Credit: Getty
Frame Of Mind
“OCD made me terrified I would hurt people – but now I’ve learned not to fear my thoughts”
By Ellen Scott
2 years ago
16 min read
One woman shares her experience of harm OCD as part of Processing, a Frame Of Mind series.
All too often, people think OCD is just ’being clean’ or will declare themselves to be ‘a bit OCD’ for liking their pens arranged in a certain layout. Those who experience obsessive compulsive disorder know that this is not the reality of the condition. Instead, we face intrusive thoughts that can be absolutely debilitating.
The truth of OCD is just one perspective explored in a new book, Will You Read This, Please?, edited by Joanna Cannon. This is a collection of 12 powerful stories based on the lived experience of people who have faced mental illness in the UK, including tales of psychosis, eating disorders, grief and more.
One story in the book is from Marie, who experiences harm OCD, a subtype of obsessive compulsive disorder that causes someone to have intrusive worries about physically harming themselves or others. Her story, as told to Benjamin Johncock, is ahead.
Credit: The Borough Press
Do No Harm: Marie’s story, as told to Benjamin Johncock
It’s early January, late evening, and I’m terrified by the thoughts in my head. Graphic thoughts of violence towards those closest to me. I can’t make them stop. I feel like I’m being tortured by my own mind. It’s horrific.
It’s 2014, I’m living with my parents, but tonight I’m home alone. What’s happening to me? I decide to get rid of all the knives – and any other dangerous implements – from the house. I don’t want them here. I find an old hold-all and carry it through to the kitchen. I open the cutlery drawer and start filling the bag with anything sharp. I take the poker from the fireplace too. I zip up the bag, put on my coat, step out into the cold night. This is my hometown. This is where I grew up.
I walk down to the bay area. It’s not far from the house. The sea is a fury and the wind bites at my face. I unzip the hold-all and dump everything into the black water. The rocks are wet and I slip over, gashing my knee. It’s very dark. I can’t see what I’m doing. My knee hurts. I manage to stand up and get myself off the rocks. I limp home, bloody and tired.
I’m a shy, bookish, 37-year-old woman who feels bad if they ever have to flush a spider down the drain. How have I become someone so terrified of harming those I love that I’ve dumped a bag full of knives into the North Sea at night like a gangster disposing of evidence? Things have gone too far. I need help. I don’t yet know that I’m suffering from a common subset of obsessive–compulsive disorder, called Harm OCD. With no outwardly observable compulsions, it’s often called Pure OCD, or Pure O. I won’t have this diagnosis – or the tools to help me get better – for a long time.
I feel like I’m being tortured by my own mind
The idea of harm has taken over my brain. I’m in the supermarket. I steer well clear of the aisle with the kitchen knives. It soon starts spreading like a fungus to every part of my life. Scissors are terrifying – as is the fire poker. I banish steak knives and bread knives to the boot of the car. Every morning I wake up in a state of dread. It’s not the anxiety I’m familiar with from the panic attacks though – this is something different. I try to avoid any possible trigger. I stop being able to do simple things, like look in the cutlery drawer in the kitchen. I stop functioning. I’m constantly asking myself, what does this mean?
It’s the day after I carried the hold-all down to the cold, dark water of the North Sea. I phone up an NHS mental health helpline and explain everything to them. The horror scenarios going through my mind are just too much. I’m being bombarded, like junk email, and I can’t get them to stop. With the panic attacks, I was scared for myself, but now, I’m scared for other people. What do these violent thoughts mean? Where are they coming from? Do I need to be locked up? Am I losing my mind? The woman I speak to recognises that I’m not well. She tells me to hang up and make an appointment to see someone.
I go to my GP, who has been my family doctor for as long as I can remember. I know I have to be upfront and honest, but as I talk, I see her professional demeanour slip – she looks taken aback; a little disturbed – I can see it in her face. She tells me that I need to see a mental health specialist; it’s obviously something that needs looking into. I’m going to be fast-tracked on the NHS but there’s no telling when I’ll get seen. In the meantime, she books me a private appointment. I leave the surgery. I’m very scared. I’m clearly psychotic.
My GP didn’t say anything about OCD. I don’t think she recognised it; I had to piece the puzzle together on my own. I looked online. I’d heard of OCD before, but the Disneyfied version of it; the version you get in popular culture, where it’s just about checking things like light switches, and obsessive hand-washing. I found some forums on the internet where people were talking about it; I read about mothers with postpartum OCD, terrified of harming their babies. I didn’t have a child, but I could relate to them. People talked about bizarre urges they’d get, like driving off the road when they were in the car, or deliberately smashing into a wall. That there was this community of other people online with similar experiences to mine was both helpful and comforting. The shame factor surrounding Harm OCD meant that I didn’t feel able to broach the issue with family and friends.
My GP puts me on a selective serotonin reuptake inhibitor – or SSRI, for short; an antidepressant. They’re used to treat a range of psychological conditions, including anxiety disorders. But they’re not working for me.
I see a second doctor, at the same practice. I give him the whole story again, expecting him to be horrified. But he’s not as concerned as my original GP. He’s much more blasé. It’s reassuring. I ask him if he thinks I’m psychotic. He gives a small laugh, says kindly, ‘Oh no, I don’t think you’re psychotic.’ He doesn’t have answers but his demeanour tells me that he’s not disturbed by what I’m saying. He suggests switching my current SSRI to another that he’s had more success with: sertraline.
Reading the enormous fold-out instruction leaflet of any SSRI is always a slightly terrifying and depressing experience, not least because it states that you may experience an intensifying of symptoms before they work. I read through them and wondered how things could possibly get any more intense for me. But that’s exactly what did happen. I wasn’t sleeping at all – not a wink. My brain was in overdrive. I was just not functioning. This went on for nearly two weeks, until I finally told my parents, I need to go into a hospital.
Dad drives me back to the surgery. I’ve managed to get one of those last-minute appointments at the end of the day. It’s half-seven, dark outside; cold. The doctor just wants to go home. He’s not particularly nice. I tell him, I feel like I’m going out of my mind. He asks questions – questions I know he has to ask – but there’s no empathy, no care. Would you harm yourself? How would you go about it? Those questions. He says he can get me admitted tonight, if I want. The Royal Cornhill is a psychiatric hospital in Aberdeen wedged between Westburn skatepark and Berryden Retail Park. It’s Friday night. Aberdeen is an hour by car. I’d have to be assessed when I got there, and he tells me this could take several hours.
I ask if he can arrange it for the morning, as I’d like my dad to come with me for support – going into a psychiatric hospital is quite a big deal if you’ve never been an inpatient before, and my dad’s been working hard all day. I don’t want him sitting up into the wee hours waiting for me to be assessed and then driving back home. The doctor says, ‘Well, just go in by yourself! Don’t bother your dad.’ It’s unbelievable.
Dad takes me down to the Royal Cornhill on Saturday morning. I’m assessed by a young psychiatrist, who doesn’t think I need to be sectioned. He asks if I want to be admitted. I have my bag with me, packed for this eventuality, but I know I’m on my own in this decision. I say yes, please. And that’s it. I say goodbye to my dad, and the young psychiatrist takes me up to the ward where I’ll end up spending the next four months.
I keep my diagnosis from the other patients; I dread being labelled as dangerous. Even though I’m in a controlled environment now, I can still see the potential for harm everywhere. What’s to stop me stabbing another patient in the eye with the fork in my hand? Night time in the dormitory is torture: people are asleep and defenceless in their beds. I’m bombarded with violent, intrusive thoughts that leave me in a near-permanent state of high anxiety. The woman in the bed next to me is snoring loudly again. I lie awake thinking, what if I go berserk and strangle her? My other bedside neighbour is an older woman who enjoys knitting. When her partner comes to visit, she goes off to the visiting area to see him, leaving her knitting needles in her bedside cabinet. She doesn’t know that I have Harm OCD. She doesn’t know that I’m plagued with thoughts of skewering her with those knitting needles in a fit of rage. I find it so stressful that I ask one of the nurses to take the needles away until she returns. Everyone on the ward has different problems – unless you choose to tell others, they don’t know.
As with most disorders, OCD has various sub-types. There was a young woman on my ward who had what you might call classic OCD – that is, the highly visible kind that involved repeatedly touching things and rearranging objects. She would hold up people who were trying to get into the dining room by continually touching the door, and she flushed the toilet numerous times during the night. At the time, with my skewed thinking, I perceived her as having a more legitimate form of the illness – one that got her more attention from the staff. I sometimes felt as though my suffering was going unnoticed because my OCD was invisible. No one made jokes about it in popular culture. It felt like I wasn’t receiving the same level of support. Mental illness makes you so self-absorbed. The psychiatric nurses had a hell of a job to do – and they were on their feet all day, working twelve-hour shifts. They were very good, all of them, but it was always a case of trying to attract their attention as they went from patient to patient, checking in on everybody.
The state I was in, I suppose I was jealous of the more visible issues that some patients presented with. I felt like I couldn’t just go up to one of the nurses and say, I’m having a thought about randomly stabbing someone. It didn’t feel like the same kind of thing.
My feelings towards this woman only thawed when I found myself alone in the ward kitchen with her. She was making a cup of tea and she suddenly broke down in tears. She said, ‘I don’t want to be here – this illness has taken me away from my family.’ At that moment I realised making category distinctions between her OCD and my OCD was invidious. Both of us were suffering equally, and in fundamentally similar ways.
There were probably other kinds of OCD affecting those around me that I didn’t even recognise. I shared a dormitory with an elderly lady in her late sixties. We enjoyed daily conversations but neither of us divulged our conditions to each other. I remember that quite often, several hours after we’d had a conversation, she’d come up to me in the ward and ask, ‘I haven’t offended you, have I?’ At the time I just thought it was an amusing aspect of her personality that I occasionally found annoying. I even wondered if she might have dementia. Looking back now, though, I think this could have been a manifestation of OCD that I simply wasn’t familiar with.
I had a couple of hour-long sessions with a clinical psychologist as well as the psychiatrists. I was encouraged to stop trying to find an underlying meaning for the thoughts that I was being plagued by and try to focus more on the meta-cognitive side of things. It was about being able to just accept the thoughts and detach yourself from them; not see them as being bound up with your identity. I also learned about the thought–action fusion, which was such an ingrained feature of my thinking, where you believe that simply thinking about an action is the same as actually carrying out that action. It’s a sort of cognitive error.
The psychologist watched me hold a serrated knife in my hand and lived to tell the tale. She also encouraged me to try and think of my OCD not as a fundamental flaw, but more as a kind of brain hiccup (distressing, but harmless). I was only able to get two of these hour-long sessions with the clinical psychologist in my whole four-month stay as an inpatient; a very clear reflection of staffing issues and the strain on the service.
I force myself to buy a newspaper every day and read it, even though I know it will contain articles about violence. A lot of the time, though, I cheat and only skim the headlines, because of what triggered my OCD in the first place. I don’t want any more violent ideas or images implanted in my brain, but I do want to stay connected to the real world. The occupational therapist takes me out into the centre of Aberdeen, on public transport, to be around people again and avoid becoming institutionalised. It’s pretty disconcerting. I become hyper-aware of things. I always worry in case I do or say something that makes people know I’m a mental hospital patient. And I try to spend as much time out of the ward as possible. The hospital grounds are landscaped and mildly uplifting, so I begin doing circuit walks as winter slowly starts to creep towards spring.
And then, four months after my admission, I was discharged. I still felt in a highly vulnerable state. I still didn’t trust myself. To be at home again and told to get on with it; to live with these objects that had caused me so much distress before – but that are part of everyday life – was very difficult. It took time. I had monthly catch-ups at my GP surgery with my psychiatrist to review medication, and fortnightly sessions as an outpatient with a clinical psychologist at the hospital and with a community psychiatric nurse at home. One of the things I had to do at home was prepare dinner in front of my mum. And that was when I went back to the cutlery drawer and started to reacquaint myself with its contents. I think I did this with them both watching on at least half a dozen occasions. Six months after I was discharged, I was still far from being ‘cured’ – there remained recurrent, troubling thoughts, and I still had a phobia of sharp objects – but with most mental illnesses like OCD, I don’t think there’s a Eureka! moment when you can just move on. My daily life was still a struggle for many, many months. My therapy sessions gave me a much better understanding of OCD, though – and equipped me with tools and strategies to help. I think it was a good year and a half before I began to feel even semi-normal again.
I’ve now got a job in the cultural sector doing work that I love. Clomipramine has been a godsend. I wish I’d taken antidepressants sooner; they might have saved me years of lost productivity. I’ve been taking them for almost eight years and I’m now on the lowest dose, ready to be weaned off. They’ve got side effects – all medicines do – but they’ve worked for me. I never like to think that all this couldn’t come back sometime, but I know what OCD is now – what it really is, even if it took on another form and presented as a different subset.
There’s not enough awareness of the spectrum of mental health conditions at the primary care level – and I think that’s a real problem. GPs just aren’t equipped to deal with people in crisis. I don’t think they know what to do. There was no awareness of the extreme distress I was in. And no one made contact out of hours to check up on me, or ask how I was coping. You see a GP for your appointment – and that’s it. In a mental health context, it’s not enough. They didn’t even recommend help plans for me to go on, or people to speak to – I had to do my own internet research. There should be far more prevention going on within the primary care setting, not just prescribing SSRIs and telling people to battle it out. I do think, though, that there’s been much more awareness, generally, around mental health over the last few years. It’s definitely percolated into the culture more. There’s been a gradual destigmatisation that was long overdue.
Mental illness takes up so much time. It diverts you from the life you should be living. And it’s time I can never get back. My experience has changed me. It’s made me acutely aware of how mysterious and powerful the mind is. But the most important thing I’ve learned is this: I don’t need to be afraid of my thoughts.
Will You Read This, Please? (The Borough Press) is out now
Frame Of Mind is Stylist’s home for all things mental health and the mind. From expert advice on the small changes you can make to improve your wellbeing to first-person essays and features on topics ranging from autism to antidepressants, we’ll be exploring mental health in all its forms. You can check out the series home page to get started.
If you or someone you know is struggling with their mental health, you can find support and resources on the mental health charity Mind’s website and NHS Every Mind Matters or access the NHS’ list of mental health helplines and services.
If you are struggling with your mental health, you can also ask your GP for a referral to NHS Talking Therapies, or you can self-refer.
For confidential support, you can also call the Samaritans in the UK on 116 123 or email jo@samaritans.org. In a crisis, call 999.
Images: Getty; Borough Press
Sign up for the latest news and must-read features from Stylist, so you don’t miss out on the conversation.
By signing up you agree to occasionally receive offers and promotions from Stylist. Newsletters may contain online ads and content funded by carefully selected partners. Don’t worry, we’ll never share or sell your data. You can opt-out at any time. For more information read Stylist’s Privacy Policy
Thank you!
You’re now subscribed to all our newsletters. You can manage your subscriptions at any time from an email or from a MyStylist account.