WASHINGTON — Shivonne Odom cried on her lunch break once she heard the news from her doctor that she had alopecia.
Odom first grew concerned about the possibility of having alopecia after her hairdresser became concerned about her scalp health while doing her hair. Odom’s hairdresser noticed a dime-sized portion of her hair in the crown area of her scalp was a different texture than other areas.
Odom went to multiple dermatologists and was misdiagnosed multiple times before a third dermatologist confirmed what Odom’s hairdresser suspected, which was that Odom was starting to experience alopecia.
However, the alopecia that Odom has, Central Centrifugal Cicatricial Alopecia (CCCA), is very prominent in Black women, according to the American Academy of Dermatology Association (AAD). CCCA can cause permanent hair loss and can begin in the center of the head and can expand over time, according to the AAD.
CCCA is attributed to be the most common type of scarring hair loss in Black women and it typically starts around middle age, according to AAD.
AAD also says it is recommended that people experiencing hair loss should see a board-certified dermatologist because hair loss can also be a sign of another medical condition or the need for more vitamins or iron.
Odom says when her scalp becomes inflamed, she experiences burning and itching, which are common symptoms of CCCA.
“My scalp feels like it’s on fire almost every day,” said Odom.
An alternative option for people who suffer from alopecia is wearing wigs, however, Odom describes her experience with head coverings as “cosmetic but it’s not therapeutic.”
“Even when I have on a head wrap or headscarf on it just feels like torture because it’s just no air [circulation]. It intensifies the flare-up. It intensifies the itching,” said Odom.
Odom believes that her past choices to have chemical hair relaxers and weaves played a large role in the severity of her alopecia. Although her alopecia is genetic, Odom says that taking care of your hair can impact your susceptibility to having it severely.
Unlike others, Odom is no longer able to go to regular hairdressers because of her condition. She now sees a trichologist who helps consult her for ways she can style her hair.
“I’ve done a lot of expensive treatments to maintain my hair. Most of these treatments are not covered by insurance,” said Odom.
Odom says one of her laser treatments that took place over a three to four-month period, which helped grow and maintain her hair, cost around $5,000. Time is another cost to her due to her various appointments consuming her schedule.
Odom said she contemplated doing virtual consultations with other dermatologists in other areas of the country because of her struggle to find a dermatologist that specialized in her type of alopecia, one that is mostly experienced by Black women.
Recent events from the Oscars have sparked up the conversation about alopecia and what those who have it experience.
Alopecia is a general term for hair loss or hair shedding, according to Dr. Sara Lamb, Assistant Professor of Dermatology at Johns Hopkins University & Dermatologist at Sibley Memorial Hospital.
There are many forms of alopecia and dermatologists divide them into two categories: scarring and non-scarring alopecia.
Scarring alopecia, she says, can be more permanent and more serious compared to non-scarring alopecia.
Dr. Lamb says that a sign of scarring alopecia appears to be an area where you cannot see the opening of a hair follicle and the area of skin where the hair would be growing appears very smooth and can be shiny. This is a sign that the hair follicle is scarred and can be very difficult to reverse.
Alongside the physical traumas of hair loss, there can be psychological ones as well. Beauty standards and the way people form their identities play a large part in the internalization of these experiences.
“Our hair is a large part of our physical identity, so I think a lot of patients feel very distressed about hair loss,” said Dr. Lamb.
Dr. Afiya Mbilishaka, Clinical Psychologist in Washington D.C. and New York says the psychological consequences of hair loss can be depression, social anxiety, and paranoia. It can reflect the grief process as if someone died.
“We live in an extremely appearance-dominated culture. When someone experiences hair loss it is a visible medical experience… Depending on how much someone’s appearance is integrated into someone’s identity, that can really scale how much pain they’re experiencing psychologically,” Dr. Mbilishaka said.
“Aesthetic trauma,” she says is a “deeply distressing or disturbing experience relating to beauty.”
This can come up in the context of colorism, texturism and even the fullness and density of the hair.
Dr. Mbilishaka says there are long-term memories of experiencing aesthetic traumas and it can be deeply triggering when hair loss occurs.
Black women, she states like to look good but “unfortunately we oftentimes are not determining what looks good, larger society does. Oftentimes there are white or western ideals of beauty that include long and straight hair. To transform this hair (making reference to her naturally curly hair) into long [and] straight hair can actually be quite damaging both emotionally and physically to the body.”
Black women spend more time, energy and money on hair, she says. History and culture are other elements of the conversation surrounding Black women and the relationship to hair, she describes.
According to data from a Nielsen article, 85.65% of the spending on ethnic hair and beauty aids is attributable to Black consumers.
“Our identities are basically an internalized and evolving story of self. It is the story we tell of who we are. Oftentimes we feel like we’re in control and the author of it but when it comes to hair loss we don’t have as much choice and control. We are forced to confront that loss,” said Dr. Mbilishaka.
Experiences can vary between those who have alopecia. There can be people who are not as severely impacted by hair loss and there are others, she says can feel suicidal or engage in other harmful things as a result of hair loss.
In short, it’s complicated to understand the way beauty standards have shaped the perspective and relationship Black women have with their hair. It is combined with intersectional pressures of gender and race roles placed upon by society.
“It’s complicated, right. In terms of situating our hair within this larger system of racism and sexism. The pressures that Black women feel are so multiplied when it comes to hair,” said Dr. Mbilishaka.
“Beauty calls for pain,” a phrase heard very often among women, but Odom has experienced it fully with her experience of alopecia. Odom says she heard that phrase often while growing up, but her trichologist and dermatologist helped her change and redefine her perspective of beauty.
Odom said the message they gave her was “your beauty is what you identify for yourself but also what’s manageable for you.”