I was born with obnoxiously thick hair. It was a defining feature in my family, graciously handed down from my dad’s genetics. Having a mass of unruly waves certainly came with a fair amount of drawbacks. My scalp was regularly tender and itchy, and 3 AM emergency shampoos weren’t an uncommon occurrence for me. I couldn’t wash my hair in the morning before school because the combination of washing and styling (was anyone ever caught without a hair straightener in 2008?) took approximately 2 hours and, while also suffering from heinously disordered sleep and severe morning pain, I couldn’t sacrifice the time spent laying in bed bargaining with myself to get up and face the day.
When you have a lot of hair, it goes without saying that you shed like a Malamute. So, I didn’t make a big fuss when I started collecting palm-sized balls of hair from the drain after every shower. But slowly, between the ages of 16 and 19, I found myself drowning in it. At the height of The Great Shed, I was spending more time collecting the fallen strands in the shower than actually cleaning my hair. I woke up to a lattice of strands on my pillow every morning and waded through more fallen follicles than you would expect to find littering the floor of a hair salon.
Nothing has the capacity to reinforce the fact that your chronically-ill body is falling apart like pulling out masses of hair every time you run your fingers through it. There’s a reason that teeth clattering against a porcelain sink and clods of hair laced between trembling fingers is a regular feature of nightmares and horror movies. As humans, we intuitively understand the condition of our skin and hair to be indicative of our overall health and well-being. This being the phase of doing everything in my power to ignore and, God willing, forget that I was sick, I was mortified at the prospects of bearing a physical indication—on display for the world to see—that I was constitutionally weak. The number one thing that no ill person desires is to be pitied by strangers, much less their peers. The pity of others is just a reminder that there will always be additional barriers to a functional and productive life; a reminder that you will never fit comfortably into our ableist society.
One sure-fire way to trigger a MCAD flare up is stress. And in my 19th year, I had plenty of that to go around. My then-boyfriend’s traumatic car accident flooded my body with more norepinephrine than my POTS was already dispensing with abandon. Throw progesterone birth control in the mix—a hormone that exacerbates joint laxity in EDS sufferers—and you have the perfect recipe for hair loss. My body was crumbling, and my hair soon followed suit.
I’ll never forget the day I reached up to scratch my scalp and encountered that first quarter-sized patch of seductively smooth skin at the nape of my neck. My fingers rubbed the spot absentmindedly, unable to comprehend the meaning of this strange crop circle in the back of my head. I wandered into the dishwashing room of the small cafe I was tending at the time and used my phone to photograph the anomaly. When I saw the pale little circle throwing off the white-balance against my dark hair, I felt my insides collapse. I’ve always been skilled in the art of generating worst case scenarios, and I somehow already knew that this was the end. Before my alopecia diagnosis, before the failed injections, before the fall of my already crippled immune system, before the denial and tears and manic internet searches.
Though my boyfriend was very supportive, I couldn’t seem to come to terms with my new status as a balding woman. I feared that my partner would lose any vestige of sexual attraction to me, or worse, that I might lose what remained of my dwindling reserves of confidence. Sure, I’ve had plenty of pixie cuts in my lifetime, but I couldn’t envision myself with no hair at all. I bristled every time the wind blew, sure that my multiplying bald spots would be revealed in all their bare, shiny glory.
With every round of scalp injections over the next two years, one patch would grow in only for another to sprout in its place. The only thing I felt sure of was that I wanted the anticipation to end. Even when I was free of lesions, I compulsively searched my scalp for new ones that would undoubtedly crop up. I vaulted back and forth between acceptance, even anticipation, for total hair loss and a deep sense of dread.
What ultimately changed my perspective on being bald was finding other alopecia sufferers and voluntary baldies who were embracing their look. I found artists who shaved their head as a fun experiment and never went back, women with crazy makeup skills who looked like they stepped out of an 80s New Wave music video, and even a collection of bare-faced alopecians captured by a photographer who admired their exotic mystique. I saw women loving their lives and highlighting all of the wonderful aspects of the bald life. And I felt anything but pity for them. What I did feel was profound veneration.
So I decided to take the plunge and shave my head. I didn’t have an electric razor, and I wasn’t sure if I needed to shear the length that I had before I mowed the roots off, so I went to a salon that permitted walk-ins. The older woman who shaved my head was incredibly nice and supportive, though at this point I wasn’t even slightly nervous. I felt buoyant with excitement, half expecting to drift into the atmosphere as soon as someone cut my tether.
The hairdresser gassed me up by telling me how beautiful I looked without hair, but suggested that I could wear hats until the lesions covered my entire head and I no longer looked like a Dalmatian. But as I watched the razor unveil the shape of my head, I knew I would never want to hide my affliction again. What made me feel so elated was that I was finally done pretending. I was done worrying about whether my hair was taken from me, because I took control and did it myself. The simple act of getting rid of my hair and refusing wigs put the power back in my hands.
In the weeks following my dramatic makeover, a few of my coworkers and friends commented that I seemed like a completely different person. And I certainly felt like one. I was walking on air. I no longer had to struggle to hold my arms up to wash my hair on days when my EDS was in full flare. I relished the feeling of the wind on my scalp in the July heat. Best of all, I was no longer relying on an arsenal of carefully placed hairpins to hide what was eating me. Secrets make you sick, and coming clean relieved a lot of anxiety. I felt like I had been given my life back. After being constantly at the mercy of my escalating bodily dysfunction, I had finally found one symptom I could control.
My eyebrows and eyelashes fell out a few months later, and it was definitely an adjustment. A lot of people have the mistaken idea that the transition was easy for me because I projected a lot of confidence throughout the whole experience. I think that’s due to the fact that I had started to reject conventional beauty standards. I stopped thinking that there was a “me 2.0” out there and all I had to do was try this new lip plumper or buy an expensive hair conditioner. There weren’t a lot of bald models around this time, so I knew I would never be in the running for society’s version of a beauty queen. I started to question the origin of all the criticisms I imposed upon my own appearance and divert my efforts to acknowledging the things I liked about myself apart from the myriad imagery imparted by an inundation of media conditioning.
Gradually, I started reversing a lot of negative self-talk and quit focusing on the things I hate about my looks. I started to wear makeup less and less and I scarcely noticed the stares of strangers. In fact, I can’t think of anyone who has been particularly rude to me. But I can say that there have been an overwhelming number of wonderful, supportive, kind-hearted people who have stopped me at Target or a restaurant with my husband to cheer me on. I have more friends now than I did before I went full Sphynx. I’ve had four different young women tell me that I was the inspiration for shaving their head and it has brought me so much joy to hear their stories and how it impacted their self-image.
Obviously, everyone has bad days and we all catch ourselves being too self-critical from time to time. But I’ve made some startling progress in my relatively short time without hair. Every time another cosmetic surgeon touting plugs or some other hair loss cure follows me on Instagram, I feel a deep sense of resentment towards people who perpetuate the myth that you can slice away insecurities with a scalpel. I’m now surrounded by a strong community of Alopecians who don’t consider themselves “sufferers” of any illness. I’m eternally grateful to them for showing me that I’m the sole proprietor of my self-confidence. You can’t mold yourself to favor everyone’s preferences, but you can embrace what you have and shift your focus to the things you love about yourself. The longer you practice this, you might be surprised to find that you forget to notice the flaws.
Sorry this post was so long, but telling my story in full was really important to me because I think there’s a lot you can take away from my experience. I was cute before I lost my hair. But I didn’t feel it. I spent more time tearing myself down than building myself up. It took a dramatic deviation from cultural norms to make me realize that I can be whatever kind of woman I want without being worth less than women who conform to hyper-feminization (which I don’t mean to critique in any way). If you feel like yourself in long, lustrous, Victoria’s Secret waves and pounds of makeup, own it! But it’s always a good idea to check in with your subconscious and evaluate whether these modifications are helping or hurting your self-image. Is your hair your safety blanket? Your makeup a defensive shield? Then it might be time for a change.