The following is the first in our new online series ‘Let’s Talk About…’, looking at invisible illnesses and physical and mental health conditions that don’t have the same level of awareness surrounding them as many other health conditions. Through this series, qmunicate hope to raise awareness of these conditions and the ways they affect students’ lives, as well as fighting to remove any stigma attached to them. To kick off the series, Alison Ross looks at trichotillomania, an impulse control disorder focused on hair pulling.
I’ve always been a bit of a fidget – whether I’m cracking my knuckles, picking at my nails, or pulling at a loose thread from a piece of clothing, I need to have something to keep my hands occupied at all times. Growing up, I was frequently snapped at to stop fidgeting by my parents and teachers, either having my hands batted away from whatever was keeping them busy or having the object of their attention confiscated from me, only for them to find a new focus just seconds later.
I’ve always been something of a perfectionist as well. If something looked or felt not quite right, I’d fixate on it until it had been rectified, regardless of what was happening around me. Accusations of vanity were not uncommon as I was repeatedly late after spending ages fixating on my appearance, or as I would get caught constantly checking my reflection to make sure that everything was still ‘just right’ – even if I was just about to go to bed. To find that something was out of place, or that I had forgotten to include even a small aspect of my extensive grooming routine, would leave me feeling incredibly stressed or anxious, convinced that everyone would be able to notice the imperfection and that their opinions of me would dramatically change, lest I find a way to fix it instantly. Imperfections could be anything from an eyeliner wing that had ever-so-slightly smudged, or realising that from certain angles, my nose looked huge and crooked. Most often, though, my attention would be focused on my hair; specifically, hair that I believed didn’t look or feel ‘right’. This, combined with my anxious tendency to pick and pull at anything that would keep my hands busy, led to a hair pulling disorder that I would later learn was called trichotillomania.
Trichotillomania is defined by the NHS as an impulse control disorder, also known as a body-focused repetitive behaviour (BFRB). BFRBs are disorders that are characterised by pathological grooming behaviours, driven by impulses that results in physical damage. Other BFRBs include skin picking and nail biting, to the point of causing bleeding, scarring, or other physical damage. The effects of these behaviours can also lead to negative self-esteem, causing great emotional distress. These disorders can be linked to other mental health conditions like anxiety, OCD, and body dysmorphic disorder (BDD), though rather than being symptomatic of these disorders, BFRBS are considered a group of disorders in themselves. BFRBs are complex behaviours, more than just simple habits that can be rectified by sheer will and perseverance, however there is relatively little knowledge on what causes BFRBs, and even less on how they can be professionally treated. But with an estimated 1 in 50 people suffering from some form of BFRB, it’s important that these conditions are spoken about, to raise awareness of them and to break down the idea that they are something that can be tackled alone.
When my hair pulling was at its worst, I would find myself constantly playing with and pulling out my hair from specific parts of my body – mainly, the crown of my head, my eyebrows, and my arms. Hair that I felt was too long, too coarse, too dark or that just didn’t look ‘right’ would be pulled out, eventually resulting in bleeding and scarring where I would pick at the skin around the hair, and visibly hairless patches on my scalp. Of course, the pulling and picking became cyclical, as new darker, thicker hair would grow in place of that which had been pulled out, creating noticeable tufts which I had to pull out as well, as this hair was also ‘not right’. It wasn’t until my mum pointed out that she could see the balding patches on top of my head that I realised my hair pulling wasn’t just another way for me to harmlessly fidget, but something I had to learn to control before it became even worse.
For me, trichotillomania was, and continues to be an aspect of my body dysmorphic disorder. It is another way that I try and control the way I look, regardless of the discomfort or physical damage it may cause me. Unlike other aspects of my BDD though, I have found ways of controlling and managing my trichotillomania. Finding other things to fidget with is my first port of call when I find myself with the familiar urge to pull – sometimes this means swapping one unhealthy behaviour for another, such as nail or skin picking, but when I notice this happening I try and find a less harmful alternative, such using my phone or fiddling with a stim toy (any kind of item that stimulates your senses and keeps your hands busy). On top of this, I was fortunate enough to meet someone else who suffered from trichotillomania who was happy to speak to me about it. Talking about our triggers and our reasons for pulling helped me feel less alone in my habit, and made me realise that my BFRBs were not my fault, nor were they weird or something to be ashamed about.
Over time, my trichotillomania has improved – it will probably never go away completely, but I no longer find myself constantly fingering strands of hair or feeling an unrelenting urge to pull. I would love to see a greater awareness of trichotillomania and other BFRBs, especially amongst health professionals, as without it people like me will continue to suffer in silence and their habits may worsen. I was lucky to have people around me who recognised the damage I was doing to myself and who helped me seek out help to manage it, but without working to increase awareness of BFRBs like trichotillomania, these conditions will continue to negatively impact the lives of millions.
BFRB Awareness Week takes place every year from October 1st-7th, and aims to raise awareness and remove the stigma surrounding BFRBs like trichotillomania. If you would like more information about BFRBs, or would like to seek support for yourself or someone you know, visit the TLC Foundation at http://www.bfrb.org/index.php