I began to pull my own hair out aged fifteen. I couldn't articulate why I was doing it - all I knew was that I had no control over it.
Single strands of hair missing from my scalp turned into thinning areas, and these became bald spots. Sometimes, I felt an uncontrollable compulsion to do it, feeling for hairs that didn't feel "right", perhaps too wiry and coarse. Other times, it was only the pain of a repetitive strain injury in my hand or the pile of hair on my desk that made me aware of what I was doing.
Being told that I'd end up bald didn't deter me because I was more aware of this grim reality than anyone.
In the same vein, I would spend hours in front of a mirror, digging into my skin to extract "blemishes" that weren't even there. I would pick, and squeeze, and scratch until I felt satisfied. Sometimes, this was the only thing that stopped me pulling my hair. Other times, I'd pick my face with one hand and pull at my hair with the other. Bloody tissues and strands of hair around me, the damage I was doing to myself was visible.
My family and friends were just as baffled as I was as to why I was doing it. "Just stop pulling your hair out!" was something I was told daily as if it was something I could, well, just... stop. Being told that I'd end up bald didn't deter me because I was more aware of this grim reality than anyone.
"I wish people understood that if we wanted to stop picking or pulling, then we would! We probably would have done so a long time ago! Telling us to simply stop doesn’t work", says Pavitt Thatcher, who has pulled her hair out since the age of thirteen.
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I had little understanding of what this "thing" that was taking over my life was: but I knew what it was not. It was not self-harm because I didn't want to hurt myself. Besides, it didn't even hurt: it felt satisfying. A tic would imply a physical inability to stop myself, yet it was my mind that was telling me to do it rather than my body. If it were a habit, it would be easy to stop. I didn't do it to quieten intrusive thoughts of awful things happening. And it certainly was not just a "normal" grooming behaviour for the purpose of vanity. All I knew was that I couldn’t stop.
The hair-pulling continued for years, meaning years of being unable to wear my hair in particular styles; years of frustration at my own lack of understanding of why exactly I did it; and years of insecurity about how others would perceive me. My need to control this uncontrollable "thing" manifested through an almost obsessive need to change the hair I had remaining. I began obsessively cutting and dyeing my hair myself, to the extent that I would sometimes even do this in the middle of the night. I now know that this - compulsive hair cutting - is actually a BFRB in its own right: trichotemnomania.
At the beginning of Summer 2018, I had had enough of my life being ruled by this "thing". I shaved my head, and I haven't pulled since that day. Spending time out and about with my patchy bald head on show was liberating and almost a relief. Every time someone asked me the inevitable question of why I shaved my head I used it as an opportunity to open up a conversation about the disorder.
Trichotillomania is a Body-Focused Repetitive Behaviour (BFRB): some of the most common yet least well known mental health disorders. 3-5% of the population* are estimated to be dealing with one, which is 2 in 50 people.
BFRBs are a cluster of conditions characterised by repetitive and compulsive self-grooming behaviours that damage the body. They include:
- Trichotillomania (hair pulling)
- Dermatillomania/excoriation disorder (skin picking)
- Dermatophagia (skin-biting)
- Onychophagia (nail-biting)
- Tricophagia (eating one's own hair)
- Rhinotillexomania (nose picking)
These disorders are extremely complex, differing from ordinary grooming behaviours in that they cause a person distress and have a profound effect on their ability to function.
Upon engaging in the behavior, people report feeling an alleviation of stress or anxiety. In hindsight, I can see that I developed BFRBs at an extremely stressful time in my life. Perhaps they began as a self-soothing mechanism, or a means of asserting bodily autonomy when I felt I had none, or maybe an attempt to control just one aspect of my chaotic-feeling world.
Currently, trichotillomania and dermatillomania/excoriation disorder are the only BFRBs included in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), currently classified as falling within Obsessive-Compulsive and Related Disorders. BFRBs are different from Obsessive-Compulsive Disorder (OCD) because they are often carried out unconsciously such as when lying in bed, driving, or reading a book.
BFRBs can begin at any age, but typically between the ages of eleven and fifteen.* Research points towards a genetic predisposition, with external stressors making the disorder more likely to materialise.
The effects of these disorders are manifold in that not only do they harm one's body, sufferers also report feeling ashamed and embarrassed about it. Because of the psychological effects of dealing with these disorders, people with them are susceptible to comorbid disorders such as depression and anxiety.
BFRB Awareness Week and treatment options
The TLC Foundation is a non-profit organisation that strives to increase awareness of BFRBs and provide support for people with them. For the first week of every October the foundation uses campaigns, events, and fundraisers to get the message out that these disorders are extremely common and that there are treatment options available for sufferers.
"It was a truly life changing experience to attend a conference with 500 people with exactly the same "thing" as me. I no longer felt alone, isolated, and shameful."
Upon reviewing the latest clinical research and information, the Scientific Board of The TLC Foundation for BFRBs has provided guidelines for treatment options. Many of the recommended treatments are variations of cognitive behavioral therapy, designed to make a person more aware of their triggers, stressors, and emotions. As well as this, support from family, friends, and a community are factors that are likely to make treatment more effective.
Having spoken internationally at conferences about her experience with the disorder, Thatcher runs a support group for BFRBs in Central London and volunteers with The TLC Foundation. "The BFRB community has impacted my life in such a positive way", she says. "It was a truly life changing experience to attend a conference with 500 people with exactly the same "thing" as me. I no longer felt alone, isolated, and shameful. I have made so many friends who I consider my family for life."
Whilst there is no overnight miracle cure for BFRBs, there are things that people dealing with them can do. "Coping with body-focused repetitive behaviors like hair pulling and skin picking disorder can be frustrating and overwhelming", says The TLC Foundation. "Whether you have a BFRB or you love someone who is affected, TLC is here to help."
Thatcher reports that the ability to be able to talk with friends and family about trichotillomania has been life-changing: "to be open, honest, and not have to hide anymore. I no longer perceive my BFRB as a source of shame and guilt. I see it as a chance to learn, be compassionate, help others, and give and receive love and support".
I'm well aware that I may relapse: but this possibility doesn't seem so terrible now I know I wouldn't have to deal with it alone.
"I hope people would treat anyone with a BFRB with compassion and kindness, approaching them in a non-judgmental way", says Thatcher. "We deserve love and understanding like everyone else".
No one should - or has to - suffer with a BFRB unsupported.
If you are suffering with a BFRB, The TLC Foundation's free Getting Started Guide [available here] provides an overview of the resources they have, as well as answering some frequently asked questions. It is a great place to begin to help you begin recovery.
Visit The TLC Foundation for BFRBs here http://www.bfrb.org/
*Figures from the TLC Foundation