Trichotillomania. A condition I’ve always thought could benefit from a catchier name.
It’s a pretty difficult name to remember, let alone pronounce, when you read it in the agony aunt section of a teen magazine and realise this speaks to every inch of your 11 year old self.
These were pre-internet days, and I wouldn’t see that name crop up again until my late teens.
It’s a pretty difficult name to remember when a teacher attempts to subtlety probe into the reason for the bald patches on your head. I tried, but I couldn’t remember the word. Everyone assumed Alopecia, and it was easier to let them.
Had I remembered the word, would it have empowered me in its truth? It’s hard to say. All I know is that other words were just as difficult to say. It was impossible to think of uttering, out loud, the words, “I pull out my own hair” – because even I knew at 11 years old that that was the realm of crazy people.
Trichotillomania is a mental condition involving compulsive, obsessive hair pulling. Body focused repetitive behaviours (BFRB) – picking, pulling, biting – are in fact, common enough that there will typically be at least one person in every classroom or coffee shop who has a BFRB.
I don’t remember when exactly I started. Whether it was a gradual thing or something I just started doing one day. My first Trichotillomania memory is the first moment I went too far.
I was around 11. (I later learned that this is a really common age for Trichotillomania symptons to present themselves. I am, it seems, a pretty textbook example). I was sat at our family computer desk and I began pulling in a spot near my crown. I pulled and pulled and pulled at the same spot, clumps of uprooted hair between my fingers. I knew I had gone too far when my brother spotted my newly acquired bald patch almost immediately.
As if to further spite me, my new hair decided to grow back coarse and wavy, completely at odds with the rest of my long, straight hair that ended below my shoulder blades. For around a year, I had a random, short tufty section of hair that stood out like a sore thumb. Oh how I wish hair straighteners had been around then. It took years for me to truly believe someone when they said they liked my hair.
When I was 12, my group of school friends got together to learn and film a dance routine. The most horrifying part of this story for me is not our carefully choreographed dance routine to 5ive’s When the Lights Go Out, but that watching back that footage was the first opportunity I’d had to see my tufty hair from all angles. The first time I realised it looked really quite shit.
Despite the intense self-consciousness I felt about my hair, I didn’t regret causing it in the first place. I didn’t wish for a magical way to turn back time and NOT have pulled it out in the first place. At age 11 or 12, I think I’d already surrendered to the fact that I couldn’t stop myself.
After that incident, I did take steps to avoid such a catastrophic pulling session again. My self-preservation steps involved rotating the patches that I’d pull at, recognising when I’d been pulling at one spot for too long and moving on to new pastures.
In an attempt to slow down the rate at which I pull, I invented a new game – take your time, seek out the ‘right’ hair before you pull. Only pull the prized hairs – the coarsest, the ones with the best texture. Finding a really good hair, one worthy of pulling, is a really great high.
But the urge to pull at the same place over and over never really leaves. Seeing a bald spot appear is both the ultimate satisfaction and the ultimate self-sabotage.
I don’t really keep track, but I’d say at least once a week I am filled with the urge to pull out my entire head of hair. The intrusive thought plays in my head like a film scene – I visualise myself pulling and pulling until there is nothing left. I fight the urge to feel that release. An action that feels GREAT in the spur of the moment. An action that I know full well will leave only me feeling worse once the temporary high wears off.
Like a junk food binge – fit it all in before you have a chance to ruminate on your guilt. Like the way I feel about smoking – I no longer do, but I doubt the memory of how much I enjoyed it will ever leave me, it’s there for good, in the back of my mind, every time I catch a whiff of cigarette smoke and find myself subconsciously inhaling. Like any decent vice, trichotillomania is a “fuck it” whim that feels great in the moment, but leaves a trail of self loathing in its wake.
But my Trichotillomania is not pure self destruction. It’s also my good friend.
You see, pulling gives me a lot of comfort. If you see me pulling, it’s not always a direct indicator that I’m stressed. In fact, when I notice I’m pulling, most the the time I’d be hard pressed to name any particular conscious thought that I’m stressed about.
I used to suck my thumb as an infant. Trichotillomania is like that. It’s my comfort. If I could cure myself of Trichotillomania, would I want to? I can’t even imagine how I would live my life without pulling my hair. It’s such a tangible part of my life that surely I’d miss it? Seek for something else to take its place?
I recently discovered that Trichotillomania is classed as a form of stimming, or “self-stimulatory behaviour’. People who have Trichotillomania have been found to be twice as likely to suffer from sensory overload, particularly with touch and sound. Trichotillomania can be a sensory seeking act. Trichotillomania can be related to autism, to anxiety, and to OCD. This makes a lot of sense when I relate this fact back to myself and my own neurodiverse behaviours.
My Trichotillomania is not just limited to head hair. I went through a very fiddly phase with my eyebrows when I was in my early teens… until I realised that the no eyebrow look was not exactly coveted. My eyelashes have also taken a battering in the past, and pubic hair can be really satisfying to pull, too. Bonus – no one can see the damage. The holy grail of hair pulling. Except….wait… head hair and facial hair is far easier and less awkward to access, and so tends to bear the brunt of my hair pulling.
I go through phases with my pulling. Sometimes I hardly pull at all. Other times I am possessed by it. Sam will say “You are being a real maniac today” – sometimes I haven’t even noticed, it’s a subconscious action. Other times, I’m well aware, and I respond “I know, and I can’t stop”.
Sometimes I am compelled to pull, even though I’m around other people. Sometimes, people probably think I’m playing with my hair. I’m lucky that I’m a girl and that is perceived “girly” behaviour. Sometimes, I know it probably looks weird. But I can’t stop – perhaps that should scare me, to know that I’m so deep in that I can’t stop. To be so conscious of my fallibility. But I’ve kind of come to see it as just part of who I am. Trichotillomania is me and I am Trichotillomania.
The danger zone is when I’m at my most idle. Sitting in front of the TV. At a loose end. Sam complains that I’m incapable of just ‘sitting’. I always have to be on my phone AND watching TV. I can’t do just the one thing at a time. But my heavy use of the Disney Tsum Tsum game on my phone, and my love of Harvest Moon on the Nintendo Swtich (and before that, it’s predecessors on the DS), have really been born out of a need to occupy my hands (both hands, one handed games are no good). If both hands are busy, I can’t pull.
Trichotillomania is a restless condition, we can’t just ‘be’. Often I will find myself with a lot of pent up energy (read: anxiety) that can either be quieted with pulling, or with moving. Sometimes, I need to put my headphones on and move. I need to drown out the noise of my thoughts. Sometimes I need to pace.
Trichotillomania. OCD. Generalised Anxiety disorder. Three diagnoses that I have been given.
In Season 3 of Crazy Ex girlfriend, when Rebecca gets a new diagnosis from her doctor, she belts out an upbeat song about validation and finding a sense of belonging.
Doc, prescribe me my tribe, give me my throng
Tell me that this whole time I’ve belonged
With those other people who share my diagnosis
I laughed and cried along with this song. Because although I know the revelation that can come with learning your diagnosis or ‘label’, I also know the bittersweet discovery that belonging to a tribe doesn’t solve things, there’s a lot of hard work yet to come in working out how a diagnosis reflects on the myriad of individual ways it effects you personally.
Having a diagnosis doesn’t change my behaviours. It’s not an easy fix. But I can identify with the lightbulb moment once it clicks that your own personal unique weirdness is actually a lot more universal than you realised. It does help to be able to put a name to something. It means there’s documented research. It makes it easier to own my weird behaviours.
It means I’m not alone.