Real Talk: Dealing with Alopecia

When I was 3 years old, I wore a tutu for an entire year. At 7 years old, I rarely showered. I had a rat tail, and climbed trees in my bare feet. Lots of tie dye was worn that year. By middle school, I had started plucking my eyebrows and wearing denim skirts to match my popular (but troubled) best friend.

I knew the pros and cons of being a tomboy versus a girly-girl: as a tomboy, I got teased and no boys would give me the time of day, but I was also afforded the freedom to dress and act pretty much however I wanted. As a girly girl, I had to watch my friends tear themselves and each other apart, but I started receiving validation for my appearance (a thing I knew shouldn’t have mattered, but felt shamefully good.) I managed to float between the two archetypes as best I could, making friends in nerdy places — a gifted program, academic summer camp, theatre, theatre, theatre! — but never pushed too far past the edges of conformity. I am, by nature, agreeable, quiet, and a bit of a people-pleaser. I liked being liked, even for superficial reasons.

Growing into a size 10-14 in high school also gave me a taste of noncomformity and non-likeability. That’s not to say that people actively disliked me for my body, but any woman outside of the very slim margin of the Western ideal (most women, really) can recall a time when they’ve been made to feel undesirable, or less than. My inability to make my body acceptable, consumable, and liked by all, later became a comfort. My sister explained it perfectly over the phone the other day, as she walked home from work: the farther you are from the ideal, the easier it is to accept your deviation. The ones who go crazy are the ones who are so close to achieving it. “I knew I was never going to look like Christie Brinkley,” she said, “so I just stopped giving a fuck.”

I soon learned that my proportions were a sort of bullshit detector. I found that those who praised my body, for example, would do so by assuring me that I wasn’t “fat,” or by commenting on my generous backside. The majority of these comments were well-meaning, and I tried to put them in context. But having a body that is up for discussion, as so many thick bodies are, certainly helps you filter fatphobic douchebags and ass fetishists from your list of potential suitors. Those who made it their business to comment negatively on my body, well I decided long ago that they could go fuck themselves.

My body has always been rebellious in shape and function. I developed severe scoliosis and had spinal fusion surgery at the age of 11. At 15, I was (falsely) diagnosed with early-onset adult Rheumatoid Arthritis. But in my mid 20’s, just as I had started to settle into my body’s idiosyncrasies, I discovered a whole new default. My hair was falling out.

When I was first diagnosed with Alopecia Areata nine months ago, I convinced myself that this was yet another step in my journey toward body acceptance. I told everyone I knew about my new bald spot, as outward affirmation of that acceptance. I tried to take it in stride. I joked to friends and family that if my alopecia progressed, I’d shave my head like Sinead or don an endless parade of Lil’ Kim wigs.

The truth was that I was terrified. I felt the same lack of control I had as my teenage self, who had realized that her body would never be a tiny, well-oiled machine. While I feigned acceptance in public, I was busy buying brown scalp crayons, weaves, and bobby pins in private. I stopped going to shows and parties if I knew I didn’t have enough time to cover my growing bald spot. I was becoming the kind of vain, self-conscious woman I had tacitly promised myself I would never become: I was judging myself based on what others saw.

After months of referral wrangling, I found a dermatologist and started steroid treatments. I’ve since grown back a thin mossy layer of brown hair. Although I’ve started to feel like I can finally (literally) let my hair down, Alopecia has shaken my hard-won belief in my own self-esteem. That last sentence sounds sort of clunky, so let me explain what I mean by “belief in my own self-esteem.” I know what my self-esteem has been built on, and part of keeping it intact is believing that I can. It’s work, to have self esteem. And my body’s latest rebellion really put my belief to the test.

Luckily, most days I’m able to look at myself and enjoy what I see. When I consider how few women in my life can do the same, I wonder how any of us endure modern womanhood and its seemingly endless assault on our own self-worth. If I fought back self-loathing for almost a year, because of an otherwise asymptomatic patch of missing hair, how could I expect any other woman  – sick, or healthy, rich or poor – to build a foundation of self-worth? My only hope is that the shifts we’ve seen — the discussions taking place about seemingly small things (airbrushing) and arguably larger things (ensuring the safety, well-being, and equality of girls and women around the world) — will mean fewer girls choosing between tutus and tie-dye. Maybe girls will become more emotionally resilient as they grow into their own rebellious bodies. Maybe one day, those bodies will no longer be viewed as rebellious, and every body will receive the unconditional love it deserves.

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