I’m a compulsive diarist, but I’ve never put my secret down in writing. Writing has helped me regain control | Adel Dumont

WWhen I started pulling out my hair as a teenager, I didn’t see it as a problem, let alone a disease. It didn’t occur to me that anyone else was doing what I was doing. Little did I know then that this seemingly innocent gesture would come to define and consume me for the next twenty years.

From the beginning I have kept my features secret, although that word suggests something duplicitous, or at least deliberate. My secrecy wasn’t a conscious decision: it was just the way things were, just as choosing which hair to pull next wasn’t thought out or calculated, but something more like instinct; a knowing.

Removing individual hairs always felt so insignificant that there was usually no visible change before or after an episode. But over time, very surprising areas without hair would emerge.

I didn’t like the way my features made me look, nor the lengths I had to go to to hide the damage I had done. But if my appearance or my growing sense of isolation caused any fear, all I had to do was flutter my hands up and within seconds I could find respite. Because when I pulled, these worldly worries disappeared. Time itself dissolved. My usual nervous thoughts could be quieted and I could be calmed.

When I finally discovered that what I was doing had a name, I don’t remember feeling much comfort or kinship. Instead, I was irritated, as if I had been cheated. How dare these other people invade this space of mine and claim it as their own!

Over the next few years, I read my way through the clinical literature and became a clandestine researcher of my dark condition. ‘Trichotillomania’ is derived from the Greek words for ‘hair’, ‘pulling’ and ‘madness’, and the behavior has been described since ancient times. The disease is associated with frequent, repeated and irresistible urges to pull hair from the scalp, eyebrows, eyelashes or other parts of the body and has an estimated prevalence of between 0.5% and 2%, making the disease relatively common .

Feelings of intense shame, a hallmark of this disease, often cause people to hide their traits, even when it becomes debilitating. The average patient waits 11 year to continue treatment, which typically involves some form of cognitive behavioral therapy. The first controlled studies of trichotillomania only occurred relatively recently, and to date no treatment method has ever produced consistent and reproducible long-term results.

I have learned so much about my illness, but this knowledge has done very little to weaken its hold on me.

The idea of ​​writing all this down occurred to me in what I could only call a visit. This was not hallucinatory or delusional; my particular madness is not of that nature. It was just something that had to be done. At the time, I was hunched over on the bathroom floor, completely at the mercy of my compulsions. Maybe an hour – or three? – had expired. And I understood, there on the cold tiles, how far my life had come from the ordinary scope of human experience. If anyone saw me in this state, I knew I would appear incomprehensible – more of a creature than a person. I desperately needed to shape this reality outside the container of my own mind.

But when it came time to quit, I couldn’t do it. I am a compulsive diarist, but I have never put my secret down in writing, never even hinted at it. I wanted to write, but I also wanted to hold tight to the trapped, condensed power within me.

Trying to put into words the experience of my illness was so difficult and gradual that it was sometimes difficult to trust that I was really to create something. But eventually things started to fall into place and very surprising zones of prose emerged. In other words, both the drawing and writing processes were constructive and piecemeal, but they moved in opposite directions.

“I still don’t know what recovery looks like, or even how I could measure something like that.” Photo: Elisabetta Diorio

The more I wrote, the more I felt like I was regaining control. I was so used to being held captive by my illness, to having it structure and dictate my choices, that it felt good to be able to try to capture it, to give it structure. A way to power and a kind of weak revenge, I guess, despite all it stole from me.

I still don’t know what recovery looks like, or even how I could measure something like that. I know I’m not “better”. I’m still pulling. I don’t pull as much as I used to, but I still pull a lot no matter what. My life hasn’t gotten any easier; Maybe I’m just no longer surprised at how hard this life can be.

I always thought that a disease like this would have an arc, like a story, with a climax, running its course and reaching its natural logical conclusion. “When I returned to myself every morning,” Leslie Jamison writes of her alcoholism, “the groove of want had only grown deeper, more stubbornly etched—like a skip, skip, skip in the song.”

Now I wonder if I was indeed closer to a conclusion at the beginning of my illness, when the pathological grooves of my mind were not yet so deep. I have always tried to recover from the beginning – if trying to recover means trying to stop, or trying to get back to the state it was in.

More and more I see recovery as a myth: perhaps there are no boundaries to be crossed; there are no magical transformations from one state to another. Perhaps what has come before will be enveloped and contained within us, in the manner of rings in a tree. If you were to cut through my future self, who I sometimes still imagine—she who has long, dark, silvery curls—you would find the self that had not yet overcome her need to keep escaping. temporary flight.