Author Helen Phillips On Living With Alopecia

Helen Phillips is the author of four books, a professor of creative writing at Brooklyn College, writes for The Atlantic and The New York Times and is the recipient of several awards. She’s also bald.

“People assume that my baldness is a fashion choice… or that I am in treatment for cancer,” Helen tells me from her home in Brooklyn, where she lives with her husband, artist Adam Douglas Thompson, and their two children. Helen and I are supposed to be discussing the UK release of her brilliantly weird and wonderful dystopian book, The Beautiful Bureaucrat. Instead, we are talking about the YouTube video in which Helen eloquently explains why she decided to stop wearing scarves on her head the same week that her debut story collection, And Yet They Were Happy, came out in 2011.

“When my book was published, I felt so emotionally exposed in my writing that it seemed absurd to keep covering myself up physically,” she explains, when I ask her why she chose that particular occasion. “I had been moving in that direction, sometimes going to parties bald, but it was a moment of great liberation when I finally put my scarves away for good.”

Helen has alopecia universalis, the rarest and most severe form of alopecia. The auto-immune disease results in total hair loss across the scalp and body. Despite the fact that approximately 1 million people in the UK suffer with alopecia at some point in their life, Helen tells me that she has met a lot of people who simply don’t know that it exists. “It seems to me that it might be easier for people with alopecia if the condition were better known so that they didn’t feel responsible for educating people about it along the way, and so that people would be less likely to jump to incorrect assumptions,” she says.

Helen suffered hair loss as early as 6 or 7 but it wasn’t until she was 11 that her hair stopped growing back. “My hair fell out in earnest over the course of several months: on the pillow, in the shower, like a nightmare. Eventually, I lost even my eyebrows and eyelashes,” she recalls. For many years, she wore wigs to school. When I ask her if it was ever suggested to her that she go to class bald, she explains that it never felt like an option: “It didn’t even occur to me or my family back then. The instinct was to cover, hide and blend in.”

Having alopecia as a teenager made Helen feel like “even more of a freak than every teenager already feels.” She felt “marked in this dramatic and creepy physical way” and admits that it was very lonely. “I lived as though I had a huge secret, though in retrospect I assume many of my peers realised I wore wigs,” she muses. Besides the emotional and psychological implications of losing your hair at such a formative age, Helen found that it was physically uncomfortable, too: “I ran four years of varsity cross-country in a wig – I don't recommend that,” she laughs.

It was during these years that Helen found solace in writing. She tells me she’s not sure she’d be a writer now if she hadn’t had the experience. “A couple of years into my baldness, I made a New Year's Resolution to write a poem a day, a practice I continued for eight years,” she says. Helen discovered she could be completely herself on paper, “exploring and liberating my own inner life,” even if she didn't feel liberated on the outside. That feeling didn’t come until years later, with the release of her first book.

“The biggest challenge for me was overcoming my own anxiety about how people would react to my baldness,” says Helen of the decision to stop wearing headscarves. “I anticipated a lot more teasing and cruelty than I ever encountered,” she admits, adding that she has experienced virtually none.

Once Helen made the decision, it didn’t take long for her to adjust. “To be honest, it took about two blocks,” she laughs. “I walked down the street and no one reacted. I had built it up so much in my mind, but it was no big deal. Now when I’m out and I notice people staring, it takes me a second to remember why they’re looking at me.”

Her friends and family took it in their stride, too. “The most remarkable thing about my transition was how unremarkable it was. Then again, I do live in New York City, where anything goes. A bald woman is rarely the oddest thing a New Yorker sees on any given day!”

It has been almost seven years since Helen stopped covering up her scalp and when I ask her how she feels about it now, she tells me that, “at this point, I love basically everything” about being bald. She loves the ease of identifying herself as “the bald woman” when arranging to meet someone new. She loves the powerful feeling of looking different and embracing that every time she walks down the street. “I love not having to fret about washing or styling hair. I love how cool I stay in the summer. I love looking like a futuristic alien. And I love that I have the opportunity to teach my kids and their friends about difference in terms of physical appearance.”

Helen no longer has any interest in having hair. “I’ve even had nightmares about my hair growing back,” she laughs. “We associate hair with femininity so much that to be a bald woman is to fight an uphill battle in terms of feeling conventionally ‘beautiful’ in our society, so imagine how liberating it is to stop aiming for conventional beauty!” When I ask her if she has any final words of wisdom for young women who may be struggling to come to terms with their own alopecia, she offers these: “What I would say is this: the world is kinder than you might think. Embrace your strange and unique beauty, and those you encounter will embrace it too.”