My BFF has alopecia and it helped her find the best hair of her life
Ali Hoffman has had alopecia for 17 years—and I had no idea for the 13 years I’ve known her. Alopecia is a condition that causes the immune system to attack hair follicles, which is where hair growth starts. More specifically, Ali has alopecia areata, which means she loses hair in patches.
Ali has always done such an incredible job covering up bald spots, and sometimes she never had any at all (alopecia areata can be manifest sporadically, and Ali went through periods with thick, gorgeous hair). I only found out recently when, over the course of two months, Ali had a flare-up that caused her to lose 70% of her hair. After a major freak-out, she decided to take back control by shaving her head, getting fitted for a realistic-looking wig and hoping nobody would notice.
But that’s only the beginning.
Ali realized she’d been hindering her ability to live stress-free over her hair for the last 17 years. That’s almost two decades. She wondered why she hadn’t done this sooner. She started to incorporate more wigs into her repertoire—being a long-haired blonde today, and a short-haired blonde with a more caramel tone tomorrow.
She was so relieved and liberated by her newfound wig regimen she decided it wasn’t worth keeping it a secret any longer, so she addressed it head on with a very vulnerable Facebook post. The response was insane.
After struggling all her life with Alopecia, she finally set herself free.
Having gone from hiding her condition, which she now calls a very “small part” of herself, to feeling totally “badass”— bald or wigged out—she found the most important way to break the stigma was to stand tall and let others know the truth so they could stop wondering or coming up with their own false stories. Ali learned to stop hiding her real self. It has helped her to become a stronger woman and “give far fewer fucks about other people’s judgement.”
And no, not all days are amazing. “To be honest, going to an LA hot yoga class in a turban kind of sucks, but situations like that have forced me to get comfortable in my own skin,” she admits. But that’s life — the good days, the bad days and the motivation to move forward.
Ali’s story is for anyone in a similar situation, yes, but it’s also a reminder to everyone to put things into perspective: to be grateful for your health and don’t let things that don’t sacrifice your health deter you from this appreciation.
It’s also a great reminder to empower other people to be badass in their skin, with or without hair, with no clothes or funky clothes, with a face full of makeup or totally bare-faced. Own yourself: your good, your challenges and everything in between.
There’s so much inspiration to be had in Ali’s story, so I sat down with her to talk in-depth about her experience.
Alexa Erickson: Tell me about the first time you found out about your diagnosis with alopecia. How did you react?
Ali Hoffman: I was around 10. My mom was braiding my hair and found that patches around the hairline were missing. I think she freaked out a bit because she didn’t know what was going on. We went to the first of many doctors and he diagnosed me with alopecia areata (which means that I generally lose patches of hair, as opposed to alopecia totalis or universalis where you lose all the hair on your head and whole body, respectively).
My mom and I both remember this first doctor especially was pretty rude and dismissive! I was a little bummed and confused, but it was easily hidden at that point and I remember acknowledging that at least it was just a cosmetic issue. I do know that hiding it from such a young age became a ritual that was really hard to break. I didn’t tell anyone outside my family.
AE: From then on, do you have any standout years or phases in your life your alopecia was particularly bad?
AH: Oh, there have been several. For me, stress triggers my alopecia. I have chronic anxiety, so it’s a frustrating combo! During middle school and high school, I lost patches here and there when I was stressed out about boys, school, etc. I’d maybe go through a year or so where I couldn’t wear a ponytail, but it wasn’t a huge deal. During these years, I got steroid injections in the affected areas once a year or so (which could be around 30 to 40 shots at a time, FUN!)
College and the first years post-college are when I experienced the first episodes of losing a lot of hair at a time, but I learned to hide it like a master. I noticed that large areas of hair loss would correlate with big life events like a breakup, or even exciting things like studying abroad. I experimented with a topical treatment meant to induce an allergic reaction (that didn’t go well) and then I found a wonderful doctor in NYC to administer monthly steroid injections, which worked for a while.
When I made the decision to uproot my life and move to LA, I lost maybe a third of my hair, all over my head, and accepted for the first time that I might need to look into other solutions, like wigs. This was the hardest episode of alopecia as it became harder and harder to hide.
A coworker asked me, in front of my whole team, why I had a bald spot and it was one of the worst, most humiliating moments of my life.
I also was forced to “come out” to my very supportive, newish-at-the-time boyfriend. My doctor hit me hard with super strong injections and the hair all grew back—only to fall out again about a year into living in LA. It was at that point, after losing about most of my hair, I decided it was time to make a change.
AE: What were your biggest insecurities?
AH: Well, the most obvious thing is that like most humans, I care about how I look! Hair is such a silly surface thing, but it’s also a symbol of beauty and sexuality and it’s hard to feel like a sexy, confident woman without it. When my hair was patchy and thinning, I looked sick; I avoided looking at myself because it freaked me out.
On another level, I hid this imperfection for 17 years and when you do that, shame starts to surround it.
In general, I can get a little fixated on perfection, and I felt like it was this dark area of vulnerability that made me less valuable as a woman, as ridiculous as that may sound.
AE: What are your thoughts on the stigma of a woman being bald or having thin hair? Why does that stigma exists in society?
AH: Having nice thick hair is a biological signifier that a woman is healthy or fertile just like having glowing skin or boobs or anything else like that, so we’re conditioned to be turned off by a woman with thin hair or losing hair because it looks like she’s infertile or sick. So I think it comes from that. In modern day, we just associate it with womanliness.
AE: Did this societal stigma initiate any fears when your flare-up occurred?
AH: The last year or two, when the alopecia was bad, I was constantly afraid that someone would notice it and see me differently: not as cool, not as “together,” not as pretty. I had attached so much shame in my mind to it that I couldn’t even imagine exposing this small part of myself.
Even though I have a loving, supportive partner, I had a lot of fear about what his reaction would be to having a bald girlfriend. It has been an adjustment that’s still ongoing, but that’s mostly been on my end about being confident enough to be my normal self.
AE: Fast forward to 2017 when you had a breakthrough to shave your head. What triggered this? What thoughts were going through your head?
AH: I had lost a lot of my hair and a doctor told me he thought I was past the point for steroids because he’d basically have to inject my whole head. I cried a lot, then started to do some research about wigs, head wraps, etc. that I had been too in denial to do before. My mom happened to be visiting so she came with me to a magical wig genius who also has alopecia and who was extremely informative. She fit me for an incredible wig and confirmed that I had lost 70% of my hair. She told me that wearing the wig over a shaved head was more comfortable but I didn’t feel ready, so I wore it over what little hair I had at first.
Wearing the wig in public for the first time was nerve-wracking for me. I wore it to a party and was paranoid the whole time. Then I wore it to work which was hard, but turns out people don’t really stare at other people’s hair that much! And the wig is amazing! A few people just asked me if I had gotten extensions. I was still losing clumps of hair every day, though, and it just became more and more depressing. I thought about it a lot and finally just said “fuck it” and shaved it all off. It was scary and emotional, but I instantly felt more like myself than I had in a long time. I had told my boyfriend before shaving that I would never let him see my bald head, but I felt like I looked powerful and badass and immediately showed him.
AE: How did it feel to go public with your health issue?
AH: Over the first few weeks I just told a few friends, then I learned how to go to yoga class bald (I’ve been wearing a funky head wrap), go to the beach (floppy sun hat or cheap, casual wig under a hat) get a massage (go bald) or have sex (you just do it—it’s the same). I also got another fun, daring wig with BANGS! All these little steps have made me feel strong and supported.
After worrying all the time about if people could tell I was wearing a wig or wondering why I was wearing a headscarf, I decided to post on social media about my situation. The reaction was overwhelmingly kind and I felt so good afterwards. My mom told me that lots of unexpected people from my hometown reached out to her as well with kind words.
AE: What do you hope your story can teach others?
AH: Especially with social media, it’s easy to present an image of perfection to the world, when in reality no one is perfect and everyone has something they are ashamed of or feel insecure about. I think we need to encourage each other to be a little more vulnerable about our flaws.
I wish I had known how much better I’d feel after embracing something that I hated and fought against for so long. Accepting this little, trivial imperfection has made me feel more whole, and I hope others can take my story as one vote for self-acceptance.
*Personal photos were provided by Ali Hoffman.