Not lighthearted craziness, or a comic disorder of the mind: what it’s like living with OCD

My mind is full of scorpions. Devious, nimble little beasts that have occupied my head for the best part of 30 years. A cerebral itch, impossible to scratch. They wield their own special power over my brain, shaping the architecture and rhythm of my thoughts. An immovable nest, weighing heavy in my skull. I know these creatures well, but they know me better. I am their dutiful puppet, stuck inside an endless loop of sleepless nights and watchful days.

They answer to another name, this nest of scorpions, the writhing black mass that lives inside my head: obsessive-compulsive disorder.

OCD is a mental illness that affects about 2% of the global population, but the proportion of people touched by it is far higher. A condition that causes obsessive, unwanted thoughts and repetitive behaviour known as compulsions, it is often described as a “silent” illness, carrying with it a lot of shame, stigma and misconception. It is common, and relatively easy, for sufferers to disguise or hide it due to the internal nature of the intrusive thoughts and the embarrassment brought about by irrational or unusual compulsions.

As a society, we often classify certain mental health disorders as less acute than others; OCD is one of them. It is still trivialised by the media, and many people falsely believe that it can be filed under a personality type characterised by traits or quirks such as liking things to be clean or being concerned with order. There is a plethora of novelty merchandise available, branding their owner as “a little bit OCD”. I have a coffee mug that I received as a Christmas present many years ago in my own kitchen cupboard that has the words “obsessive compulsive” emblazoned across it in bright pink letters. It is hard to imagine a line of gift items with anorexia or PTSD boldly stamped upon them for all to see. So why is OCD continually used as a shorthand for lighthearted craziness, or categorised as one of the more comic disorders of the mind?

The truth is that this condition can devastate people’s lives, leading to job loss, relationship breakdown and total isolation, as well as, in more severe cases, suicide. Diagnosis is often reached much later than it should be for numerous reasons, be that social, cultural or familial. From my own experience I know that it was a condition my family and I had heard very little about when I was growing up, let alone felt able to seek help for. Thankfully, the conversation around mental health has opened up a lot since I was a child, but to me it feels as though OCD is still relatively misunderstood, under-researched and has fewer treatment options than other mental health conditions such as anxiety or depression.

Tuppence Middleton alongside Laura Carmichael in Downton Abbey. Photograph: Entertainment Pictures/Alamy

For almost as long as I can remember I have struggled with obsessive thoughts, checking compulsions, and an extreme fear of vomiting, manifesting and evolving in different ways at each stage of my life. This took root when I was 11 and had to stay off school for months with chronic fatigue syndrome. It started with my favourite number, 16, which as all children are aware can be divided into eights, fours and twos – all even, rounded numbers. But it was the eights that interested me most, and I started to see them everywhere. The fingers on a pair of hands fascinated me, while the thumbs faded into soft focus. My eyes would seek out a constellation of eight small freckles on a stranger’s arm. Each time the world around me filled me with fear, I heard the encouraging hum of the scorpions telling me to count. This silent counting kept the swelling panic at bay. At first it was the corners of rooms, the edges of mirrors, the frames of doorways.

One, two, three, four, five, six, seven, eight.

Each corner had its own dedicated count. All eight numbers were given their due weight and time before I moved on to the next “unclean” corner, waiting to be baptised by my routine. The looming threat of corners and edges soon became bigger: pillows, curtains, TV screens, textbooks, light switches, pieces of toast.

Everything needed to be organised and contained by the number eight. My blood would bubble and a feeling like a wave rising in a tsunami would build inside my chest, only to be stopped by the incessant counting.

Dark thoughts threatened to punish me for any noncompliance…

If you don’t finish the count, your parents will die.

If you don’t finish the count, the house will burn down.

If you don’t finish the count, you will be sick.

Sticking to my silent counting rituals in order to quell the panic that surged in my chest, I managed to carry on with life in an outwardly normal fashion until the night my mother discovered me on the landing, midway through one of my self-imposed routines. She took me to visit our family doctor, the first of many visits throughout the blur of my secondary school years. Therapy was naturally one of the first suggestions made by Dr G, but the idea of it scared me, making me feel like I had failed at the simple task of being normal. Later, he suggested antidepressants. I exchanged a look of barely concealed terror with my mother, before reassuring him: “I’m not depressed, I just can’t stop doing these routines. I don’t want to take any tablets.”

A young Tuppence Middleton shortly before she became ill with chronic fatigue syndrome. Photograph: Courtesy of Tuppence Middleton

Dr G was a quintessential, doctorly mix of utter kindness and cold, hard realism as he told me: “It’s actually very common that antidepressants are prescribed for your condition: they alter the way different parts of the brain communicate with each other, and the way in which obsessive compulsive disorder interrupts these processes.”

Obsessive-compulsive disorder. It felt strange to hear it said aloud so flippantly. Until then we had largely referred to it as my “routine”. The words seemed to reverberate around the room, bouncing off each of the corners I was doing my very best not to count. On the short journey home, my mother and I agreed that it was the right decision to refuse the tablets. Medication was meant only for the severely mentally ill, the desperately unhappy or hardcore drug addicts – and I was coping just fine, we concurred. Everyone has their little quirks… Mental health was almost never talked about in our house – or any other house that we knew of, for that matter.

As I crept towards the end of my school days, I managed the condition relatively well, but because OCD thrives in solitude, intimate friendships were something of a minefield. Group gatherings, sleepovers, school trips were all things that I resolutely avoided. I still observe large friendship groups like a detached cat watching a swarm of bees.

When I left home for drama school in London, where I had opted to share a house with three young men during my first year, I had hoped the move might rid me of my compulsive rituals for good. I had hoped that it was habit born of a time and place that I had now left behind. However, the routines travelled with me.

The routines developed. They became longer and more complex, which often made me late leaving the house. Late attendance to our course was tolerated on a “three strikes and you’re out” basis, so there was a particularly all-consuming kind of pressure that accompanied my ritualistic checking in the first year of training.

My routines or compulsions centre (and have always centred) on two main points of focus: home environment and illness/death. A typical thought/behaviour cycle I experienced often went something like this:

I’m standing in the middle of my kitchen and am already 10 minutes late. But if I perform the routine one more time, then this feeling of impending doom might just go away long enough for me to get out the front door. I hold my hand palm-up beneath the tap, staring at the empty space where running water would usually flow. It’s definitely off. Can I feel the water? NO. Can I see it? NO. Can I hear it?

With her partner, the director and screenwriter Måns Mårlind, in 2022. Photograph: Karwai Tang/WireImage

I close my eyes for a moment. I open my eyes again and everything remains the same, not least my belief that somehow the tap is still running at full flow into the sink. I look. I count. I’ve lost track of the minutes I’ve been standing here.

I move to the cooker. The gas is off. I know it’s off. But gas is invisible, so how do I know it isn’t slowly leaking into every room of my house and I won’t die of suffocation in my sleep later tonight?

In the midst of these thought cycles I might send a quick message to my agent/friend/family member to say I am running late. Transport issues, I’d say. Now I would have to start my routine again. I look at the various enemies occupying my kitchen: door, tap, cooker, fridge, light switch.

I’d promise myself this was the last time. After all, I’d still have more rooms to check before I could leave.

One, two, three, four, five, six, seven, eight.

One, two, three, four, five, six, seven, eight.

The counting happens almost without thought or intention now. It is so ingrained, so practised, that I can perform it in a kind of standby mode.

After drama school it became obvious that three years is not long enough to learn how to become an actor. You spend your entire career learning, as you spend your entire life learning how to become a human being. Each year of my training I learned new skills, new processes, but I also learned how to pretend beyond the confines of acting. To pretend I was calm or composed. That there wasn’t a nest of scorpions living inside my brain. It is an exhausting way to function, to constantly hide a part of yourself that is so intrinsic and unappealing. I have no doubt that I am a better pretender than I am an actor, so adept at moving through life undetected that I can almost convince myself that the scorpions are not there.

But they are there. Meddling, goading, rewarding.

I decided it was time to attempt to kill them. The year after drama school I tried an NHS-prescribed course of cognitive behavioural therapy, during which I ticked all the right boxes and agreed dutifully, when asked if the sessions were helping, giving the performance of my life as a young woman who was overcoming her compulsive behaviour and disordered way of thinking. I couldn’t bear to disappoint my enthusiastic young therapist by telling her the simple truth. That I was scared of what it might require of me to make myself better, and that I didn’t feel that this kind of logic-driven, behaviour-focused approach was the right fit for me. And so, after a block of eight arduous sessions, I was discharged from her care and my GP was informed that the treatment had been successful. Case closed. Or so they thought.

The next attempt came three years later, when my anxiety increased substantially and the physical effects of that began to take their toll on my body. I was living alone at the time and finding it impossible to get any sleep due to the panic attacks I was experiencing on a semi-regular basis. However, I have always been one of those frustrating people who waits until the headache is almost blinding them before they take a painkiller. So, I waited until the physical effect of anxiety – the rapid heartbeat, the breathlessness, the chest pain, the stomach cramps, the insomnia – became unbearable, and decided to return to the solution that had been offered to me by Dr G as a teenager.

Initially I was prescribed a strong anti-anxiety medication, diazepam. Then I began taking an antidepressant called fluoxetine, commonly known as Prozac. When it eventually kicked in, as Dr G had predicted, I felt calmer, more in control, less enslaved by the scorpions. I could sleep through the night and my panic attacks stopped completely. I felt stabilised for the first time in a long while.

Although my physical symptoms had improved, I was still aware of a hum of activity continuing inside my head. Just because I couldn’t see or feel the effects of the scorpions, it didn’t mean they weren’t still there, chipping away at my neural pathways, weaving new and complex thoughts into the bedrock of my brain. So after a blissful two years of feeling something close to normal on the outside, I decided to take advantage of this momentum and put everything into attacking my little monsters from the inside too with psychotherapy.

In British thriller Trap for Cinderella (2013).

As I sat in the chair and my therapist listened and shared and suggested, I realised that I had for most of my life underestimated the power of talking. As this slow and steady process began to blunt the pincers and neutralise the stings, my therapist suggested making steps towards coming off my medication. I felt daunted by the idea of saying goodbye to my crutch and fending for myself again. Would the panic attacks come back? Would talking about my scorpions really be enough to keep them at bay?

Within six months I had stopped taking the drugs, which I attribute to continuing therapy at my own pace while slowly lowering my dosage. The scorpions were still there, but my mind was no longer a cramped and festering mass, rather an open passageway for the scorpions to pass through. Sometimes there are more than others, sometimes I don’t feel them for weeks on end, and sometimes there is a blockage – a lone scorpion stuck in the outer reaches of my mind, leading all the others to the same place until the pressure builds and I must find my own ways to set them free.

In Hindu tradition scorpion bites are known to have been treated by the recitation of mantras. There is a special mantra that consists of counting from 100 back to one, then repeating the whole count 108 times. Allegedly, this mantra is said to work solely on Holi or Diwali festival days, or during solar or lunar eclipses. Only an obsessive can appreciate how satisfying this kind of specificity can be…

My rituals and routines function in much the same way as these mantras. Through counting or checking or touching, I soothe the anxious energy in my body and calm the negative thoughts until that thrumming swarm is reduced to a distant scuttle. When the rituals don’t satisfy my obsessions, then I take photographs – of taps, of cookers, of other dangers – to assure myself. When I can’t assure myself, I look to others to reassure me. When I can’t be reassured, I wash my hands, I avoid people, I don’t leave the house, I invent a new routine, a new bargain, a new unpleasant thought. And when the nest overwhelms me again, I return to my role as therapee.

Treatment is an ever-evolving process, as different for each person as it has been for me at every stage of my life with OCD. Each avenue has provided me with a new way of approaching those days when everything feels stuck. A sense of relief that there is help out there, however the scorpions choose to surprise me. It is just a matter of asking for it.

• This is an edited extract from Scorpions: A Memoir by Tuppence Middleton, published by Rider, an imprint of Ebury Publishing (£18.99). To support the Guardian and Observer order your copy at guardianbookshop.com. Delivery charges may apply