Who Am I Without My Baldness?
Sitting on the crunchy doctor’s office paper, holding back tears I didn’t expect, I don’t know what to tell the nurse who asks what I’m in for. This is my first time back in my dermatologist’s office in over a decade — I commuted over an hour from my place in Harlem to Connecticut to come in — and I know the guy’s good because he looks exactly like I left him. But why had I made this appointment?
“Ninety percent of my hair has fallen out in the last year. I’ve had alopecia areata since I was 2, so I am okay with it. But I can’t put in contacts without eyelashes, so I’m considering treatment for logistical purposes.” This is what I tell the nurse, others, myself.
I leave with two sample bottles of Pfizer’s Litfulo, one of the first FDA-approved treatments for alopecia, which should tide me over while the office makes the arrangements to get regular deliveries of the daily dose covered by my insurance.
For the first few months, absolutely nothing happens other than me having to take the Metro-North every few weeks to have pesky, six-minute-long appointments to continue “documenting the need” for insurance coverage. I contemplate stopping treatment on every ride.
Then in January a paperwork-something-or-other leaves me with four pills and no idea when my next bottle will be delivered. I’m frantic on the phone with my doctor’s office and end up rushing to Fairfield to get more samples. I threaten to stop the whole experiment on the phone with my therapist, who politely points out that not having access to my medication appears to be what’s making me so upset.
Everything eventually gets figured out. To make life easier, I start seeing a dermatologist in New York and with more time, results. I go to Nashville in February to visit my best friend, who hasn’t seen me in over a year, and she lovingly deems me a “fuzzy little peach” due to my newfound white hairs. Over the next few weeks and months, those ch-ch-ch-chia into thicker, darker brown hairs.
This October will mark one year since I’ve been taking Litfulo. Only two other FDA-approved meds like it exist: Lilly’s Olumiant and Sun Pharma’s Leqselvi. The first became available in 2022; Leqselvi just got approved this past July. All three are Janus kinase (JAK) inhibitors, which modify the immune system. When one has alopecia, that system is essentially balling out so hard it’s attacking one’s own hair follicles. JAK inhibitors aim to curb that process.
For the first time in my life, I have to shave regularly. I’ve never had eyebrow hair before and am now contemplating brow products. Each month, I log on to lead my regular virtual alopecia-support-group session and watch eyes in the Zoom boxes widen, eager to ask me questions. “It’s giving ‘Doc Brown in Back to the Future,’” I say, brushing off the latest compliment from a colleague, family member, or friend about my newfound fuzz. It feels as if everyone around me is so excited for me to be venturing into the new world of FDA-approved hair-loss treatments. I’m not so sure.
I was officially diagnosed with alopecia in 1994, when I was 2 years old; my mom first discovered skin patches on my head during tub time. I spent the majority of my childhood bald and holding back tears — I would have given anything to have the hair I’m growing now. I swam with hats on at pool parties, clutching my head every time I went under water or jumped in, never truly floating freely like the other children. There were the questions from kids, or worse, their parents: Bad haircut? Is she almost done with chemo? Does she sleep with her hat on? (At slumber parties, I did. I never wanted the pretty little girls to wake up to a nightmare.)
My dad also has the condition, but when I was growing up, he rocked a floppy mop of Bob Dylan hair. His secret? Cortisone injections. These steroids, injected swiftly by needle, aim to encourage hair growth. One can feel like a human pin cushion as that needle flits in and out on the head, upper neck, and sometimes even eyebrows. My parents mentioned this as an option to me when I was 9 but encouraged me to wait to make the decision myself — the process is as excruciating as it sounds.
My solution in high school was to comb over the hair I did have and secure it over any bald spots with butterfly clips of every color of the rainbow. This became my signature look, but going into my junior year of high school, I asked my parents if I could attend one of my dad’s injection appointments with him.
I watched my dad try to appear brave as he sat on the crunchy doctor’s office paper. I’ll never forget watching him wince, our shared dermatologist standing over him with the needle, giving him multiple shots on his head. Months later, tears pricked my eyes as I sat on my bed, looking down at the tiny blood spots in my white beanie after an appointment of my own.
I dreaded these monthly appointments, but I grew enough hair that looking at me head on, one would never know I had alopecia — I even got bangs! Nevertheless, one stubborn patch on the top of my head remained and still does. But as the hair I did have grew around it, so did my confidence. After years of avoiding the spotlight, I joined the drama club and began writing for the student newspaper. Those experiences led me to a close-knit friend group and gave me confidence that had nothing to do with my looks. Going into my senior year of high school, I decided to stop not only treatment but also ditched my butterfly clips.
On my first morning of senior year, I stuffed a baseball cap in my bookbag, ready to abandon ship the second I felt ugly or ridiculed for letting my top patch show. That moment never came.
More things happened that I didn’t expect: I landed the lead in the fall play and fell in love for the first time. I moved to New York City for college and started a blog called Not So Fair Hair after meeting a mother on the street who was grateful to run into someone rocking their baldness after her young son’s recent diagnosis. I went on to write essays about very nearly almost having a full head of hair and launched a podcast three years ago. I became a support-group leader for the National Alopecia Areata Foundation, served as a panelist at its annual conference, and co-founded the Alopecia Justice League.
For over a decade, I proudly let my ’do do its thing. Of course that time didn’t pass without insecurities and unsolicited advice. There was the woman who suggested I rub cinnamon on my head as I rang her up at my college coffee shop job. The still unanswered texts from guys I really liked. One day, a woman frantically showed me some product with the word “miracle” in it on her phone on a Harlem street. It was as if she was trying to talk me through the safest pathway out of a house on fire: “Do you want me to write it down for you? Seriously, it’s working for me!” I blurted out, “I really appreciate it, but I’m actually very happy with the way that I look.” She fled down the street as if I’d said something very rude.
In January 2022, when I was 29, I noticed I was losing the hair that surrounded my signature bald spot. I remember the intake of breath as I noticed it getting ready for a beach day on a January trip to Florida with one of my best girlfriends. The loss was gradual until it wasn’t. As the year went on, I cried discovering sizable clumps after every shower and agonized over creating work-appropriate outfits to match my new collection of head coverings.
By that October, a selfie I snapped at a silent disco showed me the hard truth: Everything was gone, save for a random curtain of hair across the back. The level of loss I reached at 30 rivaled what I was missing at 13. My emotions mirrored the ones I felt as a teenager too: I often met my wet eyes in the mirror as I put on makeup and pulled on clothes, trying to lose the lump in my throat before I had to leave the house. I blamed a suitor’s shady communication skills on myself for taking off my head covering on our second date, cursing something I couldn’t control instead of his inconsistency. I hustled through well-intentioned conversations with close friends who knew better when they asked, “So, are you doing all right?”
Some days, I rocked my next-level baldness, assuring myself and everyone around me that I was just fine, taking the shape of the role model I thought others needed — including myself. Other days, I didn’t want to get out of bed, go to work, get on the subway, go on a date. Feeling bad about the precise thing I’ve built a personal and professional identity encouraging people to try to feel good about makes me feel terrible. Simply considering doing something to reverse the hair loss felt like a betrayal to myself and to the numerous people with alopecia I had encouraged over the years.
It was rare that I even complained about my new hair loss to anyone during that time, but an uptown walk with a close friend who sensed I was unhappy quickly turned teary. “You would never judge someone in your support group for seeking treatment,” he said to me when I claimed there was nothing I could do. “Why aren’t you extending yourself the same courtesy?” It’s true: I have genuinely cheered on both close friends and casual acquaintances who have decided to take these medications. Alopecia isn’t a choice, so how one approaches it gets to be.
Nevertheless, I’ve continued to feel conflicted about my own approach. Being the girl who rocked her hair loss worked so well for me for so long, bringing me exciting opportunities and close friends I otherwise wouldn’t have. As I grow hair, I feel grateful, but I also feel like I’ve lost her, the me who made her childhood foe into a friend, declaring it her life’s work to encourage others to do the same. Literally taking a pill to potentially reverse not just my hair loss but in a way, all of that — it can be tough to swallow, even as I do so every morning.
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