Shining a Light on the Emotional Toll of Alopecia Hair Loss

Shining a Light on the Emotional Toll of Alopecia Hair Loss

Our hair is a big part of our identity. And hair loss, unfortunately, can create emotional and social issues for those who suffer from it.

Alopecia, or hair loss, has a variety of causes and severity levels and often strong emotional connotations as well. In Chicago, local professionals are taking a deeper look not only at the condition itself, but also at its emotional toll on women.

“Alopecia is an underserved group of disorders in my field. There are no quick fixes with alopecia no matter what type you have. Just not getting worse can be a success,” says Maria L. Colavincenzo, MD, an assistant professor of dermatology and residency program director at Northwestern University Feinberg School of Medicine.

Sometimes, she adds, the condition is not taken seriously by medical professionals, despite its potential psychological effects. “There is this whole social-emotional division of health that is so crucial to people’s quality of life. Someone can be deeply impacted by an alopecia diagnosis. It’s important to recognize that,” says Colavincenzo, who oversees Northwestern’s specialty clinic in alopecia.

But while alopecia is as likely to affect women as men, female hair loss isn’t quite as well accepted.

“It’s not socially accepted for women to have thinning hair or hair loss,” Colavincenzo says. “Women can feel like there’s something wrong with them.” She notes that about 80 percent of the patients who come to see her about their hair loss are women.

There are several types of alopecia, with different effects. Androgenetic alopecia, or pattern hair loss, is genetically predetermined and affects up to 50 percent of men and women. While much more rare, alopecia can also be caused by autoimmune disorders, such as cicatricial alopecia. This type of alopecia causes the hair follicle to break and scar the scalp, while another type, alopecia areata, causes hair to fall out in round patches.

“Just a little bit of hair loss can be devasting to women. It’s part of our sociocultural construct. Wealth is placed on physical features and hair is right up there, more than people expect,” Colavincenzo says.

Putting alopecia in the spotlight

That assessment became apparent to Katy Osborn, Jenny Alberti and Andrea Alberti, three sisters who run Amelia Street Studio, a creative agency in Chicago. The trio are working on a documentary on the effects of hair loss on women called Head to Head.

Hair loss is a secret that’s pretty guarded.”

While the film was inspired by one of their clients, Margot Greer, a breast cancer survivor and the owner of Woven Hair Co., an ethically sourced hair company, the topic hits close to home for the sisters. Director Andrea Alberti has had alopecia areata since she was a child. As a preteen, Alberti lost all of her hair.

“It was a no brainer to start this project. It’s been like therapy for me,” Alberti says. “It’s allowed me to accept where I am at in my life. I don’t have to feel bad.”

Executive producer Katy Osborn adds that not only has the film given her insight into the struggles women with alopecia have to endure, but it’s given her a window into why her sister is the way she is.

“I never realized how much I take my hair for granted,” Osborn says. “Hair loss is a secret that’s pretty guarded.”

Finding strength

Head to Head shines light on the stories of several women suffering from hair loss, including 26-year old Jillian Guberman, who was diagnosed with androgenetic alopecia in college.

“[I felt] pure hopelessness. Being told by the doctor that alopecia will be something I’m going to have to endure for the rest of my life really took the wind out of my sails,” Guberman says. “[I wondered whether I] would ever feel confident again. Pretty? Feminine?”

Guberman says that up until her diagnosis, she didn’t know anyone who had alopecia. So early on she turned to the internet for more information.

“During the first few years, I sought refuge in the small online presence there was through alopecia blogs and forums. Not having the courage at the time to put myself out there digitally or physically, I took comfort in the few posts I’d come across from women of all ages going through similar struggles, and I tried to gather as much information and advice as possible on how to cope and not live a life in fear of the inevitable,” she says.

Support groups and resources are important, Colavincenzo says. Seeking out help or a listening ear can be beneficial. Hair loss is not life-threatening, but it’s not trivial either.

“People do not die from alopecia and, because of that, many question themselves when they want to seek out help or support,” Colavincenzo says. “I’ve had patients ask, ‘Does it make me vain that I’m bothered by losing my hair?’ My response to that is that it’s okay to take care of yourself physically, mentally and emotionally.”

Guberman says she found solace in exercise, building a support system and putting her life back together. “Over the years, I have learned how to not let alopecia control, consume or define me. One of the scariest things I ever did was shave my head. One of the second scariest things I did, and am continuing to do, is learn how to love myself again. It’s an ongoing work in progress, but I’m taking major steps in putting myself out there and finally starting to open up to the world piece by piece.”


A preview and live crowdfunding event for Head to Head is set for August 23 at Colvin House, 5940 N. Sheridan Road, Chicago. For more information, visit ameliastreetstudio.com/headtohead

Photo courtesy of Amelia Street Studios.

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