Having spent 30 years researching various neurological and psychiatric disorders, I’m beginning my journey to understand the one that’s been with me all along."
I can tell you how that feels, because I’ve felt it almost every day since I was 12 years old. No matter how apparently successful I might be in life, and how many mountains (literal and metaphorical) I might have climbed, trichotillomania kept me feeling fundamentally weak, stupid and ashamed.
Trichotillomania (trich) is characterised by an uncontrollable urge to pull out your hair; most often from the scalp, eyelashes and eyebrows, but it can be anywhere on the body. We all know the expression ’tearing my hair out’ to describe the feeling of exasperation when facing something deeply frustrating and difficult, and there are historical references to hair pulling being associated with emotional turmoil going back to Aristotle and Hippocrates. The ridiculously unapproachable term ‘trichotillomania’ was coined in 1889, and although reference to it crops up from time-to-time in the medical literature, it was not recognised as a formal disorder until 1987, when it was categorised as an ‘impulse control disorder not otherwise classified’ in the diagnostic manual for psychiatric disorders (DSM-III-R). The current version of this manual (DSM 5) has moved trichotillomania to sit in the obsessive-compulsive disorder chapter, where I think it’s a bit lost.
One of the major reasons we don’t have better data is that these behaviours are often hidden.
Trich is one of a family of disorders called ‘body focused repetitive behaviours’ (BFRBs) which are under-researched and poorly understood. Other examples are dermotillomania (skin picking) and onychophagia (nail biting). I suffered all three, although it was always the trichotillomania, and particularly my eyelashes, that caused most distress. Almost everyone engages in some nail biting, skin picking and hair pulling, but this becomes disordered when it is uncontrollable and causing distress. Estimates vary, but perhaps as many as 1-5% of people engage in these behaviours to an extent that causes significant distress. One of the major reasons we don’t have better data is that these behaviours are often hidden. I know from internet support communities that many people suffer in silence; not even feeling able to tell their spouse or closest friends. Those few who muster the courage to seek treatment find that GPs and other healthcare professionals have usually not heard of the disorder and don’t know how to help. This feeds a pervasive sense of helplessness, and a lot of hidden suffering.
© Clare Mackay
Stigma and shame
Stigma and shame are rife in mental health disorders, and while high profile campaigns are doing a good job at chipping away at stigma, there is still much work to do to alleviate shame. Shame is now recognised as a cause as well as a consequence of mental health disorders. It is an emotion that people don’t like to think or talk about. Indeed, shame is, in itself, shameful.
Compulsively pulling out your own hair causes a huge amount of toxic shame.
Stigma and shame both arise from social fear and operate on the same basic human need for connection. Stigma is externally constructed (“you are weird/different and do not belong with us”) and shame is internal (“I do not belong and am not worthy of connection”). Both have sensible evolutionary functions for social animals, but both can be highly toxic to an individual.
Compulsively pulling out your own hair causes a huge amount of toxic shame. ‘Why don’t you just stop’ is the message we are given and give to ourselves. Anyone who suffers from compulsions or addictions will tell you that this message only causes more shame. In addition to the social anathema of deliberately making yourself less attractive, the notion that behaviour might be beyond cognitive control is not understood or accepted in our culture. I lived under a cloak of shame for nearly 40 years. My shame told me I was weak and stupid for not being able to control my hair pulling, and that I was ugly as a result. I also absorbed the message that it’s not a big deal, just a ‘bad habit’, which served to invalidate the very real distress that I lived with. I was lucky to find a therapist who combined compassion-focused and schema-based therapy to help me step out of the shame, and without it I find that I’m able to think about my compulsions in a ‘problem-solving’ way for the first time.
Where do I go from here?
Having spent 30 years researching various neurological and psychiatric disorders, I’m beginning my journey to understand the one that’s been with me all along. I’m exploring new (to me) corners of epidemiology, systems neuroscience, computational psychiatry, psychopharmacology, psychology, anthropology, immunology etc. I am curious about the specificity of body focussed compulsions within individuals, and the strong sensory drivers.
I hope that having found a way to emerge from under my cloak of shame, I might be able to find a way to help others do the same.
My inclination is that we might learn more about body focussed compulsions from addiction than from OCD or anxiety, but we’ll see. I also think we need a rebrand. The old unpronounceable and stigmatising names need to go. My own experience is that shame was a strong maintainer of trich – it kept me trapped in a vicious cycle. I hope that having found a way to emerge from under my cloak of shame, I might be able to find a way to help others do the same.