As a kid in the ’90s, I dreamed of having the sleek, straight hair of Posh Spice or Rachel Green. But my hair had other ideas. It was wild, frizzy and far too thick to look normal on a small child ― a deeply unwanted homage to my Irish roots. My childhood diaries are populated by stick figures struggling to be free of monstrous brown cloaks consuming their heads.
My mom and grandmother hated the idea of me getting my hair cut, and in my early teens ― when I begged for straighteners ― they acted like I’d politely asked if they could pick me up some crack cocaine. But when I was 14, a friend straightened my hair, and my dad was so impressed with the transformation that he personally thanked her and took me on a covert trip to buy some ceramic straighteners.
My relationship with my hair had always been complicated, but at 17, I was diagnosed with alopecia areata ― an autoimmune condition where hair falls out in round patches. The hair grows back, sometimes after years, but when it does it’s incredibly coarse in texture. It’s definitely not as life-altering as alopecia totalis ― where the hair loss is much more widespread ― but it can still significantly affect your appearance and self-esteem.
Truthfully, I wasn’t all that bothered when I was first diagnosed. There wasn’t any hysteria or “why me?” moment. My hair and I had been sworn enemies for as long as I could remember, and as far as I was concerned, it was just throwing down the gauntlet again. “You complain you’ve got too much hair? I’ll show you,” I could almost hear it snarling.
My mom, however, wasn’t so indifferent, and she hauled me off to a specialist. “There’s unfortunately no treatment,” he shrugged, and that was that. My grandmother immediately changed the subject when I told her about my diagnosis. As someone who held women’s hair in such high esteem, I figured she didn’t want to dwell on this unseemly dent in my crowning jewel, and that was OK.
In the subsequent years, I found various techniques for dealing with my alopecia ― there was a lot of A/B testing going on behind the closed door of my university dorm room. Keeping my hair relatively short seemed to temper the loss a little, and inventing interesting hairstyles to cover bald patches became a bizarrely satisfying hobby. I discovered I had to regularly change my parting placement or hair loss would begin in that area, while tight hairstyles would begin a spiral of hair loss.
Unfortunately, the biggest trigger seemed to be stress. This meant that if I endured a bout of hair loss and became stressed about it, the situation would become physically worse, beginning a cycle.
In shared houses I’d gag as I’d dig out handfuls of hair from the drain, worried my housemates would find out. I was aware there was little I could do about my condition and that it didn’t make me a bad or gross person, but I still wanted to avoid their judgment. Other than a few catty comments from a particularly badly chosen boyfriend, I seemed to be hiding it relatively well.
But no matter how I wrangled it or how many expensive serums and conditioners I tried, my hair always seemed to look worse after two hours in front of the mirror than everyone else’s did after they’d “just rolled out of bed.” Friends ― believing I simply needed educating ― offered unending, patronizing advice on how to improve my hair health, unaware of my condition or that that I’d already tried everything without success. I endured a public dressing-down from a lecturer in my journalism course for having “messy” hair that made me look “unprofessional,” despite spending hours on it that morning.
Visiting the salon was a humiliating experience during which the stylist would usually invite trainees to look at my hair and scalp, while simultaneously berating me for allowing it to become so dry. When I told one of my best friends about it, she shushed me, concerned that an elderly man nearby would hear me. This did not make me feel in any way accepted, but I clung onto the belief that it was everyone else who had the problem, not me.
After graduating, I moved to a new city. My friends there were strong, intelligent women, and we were extremely open with each other, discussing everything from dieting and hair removal to sexual experimentation and mental health without shame or prejudice. We were millennials; the writers and celebrities of our generation were using books and essays and tweets to tear down taboos erected by those who had come before us, eliminating shame as they went. In this age of acceptance, no topic was off the table. Or so I thought.
It happened again and again: The moment I brought up my alopecia ― which I didn’t do often ― shoulders would stiffen and smiles would freeze, my friends’ eyes darting wildly as they tried to segue back into a more comfortable line of conversation. Sometimes they would deflect by way of awkward jokes. I sensed that even the most accepting of my friends were not prepared to discuss this. But why?
As far as I can tell, the root of the awkwardness is that alopecia is a condition that affects my appearance. It certainly has little other impact on my health. I’ve never experienced this stigma when talking about my asthma attacks or the time my lung collapsed — which to me seem infinitely more damaging and frightening to talk about.
I recently asked a couple of good friends how they feel when I bring up alopecia. One replied: “I feel bad for you because I know how self-conscious about your hair you are. I also feel grateful I don’t have it because my hair is the only thing I have going for me.” Another messaged me back, after a couple of reminders, saying: “It makes me feel awkward because there’s nothing you or I can do to fix it.”
Here’s the thing: If you put on weight and want to lose it, it’s possible. If you hate your nose, save some money and you can change it. Small lips? It’s filler time! In this Kardashian-inspired, Instagram era, if you don’t like how you look, the solution is to outwardly fix what you consider the problem. But what if it’s unfixable?
My friends are now 30-something feminists, but attempting to talk to them about my condition has made me realize just how much stigma we inadvertently internalize. We might believe we’re more resilient than the teens in Instagram influencer comment sections, but the subtle effects of our aesthetically led culture run much deeper. We might believe we judge other women on their intellect, their achievements and their character, but something entrenched within us still buys into that harmful Disney principle where internal qualities correlate with outer beauty. And while I don’t believe having alopecia has exposed me to the worst ramifications of society’s beauty obsession, it’s given me a disappointing insight into the moral panic people feel when a woman’s appearance is threatened.
Thanks to the unshakeable zeitgeist of the male gaze, a woman’s value continues to be tied to her appearance. My friends feel awkward because they love me and they don’t want me to feel devalued. But I don’t, and I never have. Being diagnosed with untreatable alopecia means I’ve had to work toward self-acceptance; I just wish the rest of the world would catch up.
Since my diagnosis, I have viewed alopecia as little more than an annoying inconvenience ― a condition that meant I’d have to spend more time tending to my hair, along with the disappointing knowledge that it would never look as good as I wanted it to. Yet the reactions of the people I’ve confided in ― and even those I haven’t ― as I navigated my 20s, have made it feel like a much more shameful thing than I could have imagined: something to hide, as I did years ago with my college housemates.
Not too long ago, I was dashing through a train station when I spotted a group of bald women cheerily shaking buckets of change, raising money for an alopecia charity. I stuffed $10 into a bucket and quickly walked off because, to my surprise, I was in tears. I realized I wasn’t crying due to the bravery of the women, but because their simple action of publicly being who they are has to be deemed brave, or even rebellious, in the context of how society values women. I hope to feel that supported and confident one day. After all, I am more than my disease, and I have nothing to feel ashamed of.
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This article originally appeared on HuffPost.