One in 12 cancer patients refuses or delays potentially life-saving chemotherapy because of the risk of losing their hair (Daily Mail).

Part of the hair loss and alopecia stigma has to do with hair’s significance in society. Hair is a multibillion-dollar industry that has been integral to individual and group identities for centuries (Statista). Hair and hairstyles have historically been used to determine, at a glance, someone’s religious background, social status, gender, health, sexuality, and politics, as seen with social and cultural movements like the hippies, skinheads, and the Black Panthers (British Journal of Sociology). Males are often expected to have short hair, while longer hair on women signifies femininity. To serve in war or hold jobs, women historically disguised themselves as men by cutting or concealing their hair. Women’s heads were also shaved as punishment for sexual misconduct. Today, a buzz cut or big chop can express a redefinition of femininity away from the traditional male gaze and European white beauty standards (Huffington PostVICERefinery 29).

In the Black community, hair has been used to showcase survival and empowerment (BBC) because it’s been leverage systemically used to subdue, assimilate, and humiliate Black women since slavery. Then, the Tignon Laws required freed and enslaved Black women in Lousiana to wear a tignon, or scarf, over their hair to show that they were members of the slave caste (Bitch Media). Today, policing of Black hair has been used to enforce anti-Black beauty and professional standards and preserve white spaces by preventing children and adults from educational, social, and employment opportunities based on their hair. 

Hair loss and alopecia are highly stigmatized due to the social, cultural, and personal emphasis on hair. But buying wigs or other products to address it is disregarded as a vanity or a solution to a mere cosmetic problem. Aesthetic presentation is a source of pride and identity as well as a site of discrimination, isolation, and oppression. We need to ensure we can all get the safety, resources, and support to present ourselves to the world in the way we wish or need to and eradicate discrimination based on something as simple as appearance.


KEY TAKEAWAYS

• Alopecia areata is an autoimmune disease that is mentally, physically, and financially burdensome.

• Alopecia and hair loss stigma shames people with the condition into isolation. 

• Hair plays a pivotal role in individual and group identities. Women of color are often discriminated against because of their hair.

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