My OCD made me feel like my brain had been taken hostage

I am eight years old and in the supermarket aisle with my twin sister Sofia beside me – our mother is elsewhere in the shop. I do a pirouette to the right.

Then my childlike brain tells me I have created “a mess”. Even today, I can recall the anxiety, the fear that something terrible is about to happen until I balance everything up. My mind won’t go quiet until I do a pirouette to the left. Only then, can my worry recede.

For as long as I can remember, I have shown signs of OCD, or Obsessive-Compulsive Disorder. This condition has put me through years of utter hell. But, it has also brought me to where I am today; studying for a PhD at Cambridge University, where this weekend I will be standing up to tell a lecture-room full of strangers about my experience.

As a schoolgirl in Milan, where I grew up, I was sensitive and emotional. If my mother, a teacher, told me not to do something, I would shout: “You don’t love me, then!”. Then I would feel the need to apologise hundreds of times to make sure she did still love me.

I had quite a few tics and had to touch objects such as shelves and walls to stop “bad things” happening. Common childhood traits, you might think, but my twin sister didn’t do anything like this.

The situation got worse as I moved through school. I would set my alarm at 4am, so I had enough time to get ready to leave for school at 8.30. If I didn’t do things slowly and perfectly – pull on my socks and my jumper just so – my world would fall apart in a way I wasn’t quite able to define. 

My parents started to worry, and eventually it was my father, an accountant, who took me to a child psychologist. I was relieved, in a way. I felt there was something wrong with me that needed to be fixed, though it was also upsetting to be doing something, for the first time, without my twin. 

But the doctor simply told us that I was a “normal”, clever child –  and there was nothing wrong with me. Hence, when my behaviour continued, my parents simply thought I was being difficult – and I don’t blame them for this. But deep down, I was angry and frustrated.

My OCD symptoms subsided for a few years. But in my late teens, they came back with a vengeance. Many people might think that OCD is just about tidiness or cleanliness. And while the compulsion to wash your hands hundreds of times a day certainly exists for some, and can be deeply distressing, it was the repetitive, intrusive thoughts that were so awful for me.

I remember one morning in 2013, getting on a crowded bus to school. I became convinced that if I touched anyone on this bus – with my backpack, my shoes, or my jacket – something terrible would happen to them.

As the bus was packed, this was impossible to avoid. My brain told me the other passengers would be hit with a car, killed – even raped: the most terrible, gruesome images, in lurid detail. Even though my rational self told me these weren’t real, the thoughts were obsessions that wouldn’t go away.

I’d sit at my school desk, frozen in terror, unable to concentrate on what the teacher was saying – it was as if my brain had been taken hostage by the thoughts.

From that day, the OCD was constantly shouting in my head, every day, every minute, like the worst enemy. So intrusive were these thoughts, often of sexual violence happening to me or other people – that it was taking me an hour to finish reading a page of my book. 

This was really upsetting for someone who adored studying. But somehow, I struggled to pretend to the outside world everything was ‘fine’, which in itself was exhausting. 

I had very few friends in high school – even during normal conversations, I had these terrible images going through my head. I remember one girl calling me “weird”. I used to confide in Sofia, who was always very protective of me. Throughout our childhood, she tried to protect me from anything that could hurt me including “toxic” people.

By this point, I had started cognitive behavioural therapy (or CBT) which was meant to help me manage the OCD by encouraging me to think “realistic” thoughts. However, like the doctor I’d seen during my childhood, this psychologist did not know how to treat OCD. 

At university, my symptoms abated quite considerably – possibly because I was happier in this new environment. I performed well and won a place to study for a masters in Clinical Mental Health Sciences at University College London.

It was my dream to move to London, and when I did so in September 2019, at the age of 23, I was at my peak of happiness. I thought my story of OCD was over.

But this was not to be. After a few weeks in London, I was back in the cage. I started to “see” the most horrific, vivid images of a man violently attacking me. I would walk the streets with my body stiff on hyper-alert and my arms wrapped around me in defence, to stop these attacks happening. I said to my brain: “these things are not happening”, but the thoughts simply wouldn’t stop.

Back then, I couldn’t explain why many of my intrusive thoughts had a violent, sexual element, but later, as I studied the condition, I learnt that this is what the OCD does: it develops around the unique vulnerabilities of the individual, turns them into their worst nightmare, and uses their brain against them.

I decided I needed to find meaning in this constant suffering – that I was going to make lemonade out of lemons – and I was going to dedicate my career studying OCD. But my illness did its best to derail this, with one of the most frightening episodes of all.

I was in a lecture one day, when I started to “hear” the thoughts, hectoring me that I was not loveable, that I was too ill to make it. Terrified I was having a psychotic episode, I ran out of the lecture in a panic and called my mother.

The university sent me to a GP who gave me sertraline – an antidepressant which has been shown to also help people with OCD – and set me up with 12 psychotherapy sessions. Then, we decided I would slow down and spread my course over two years instead of one.

Finally, after all these years, I felt I was getting proper treatment. With my new therapist, I learned the main trick to weakening the OCD. I was to simply “accept” every image thrown at me, the trick was not to react to my thoughts.

OCD is like being in quicksand: the more you struggle, the deeper you will sink. People are trapped by their frantic attempts to escape. So I decided I was going to starve the monster.

And now, this girl who was terrified even of getting on the school bus, is in the middle of doing a PhD at Cambridge at the age of 28. When I found out I was accepted, it was as if all the pieces came together. I’m now working with the most brilliant researchers in the world, in conjunction with Orchard OCD, looking at new ways of treating OCD, including the drug psilocybin and magnetic stimulation of the brain.

In Autumn 2022, I met the most wonderful new man – Matteo, a lawyer seven years older than me. I told him about my OCD almost immediately: he has been incredibly supportive, reading books and scientific papers on the subject, so he could better understand.

OCD has taken me through pure hell but has also affected my life in an unexpectedly glorious way. Today, I am doing well. I am one of the 60 per cent of people who respond to the current treatments for OCD, and I am grateful.

I feel strong and independent, and I am going to dedicate the rest of my life and career to helping the 40 per cent, who live with these terrible thoughts and images shouting in their heads. Just by speaking out, I hope I can help the rest of the world begin to understand.

As told to Miranda Levy

Margherita Zenoni is speaking at the Cambridge Festival, organised by the University of Cambridge, which runs until Thursday 28^th March; cfr.cam.ac.uk