I’m a compulsive journal writer but I’d never mentioned my secret on paper. Writing helped me regain control | Autobiography and memoir

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When I began to pull my hair out as a teenager, I didn’t conceive of it as a problem, let alone as an illness. It didn’t occur to me that anyone else did what I did. I couldn’t have known, then, that over the coming two decades this seemingly innocuous gesture would come to define and consume me.

From the start, I kept my pulling secret, though that word suggests something duplicitous, or at least intentional. My secrecy wasn’t a conscious decision: it was simply the way things were, in the same way that selecting which individual hair to pull next wasn’t considered or calculated but something more like instinct; a knowing.

The removal of individual hairs always felt insignificant enough that there was mostly no visible change perceptible before and after any one episode. But over time, whole startling zones devoid of any hair would emerge.

I didn’t like the way my pulling made me look, nor the lengths I was obliged to take to conceal the damage I’d done. But if my appearance or my growing sense of isolation triggered any anxiety, my hands had only to flutter upwards and, in seconds, I could find reprieve. Because when I pulled, these worldly concerns dissolved. Time itself dissolved. My usual jumpy thoughts could settle and I could be calmed.

When eventually I learned that what I did had a name, I don’t remember feeling much comfort or kinship. Instead, I was annoyed, as though I’d been cheated. How dare these other people intrude upon this space of mine and claim it as their own!

In the coming years, I read my way through the clinical literature, becoming a clandestine scholar of my obscure affliction. “Trichotillomania” is derived from the Greek words for “hair”, “to pull” and “madness”, and the behaviour has been described since ancient times. Involving frequent, repeated and irresistible urges to pull out hair from one’s scalp, eyebrows, eyelashes, or other areas of the body, the illness has an estimated prevalence of between 0.5% and 2%, which makes it relatively common.

Feelings of intense shame, a hallmark of this illness, mean people will often hide their pulling, even when it becomes debilitating. The average sufferer waits 11 years to pursue treatment, which typically involves some form of cognitive behavioural therapy. The first controlled trials for trichotillomania only occurred relatively recently and, to date, no single method of treatment has ever produced long-term, consistent and reproducible results.

I have come to know so very much about my illness but this knowledge has done very little to weaken the grip it has over me.

The idea to write any of this down came to me in what I can only think to call a visitation. This wasn’t hallucinatory or delusional; my particular madness is not of that vein. It was simply a thing that had to be done. I was hunched over on my bathroom floor at the time, completely at the mercy of my compulsions. Maybe an hour – or three? – had elapsed. And I understood, there on the cold tiles, just how removed from the ordinary scope of human experience my life had become. If someone saw me in this state, I knew I’d appear incomprehensible – more creature than person. I needed, desperately, to give this reality some form outside the container of my own mind.

But when it came time to buckle down, I couldn’t do it. I am a compulsive journal-writer but I’d never mentioned my secret on paper, never even alluded to it. I wanted to write but I also wanted to keep tight hold of the closeted, condensed force within me.

Trying to put words to the experience of my illness was so painstaking and so incremental a process that it was sometimes hard to trust I was really creating anything. Eventually, though, things did start to fall into place and whole startling zones of prose emerged. In other words, both the pulling and the writing processes were accretive and piecemeal but they moved toward opposite ends.

‘I still don’t know what recovery looks like, nor even how I might measure such a thing.’ Photograph: Elisabetta Diorio

The more I wrote, the more I began to feel I was regaining control. I was so used to being held captive to my illness, to it structuring and dictating my choices, that it felt good to be able to try to capture it, to impose structure over it. A way to come into power and a kind of weak revenge I suppose, for all it has stolen from me.

I still don’t know what recovery looks like, nor even how I might measure such a thing. I know that I am not “better”. I still pull. I don’t pull as much as I once did but I still pull a lot, by any measure. My life hasn’t got any easier; maybe I’ve just ceased to be surprised at how difficult this life can be.

I used to think a disease like this would have an arc, like a story does, with a climax, would run its course and reach its natural logical conclusion. “When I returned to myself each morning,” writes Leslie Jamison of her alcoholism, “the groove of lack had just grown deeper, more stubbornly etched – like a skip, skip, skip in the song.”

Now, I wonder whether I was in fact closer to a conclusion at the start of my illness, when the pathological grooves of my mind were not so deep. I have always, since the start, been trying to recover – if trying to recover means trying to stop, or trying to return to the state that was.

More and more, I think of recovery as a myth: perhaps there are no lines to be crossed; there are no magical transformations from one state into another. Maybe whatever has come before gets enfolded and contained within us, in the way of rings in a tree. If you were to slice through my future self, who I still sometimes imagine – she who has long, dark-and-shot-with-silver curls – inside you would find the self who hadn’t yet overcome her need to keep escaping into temporary flight.

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