Me & Trichotillomania
The grief of hair loss
If you’ve known me for years and years, you likely know what a big part of my self expression my hair had been in my life. In sixth grade, I dyed my hair for the first time - a red dip dye situation that was astoundingly straight for being done by myself.
My mom gave me permission to dye my hair, but told me I had to do it myself - I have hunch that she was hoping it might go so spectacularly wrong that I’d never ask again, but I can’t be sure. Nonetheless, that is not what happened. From that moment I was hooked - I dyed my hair every color (and I mean every color. The yellow phase is, much to my chagrin, immortalized in the eighth grade year book). I had all kinds of hair cuts, from a pixie cut that grew out into quite the mullet (far before they were the craze and I looked a bit silly. Until my next haircut I was in a half up half down phase to neutralize the mullet effect). Teal was my favorite, closely followed by green. I think my mom’s favorite was red or purple.
After that first time, she helped me dye my hair most of the subsequent times. She'd have me sit atop the closed lid of the toilet and stand before me, gloves crinkling. I'd turn on music, setting my phone on the windowsill, out of the way of rogue drops of bleach or dye, and hope no skips would play because her hands were gloved and mine were usually holding a paper towel and the bowls of dye. She'd massage in the bleach first, the fumes stinging our eyes and, if we hadn't opened the window first, sending us bounding into the hallway to gulp in clean air, laughing. She'd separate my hair into parts, "here, hold this" and tilt her head this way and that like a sculptor surveying her clay for blemishes to smooth. "Turn toward the window."
Of course I could do all of this on my own, but I knew she loved this too, the moments close together. Sometimes we'd talk, and others it'd be enough to listen to the music, feel the breeze through the open window, the acrid bleach and dye scented like grape soda thick around us. Our bodies close, chests rising and falling in tandem, her hands running through my hair and mine gripping a tissue to wipe any rogue flecks of dye from her freckled skin. (Once, I asked my dad to do it and he had me sit on the floor in the living room while he watched TV and he squeezed the bottle of dye straight onto the top of my head like he was dousing a hot dog in ketchup and rubbing it in like he was seasoning a chicken breast. I did not ask him to do this again. Though, he did do me a solid one day when I slipped in my midnight re-shave and was weeping in the bathroom because I’d messed it up. Either I was crying much more loudly than I thought I was, or his spidey-senses were tingling because he came downstairs just when I needed someone to. Or perhaps he just had to pee and was too polite to shuffle me out of the bathroom until he’d helped his inconsolable bald child shave their head. Either way the gentle hand that helped without hesitation was much appreciated.)
So my hair has a lot of significance to me - both as a connecting bond to my mom, and as a tool for autonomy. But I have trichotillomania, making my hair also a source of deep grief.
Trichotillomania is a BFRB, a body-focused repetitive disorder. Nail-biting and skin-picking (dermatillomania) are also common BFRBs. With trichotillomania, one compulsively pulls out their own hair (arm, leg, brow, lash, pubic, armpit, scalp, etc), not out of their own volition. The research on it is still in the works, so the reason of it is still murky, but the last time I checked, the research indicates that it is stored in the brain like an addiction, and it’s not the same as OCD, but is often concurrent (people with BFRBs also often have OCD).
For me, this means that if you’ve known me only in the last six years, you have only known me with a shaved head (rarely grown out to a few inches in a pixie), and very rarely dyed.
Every time I have to shave my head again is another little loss, another little grief. I’ve lost autonomy over my hair, and, in that way, over my self-expression. If I could have it my way, my hair would be grown out - I’d be wolf cutting and shag cutting and mulleting that hair to kingdom come. I’d be cutting bangs and regretting it and pinning them to the side until they were long enough to be some sort of curatin bangs situation that I can make work. I would be dying it every couple months, I would be playing. But it’s not possible for me to grow it out past a couple inches at most before I have to haul myself back to the bathroom sink and shave my head over a mini garbage on the counter.
My trichotillomania is so hard to control. It physically pains me to try to stop my hands from wandering to my head and combing through my hair, subconsciously deciding to pull it out. The distress of not pulling my hair, of sitting on my hands and just ‘feeling the urge’ and ‘riding the wave’ manifests in a racing heart and shaking hands and panic. I feel out of control, I feel stifled and angry. I miss my hair. I miss not being at the whim of my hands.
My trichotillomania started my freshman year of college, but I was struggling with OCD that manifested partially in obsessive grooming that devolved into dermatillomania and trichotillomania. Just before the trichotillomania started, I was obsessive about split ends in my hair–if I spotted a split end, I would pull up a pair of scissors or cuticle trimmers and individually cut that strand of hair.
Trichotillomania can manifest out of nowhere, or it can be jump-started by trauma.
After an incident in October 2016, I would stay up all night trimming every single split end I could find, then it devolved into pulling out the hairs with split ends altogether, which became pulling out any hair with any difference in texture whatsoever, including a minute bend in the hair from sleeping on it wet.
I found a video on my instagram from December 2016 where I was subconsciously feeling for a bad hair to pull and pulling out my hair while my friend was talking to me.
The bald spots didn’t get too dreadful (nothing much larger than a penny) until the summer of 2017, when I pulled my hair consistently for an entire binge-watch of SVU (multiple seasons). I remember throwing out a huge pile of hair after that but didn’t think much of what that would mean for my hair until the next morning when I washed my face and looked up in the mirror and looked like Riff Raff from Rocky Horror Picture Show. I instantly broke into heaving sobs. I walked downstairs, where my mom sat on the couch, with my hands over my head weeping, frightening my mom deeply—I’m sure she thought I had just cracked my skull open or something equally terrible. I had to go assist a day long drama class not long after this, and she was so gentle and kind. We found a hat, she calmed me down, and then when I came back from work, she had done research and found these smart bracelets that buzz when you pull your hair. There was a sale if you bought two, so she paid for half, and we got one for each wrist. They were kind of a nightmare but they also kind of helped.
I started a trichotillomania meme account on instagram (called ‘trichotillomemeia’) to process this upheaval, and that grew into a small but mighty community of ‘trichsters’ of all ages and all corners of the internet (internationally!), and it was beautiful and it was silly and it was exactly what I needed. I learned all about trichotillomania and wrote a booklet of tips and tricks to reduce pulling and encourage regrowth (that I pretty much never ever take the good advice of). I made trichotillomania stickers and postcards. I helped others create smaller trich communities within the community, and helped people fundraise for their own habit tracker bracelets, held a giveaway for them. I stopped having the spoons (energy) to lead that community, and closed the account. But I do miss it. I find myself once again very isolated in my trichotillomania.
I’ve spent days with tape wrapped around my fingers, with my hands and hair slick with oil just to make it hard to pull out. I’ve had more or less shock collars on both wrists for years. I’ve had a long and storied hat phase. I have it less under control now than ever. My hair is never around long enough to dye it anymore, and I’m just glad that I’m able to pull off the buzzed-head look and that it looks intentional on me (albeit maybe looking also like I don’t know how to wield an electric shaver and repeatedly veer off course….). I mourn the autonomy I had, the source of self-expression and play, the control I had over my body. I miss the ritual of dying my hair - a ritual of choice, in contrast to the ritual of electric shaver and garbage can that is a ritual of necessity (if my hair grows much longer than an inch or two, I cannot stop pulling it until I’m so bald it’s distressing).
And,
I also value the things that I’ve learned since I’ve lost my hair. I’ve learned to express myself more with my makeup, to lean into accessories.
I learned that I do look good in hats and cute little bandanas. I learned how to build a community and connect with people who previously thought they were the only people out there who did this taboo, stigmatized thing, who felt like it was a personal failure rather than something happening internally, a response to the world around them, a desire for some control when everything else feels so out of control. I realized I love sharing information, and being open about taboo things, creating space to see and be seen in the fullness of my being, in my messy, maybe ugly, maybe weird baldness. To be bald with confidence is to show others that they can do the same. I’ve had people with alopecia start conversations with me, parents of kids with hair loss, and I love that tether of connection to strangers who long to see someone like them existing out in the world.
I know that one day I’ll have hair again, and I’ll appreciate it that much more. And I’ll dye it and I’ll cut it and I’ll think of my mom, and my college best friend who I’d take turns trimming hair or cutting bangs with in the dorm bathrooms.
And it’ll be okay. And I can grieve the hair I’ve lost and I can keep grieving it until I don’t need to anymore.
Love,
Alekz