S1E2 – Why is OCD so misunderstood? With Stuart Ralph

EPISODE TRANSCRIPT

E: Hello, my name is Ellie.

 

W: And my name is Will.

 

E: Lively Minds is a UK-based podcast about mental health challenges that go beyond the ebb

and flow of the everyday.

 

W: Led by people with lived experience, this podcast is less about how we deal with our mental health problems, and more about how we understand them in the first place.

 

E: If anything comes up in this show that you need support with right away, for signposting to services, including those outside the UK and Ireland, please visit our website, AnyaMedia.net/lively minds.

 

W: For our second episode, we discuss what I’ve frequently seen described as one of the most misunderstood of all mental health problems, OCD or Obsessive Compulsive Disorder.We talk to Stuart Ralph, someone with lived experience of OCD, who is now a counsellor and psychotherapist working with children and young people and presents the excellent OCD Stories podcast which we thoroughly recommend you check out. On a personal note, I found that this conversation had quite an impact, which prompted me to record this short intro, in part as a heads up on what topics we’ll be talking about, in part a desire to debunk some common myths about OCD from the outset. Its inaccurate portrayal in popular media as some kind of comedic personality quirk trivialises both the immense distress as well as the far more complex reality of this debilitating illness.

 

So what is Obsessive-Compulsive Disorder?

 

Well, the Obsession in OCD is an unwanted and intrusive thought. The compulsion is a further thought or action to relieve the anxiety caused by the obsession. But in fact, this rumination only feeds the obsession leading to an endless cycle that is difficult to escape. The intrusive thoughts could be fears about contamination, the compulsions could be endless hand washing, and so-called contamination OCD is perhaps the best known subtype. But for many OCD sufferers, their intrusive thoughts and compulsions have nothing to do with germs or cleanliness. Instead, intrusive thoughts might take the form of terrifying self-doubt, for example about a relationship, the way they behaved in a particular situation, or a fundamental aspect of their identity. OCD sometimes gets called the “doubting disorder”. Abundant evidence that their fears are unfounded isn’t enough, because all it takes is a a modicum of doubt for the mind to keep racing.

 

These unwanted thoughts might range from simply being at odds with the sufferer’s identity, to violent or taboo intrusions which can cause huge distress. We’ll talk about people who fear they want to be a serial killer because of intrusive thoughts about harming people. We’ll discuss pedophilia-themed OCD, in which people fear they may be a risk to children. Meanwhile, unhelpful news articles and social media memes perpetuate the dangerous misunderstanding that intrusive thoughts represent hidden desires and compulsions are the acting out of those hidden urges, whereas in fact, on both counts, the precise opposite is true.

 

Intrusive thoughts are distressing not because they are there, but because they repel. Compulsions will never manifest as the acting out of hidden desires, because such hidden desires don’t exist. Suggesting that someone who has an intrusive thought about harming someone has a hidden desire to do precisely that is no less absurd as suggesting that someone with contamination OCD has a hidden desire to smother themselves in dirt.

 

OCD is a debilitating condition suffered by millions around the world where the only victims are the person who suffers from it, and in some cases, the people in their lives who are trying to support them through it.  I just wanted to nail that from the outset.

So without further ado, let’s handover to Stuart.

 

S: Thank you for having me first of all. So yeah, as you said, my name is Stuart. I’m a counsellor and psychotherapist for children and young people. I work in Surrey in a little town called Farnham in the Surrey Hills. And yeah, my relationship to the world of mental health is that from a very young age, my earliest memory being seven with mental health was around OCD.

 

So I was on a family holiday and I suddenly, when we got there, my dad was ill, he had to go to the motel hotel room, whatever it was. And I was getting these flashing images in my mind of this kind of tarantula, kind of crawling up my dad and it was gonna bite him and kill him. And obviously as a seven year old, I was very anxious. I didn’t know it was anxiety at the time. I probably didn’t even know that was a thing. And I just remember constantly seeing this image in my head and it was like, I have to tell my mum, my mum was with me and my brother was with me and we were getting something to eat.

 

I was like, I have to tell my mom because then we can go back and stop this terrible thing happening. And for whatever reason, I never spoke up. I never said anything to my mum. It was probably a fear of, well, not wanting to sound weird. And obviously we got back to the hotel room. He wasn’t, he may have been bit, I don’t know, but he definitely wasn’t dead.

 

And in that same holiday I had, again, I’d been in the swimming pool, and I’d suddenly get overwhelmed and panicky that sharks were about to bite me in a swimming pool, you know? So it’s completely irrational. So that whole holiday, it was middle of summer, it was ridiculously warm, and I would jump in from one corner, be in the water about a metre, two metres, jump out the other side, get as far away as I could from the water because I didn’t want to get bitten. I obviously, deep down knew this was completely irrational, but every time I hit the water, I was just overwhelmed with kind of panic and dread. And they were kind of my earliest memories of like intrusive thoughts or intrusive images around OCD.

 

I won’t give the full detailed story because I think we’d be here for a few hours, but how it kind of waxed and waned, and this is what OCD does for a lot of people, we call the themes of OCD. So I couldn’t really tell you what those early thoughts were as a kind of theme of OCD even to today, how much I know about OCD, I still can’t categorise it. But it kind of morphed into what at times there would be old objects in our home, it could be an old painting or there was this old like, I think it was like a brass teapot, kind of, I guess, antique or something on the staircase. And as I’d walk down, I’d have to walk back and forth, back and forth, back and forth until it felt right. So that was that theme of it has to feel right. And if I just continued walking, I’d be overwhelmed with just horrible emotion and anxiety.

 

There’d be lots of counting, tapping in terms of other compulsions. And that was attached to in terms of obsession or worry was if I don’t get this right, either something bad’s gonna happen to someone in like a third world country, I’m not sure if that’s politically correct that term anymore, but it was when I was 9 or 10. Or I wouldn’t be in, I would still be with my family, but I would almost be in a different dimension. And what comes to my mind is like interstellar. So I would be, I’d still be with my family, but something just wouldn’t feel right. It would feel really off and horrible.

 

Yeah, so again, I can’t really articulate that too well. And then there’ll be lots of stuff with boundaries, like doorways, so I’d have to go back and forth again, in and out of a doorway for for ages until it felt right. And I remember, I must have been about 9 or 10, that after, it must have been about half an hour of going back and forth, back and forth at night. You know, my parents were downstairs, my brother, I don’t know where he was, but I was by myself, I remember breaking down in tears, just thinking this can’t be what everyone else experiences. That was my first insight into that. And I remember thinking again, I have to kind of say something to my parents, but there was this worry of, if I share this, I will get taken away and locked up in a straight jacket, which was my view of mental health at that time. And it wasn’t that my parents were gonna send me away, it was that I would be taken away and they wouldn’t have a choice or an opinion in the matter. So again, I kept quiet. And I think that has changed because of a lot of the media around mental health, young people are much more willing to share and open up about their struggles. And of course, when I was a kid, no one talked about OCD and if they did, it was kind of, well, completely misunderstood. So it’s, I’m not saying that there’s still young people, obviously, that are afraid to open up, but, but generally speaking, it’s much better than it was when I was a kid.

 

And, yeah then I would start to worry what we’d now call sexual orientation OCD. So I’m a heterosexual man, but I was very much obsessing about worrying about being gay. And then, that was in my late teens. And then, and then, there’s a couple other themes that kind of really kicked in in my 20s, which was one is called real event OCD, which is your brain will latch on to something that actually happened, but it was probably pretty benign and pretty okay, but your brain was start adding what ifs. 

Well, what if you did something bad?

What if this actually happened and you don’t remember it, all of that stuff?

So that was quite tortuous and the compulsion then is relaying and reviewing and going over memories over and over and over again in your head and the problem is the more you do that, the less confidence you have in a memory, which then you get more confused and more sucked into the OCD cycle.

 

And then another one was what we’d call relationship themed OCD. So throughout my 20s, any dating or relationship I was in, I was just absolutely flooded with anxiety. And the first date could be really good and in between the first date and second date, I would just start worrying that I was gonna ruin this person’s life, or they’re gonna ruin my life, or I’m just obsessing over that.

And yeah, so I didn’t have many long relationships in my 20s, just ’cause every time my head, my head got in the way. And in fact, my now wife, when we first started dating, after about four or five months, I tried ending the relationship because I was for four, four, five, six months. I was just absolutely flooded every day with anxiety and dread. And I can now say I’m not anxious in the relationship at all. I mean, yes, she annoys me sometimes, but that’s not, that’s not OCD. But obviously it’s mutual, I do that too. So that’s kind of a very fast view of my story.

 

W: And I think it’s interesting as well that you started referring to some of the

subtypes of OCD and we will kind of dig in in a moment into just what OCD, obsessive compulsive disorder actually, actually is. But on the sexual orientation OCD, just taking that as an example, Stuart, I mean I think Rose Cartwright who of course is well well-known for writing the book, “Pure” is really interesting when she talks about her sexual orientation of a CD that she had, because she was interesting in pointing out that it wasn’t that she had herself any issues fundamentally with the idea, the concept of homosexuality. It was more about doubting one’s one’s own identity, I guess.

Can you expand a little bit more on that?

 

S: Yeah, I think it’s worth clarifying, because if people don’t understand how OCD works and they hear that, they might think, “Oh, well he just sounds homophobic” or whoever it is or Rose. And that’s not the case, you know. At that age, I was probably, there was probably a bit more stigma to be honest, because as a 15, 16 year old boy, I went to an all boys school as well and I couldn’t tell you a single boy in that school that was identified as homosexual. And of course, out of like 1500 boys, there would have been many that were. So it wasn’t talked about. And when it was, it was a joke, you know. So it, I probably wasn’t as comfortable as I am now with the idea, if that was my identity, or at least thinking about it, maybe I wouldn’t care, because there’s no stigma for me around it. But yeah, I guess what I’m saying is, at the time I wasn’t like, “Ooh, I don’t want to be gay,” or anything like that. It was against who I was. And that’s where OCD really comes in, is often these people, so I work with some clients who are just the loveliest people, but they’re obsessing about being serial killers. They’re deeply afraid that they’re going to be a serial killer. And that’s why I kind of laughed a bit there because it’s so completely the opposite. You know, these people are just the nicest people, but that’s why they’re worrying about it. It’s OCD worries are often either around what you value and what’s important to you. So if family is really important to you, your OCD might latch on to your family and really start obsessing about them. Yeah, if religion’s important to you, you’ll get a lot of people obsessed about their religion or having like blasphemous thoughts towards Jesus, for example, or whatever other god it is. And of course, they don’t want these thoughts. These thoughts are deeply scary to them because they’re actually quite devout in their religion and they don’t want to be thinking these things. So again, actually on sexual orientation, OCD, so I mean it’s worth clarifying, ’cause it used to be called homosexual OCD, or homosexual-themed OCD, which they changed that because there was a certain level of stigma to it. And it also wasn’t true because I could be a gay man and I’d be obsessing and worrying about being straight. So it just shows you, and there’s no societal stigma around that, for example, but yeah, a gay man or gay woman could very much obsess and be deeply afraid that they’re actually straight, because that’s against who they are and their identity. So that’s really the key around around OCD is it, it’s called ego-destonic, the thoughts, which just means it’s against what your ego wants or is. 

 

So yeah, so I’m trying to think of other examples. Like a good one is mums, it happens with dads too, but more commonly with mums or at least mums talk about it a bit more. Often mums of OCD when they have a kid or OCD kicks in as they have a kid and they’re suddenly getting loads of taboo intrusive thoughts around their, their, you know vulnerable baby. It might be around harming their baby. It could be, sorry to be graphic, throwing them out of the window. It could be sexually abusing them. And of course to these mums or dads, this is completely horrible, you know, it’s repulsive to them the idea that they’re even having these thoughts. But actually, it doesn’t say anything about the character other than actually it just shows you how much you love your kid and this is your brain freaking out a bit not knowing how to deal with this this anxiety and uncertainty.

 

W: And so what is OCD Stuart?

What is obsessive compulsive disorder?

 

S: Our answer is, very like dictionary level, so OCD, obsessive compulsive disorder, so the obsessive bit is the kind of what we’d call like intrusive thoughts, so these thoughts that kind of come into your head. And we all have them. There was a survey done about 10 years ago which found, I think it was like 2000 people or something they interviewed. I think it was in Canada. And they found that 94 or 96% of those people said yes, they have intrusive thoughts. Now of course, only a small fraction of those people interviewed would have had OCD. And I think the other 6% were lying or just didn’t identify intrusive thoughts because if we all stand on a train platform, for many of us, our brain will give us an image of like jumping in front of the track. You know, even though we have no desire to do that, that happens to me and that’s not part of my OCD. And like, yeah, other things. So again, when I had my my daughter, I was getting intrusive thoughts around hurting her, for example and again, I it didn’t bother me because it wasn’t attached to my OCD, but I was getting those intrusive thoughts and I didn’t like them. So we don’t know why the brain’s doing this, but it does it for everyone.

 

But with OCD, it becomes much more sticky when there’s an emotion attached to it. So for example, anxiety, guilt, shame, disgust, any of these things, drive it. So if I have the thought of jumping on the track and then suddenly I’m, I’m anxious about that, that thought’s much more likely to stick around. And because it’s sticking, because I’m now focusing on that thought, my brain is gonna identify that as something that’s important to me, or something that the train tracks are dangerous. So it’s gonna keep giving me that intrusive thought every time I’m near train tracks. Whereas what actually happens to me around train tracks is I’m not anxious about it. I am a bit like, ooh, that’s a bit weird. And then because I’m not reacting to it, my brain’s going, ah it’s probably fine. And then it doesn’t give me the thought, it doesn’t give me any anxiety. 

 

So with the intrusions, there’s also, like we could say like doubt, what if questions, what if this thing is contaminated? And thats that was a big thing for me, these what if questions. so doubting. OCD has been called the doubting disease for that exact reason. It’s really about doubting and uncertainty and not knowing. And then the compulsion part is things people do, actions people do and take to reduce the anxiety or the feelings and to try and remove the thoughts or images. 

 

So intrusive thoughts can also be images, urges, sensations. So some people might notice they’re groyne kind of like, what’s the word? Not itch. They kind of just notice it. And, and then,  there’s suddenly, “Oh my God, why did I notice that when I was thinking about my kid?”

You know?

“Does that mean I’m getting sexually aroused?” 

or, and then they’ll start checking, which is another compulsion. So compulsions can be mental too. And again, every single body part, so I do with my clients and everyone listening, like notice what your left foot feels like right now. And like, mine, mine suddenly feels quite heavy. I can feel it pulsing. Maybe that’s the blood going through my veins. I’m not sure. But up till this moment, I have not noticed what my left foot feels like today. Now, if I keep focusing on my left foot, I’m telling my brain it’s important and I won’t stop thinking about my left foot. And it’s the same with, for example, bodily sensations, like the groyne, the groyne, or what’s called I mentioned, that, and then they get hyper-focused and then for weeks, they can’t stop thinking about it because their brain keeps reminding them, like, keep thinking about your groyne because there could be danger there. So in a bit more detail is the way I describe OCD, what’s going on in the brain at least, is OCD is is someone’s, it’s their brain’s way of trying to protect them. Whether it’s OCD or anxiety generally actually. The more, yeah the more anxious we get about something and if we keep then paying attention to that thing, whatever it is, we’re telling our brain, the anxious part of our brain, that in fact that might be dangerous to us or that might be a threat or I’m dangerous and then because your brain wants to help you and it wants to protect you and keep you safe and it wants you to survive probably because you can spread your DNA and all of that stuff we go back to evolutionary terms it will keep giving you warnings so because you paid attention to your baby and worrying about hurting your baby here’s more anxiety the next time you’re around your baby or even before you’re around your baby don’t stop thinking about that baby because you could do something bad and that’s what’s going on. Whereas what we want to do in that scenario is start to be okay with with the thoughts and the feelings, making space for them, not reacting to them, not doing any compulsions. And as we don’t do compulsions, we show that anxious part of our brain that it’s okay. And then that anxious part of the brain learns, “Oh, it’s okay. I’ll stop giving Stuart this anxiety, these thoughts, because he’s not paying attention.” 

So it, just one last thing on that, if we think, evolutionary speaking, if a tiger was in the room with the three of us or anyone listening to this right now, as cute as tigers are, I wouldn’t want to be in a room with one. And um, so as soon as, as soon as I’m in the room with one, my anxiety kicks in, I’m deeply terrified, that’s my fight or flight, and also freeze.

Do I freeze?

Do I fight or do I run?

That’s a good evolutionary thing and if we didn’t have that, none of us would be here. We definitely wouldn’t be having this podcast and probably the human race would have died off by now. So, and again, if we cross the road, if we don’t have that part of our brain, we don’t look left and right, there’s a good chance we’ll get hit. And that goes for anything. So, it’s not that that part of our brain is bad, it’s deeply important to us, but in this modern day and age, there’s not a lot of danger regardless of what the media says. obviously there is for some people, I’m not denying that, but relatively speaking we’ve never lived in a safer time and our brain is constantly on the lookout for danger and with someone with OCD it’s just so hyper-focused on something that’s so completely out of character and irrational and extremely unlikely but because we keep paying attention to it we we keep basically telling our brain that there’s still a tiger in the room and we need to show it that there’s not a tiger and how we do that is change our behaviour. So there is a specific therapy that’s good for that which is Exposure and Response Prevention therapy which is part of CBT, cognitive behavioural therapy. So yeah, that’s basically facing your worries and then, then, pulling back from doing the compulsions and as you pull back your brain learns, maybe it’s okay. Maybe I’m not a threat, maybe there’s nothing that’s a threat to me and everything’s okay.

 

W: And I think just to be sort of really clear as well, I think we all agree, don’t we, that OCD is, is, is very often misrepresented, especially in the media and in sort of broader culture. The sort of stereotypes, you know, always being people who are obsessively clean and tidy, and people who are repeatedly switching light switches on and off, people who have germophobia and so on and so forth. And I think what you’ve just articulated really whilst you are is that OCD can sometimes involve those, those, factors, but it, is, it is so much more complicated than that. The key thing around it is that the, the, obsessions and the compulsions can take all different types of forms, can’t they? You mentioned for example that compulsions, the response to an intrusive thought and unwanted thought is often an action, a physical action, a behavioural response, but actually very often it can be a mental response, can’t it? And I think one of the reasons why

for me personally, it was only a few years ago that I realised the issues I’d been having for my entire life almost was a form was OCD, was when I realised that actually these compulsions,

these attempts to try and put right what’s just gone wrong in terms of the thought that’s entered

your head that you didn’t want to enter your head, those my compulsions were entirely mental. As far as I’m aware, there was never any physical manifestation of those, of those compulsions. And I think it’s really interesting that OCDUK, which is one of the national charities for OCD, actually doesn’t really support the use of the term “PureO”, which for those who don’t know is what’s often used within the community to refer to forms of OCD that take on the form mainly of intrusive thoughts and mental compulsions. Because from their point of view, that is simply, that is still OCD. It isn’t purely an obsession. It includes the compulsive part of it too. It’s just that that compulsive part is very often a mental response.

 

S: Yeah, really good, really good point. And, and I somewhat disagree with OCDUK. I 100% agree what they’re getting at. But I think what they’re missing is, so “PureO” was coined by Dr. Stephen Phillipson in 1988, I believe. I’ve had him on podcasts loads of times. He’s a great  therapist and great guy, but he, he originally coined that because the way we viewed OCD back in the 80s and before that left out all these people that didn’t really have physical compulsions as you were saying. They just had mental compulsions, largely rumination but other stuff. So I do agree with OCDUK in that we absolutely need to move away from arguably all of the themes, all of the subtypes because it’s all OCD and how we treat it is very similar for all of the different themes. There’s some slight nuances and some themes have more shame than others. If you’re you’re obsessing about and worrying about being a paedophile, for example, there’s tons of shame that comes along with that for obvious reasons because it’s just so societally taboo. But where I think OCDUK, and they’re not the only ones other OCD charities have kind of followed suit, is that the term “PureO” has allowed so many people to find a tribe and community and find resources, whereas other, whereas they couldn’t really find that before that term existed. So since the birth of social media, I think that term has really helped communities build around this idea and it’s raised a lot of awareness around intrusive thoughts. So, so, I’m a bit more, like on the fence of yes, I agree, we kind of want to get rid of the term because it does imply purely obsessional, which isn’t the case. There are compulsions, they’re just mental, in your head as opposed to physical. But until we can get away where we can move away from all themes, that term does have some utility and that helps people find community and hope. 

 

But yeah, and then what you said, like the media for years and years and years, TV portrayed it terribly in the characters. And then also, and when they did portray it, they didn’t even actually do a good job of like, germophobia or, or, traditional contamination OCD, because they just focused on the compulsions. Whereas actually a large part of that is they’re not they’re still having worries and doubts which is they’re deeply afraid that if they touch something it’s, it’s going to contaminate them kill them or they’re going to pass, pass that contaminate on and kill someone else. So it’s deeply sort of horrifying to these people even though it’s not taboo it’s still deeply troubling and then you have I won’t name networks but certain TV channels in the UK that I think did some reality shows that did a lot of harm and that was very much focusing on and OCDUK have called them out on this actually years ago, but they did a lot of harm in that they just focused on like cleaning and these people on the show loved cleaning they they and and that was ego syntonic right they they it was what their ego likes they they loved being a neat freak if we want to label them as that or anal. Whereas someone with contamination OCD in the traditional sense does not want to be a neat freak. They’re deeply, they hate the fact they have to clean or wash or whatever it is, because they’re only doing it because they’re so deeply afraid that their world is going to collapse on them. So, so that never got showed, you know? So that things like that really hurt the people and then and the and the idea of OCD and then obviously the press and everyone then says on social media you know I’m so OCD cause I I like my things tidy or whatever and it’s like uh you know most people I know of OCD are like really messy people either they’re not tidy in any way and that’s not to say you can’t be tidy and have OCD but they’re not and if they’re tidy it’s just because they’re a bit um, they like being tidy there’s nothing to do with the OCD so yeah it’s a real complex issue. It is changing a lot but it’s like the, the, more good information you put out there that pre-existing stereotype just keeps churning out new TV shows, new articles and whatever else. So it’s yeah I’d say that and sort of schizophrenia are the two like biggest misunderstood mental health diagnosis because schizophrenia was again like OCD. It’s completely misrepresented in films and TV, that’s not really what schizophrenia is. Yeah, so it’s, it’s, frustrating.

 

E: When you were talking about cleanliness then, I have a bit of a hoarding problem. I think hoarding probably could be an interesting episode in itself actually, now I think about it. And just hearing you talk about all of that then has made me realise how it’s a similar mental pattern, you know, the fear that if you get rid of something, something bad is going to happen or you’re going to need it and then you won’t have it anymore. And people would probably be surprised that you know an issue such as having a kind of problem with hoarding could be so closely related to an issue that’s presented in the media as like, to do with cleanliness and like you know an absence of clutter both mentally and physically.

 

S: Yeah, I agree. Yeah, I’ve had some clients before that met this sort of hoarding criteria and hoarding, I don’t profess to be an expert in it, but from what I’ve seen and not for everyone who hoards but for a lot of people it is kind of how you’ve expressed it that yeah if I if I the idea of well how I’ve worked with them is okay we need to try and give one item up what’s one thing you could put in the bin or a cycle or give away whatever it is and as soon as you suggest that there’s this huge like resistance to it because the idea of throwing something away is just deeply horrifying or something bad will happen or I’ll I’ll never get over the feeling that will come with it. And all of that is very much what I would hear with someone with OCD. So I believe, don’t correct me on this, but you could. I think hoarding used to be in the DSM alongside OCD and now it’s its own separate thing. So they have separated it from OCD, but once it was part of OCD in terms of how they diag in the diagnostic category.

 

E: Okay, yeah.

 

S: Yeah.

Which I think, I don’t know, I think it should be a separate thing, but I think it is very

similar and I’ve seen it with OCD and hoarding side by side.

 

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E: Could I just ask something about something you mentioned earlier? You referred to, I think it was Real Event OCD. And did you say that’s when, you know, an event or a sequence of events has happened, but then the kind of thoughts attach a lot of other what ifs and things to it. Could you just explain what that was again?

 

S: Yeah, yeah. So there’s a couple variations of OCD like this. One’s called a false memory

and one’s called Real Event. So False Memory is where really it’s literally 100% of false memory that’s not attached to any basis. And your brain’s kind of making things up. Whereas Real Event is similar, but it, it, your brain’s making things up, but it’s making them up around the foundation of an existing actual memory of something that happened. So it could be that you went to a house party once for example and and maybe you, I don’t know, maybe you were kissing someone but then your brain could be years, it could be like 10 years down the line and then your brain goes, “But what if it, you know, she or he didn’t consent to that kiss?”

“What happens if you forced yourself on them and now they’re deeply miserable and unhappy because you kind of violated their rights?” 

and you know all of this. So the brain would take it to some really weird and wacky places and the more you review that memory which is the compulsion and try and find proof that you’re not a bad person the more confused you’ll get and more stuck in that confusion.

 

E: Yeah.

 

S: Why is it something you’ve experienced?

 

E: No, no it’s not something that I’ve experienced but I’ve like worked with a lot of people who have been given a diagnosis of OCD and I think cause my background of research and working in mental health is more to do with looking at kind of social and alternative approaches to understanding what’s referred to as psychosis, obviously there’s an overlap of the sort of intrusive thought element. But I remember someone I worked with had a compulsion, let’s say it was always every week, go out to the shop to buy milk on a Friday morning and there was one week where they’d gone on a Saturday morning instead and on arriving home received some terrible news that a friend had passed away. At that point, no kind of particular thoughts to do with, the going to the shop and buying bread had happened, but the next time they went to go and buy bread on a Saturday morning instead of a Friday morning, the same thing had happened. They’d come home and then received some terrible news that a family member had passed away. I’ve changed that round slightly, but that’s basically, you know, similar to what actually happened for this person. And when you were talking about your experiences as a child saying, you said, you know, I knew that it was irrational. And I remember the person saying that, you know, they could never leave the house on a Saturday. And they said, I know it’s irrational. And I just remember thinking to myself, well, actually, if that is your experience, that, you know, if told as a story, someone we could put down to like, that’s a terrible coincidence, you know,  that those two things happened. But to me that doesn’t even really make that thought, the thought isn’t irrational is it? Because your brain has told you a series of things that you kind of believe to be true?

 

S: Yeah, you’re right. Yeah, a few things come to my mind. Obviously with psychosis, and again I’m not an expert in psychosis because I work with young children, it doesn’t really affect them. But it’s, it’s, the difference between OCD and psychosis is the insight. So here I would say he was, was it he, sorry?

 

E: Yeah.

 

S: Yeah, he was probably more on the, it sounds more like worrying. We could call it OCD, we could call it just worrying generally or anxiety. But because he had that insight where psychosis is usually like, because I had this question with someone who has OCD and psychosis diagnosis. And when is it psychosis and when is it OCD – was the question? And I interviewed a psychiatrist on this and I think he said something along the lines of the insights with psychosis, there’s, they can’t tell it’s irrational when they’re in it. Whereas with someone with OCD, most of the time, not always, but most of the time, they can say, I know this is ridiculous, but what if? You know?

 

Yeah, and then that happens in OCD a lot around this. I had it, you know, not too long ago, actually, I wore a particular pair of socks a couple times. And both those times, those days, something bad happened, not like majorly bad, but enough that it made my day a bit crummy. And then I was, next time I went to put on those socks, I suddenly felt really anxious. And I was like, I can’t wear those socks because it’s, you know, something bad’s going to happen or I’m going to have a panic attack or something, so I didn’t wear the socks, which was avoidance and a compulsion. And then I started clocking on to what I was doing and I was like, I have to wear the socks. So on purpose, I made myself wear the socks and now I wear them and nothing bad has happened again. So it was just a couple of unlucky days and in my brain because it’s, all of our brains are smart and it’s trying to protect us. It was like, look, you’ve worn it twice and two things have happened. Why would you wear it again? You know, it kind of sounds like that for this.

 

W: There’s a hashtag, I think on TikTok, that’s been trending recently, hashtag my intrusive thoughts won. And this has caused quite a lot of reaction from the OCD community. I saw a fantastic video of somebody kind of dismantling this hashtag because what people have been often doing is using this hashtag to point to things that they’ve done that point in turn to a sort of hidden or repressed desire. So the example that this person that I talk about it gives is that, you know, I got a tattoo. My intrusive thoughts won, huh that’s hugely problematic and not an accurate representation at all of, of, what we mean by intrusive thoughts when we talk about them in relation to OCD. But I think as well what’s quite interesting about that is it kind of points to a comment that another one of our guests made. And I don’t know whether the because we’re not necessarily recording these in chronological order that they’ll actually appear in the series. I’m not entirely sure whether the, whether we’ll have already spoken with this person or whether we’re about to. But this person was talking about how it’s quite interesting that on the one hand, it’s fantastic that society is becoming much more open about talking about mental health problems. But there does seem to be a schism kind of opening up between what we might think of as, as, acceptable mental health problems and mental health problems that remain a taboo and that aren’t spoken about. And what I find quite interesting about OCD is that for me it seems to straddle both of those things. And I just do wonder whether some of the reasons behind the misinformation around OCD might be because there are some sort of more stereotypical aspects of OCD such as germophobia, which people feel quite, are acceptable things to talk about.

 

But then there’s other aspects of OCD, such as violent, intrusive thoughts, which are still very much taboo. And I think that the reason why I mentioned the a, my intrusive thoughts won hashtag is because for me that kind of kind of shines a massive light on that because it’s like it’s fine to talk about wanting a tattoo and you know my intrusive thoughts won as I got that tattoo and of course that isn’t even I mean on no level could that be said it’s an OCD thing. The people who are least likely to carry out the things that they worry about through intrusive thoughts are people with OCD because because because exactly what you said before Stuart, the reason why we think these things and the reason why we’re terrified about these things that flood into our heads and, and do not relent, is precisely because they’re against everything that we we are. The more you try and not think about something because it’s unacceptable, the more you are likely to think about it.

 

S: I haven’t actually come across that, that movement or hashtag. But yeah, it’s just, I mean,

another example that came to my mind as you were sharing that was, you know, Chloe Kardashian.

 

E: Yeah.

 

S: Did you ever see what she did around OCD?

 

E: No.

W: No.

 

S: So she, um, she, look, I’m not saying, I don’t know whether she actually has OCD or not. I can’t verify that obviously, but, um, she, she started, this like, I don’t know, six, seven, no, probably like five years ago, maybe less than that. She created this brand called Chloe OCD.

 

E: Oh dear.

 

W: Yeah. Yeah. And she had an app, I believe she had an app. It’s all online and Google it, but basically she, she’s someone who loves like, everything in order. So she has all, you go to her pantry and it’s all like colour coded and all in neat mason jars if that’s what they’re called, you know, and it’s all like, and her like, I think she’s basically, I don’t know how she’s, I think she was selling like, selling something to do with this. Maybe it was Tupperware, I don’t know. But it was, yeah, basically around this idea that she has OCD and, but it, the thing there is that could be OCD If she was like, actually, if I don’t do this, something bad’s gonna happen to me, someone else, or I’ll get a horrible feeling I don’t like, but she’s there smiling on like the adverts and stuff.

And it’s like, this isn’t this doesn’t look like OCD, and it’s damaging the–

 

E: Yeah, and even if she does have those kind of mental experiences and that we’ll not ever know about or something, It’s a commercial enterprise that’s essentially just done a lot of damage to any work that the sort of OCD community has been doing to try and get away from that stereotype.

 

S: Exactly. I think she did stop, but I think it took a while and a lot of pressure from the OCD community. Yeah. Oh, and another example just to highlight is like Target in America. I’m sure. No, actually I went in a local card shop around where I live and there was like, an OCD joke card, which I think was like Obsessive Christmas Disorder. And that, that is what Target in America put on a jumper at Christmas, you know, and promoted it. And you’ll go on Etsy or see all these jokes like Obsessive Coffee Disorder. And obviously if it’s people with OCD, it’s, it’s, even if they have OCD in even, like a really mild form, it’s still not a joke. Like at that point, it’s really bothering them and hurting them and affecting their quality of life. And Some of my clients have been housebound, you know, because of it.

 

E: Yeah.

 

S: And we saw improvement, but like it just shows you the depth that it can take someone, it’s, it’s really serious.

 

W: And Stuart, I know that when we were talking at the, before we started recording that you were keen to talk a little bit about what options there can be for people who have OCD in terms of treatment and therapy. I guess to sort of lead us into that, if you don’t mind, it would be really interesting to sort of pick up where we left off with your own personal story, which is like, at what point did you kind of realise that what you had was OCD? 

And then in the, in the, end, what, in both in your personal experience and your professional experience, have you discovered are the most effective treatments and approaches to OCD?

 

S: Yeah, so I actually went to the NHS when I was 17, I think. I had a couple of assessments with a clinical psychologist and then psychiatrist. And yeah, they kind of basically said, yeah, we don’t think the OCD is severe enough. You know, here’s some recommended self-help books, like “go read those”. If that doesn’t help, then, you know, come back and you can do some CBT. Which again I kind of, and this was early 2000s, right before IAPT, all that was created within the NHS. So there was probably even less resources, maybe not in terms of money but in terms of people, probably money too.

But yeah, so I kind of felt, well what’s the point?

Obviously I didn’t read those books because I wasn’t a reader at the time. But yeah, now what I know is, is, even if someone’s got mild OCD, it’s torturing them. Like, so I don’t like that they said that.

 

But yeah, I continued struggling on and off. It did wax and wane for me throughout my 20s, thankfully, but there were moments that were really terrible and then it got slightly better. And it wasn’t until my mid to late 20s that really when real event OCD kicked in, that was the straw that broke the camel’s back and I went to get therapy and did some CBT or ERP, especially, exposure and response prevention therapy and then combined with acceptance commitment therapy, which is a lot about making space for your internal thoughts and feelings, not as bad but just as internal thoughts and feelings. So without judgement, then connecting with your values, what’s important to you in life and taking committed action towards those, even if you have horrible thoughts and feelings. And then, yeah, and then, and then I’ve since that time I’ve been in, in long term therapy, more, more discussing relational stuff and my past and history aside from OCD. And that’s really helped me in other ways. 

 

So yeah, in terms of how I work with people is, is, obviously ERP is the foundation of everything I do. It’s the most researched therapy for OCD and can be very effective for many people like it’s taken some of my clients from housebound to starting to live their life again. But then I also-

 

W: Can you just sort of tell us what, what ERP is?

 

S: Yeah, it’s exposure and response prevention therapy. So the idea is we expose someone to, in some way, the thing they fear. So with contamination OCD, if they’re worrying about a disease on a doorknob for example, it might be that, can we touch that doorknob, which is the exposure, their anxiety is going to spike and the only reason we’re exposing them is so that then they can respond differently. Because normally when they’re triggered or naturally exposed, they do the compulsion. And by doing the compulsion, they’re telling their brain that this door handle was in fact contaminated and dangerous to me. And what we need to do now is to, is, expose them so that they can then respond differently, which is, okay, now we’re going to sit down, you’re not going to wash your hands, we’re going to, and this is where acceptance commitment therapy comes in. There’s various skills, almost like mindfulness based skills that help the person ride out and, and, surf that urge to do the compulsion. And if they wait long enough, their anxiety will come down or their brain will learn that actually I don’t need to do the compulsion and that it’s okay. And at that point you’re starting to break the OCD cycle.

 

So another example with someone who, who’s worrying about being say, a serial killer, it might be that initially we start to get them to write the word serial killer because even writing that word might be too much for them. so and then again that’s the exposure and then whatever their compulsion is, it might be rumination in which case we use the skills we teach them through say acceptance and commitment therapy to refocus onto something more meaningful to them and and maybe acknowledge the thought like,

“Okay, I’m ruminating, I’m worrying,” which is starting to give you a bit of distance.

And then, yeah, making space and, and, allowing it that uncomfortable thoughts and feelings to be there. Because when we don’t allow it, we react to it, which is then going to strengthen the OCD. So that’s kind of ERP in a nutshell. There’s tons on it online that people can go go look at, if they want to find out more. But that’s the foundation of everything I do with my clients. I bring  in acceptance of commitment therapy because that just makes it more tolerable and it’s good life skills that thoughts and feelings are thoughts and feelings. We don’t need to see them as good or bad. We need to learn to make space for them as just a part of our human existence. And then I also bring in compassion focused therapy, which is kind of does what it says on the tin and it’s trying to raise that inner compassionate voice so that when times are tough, you can meet yourself there and be there for yourself and support yourself as opposed to the inner critic which we all have which is basically beating ourselves up which isn’t helping in anyway. So that, that’s why I like compassion focused therapy. So yeah ERP is in theory and according to the NICE guidelines on the NHS is the therapy that everyone should be getting for OCD. So it’s definitely a foundation of what I do but I think you need to add in a few more things to help people.

 

W: I’d love to finish with a quote from your own podcast OCD Stories. You had a guest on called Joshua Fletcher and he said a quote, which I just loved, which is, 

“You are not your horrible thoughts.”

Can you finish off just by speaking to that for a moment Stuart?

 

S: Yeah, yeah, I love Josh or anxiety Josh as he goes by on Instagram.

Yeah, you are not your horrible thoughts. You’re not any of your thoughts, you know?

These thoughts, especially the horrible ones, they, we call them intrusive because they kind of feel like they just come into your head. But you’re not choosing to think those, you’re not choosing to have those, you’re not choosing to worry about contamination or harm or being a serial killer or your religion or anything like that. These thoughts are coming to you. Yeah, there’s it’s nothing to do with who you are. In fact, it probably just identifies your values. So again, with, with, peodaphile-themed OCD, it’s important to talk about that. It’s often people that work with kids or who are parents who are deeply devoted to their children. And that’s why their brain is latching onto this because it’s something that’s really important to them. So it’s trying to protect them, but the brain doesn’t realise that it doesn’t need to protect them in this and there is no danger. And we can never be certain, we have to say there’s most likely no danger, you know, because certainty is a compulsion basically.

 

Yeah, so 100% is you are not your thoughts, any of your thoughts, you know, and that’s where ACT comes in, Acceptance Commitment Therapy of learning to be the observer. And meditation and mindfulness can teach this of starting to see your thoughts as just an experience you’re having as opposed to wrestling with them, reacting to them. And then you’re engaging in the story and you become the thoughts. So we want to start to learn skills to pull back and see that these are just things and experiences that I’m having as a human right now. They don’t have to define me.

 

W: A huge thank you to Stuart Ralph for joining us for today’s show and to you, the listeners for tuning in.

 

E: In next week’s show, Dolly Sen asks to what extent mental illness even exists.

 

W: It’s going to be a fascinating conversation.

A reminder, our website at inmedia.net/LivelyMinds.

Our Twitter is @LivelyMindsPod and our fundraiser for the next series is buymeacoffee.com/LivelyMinds.

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