Female Alopecia Patients Speak Out on their Hair Loss

by Alexandra Kilpatrick

When it comes to prom, most teenage girls focus on details like the perfect dress and accessories, but for alopecia patient Jennifer DeFreece, she remembers one simple detail.

“I just wanted eyebrows for my prom pictures,” DeFreece, now 33, recalled to CNN.

DeFreece was diagnosed with alopecia totalis when she was just a baby. The autoimmune disease caused her to lose all of her hair by her first birthday.

“I was like Charlie Brown,” the Northridge, California resident told CNN.

The nondiscriminatory disease can occur in men and women at any age and while the symptoms are strictly physical, sufferers claim that it tends to destroy the spirit, evoking an emotional toll on patients in the face of silky shampoo commercials.

Female sufferers have a unique experience with the disease, especially those who self-identify with their hair color and style. These women learn to manage the disease and choose a way to self-present, whether it’s with a wig, no wig, clean shaven or a mix of each, rather than letting the disease define them.

DeFreece herself chose to wear wigs in kindergarten when her innocent comrades began questioning her without restraint and continued wearing them through junior high, when she began feeling more self-conscious and hyperaware of what distinguished her from her peers.

“I hated it,” DeFreece admitted to CNN. “I would wish that my hair would grow back.”

After realizing that people would make fun of her anyway, DeFreece made a leap when she decided to ditch the wig and embrace her baldness.

“I thought, ‘Let them make fun of somebody with a medical condition, let’s see what happens,’” DeFreece told CNN. Her colleagues’ reaction was mature, as they began to back off and even stand up for her.

Learning to value yourself

A big part of coping with alopecia is “learning to value yourself for who you are, not for how much hair you have or don’t have,” according to the National Institute of Arthritis and Musculoskeletal and Skin Diseases.

Psychology lecturer Sue McCale at England’s Sheffield Hallam University extensively researched alopecia’s psychological toll and co-authored the book, “Coping with Alopecia.”

“Baldness, for whatever reason, is associated firstly with aging and secondly with illness,” McHale told CNN. “So society is automatically shocked or fearful of this.”

McHale’s husband and co-researcher Nigel Hunt suffers from the rarest form, alopecia universalis, which causes total loss of body hair. The most common form is alopecia areata, which results in patchy hair loss. McHale and her husband began their research when they realized there was barely any psychological research on the condition.

“It opened up a floodgate of responses and many said that they felt no one had been listening to them for years,” McHale revealed to CNN.

Their research found that there was a perception from both men and women that the disease was emotionally worse for women, since it seemed more acceptable for men to appear bald. Nonetheless, neither male nor female alopecia patients opt to go bald.

“It is forced upon them, so in that way, they respond to it very much in the same way,” McHale commented to CNN.

Both balding patients and those born bald can experience embarrassment and hope for a quick fix, while wig wearers often fear that others will discover that their hair is not their own.

She found someone who didn’t care about hair

Twenty-nine-year-old Lauren Crawford tackled that fear during a first date in high school. Her previous dates hadn’t handled her condition well, so she simply laid in on the table on the first date and warned him that she had to make a confession.

“‘If you want to walk out the door, that’s OK,’” Crawford recalls saying before revealing her alopecia.

“Oh thank God,” her date responded after her confession. “That’s it?!”

Crawford and her high school date have now been married for five years.

Like DeFreece, Crawford received her diagnosis early in life, at age 3, but didn’t see the serious physical and psychological aspects of the disease until her senior year of high school.

“I didn’t think anything of it,” Crawford commented to CNN. Her grandmother was undergoing chemotherapy at the time, so seeing a bald woman was not out of the ordinary for her.

Her hairline changed rapidly in her teen years and she began wearing scrunchies, scarves and finally wigs to hide her condition. Her peers even began calling her “baldy” and tugging at her hair and she admits feeling as though she would never get married or have children. She now has both as well as an unexpected career as a hairdresser.

“I always had a creative eye for hair; I was always creative in hiding my bald spots,” Crawford recalled to CNN.

Since becoming a hairdresser, she has also become an ally for other women experiencing hair loss. She recounts helping a woman who came in heartbroken after chemotherapy led to a bald scalp. Crawford took off her wig and showed her own bare scalp to the woman. They wept and talked through the hair loss.

“It’s just hair,” Crawford remembers telling the woman.

‘For me to walk out bald, it’s so hard’

Thirty-year-old Vanessa McWilliams of Calgary is currently transitioning from wearing wigs to embracing her baldness after wearing wigs for more than 20 years.

“I love who I am, but at the same time, for me to walk out bald, it’s so hard because there’s so much trauma growing up,” she told CNN, recounting being called “baldy” during her formative teenage years.

McWilliams now has to adapt to occasionally being approached by strangers because they think she’s sick.

“You’re healthy! There’s nothing wrong with you, but society still has to look at you,” McWilliams explained to CNN. “It’s so hard to hear there’s nothing wrong with you. The mentality of it is still a mental battle. It’s really tricky.”

Unlike DeFreece and Crawford, McWilliams did not receive her alopecia diagnosis until adolescence.

“From the date that I found my first bald spot (at age 9) until I was 17, I had a really big hatred for the word ‘alopecia’ and everything that it put me through,” she told CNN.

McWilliams currently operates mobile wig boutique Confident Curls, specifically aimed at women coping with hair loss. She realized that she lives with the condition every day and therefore knows firsthand what women in the same situation need, physically and emotionally.

“I wish at 9 years old I had known that it was OK,” McWilliams commented to CNN. “It’s so simple… Everyone is dealt something they have to struggle with. Now I know it isn’t the worst thing that could happen to me.”

DeFreece calls her less-than-pretty-feeling days “an alopecia day” but admits there are benefits to her condition.

“People will always remember you and you can use that as an advantage,” DeFreece told CNN.

DeFreece has met a network of women with her condition through organizations like the National Alopecia Areata Foundation, whose annual conference she attends every year, as well as social media, which has helped her cope. When she and these women get together, their baldness doesn’t define them as it does to others.

“I’m not just Jennifer the bald girl,” DeFreece explained to CNN. “I’m Jennifer the marketing major. I’m Jennifer from California.”

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