Life with OCD: an anti-memoir

By Andrew K Kauffmann @JKaye82


Listen to the piece in full:

What is a man? A miserable little pile of secrets.’

André Malraux, Anti-Memoirs (1967)

AUTUMN 2023, MADRID

I recently opened up to a close friend about my OCD. It was on the day I accompanied her to a hospital where she’s receiving intensive treatment. She talked to me about her physical health, and I talked to her about my mental health. Sitting at a terraced cafe in the evening sunshine, I explained how I’d been living with OCD since the age of nineteen. We shared other intimacies.

She listened attentively. I noticed how in describing my health – my mental health – I was self-censoring my story of obsessive compulsive disorder. Observing the umbrella pine trees of Madrid’s Parque del Oeste, not far from our apartment block, I paused to swig my Clara lemon beer. It felt safer to travel backwards, to September 2001. The week before the twin towers were attacked, I began experiencing obsessive thoughts and intrusive images.

 

SEPTEMBER 2001, ON HOLIDAY

As my family and I travelled on the airport bus one morning, I was consumed with a repugnant thought. It was a thought which, from one day to the next, seemed to suddenly appear. Repellent, and far too personal, to say that these thoughts were classed as ‘forbidden’ is, if anything, an understatement. I was thinking about things you simply mustn’t think (or do).

We were in Cyprus, thanks to Dad, who was doing his best to help us stick together after Mum’s terminal illness. I couldn’t let him in, or my two sisters, and worst of all, I couldn’t even confide in myself. There was no refuge the week the first obsessive thoughts littered my mind, only the pretence that I was ‘fine, just fine’.

I’d come down on time to the breakfast buffet and drink some juice. I’d get into my swimming trunks, and lie on a beach towel, for a bit. Anticipating the intrusive thought – or was it an impulse? – heightened my anxiety. I’d eat my food, sleep a little, but every waking second seemed to be occupied with the idea that I might be… I might be… I could hardly articulate the word. I wasn’t aware, not then, that this terrorising thought might be a feature of OCD.

 

AUTUMN 2023, MADRID

I took another sip of my beer and lemonade. My friend waited for me to continue. We’d been close enough in the hospital’s radiotherapy waiting room, so I reckoned I could open up here.

“I’d get the thought when I was standing too close to the edge of a platform. When I’d travel on the tube. I used to always have to stand back, close to the wall. Not just in the way any of us might, you know, someone who’s commuting —”

My friend didn’t divert her gaze, but still, I quivered.

“…I always had this intrusive image that someone was going to push me in front of a train, or that I might push them.

What was I engaged in? Why the sudden need to expurgate, here, on the night she was telling me about her illness and her side effects? Why the sudden need to claim this illness as a badge, as some extension of my life story and personality?

I have heard people who don’t have OCD express a fleeting fear of being pushed (or pushing someone) in front of a train. The hallmark of someone with OCD is that they take the image with them, first as they settle in their seat on the tube, then as they change trains, and as they continue with their commute. They can’t unthink it. Their brain swishes and swashes like a washing machine.

There were other ruminations I could share, none of them in the slightest a comforting counterbalance to this first obsessive image. They’re images that can disrupt a friendship, and possibly even ruin it. I could have recalled the ruminations that in February 2002 had me traipsing along the River Cam, dazed, not planning to take my life, and not desiring that as an outcome, but wondering what it would mean were I to carry on: what I’d need to endure. How carrying on would mean continuing to be pained by unspeakable thoughts and images, whilst trying to complete a degree at university.

“I know they’re not things I’m going to act on,” I continued. “They don’t represent what I want. That’s the thing about them. The thoughts represent something you really hate.”

In the pit of my stomach I wanted to underline how disturbing obsessive thoughts can be. Contradictorily, in my chest and in my head I weighed up how prudent this conversation was, and whether to downplay my OCD. My friend looked at me sympathetically. I guess she didn’t need to see me pleading like this. On the horizon: the indigo-coloured Guadarrama mountains fading into the night sky. Close up: an instinct that it was high time I asked for the bill.

***

I felt open enough to disclose that I had a mental health condition, and indeed that I would write about it in this residency, but ultimately I stopped short in detailing the scale and pervasiveness of my OCD. I didn’t want to make it seem too vivid. It wouldn’t have felt right to complain about it, not then, not so soon after my friend had received radiotherapy. Another thought occurred to me, though, and this too held me back in divulging too many details.

I don’t think severe mental illness features lower down in an imagined hierarchy of illnesses, but when it comes to my mental illness, I have viewed it as shameful. While I’m certainly more open than I once was about my life with OCD, there’s something about the obsessive character of the illness that I prefer to minimise. If I reflect on why, it’s because I don’t want people to mistake my OCD as indicative or constitutive of my personality. To butcher Descartes’ first principle of philosophy, I think, but what I think says nothing about who I am. That matters as a mantra because my OCD does make me doubt myself. I do worry that being obsessive is somehow innate in me. No matter how hard I work on myself and prioritise my mental health, I believe there will always be a part of me that is programmed – who knows, genetically perhaps – to think obsessively.

If I hold my behaviour up to scrutiny, I do think I am obsessive about many things. I can obsess about whether I’ve annoyed someone, what someone might be thinking, about checking the news, about switching from one app to the next. I have obsessed, far too often in my life, about men. I often worry about how my Dad is, and whether I am doing enough to help him. This isn’t obviously a mental illness.

I hide a contradictory part of me. I amplify my OCD in my head, but play it down to others, even to my partner. No doubt one day, when he’s old enough, I’ll make light of it for my son. We’ve all heard people who describe OCD in a casual, comedic fashion. Someone might refer to their need to alphabetically arrange their books in their living room, and label it as evidence of their OCD. Perhaps it is, but more often than not it’s not, and, in the process, we risk fanning fictions about a serious mental illness. We turn something disabling, that strips those of us who live with OCD of our stability, and turn it into a punchline. That angers me. Something in me is questioning why I downplay my OCD. There’s something calling out to me to do this less, and to reckon with it instead. To look it squarely in the face, as a doctor once advised me.

 

2002, LONDON

Mum had died, the wicker basket of my guilty gay teenage secret had opened, and I often felt dizzy. I was experiencing panic attacks, a loss of appetite and, worst of all, disabling thoughts. However hard I tried to stop thinking about certain things, I couldn’t eliminate the obsessions. My GP referred me to a psychiatrist.

From the Piccadilly line, I’d exit at Southgate tube, walk down the long leafy lane that took me as an NHS patient to The Priory, approach the neo-classical building and its acres of surrounding lawns, and be met with classical sacrificial scenes on the high vestibule walls. The doctor would meet me in one of the grand offices on the first floor. It felt bewildering walking those five hundred or so steps from the underground, week after week.

The doctor was a proponent of cognitive behavioural therapy (CBT). I would tire when I tried to engage in one of the exposure therapies he set for me as part of my homework. I was tasked with only thinking of the intrusive image or thought. The point was to invite the thought in, let it fill my mind like ink on blotting paper, and then doodle it in my notebook. If I worried about my toenails scraping someone’s eyeball – yes, that was one of my odder ruminations, like something from a Salvador Dali painting or a surrealist Luis Buñuel film – then I’d need to think about it over and over again, to flood myself with its viscerality. The idea was that, by repeatedly exposing myself to an intrusive image, I’d get rid of its sting. Invariably I ended up lying in bed and feeling pangs of self-pity.

One day, I think the doctor decided his kind demeanour wasn’t affecting a change in me.

“You do need to complete the diary and come prepared to discuss your ruminations.”

I looked down at my carrot-coloured notepad full of cursive script. I hadn’t filled in anything since I last came to speak to him.

“It’s the sharp knife, my sharp-knife-rumination.”

I started sketching the image. The doctor was sitting opposite, no desk to separate us.

“It’s going to work best if you come prepared to discuss the entries you’ve completed in your own time.”

“The knife was the image I had again this week.” I filled the page with blacker and blacker lines.

There were jagged edges.

“Andrew, there’s no need to draw it now, you know what the image is. The point is to set that five or so minutes aside at home”.

Corrugated edges. Chilling to me. Running down from the knife’s edge to its heel.

“Is there a reason, do you think, that you’re struggling to engage in this work?”

I couldn’t be around knives, not comfortably anyway. I knew how silly that was.

“Because this will only work if you put the time in. It doesn’t seem like a good use of your time coming to discuss things without regularly doing your homework.”

I’d see a chopping knife in the utensil rack and edge away as if I was holding myself back from the rail on the deck of a ship.

“It’s just that I find I become really tired,” I ventured. I try to draw the images, but —

The obsessive image would knacker me. I’d feel it, yes, feel it, as if the rumination were uninvited fingertips tracing my spinal column, or, a crawling of ants under my skin.

I didn’t want to spend additional time at home thinking about it. Exposing myself to the sharp-knife-rumination would feel like inviting the image in for tea. I couldn’t let any of my ruminations cushion themselves and make themselves comfortable. That was my philosophy back then, to fight and to flee. I joined a gym. I started taking Prozac. I booked myself in for a meditation session, bought stones I heard might soothe me, and even tried some kinesiology. I visited Tate Modern. I enjoyed many exhibitions. ‘Art is the guarantee of sanity,’ read a text once stitched to one of Louise Bourgeois’ worksCell I (1991), concerned with questions of pain and suffering.

 

2006, LONDON

Here we go. Here was another one.

As a gay man, I’d regularly go to St Mary’s hospital in Paddington for check-ups. What I craved or ‘obsessed’ about, in terms of men’s bodies, soon coiled in my mind. Sex was the main risk to my health, or so my neural pathways were programmed to recount the story.

“Sex as a gay man can make you ill. It can give you pubic lice. Give you HIV. It’s a lottery.” I would tell myself this.

I would obsess about my health, in a repeat ritual of cruising, visiting sex clubs and saunas, feeling the adrenaline hit, and then regretting it. As a closeted teen, I’d inculcated the dominant narratives of homophobia in the era of Section 28, when homosexuality was often still pathologized.

I was reckless. Catastrophizing: “I will inevitably get sick.”

There was one particular visit to the Jefferiss sexual health wing at St Mary’s, when I was having a full check-up. In the early to mid 2000s, it was common for a swab to be taken by inserting it a few centimetres down the urethra. In truth all I experienced was mild discomfort. Soon enough, though, I couldn’t stop imagining my urethra, as if it is something one can imagine.

A swelling. A thinning. An inflammation. A deep breath, from high in the sternum all the way to my groin. My diseased urethra. “Such nonsense,” I thought, but I couldn’t stop thinking about it.

Those weeks following the check-up for bacterial STIs, this new obsession of my swollen urethra crashed around in my mind like a fairground dodgem. Somehow, amidst all this, I functioned. I secured jobs, got promoted, and on the surface I like to think I was a good son, a decent brother, a valuable friend. No one has to see you living with your OCD: not when the obsessions are private to you and you don’t act out your compulsions. Nobody but you has to notice a damn thing.

Although I’d come out, and had come to a place of feeling pride in my sexuality, it was as though I now had to replace one ‘dirty’ secret with another. I had substituted being closeted, and having once felt shame at being gay, with something (in my mind) altogether more disgraceful. It was my OCD I was now keen to suppress.

In my weakest moments, I felt lonely. At other times, I also had lots of fun. Life was full of travel and work trips, and I probably hid myself a little bit too much in my work responsibilities. Around this time, I had to register with a new GP. After moving house I wanted to make sure my repeat prescriptions for Fluoxetine Hydrochloride (an antidepressant prescribed for OCD) would continue without interruption. He didn’t seem to have my notes.

“What are you so obsessed about?” he snarled, his face etched with impatience.

Although I resented the tone he took and the way he asked the question, it did cause me to examine my illness, and why it might have appeared when it did. I realised how little in the years since we’d lost her I’d managed to channel memories of Mum. I barely acknowledged or admitted it, but I was devastated not to have her to call on, or to feel her warm embrace. It made me wonder whether my OCD had arrived, a year after Mum died, to serve a function. I tried to rationalise my OCD, to frame it as though it had arrived, by design, to spare me from feeling grief.

 

AUTUMN 2023, MADRID

Lucky as I am not to be experiencing major ruminations right now, I’m thinking in more general terms about illness.

Regarding physical health, we can understand pretty much any physical state. We might shiver in mimetic solidarity on hearing how severe someone’s pain is. If we shiver, it’s a shiver of compassion, in our prayerful hope that soon they might be healed. What we don’t tend to do is to think of a physical symptom like this as a signifying detail in describing a person’s personality or identity. We might even wonder, reflecting on their illness or their symptoms, ‘when might it be me?’

We’re conditioned to empathise when we hear someone is physically ill. When it comes to our mental health, I’m not clear about the extent to which we see mental illness, like physical illness, as something that can hit, unexpectedly. I’m not convinced that we’ve sufficiently come to view an individual’s mental illness as just that – an illness – as something common and contingent.

I worry that when we attempt to describe mental illness, and truly reveal its character, a valley of misunderstanding and incomprehension still leaves those of us affected asunder. Even in this relatively informed age, it’s not clear to me that the specificity of mental illness can be mustered in a stranger or a friend’s mind, however vividly we describe it. It’s not so much that it’s impossible to speak through an experience of mental illness, in the way, say, that Virginia Woolf wrote about the impossibility of speaking through pain in her essay, ‘On Being Ill’. It’s more that it’s hard to bridge a highly idiosyncratic experience of, say, OCD, and then to share it with someone unacquainted with mental illness, and then to form it adequately enough into something they can perceive. Someone who hears my health story might relate instead to my having once donated a kidney, and how indeed that physically caused me pain after three hours of surgery. They might very well sympathise about my OCD, but empathise with me and my experience of mental illness? How can they?

What’s more, talking about mental illness still stigmatises. It may be badged on me that I’ve admitted to living with this condition. What I’m openly admitting to here are odd, possibly dislikable, symptoms, things that each have a value attached, in terms of what they might say, not just about my health, but about me, Andrew, the person.

Susan Sontag wrote about how tuberculosis, cancer and AIDS have variously been stigmatised in various periods of history, and of course some of that stigma remains today, but with mental illness, we continue to mythologise and stereotype people who live with it. Or else we turn away from it, and make it manageable in our minds by attenuating what it might mean when it is most extreme. In Illness as Metaphor, Sontag bemoaned our inability to deal with illness on its own plain terms. We still talk about ‘battles’ with depression, the ‘weight’ someone feels on their ‘shoulders’, the ‘silver linings’ that we trust must await. It can be helpful to make mental illness easier for people to conceptualise, but surely language like this does a disservice to those living with mental ill health.

We have to be frank about the fact that mental illness can be a lifelong condition; our experience of it isn’t linear, and it rarely promises to be predictable. Drawing on the work of writers such as Jenn Ashworth, whose work Notes Made While Falling rejects the easy logic that a work on illness must end with a story-book style resolution, I too wish to reject neat or facile conclusions. All I can do is probe my OCD.

As I interrogate my own relationship with OCD, I question whether still too often in society we see physical health and mental health as distinct beasts, laden with different meanings, still connoting (in the latter case) a character weakness. In late Middle English, to obsess meant to be besieged by something, possibly even haunted by it. One even used the word ‘obsess’ to mean you were possessed, which is a singular experience. Living with OCD, detailing what I’m ‘obsessed’ about, or ‘compelled to do’, doesn’t just feel uncomfortable. It can also make me shut down and tuck my symptoms away, so that, for example, I never again have to face a GP insensitively asking me, ‘but what are you so obsessed about?’ I feel judged in such moments, as though my very mind, and pronouncing the possibility I’m unwell, is itself suspect.

‘Why remedy pain, and why excuse it? Pain is evidence of suffering, its marker. Without it, that suffering can be denied,’ writes Alice Hattrick in Ill Feelings. Channelling Louise Bourgeois, they say one has to be clear about the extent and nature of this suffering so as to give it shape and meaning. I’m inclined to agree, but often the problem with symptoms common to types of OCD where there are no outward compulsions is that, though these obsessions are painful, there’s no one out there (other than those of us individually affected) who can possibly see them.

For all the progress, and for all the good work done by specialist organisations such as OCD ActionOCD UKNo Panic and many others to destigmatize OCD, I still imagine most people don’t want to hear the specifics of the illness, or our very worst symptoms. An average person, not unjustifiably, probably wants to feel free in not associating. I’d say that speaking about a lived experience of mental illness, far from unifying us, can disjoin. In committing to the act of naming the illness, finding the vocabulary to try and shape it, we can find ourselves even more isolated. I was lucky my friend listened to me that evening on the cafe terrace, but not everyone is quite as fortunate.

 

2000, CAMBRIDGE

There was a student who appeared in line next to me for our matriculation photo at Emmanuel College. I liked him. When you’re a fresher, you make friends with people who happen to be standing next to you in a queue. We went for a walk on Jesus Common only a few days into autumn term. He told me he’d been attacked in his place of work only a year earlier. In fact, he’d been stabbed. He confided that he couldn’t help but wonder whether the knife had been contaminated in some way. He told me he was struggling a bit – the usual stuff – being away from home.

A few weeks later, a college official advised me to keep him company in his room, as he hadn’t left it for days, and he was waiting for his parents to pick him up and drive him home. He hadn’t been able to even shower in the communal shower room for fear it too might contaminate. We listened repeatedly to a song he couldn’t stop playing, The Streets of Philadelphia by Bruce Springsteen. He told me he knew it couldn’t be quite right, but he was always worried he had HIV. The time soon came for me to leave him as his parents parked their car outside the college library. I never saw him again. Once or twice, I tried to search for him on social media, but not wholeheartedly. I wasn’t sure what I would say, or what I could tell him.

 

AUTUMN 2023

I can write about OCD, but I struggle to reconcile myself to the intensity of my toughest memories, when I was at my most isolated, mistrusting my mind in that second year at university. I can write about the ruminations but I don’t have the quaking feeling I once did. I must acknowledge how slowly this essay has progressed, as I reflect, staccato, on all that I hate about the condition. I can talk about my OCD if I dissociate enough, if I suspend belief my obsessive ruminations might yet intensify, or might get worse. I can suspend belief they’ll get worse because on one day I take two yellow-and-green antidepressants, and the next day, I alternate, and I take just one pill. I’ve been doing this for more than twenty years.

The capsules mute my ruminations, or so I’ve allowed myself to swallow pharma’s theory. Whether they’re as good as a placebo, or pills that work for real, when I take my antidepressants, I feel the effect of switching down my ruminations: their volume, that is. It’s as if my OCD were a sweary TV programme, and in my hands, when I have my packs of Prozac, I have the medical equivalent of a TV remote.

One thing I don’t do anymore is keep a diary, at least not one dedicated to logging my obsessive thoughts. I burnt the OCD diaries I kept when a friend of mine helped me move house a few years after uni. I’d met with multiple psychotherapists and counsellors, most of whom helped, but I never got any closer to answering why this condition first took hold of me, why it possessed me so. I came to realise it’s a condition without a cure, as such. Was there a clear prognosis? Is there one? It feels most uncertain.

 

SOMETIME IN THE MID-2000S, LONDON

I regularly met with a counsellor, a Mother Earth personality, who saw patients from her home in north London. I’d walk there and alternately credit myself for my courage and also wonder why I was so weird. She was a sexologist, but often talked to me about my OCD. We ran through various cognitive and reflective exercises.

She helped me to realise that perhaps the first signs of my Obsessive Compulsive Disorder revealed themselves when I was a kid, when I’d have to tap our upstairs toilet flush three times, or rub my nose and ears a particular way before I’d consider going to sleep. I determined that I most had to perform this ritual in the three weeks before my family and I took a plane. Later, I was convinced that if I didn’t tread on alternate paving stones in quite the right way, diagonally to the next, then something bad would befall my family.

On-and-off I saw her over the years. I started turning up late. I think she probably felt we’d exhausted any real possibilities of surfacing or resolving anything new. And then one day, after one of my sessions, I received a cautionary note. It advised me that while she was happy to continue seeing me, she was obliged to warn me that if I did anything to act out a specific rumination I’d been speaking to her about, she would have to contact the relevant authorities, including the police.

I don’t think I ever saw her again, or if I did, things weren’t the same.

“I know they’re not things I’m going to act on. These thoughts.”

I didn’t repeat this affirmation. I was shocked to see her note. I hear other people with OCD can likewise worry about disclosing things for this same reason, the worry that soon their waking thoughts will become the focus of unwelcome investigation.

 

AUTUMN 2023

After enough instruction from that doctor at the Priory, perhaps it helped me to commit so many of my obsessive thoughts and images to paper. Perhaps my OCD has never been as bad as it was in my late teens and in my twenties. Or maybe something’s been forcing me to recount this story in this historic, disjointed way: to deviate. Maybe this story isn’t history.

 

SPRING 2023, MADRID

For one year of shifting anxiety, I waited for the second jab for Monkeypox (Mpox). I waited, and my OCD worsened. I’d pinch the folds of my arms and skin where new spots and pimples appeared, ones I hadn’t noticed the night before. I’d take photos, sit on our toilet, or skulk in the bathroom, turning my smartphone to scan the offending dots, take a photo of them and study them. Were they pustules? Or blackheads? Or were they signs of infection? Had I at last been infected, as I long feared I might be, with Mpox? Mpox, a horrible, biblical-sounding virus; just the latest, it felt, in a long line of things gay men seem at risk of acquiring.

As soon as I first heard about the epidemic in May 2022, I consulted pharmacists, sexual health clinics and the internet to check for updates, available appointments for the vaccine, anything in fact, that might put my mind at ease. I’d telescopically use the zoom feature on my phone’s camera to better determine whether new spots on my skin were lesions, to zoom in on them so I could compare their size, colour and shape to the images I’d see on the websites of the NHS and the Centers for Disease Control and Prevention.

“Sex as a gay man can make you ill. It’s a lottery.”

“I will inevitably get sick.”

I was back there, repeating that same old barb, a rebuff of sorts for the inner voice in me who liked to be happy-go-lucky. I was back in that spiral I was in at St Mary’s hospital, after I exited gay saunas, when I used to have to wait those three months for definitive results to HIV tests as a 20-something out on the scene. I’m sure it’s a spiral I’m conditioned to, somehow, as if I’m biologically predisposed to need this stress and anxiety, and they’re inside of me, deep, ready to fight a rearguard action against the serotonin being pumped around when I swallow my antidepressant pills. There’s something intrinsic to my psyche, isn’t there, that believes something has to go wrong, something colossal? Something unforeseen. Don’t I need my OCD?

Writer and campaigner Audre Lorde famously said ‘Your silence will not protect you.’ If this attempt at self-examination is anything, it’s my method of telling things as they are, to reject pretence and metaphor, to no longer downplay my OCD. In Anti-Memoirs, former French Minister for Culture, and writer, André Malraux, encourages us to think of ‘great men’ as public figures with public accomplishments, ones we needn’t understand at a private level. One discerns a distaste for anyone who openly wrestles with their inner doubts or psychology – that we must continue to hide our ‘miserable little secrets’ away.

The problem is that some illnesses never quite go away. I’d say my OCD is intermittent, but when it rears its ugly head and lurks last thing at night, as I put my head to my pillow, then I’d call it chronic. There’s a time-honoured recipe that will see it re-emerge. Add one spoonful of intense stress, and two spoonfuls of new uncertainty, and my OCD can indeed make itself present.

Not all my obsessive thoughts are irrational. Some of them couldn’t exactly be described as nonsensical, but many were, and are, and that is the problem. The irrational ones are the ones I occupy myself most with. The worst ones play on my sense of self – that, as a gay man, I shouldn’t be a parent, that I am bound to get things wrong, that I will – one day – be disgraced, and that I am faulty in some way. “Gay men shouldn’t be Dads; we will be accused of being paedophiles.” It’s toxic. Trying to understand intrusive thoughts – to try and determine their validity – simply perpetuates and worsens OCD.

I’m writing about OCD, and for good or bad, even speaking about it aloud in terraced cafes – not because I fear silence, but because I know that a life without obsessive thoughts or intrusive images will always remain a fantasy and pure fiction. In place of silence, therefore, I choose to divulge. I am prepared to divulge and disclose I have OCD, not to sensationalise the condition, or stir feelings of pity, but because I don’t think life is any easier, not for any of us living with the illness, if we keep it a secret. It may be miserable at times, but it certainly doesn’t need to be hidden away. My OCD represents a part of me, but I know it doesn’t define me. I choose to discuss OCD, and in so doing, hope to achieve some degree of – not understanding – but equanimity.

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