For some, September means the beginning of fall: pumpkin spice lattes and apple picking. For me, it’s significant because it’s Alopecia Areata Awareness Month. While others are enjoying the crisp air, I’m wondering if the change in weather will cause my hair to shed more than it usually does.
Back in January, my eyes had been glued to my phone as I watched Rep. Ayanna Pressley (D-Mass.) explain her battle with the autoimmune disease. Alopecia, which causes extreme hair loss, affects as many as 6.8 million people in the United States, and it can vary in severity. But up until that moment, it felt like I was the only young woman with the problem. “It’s about self-agency, it’s about power, it’s about acceptance,” the congresswoman said; these words struck me as she spoke them. I never thought about accepting my disease, and there was power in that. It was the first time I learned that it was okay that I was losing my hair and trying to save it, too. Of course, Pressley’s experiences as a Black woman with alopecia are vastly different than my own as a White woman. But still, her openness helped me come to terms with my own struggle.
I’d been 20 when my mother started to examine my hair.
“Why is it so thin?” she asked at dinner one night.
“I have no idea what you’re talking about. It doesn’t look any different,” I snapped.
Although I resisted, my mother dragged me to a nutritionist. The nutritionist took my weight and measurements, but everything seemed normal. Before I left, she recommended four different vitamins and a high-protein diet.
It didn’t work. My mother would put on her glasses, scrutinizing my scalp. Months later, she made an appointment for me at “one of the world’s top hair doctors,” whose only advice was to try his own shampoo formula.
Weeks passed and we saw no difference. I’d glance down and see strands covering the wood floor and couch. When I showered, I’d run my hands through my hair and come up with clumps, desperately washing my hands off. I lifted the hair on the side of my head and there were holes missing. My mother, never out of ideas, took me to another doctor.
“Who is this one?” I asked.
“She’s the best doctor in New York.”
“Didn’t you say that about the last guy?”
“She’s good. Trust me.”
The new dermatologist diagnosed me with alopecia. Even with an official diagnosis, part of me resisted and didn’t fully believe her. She recommended cortisone shots to help with the inflammation. She talked to distract me, but every time the needle was stuck into my scalp, I could hear it. I tried not to move.
“It doesn’t look terrible and you have a beautiful face,” she said. “Your skin is nice, too, once those few breakouts clear up. How do you feel? Do you feel like it’s really bothering you?” I felt self-conscious; I didn’t believe my face was pretty enough to distract people from missing chunks of hair. On the car ride home, I thought about all those Pantene commercials I watched when I was younger. The idea that beautiful women had long shiny hair was seared into my mind.
I struggled internally for the first year and a half after my diagnosis. I wanted to do everything to save my hair, but at the same time, I felt vain for crying over the strands that fell down the drain when people dealt with much more. I also developed the odd habit of looking at other people’s hair. I stared at a classmate’s part to see if her scalp was visible. I glared at a woman with long black curls walking in New York City, wondering how she got so lucky. I zoomed in on minor reality stars on Instagram, thinking: “They have to have extensions, right? It can’t be real?”
For a year, I received injections every other week, wore a red light cap every other day and used Rogaine every night. I also tried different shampoos, conditioners and oils — anything to try to keep in a few strands. After a year of these remedies, I decided to do a laser treatment. It felt like fire was being held to my head.
Nothing was covered by insurance, so I would hand over my credit card, paying what I could with my minimum-wage salary and my family helped with the rest. I was privileged to have a family who was able to financially support me in this way, as most women do not.
Two years later, I finally saw improvement. My doctor gave me a huge hug, proud of the progress. But it would take a long time to grow any longer than a few baby strands. So I tried for extensions that cost $2,000, about a month’s worth of my pay. I straightened, curled and pinned it up, someone else’s hair giving me confidence.
Four years ago, I wouldn’t have known this disease was something that existed, and the last thing I’d want is for September to go by without women better understanding it. To talk about losing hair already seems taboo. In my senior year of college, I asked a CVS employee where the Rogaine was. “We don’t have that for women,” he commented. I found it a few minutes later on my own.
But the day I watched Ayanna Pressley’s video, I felt seen. It started with her reminding me that I wasn’t alone with this pain. In the past year, it has continued with me looking into the mirror every day, seeing past what society tells me is beautiful. It’s about looking past my exterior, to who I really am. What I saw was something no disease or outside opinion could take away from me, and this realization has slowly but surely freed me.
The shame has been shedding, along with the fear that with every strand lost I was less feminine, less beautiful. In the end, I realized, I wouldn’t be any less of a woman. I’d still be me.