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The OCD Stories
Ian O’Brien: OCD Story, and research on why people struggle to engage with ERP using over 100 interviews from The OCD Stories podcast (#509)
00:55:30
In episode 509 I chat with Ian O’Brien. Ian is a psychotherapist based in Dublin, Ireland, who specialises in OCD. We discuss his OCD story including relationship OCD (rOCD) and pOCD, getting therapy, support groups, and becoming a therapist. We...
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- [00:00]
A
You're listening to the OCD Stories podcast hosted by me, Stuart Ralph. The OCD Stories is a podcast dedicated to raising awareness and understanding around obsessive compulsive symptoms. I do this through interviewing inspired therapists, psychologists and people who have experienced OCD. Welcome to the OCD stories and welcome to episode 509 of the OCD Stories podcast. And in this one I chat with Ian o'. Brien. Ian is a psychotherapist who specialises in ocd, based in Dublin, Ireland. We discuss his OCD story, including relationship OCD and paedophile themed ocd, getting therapy, support groups and becoming a therapist. We then discuss his research, which was on why people struggle to engage with ERP, in which he analyzed over 100 interviews from the OCD Stories podcast to explore the real challenges people face in in starting, sticking with and completing erp. He shares the three major themes that emerged where people struggled with erp, including lots of sub themes and suggestions for improvements in ERP and much more. So it's really cool to see Ian use the data from the podcast, which is obviously in the public domain and he anonymized it all. But it's, yeah, it's great to get him to take all those brave stories that were shared and create research out of it and he's trying to get it published at the minute. And thanks to our podcast partners. Nocd. If OCD is interfering with your life, NOCD can help. They're licensed therapists, specialise in exposure and response prevention therapy, the most proven therapy for OCD with NOCD, effective treatment that is 100% virtual, is available for children and adults with OCD and most members can get started within seven days on average. No hassle, just real science backed help and support between sessions. Begin your journey@nocd.com or I'll put the link in the episode description. So thank you to Ian for his story and sharing his research. I found it really interesting and actionable. And of course, thank you to you guys for listening. As always, I deeply appreciate it. Without further ado, here is Ian. Welcome to the podcast, Ian. Please do.
- [02:18]
B
It's lovely to be here.
- [02:19]
A
Yeah, it's good to have you on. So firstly, you know, who are you? A little bit about your OCD story and then we'll get into today's topic.
- [02:29]
B
Yeah, sure, sure. So my name is Ian o'. Brien. I'm a psychotherapist practicing at Dublin in Ireland, specializing in working with ocd. I've had OCD myself, so my whole life, as long as I can Remember, I'm, I'm somewhere in my 40s at the moment. And I suppose probably the first time I really noticed it was probably when I was about, I guess maybe about 9 or 10 was contamination fears initially. There was also a lot of nighttime checking and rituals as well. So I'd spend hours at night kind of, you know, checking under my bed, checking behind the curtains, convinced someone was kind of hiding, waiting to, to harm my family. You know, I was quite a sensitive kind of rule following kid with a kind of very strong sense of, kind of right and wrong. Definitely too strong. Know, if someone did something even slightly off, you know, like, you know, throwing a piece of rubbish on the ground, I kind of had this urgent kind of sense to kind of report it. And it wasn't that I wanted anyone to get into trouble or anything like that. It was more that it felt like a kind of responsibility. And I, I couldn't carry this idea that, you know, I'd witness something, you know, quote unquote, bad happening and, and I'd stayed silent. And so I, I'd write all these confession letters to, to my parents and grandparents. And there's a lot of mental rituals as well going on at the time, so saying certain phrases in my head to try and kind of counteract certain kind of intrusive thoughts. And you know, I do it in sets of four. So four seemed to be my, my lucky number. And of course, like, I didn't know it was OCD at the time, I, you know, and looking back now, you can see there was kind of, there was harm, there was contamination, there was kind of moral scrupulosity. But my parents realized that something wasn't quite right. And, and fair play to them, they, they sent me to a psychologist. But nothing much really came of it. There was no real, you know, diagnosis or explanation. And thankfully things did ease a little bit then when I was, when I kind of, I guess went through puberty and, you know, entered my teenage years. I don't know if the hormone changes maybe shifted things, but if only that was the end of it. But unfortunately it wasn't. And the OCD was kind of just waiting for its, its moment. And I suppose it came when I was in my late teens, kind of early 20s, when I started going out with my, my girlfriend, who's now my wife. And you know, we were in that kind of early, kind of loved up phase of a new relationship. And I remember vividly I was kind of out for a run one day and this thought hit me, you know, what If I had been unfaithful and just came from nowhere and it was, didn't matter there wasn't kind of based on, you know, on any kind of reality. It was just, it just absolutely floored me and it started to spiral. And before long I was kind of spending every kind of waking minute trying to go back over the past, trying to figure out had I done something wrong. And you start, you know, you feel a little bit like you're kind of losing your mind. And I was seeing a therapist at the time, so I saw a therapist in my university. Wasn't hugely helpful. And then I was also seeing a private therapist and they did some CBT stuff with me. Wasn't particularly helpful. But to be fair to her, she did recognize that I needed something more. And so she, she referred me to a psychiatrist and that was when I was officially diagnosed with ocd and I was prescribed an ssri. And there's a bit of kind of trial and error with that. Eventually found one which kind of had a good effect. But I suppose they also recognized that I need, I needed specialized therapy as well. And I suppose this was Ireland, you know, 25 years ago. It was, there wasn't much in the way of, you know, specialized treatment for OCD available. So I started doing my research. I, and I came across a team in the UK and you know, we did kind of exposure work over a couple of years and that was very helpful. And then I came across Stephen Phillipson and his articles online and they just kind of, you know, blew my mind. And I, I kind of thought, you know, this, I gotta work with this guy. So I, I reached out to him anyway and, and we started working together mainly around my pedophilio cd. So it kind of morphed into that at this stage. So I've had lots, lots of teams over the years, so. And index card therapy, which he's talked about many times in this, on this show, hugely, really difficult work, but it absolutely changed my life. And it was around this time as well that I, I found OCD Ireland. So, you know, that was a real lifeline as well. So, you know, I started attending some of their support groups. So this is OCD Ireland is a, is a, is a organization in Ireland that runs support groups for people with, with OCD and related conditions. So attending their support groups and again, just being amongst kind of like minded people, that kind of sense of community that, that made the, you know, that meant the world to me at the, at the time. So that was a big part of it. Of my recovery as well. I then I was a bit kind of more stable place. Like I started volunteering with them and I then stepped away for a little bit and actually I've got back involved in the last few years and I'm. I'm now one of four directors helping to run the organization. And just saying to you, before we came on air, there's. We've just received our charity status as well recently, which is a. A massive deal for us. So. Yeah, so anyway, that was. That was a big part of the recovery as well at the time, in terms of the kind of pedophilia ocd. Like, I suppose that it didn't start with, I suppose me becoming a father. It was. It was more when all these kind of young people and babies started showing up in my life, kind of nieces, nephews, friends, kids, all these kind of small, innocent, vulnerable people. And I. OCD just. It kind of preyed on that and. And then I became a father for the first time as well. And. And that turned the, you know, the. The kind of. The volume right up and. But I had Stephen then. I was doing the work with him, so I kind of had the tools and I. I kind of knew what I was dealing with. It didn't make it easy. It was still really difficult, but it definitely made it possible. And I suppose I now have three kids. The eldest has just become a teenager and, you know, thankfully the last few years my OCD has been in a much better place. It's still very much part of me, you know, and I think it always will, but it definitely doesn't control me the way it did. And. Yeah, so that's. That's a bit about my story. So it's the other little bit on that I might just touch on briefly because it kind of brings us into what we're going to talk about is, I suppose, me becoming a therapist then. So if that's okay, I'll talk about that for a sec. So I suppose while all that was going on, I was living another life in the corporate world. So I suppose I was kind of. It was kind of coming up. Nearly 20 years I was doing it, and as I was getting kind of closer to 40 and I started kind of thinking to myself, you know, is this. Is this really what I want kind of, you know, my life to stand for? I'd done a diploma a few years previously in psychotherapy, and I loved it, but I didn't. I didn't go any further with it. And as I got closer to 40, I kind of, that's kind of, I suppose it started to come back and I started to think, you know, I've got to do this. I think it happens to a lot of people when they get to the age of 40, you know, you start thinking about your time left in the world and, and so I said, no, I'm going to do it. And my family were very supportive and, and so I applied, I got in and I spent the four next four years retraining as a therapist. It was a part time integrative master's. So similar to enough to what you, you might have done, Stuart. And yeah, it was really intense, really rewarding. Particularly when I got to start seeing people with, with ocd. That's when I knew this, this is absolutely where I was meant to be. I, you know, I think there's something about when you're sitting across from someone and you know, you're hearing the same kind of fears that you once held yourself and I think it makes it really special. And I think that's a big reason for, I suppose why I'm kind of so focused now and trying to provide something that maybe didn't exist when, when I needed help in Ireland. And that's kind of, you know, a local, accessible therapist who really gets ocd, particularly in an Irish context. And so that's what I'm focused on. I've, I've started a private practice that's focused on, on, on working with OCD exclusively. And it's, it's still our very early days, but it's been, you know, really encouraging so far. So there you go. There's, there's my story.
- [11:53]
A
Nice. Thank you. That's uh, I would ask you a lot more questions about your story, but of course we want to get on to the research. But it's, yeah, I mean it's great. I mean over the years I've heard many of the interactions I've had with Irish people with ocd. Obviously been wonderful, but they've all off the common thing they've said is, is not. There's no therapists in Ireland for ocd. That's obviously a lie. There are some. Not a lie that, you know, there are out there. They just couldn't find them. But it's a common theme and don't get wrong. I hear that in the UK a lot. I hear it in the States as well, but I think in Ireland it's been the majority of people I've spoken with that's been feedback and so it's great to see that you know, you, you're doing the work of OC island and everyone else involved with OCD island and then the work you're doing now as a psychotherapist, no doubt over time you'll hopefully hire people or bring on other therapists to increase that. And you're obviously doing Game Changers in Dublin which may have happened by the time airs. So you did say you wanted to do that more often in the future. So, you know, hopefully things will change over the next 10 years. We need to change in every country but obviously in Ireland as well, so.
- [13:06]
B
Oh yeah, yeah. I tell you, you're spot on and like, I, I, it's exactly what I hear, you know, day to day is particularly in the work with ocdr and we get a lot of people contacting us and they just can't, they can't find the help and you know, and more often than not they, they turn to, to, to people abroad which, and it's great that people can do that and, and that, you know, that's more of a done thing now particularly, you know, in the last few years. But some people need that, you know, that kind of in person experience and they need someone locally and it just, unfortunately it just, there isn't enough people. It absolutely, it's a, there's a massive shortage and hopefully we could start to see a bit of a change over the next few years. But there's a long, long way to go.
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A
Yeah, yeah, yeah. And yeah, and no doubt you'll have a real positive impact on that. So, you know.
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B
Yeah, yeah, no thanks.
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A
And yeah, so let's, let's jump into your research. So yeah, tell us what it's called, what it's about and then we'll get into like the nitty gritty of it.
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B
Yeah, yeah. So as part of the, so the training I was referring to just there, the, the masters. So we're required to do a research project. So it was always going to be about OCD for me, no surprise. But I suppose I wanted to do something which might be a little bit different and maybe speak to some of the struggles that I knew. Now there was limitations on what we could do because it was a master's project. We couldn't, we couldn't interview people in distress, in crisis. So I meant I kind of had to think a little bit creatively about what I could do. And then that's why I started thinking, you know, I was already listening to these amazing stories on this show every week. People were talking about their OCD therapy and and importantly, they were doing it in their own words. They weren't wasn't answers to, you know, structured research questions. It was very kind of raw, honest. And I suppose I started thinking myself, you know, what if this could be my, my data set? And, you know, because they're publicly available, I guess the university were very supportive of it. I reached out to South Stu to let you know what I was planning on doing. And then that's, I suppose, how it started. And I suppose, and just, I suppose call out because people will probably be. This will be on some people's minds is. Although they're publicly available, I suppose I also was kind of. I wanted to respect the people on the show. And I know this is very important to you. And we initially chatted. People didn't come on the show to be researched. So I wanted to make sure I approached it with as much care as possible. And so. And you'll hopefully see that in the, in the final stage. So, you know, I removed anyone's names or removed any kind of identifying information and hopefully I treated the stories with the care they deserve. So anyway, that's just a little bit on that because that might be on some people's minds. So in terms of, you know, what I did. So what did I do? I'm just going to bring up some stuff here that I've got to keep me on track here a little bit. So as I was doing the research, it was last year when I was doing it, so it was over this course of about a year I did it. So at the time I did it, I suppose the kind of cutoff was maybe kind of mid to late last year. So altogether I kind of screened over 400, I suppose, episodes of the podcast. So initially I did. I used a sort of technology as much as I could just to help me initially, just to try and bring that number down a little bit to a more marginal number. So I use transcription tools, a lot of keyword searching just to try and kind of hone in on the episodes which are most important. And then, and then once I kind of did that, it was a huge amount of kind of manual reviewing. So listening to the stories and segments of the stories over and over and again, just trying to familiarize myself with the. With the data. And I suppose what that brought me down to was a kind of a more focused set. There's still quite a lot. It was 103 episodes, I suppose that that where people spoke in detail about ERP in particular. I'll get onto that now. So especially the parts that they found difficult or complicated. And I suppose, and what I did then was that with that is I use something called reflexive thematic analysis. So that's not going to go into all the detail on that. But that really means looking for patterns in the, in the data, not just in what people said, but kind of what their stories reveals on underneath. You know, what made it hard to start erp? What made it hard to stick with? What do people do when it's start. And I suppose the core question that I was trying to answer in the research is why is your erp, even though we know it's proven to work, why is it so hard for people to engage with it in real life? Because it is. As much as we talk about it being the, the gold standard research says that up to 30% or so of people, maybe 25 to 30% of people refuse it. The same number again drop out. Many others never make it to treatment in the first place. And I suppose when I looked at the existing research, I kind of, I saw somewhat of a gap. I suppose there was very few studies looking at what gets in the way, especially not with the kind of, kind of depth and nuance that comes from listening to people's stories in detail. So that's what I did. So I spent a year or so doing the research and at the end of it, I suppose what came out of it were kind of three major themes. And because each of those kind of, you know, talks about a little, talks about a different kind of struggle, you know, not just the kind of practical difficulties of doing erp, but the, you know, the emotional and psychological difficulties of trying to engage with it. And so, and then within the themes, then I also identified sub themes and you can think of them a kind of more specific patterns that come up again and again in people's stories. So we might talk through each of the teams and sub teams if that's.
- [19:34]
A
Yeah, that'd. Be, that'll be really good. And it was a good breakdown of why, why you did it. And yeah, you're right. The, the numbers you shared about dropout, failure to launch and not launch start. That's my term, not my term. You know, I'm not saying that's a clinical term used. Yeah, it is effective for many people. But if it's that whole, that hashtag that sometimes therapists use and I guess non therapists of like CBT works, like hashtag CBT works they will use on Twitter and social media. And I was like, yeah, it works sometimes for some people but they've got a. They've got to attend. If they don't attend or they don't stick with it, it's not going to work. So. And that's the same with. When I do space with. With parents of young people. Space was created because cbt, like, the parents would be like, it's great, but my kid won't go to therapy. It's useless.
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B
Yeah.
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A
So it's that, like. Yeah. So it's important to understand why can't we get people to it or keep them in it? Because. Because, yeah, it will work, hopefully, if we can get them there and keep them in it.
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B
Yeah. And those. Those. They're not small numbers, like those kind of 30% of people dropping out. No, there are. That's a lot of people left thinking, you know, maybe. Maybe it's not the right therapy for me. Maybe. Maybe I wasn't strong enough. Maybe, you know, all sorts of things and we got to do better for. For those people. We really do.
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A
Yeah. If you. I guess if you think like, let's say a million. It was probably more than this, but a million people's tried ERP. 300,000 have. Have dropped out or not.
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B
Yeah. Which is a lot.
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A
A lot of lives. Yeah.
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B
Okay, so the first theme. Okay, so three major themes, and then within them there's some sub themes. So the first theme is called. I call it the Inner Tug of War. So this was all about the kind of emotional conflict people felt. So. So this is like, I imagine, really wanting relief from ocd, but also being terrified about what ERP might involve or. Or does involve. And that kind of push and pull was at the heart of a lot of people's stories. So that's the kind of major team. And then we'll talk about some of the sub themes then within that. That's okay. So, yeah. First one I called Afraid to Start. And so this kind of captured the experience of people who found it, you know, so intimidating, so overwhelming that they couldn't even begin. I know this wasn't about laziness or a kind of lack of motivation or anything like that. This was. And it's like kind of slamming into a wall of fear before you could even begin the therapy. And, you know, for a lot of people, just hearing what Europe. What. What was involved was enough to turn them away. A lot of people talked about researching Europe and Googling it and coming across kind of horror stories. Others talked about, you know, speaking with loved ones or even therapists who made it sound, you know, extreme or harsh. And I guess some of this does reflect a kind of a broader issue. It definitely has a public perception problem. Erp, you know, despite being one of the most evidence based treatments we have, it is still kind of widely misunderstood by the public. It was actually an interesting study. If I should bring it up here just while we're talking about it, just when I was doing the research I came across this. So it was a study that came out last year which, from Southern Illinois University. So Johnson is the kind of lead and I'll put in, we can put some of the links in, in the show notes. And what they did is they interviewed members of the public. So I think it was about 600 people. I think they, they interviewed and they were given OCD vignettes and ERP was described as well. And I suppose what the survey and what the results showed is that people in general viewed it as dangerous. This is ERP they viewed as dangerous, traumatizing and unet. And they rated exposure effectiveness as below other interventions that have been shown to worsen OCD symptoms. Which, that kind of says it all. That's kind of what we're kind of up against. So you know, and, and it's not just, it's not just the public. Even in the, even within the therapy field, many conditions hold kind of very inaccurate views, I would say. And this came up again again in people's stories as well, therapists who viewed it as too risky, too r. Of course none of that's true when ERP is, is, is delivered well. So I guess just in short, I guess this theme, it's not about someone who doesn't want to get better. It's about people who are overwhelmed, misinformed or unsure of what to expect. And I think, you know, this is where our approach as clinicians can make a big difference. And, and just to say so, the folks of the, you know, the study was not about coming up with fixes or anything like that. It was about listening to the people's stories. But I suppose, I suppose I, I did start wondering about these afterwards and I did some kind of follow on research myself just to, just to see, you know, I suppose what, what, what does it say in, in the research in terms of how best to deal with some of these and to work with some of these obstacles. And so my touch on some of these definitely won't be the exhaustive list forever, but I'll call out a few things at the end of each. Something if you want to chime in as well as you with any of Your perspectives. But I think when it comes to this, you know, people being afraid to start, I think certainly if they're, you know, if they're in the room with you as a clinician, I think definitely providing a more personalized psycho education can make a big difference. That might mean kind of walking through real life examples early on with the client, showing how the exposures are built collaboratively and collaboratively and, you know, paced with care. I think a lot of people benefit from seeing sample exposure hierarchies. I think that that can really help. And many people, I think, benefit from hearing stories from others who have already done, successfully done erp, and that might mean listening to this show. I think that's a great way to help kind of demystify it and you know, so it's, so it's, so it's less of this kind of terrifying unknown and something that real people with support.
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A
Yeah, I really like that idea of having example hierarchies. Just thinking as a therapist of almost having a few different themes, example hierarchies laid out in my folder next to me that I can just quickly go, here you go, have a look. Here's an example for sexual orientation or religious OCD or. Yeah, I think that that's a nice idea.
- [26:29]
B
I think it's hugely helpful. So that was the first one within the inner tug of war. The next one was a leap of faith. So afraid to start with people who couldn't get started. And then a leap of faith were people who did start, but I suppose when they did start, they didn't quite trust or maybe understand the therapy. And I totally get that because when you first hear what ERP involves, you know, it does sound so counterintuitive. And a lot of people in the study talked about, not a lot, but some people in the study talked about how they misunderstood what ERP was trying to do. They, they thought maybe the goal was to try and get rid of their thoughts. And when they found out that actually, no, we're going to change your relationship to them, they, that came as a, as a, as a shock. And then others talked about how it clashed with their kind of personal values and belief systems, particularly in areas around religion, identity, morality as well. And, and those clashes weren't always handled with care. And again, when thinking about, you know, how to work with some of these, I think again, a more personalized psychoeducation can really help again. And, you know, it's not about kind of giving this kind of one size fits all explanation of erp. It's about helping people, you know, make sense of OCD and ERP in the context of their values, their fears, their language. And that might, you know, that might also include trying to kind of unpack some of these kind of misconceptions that are out there, thinking about how it fits with their personal or spiritual beliefs and really importantly, showing how it's possible to do without kind of compromising on who they are. I think that that's really, really important.
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A
Yeah, yeah, I, I completely agree. Yeah. Because if a client, it feels that their values or beliefs or religious beliefs are not being taken into consideration, they're going to drop out. They are, right?
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B
Yeah, yeah, yeah, they absolutely are. It's, it's not just a kind of a technical process, Europe. It's, it's very much a trust exercise. And if, you know, if that trust is, is, is shaky, you know, people, people may start but, but they're going to hold back and they may then end up dropping out. Not because, you know, you know, their treatment kind of quote unquote resistant, but because it never landed with them in the first place. No.
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A
Yeah, yeah, exactly that. Like I always say to my clients, one, I'm never going to make you do anything you don't want to do in ERP to just give them that comfort of their in control. I'll, I'll push you, slash, encourage you as much as you want to go. And when you hit your limit, I might challenge you to see if you can go further. But I'm not going to make you do anything you don't want to do. And then if, if anything we suggest ever goes against your values or beliefs, just let me know and we won't do it.
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B
Yeah, beautiful.
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A
Because. Yeah, I think just. Yeah. Empowering the clients so they don't feel like they're trapped or being forced into something.
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B
Absolutely. And I think they really need to feel, you know, like they have, they have a big say in terms of how the exposures are developed and, you know, which ones to tackle. Now I think that's really important that they have good input into that. Okay, so the next one is the grind of the work. So this is about people who do start and so, and they're on board, at least in theory. But then the actual doing of ERP can, can feel kind of brutal, to be honest. So people described it as grueling, relentless, emotionally draining. Because it's not like it's, it's not a one off intervention. It's a, it's a daily deliberate practice of in, in Facing what you fear and you know, that takes, you know, discipline, discomfort, and it often takes a lot of time. And that can really chip away at people's motivation. And that's why research talks about how important it is to set kind of clear expectations at the start. So when people know progress will be gradual, it won't necessarily be linear. You might, things might get a bit worse before they get better. I think they're. They. They could hopefully feel more supported and less likely to blame themselves when it gets hard.
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A
Yeah, yeah, no, I like that one.
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B
Yeah. So, yeah, go for it.
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A
Yeah, no, no, keep going.
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B
I'll keep going. Yeah. So next one is step too far. So this is all about when exposures felt too much. So kind of when I almost pushed people to a breaking point. And again, it wasn't sorry that exposures were necessarily too challenging in general. It was just that they weren't matched to what the person could tolerate at that time. And I think that's really important because reach was talked about how important more challenging exposures are. There's huge value in them. But especially when there's kind of variation in the intensity, I suppose the difference between the kind of discomfort that helps you kind of grow and stretch and the kind of distress that completely shuts you down. And I think unfortunately that's what can happen, you know, when people talk, people, so you talked about, you know, when it went too far, too fast. We can just lead them to shut down and question, you know, whether it's worth doing even when, even when they believe in it. So this again kind of points, you know, a need for a more kind of tailored approach, you know, where, where kind of respecting a person's limits and helping them to kind of build their kind of capacity in the kind of right way. So in terms of how we do that, I think there's lots of different ways we can do with exposures. If the exposures that we're doing maybe are too intense, maybe imaginal exposures can be brought in kind of values based tasks could be brought in. I think absolutely key for me as a clinician is doing more exposures in the room. I think there's no better way to know if to gauge how a person is responding and whether or not something is too much for them down by doing it in the room, getting live feedback and helping a client, kind of coaching them through it. So yeah, that stands out for me.
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A
Yeah, no, I agree. That is a good idea. And the same with urge surfing in act of trying to urge the. The desire to do a compulsion. The room's really important because you can, you know, they, we can trigger them with the exposure. We then obviously know they shouldn't do the compulsion. We can then help them with skills and, and, and whatever to ride out not doing the compulsion. And I think they need to do that many times in session to then get that muscle of. I know I can ride this out at home too, because if we don't, then they go home and they just, Just find it. Some clients find it really hard to ride out because you've not, or I've not as a therapist done it in session with them enough.
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B
Yeah.
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A
Ride it out.
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B
Yeah, no, definitely, I think. And if you're not doing it in the room, I think that's a huge missed opportunity. I think it'd be really hard to expect someone just to, to be talking about in the session and then for them to be going off and doing it by themselves. I think that that's, you know, they. There's a lot to be said as well for having the therapist in the room there to help, you know, to give you that support as you're going through them for the first time as well and learning those skills.
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A
Yeah.
- [34:20]
B
Okay. So the next. The final sub theme within this kind of major theme was exposed by Exposure. So that was what I called it. So this is. I'll probably touch on something which doesn't get maybe talked about enough, but your show has done a brilliant job of bringing more into the open stew is shame. So like for many people, you know, doing exposures meant. And doing ERP meant not just facing fear, but the fear of, of, of being seen, of exposing parts of themselves that they kept hidden maybe for years, maybe forever. And I suppose they were often obsessions about more kind of stigmatizing topics like sexuality, morality, religious doubts. For some people, saying the thought out loud felt unbearable. And, and the cost of that could be huge. The kind of shame is made worse by physical reactions during exposure. So things like arousal or other body sensations that kind of felt terrifying and confusing. And I guess in those moments people aren't just anxious, they're actually scared that the exposure actually proving their, Their worst fears. And that makes it really difficult to stay with the process. I think what can really help here is there's lots of things here. I won't go into them just in the interest of time, but I think the therapeutic relationship is absolute. Think when people feel safe, understood, and not judged, I think they are absolutely more likely to open up. And I think that can really make Mark the kind of turning point in, in a person's recovery. Johnny was on the show a few weeks ago talking about the therapeutic relationship. It was a great show. And he gave this beautiful quote by Irvin Yalom and just. I'll bring it up here. He said the act of revealing oneself fully to another and still being accepted may be the major vehicle of therapeutic help. And I think that that captures it beautifully. And revealing yourself, that's not about reassurance or anything like that. It's about something much deeper. It's about being kind of mess in all your, you know, messiness and not being turned away. And I think. Yeah, I think that's what it's all about.
- [36:34]
A
Yeah, yeah, you're, it's an exposure in a way. You're exposing your vulnerable self, your true self, your core essence, whatever we want to call it.
- [36:42]
B
It. Yeah.
- [36:43]
A
Being seen by another and then is terrifying and then being accepted is huge relief.
- [36:49]
B
It is. No, it absolutely is. I remember myself even with my own OCD and my pedophilioc, like everything that was really difficult stuff to talk about. And I just remember how well Stephen did it and how, you know, in terms of how he normalized it for me and took away so much of that shame. And that, that just is, you know, that, that's, that that made such a difference in, in, in, in my recovery and. Yeah, but it requires that relationship and that, you know, that takes time to build up.
- [37:23]
A
Yeah, I think Stephen does a really good job of that. Deshaiming it. Cool. So. Yeah, what's next?
- [37:31]
B
Okay, cool. So I'll fly through these now just to make sure we capture them all. So the next kind of major theme was as a mind of its own. And so within this there's kind of two sub themes. So the first one I've kind of called past and present burdens. So this is about kind of how kind of co occurring difficulties like depression, trauma, kind of deep rooted kind of self worth issues or struggles rather can make ERP feel, you know, really difficult to do. People, some people described having to do foundational work like self compassion, building self compassion before they could, they could do the erp. And others talked about being so worn down by depression that you know, even doing basic tasks was beyond them, let alone doing the exposures. And then others talked about trauma and how kind of ERP exercise that were designed to provoke distress would, would sometimes stir up kind of painful memories and flashbacks and, and not only bring anxiety, but you know, bring just dissociation for, for some of the People. And I guess the biggest takeaway for this is, you know, we can't treat OCD in isolation. You know, we have to consider the full kind of emotional and psychological landscape a person is navigating. And just one interesting one to call out, just when I was looking at the research is there's a really interesting bit of research done in. It was in Virginia, and I think Craig Gordon is the main researcher for anyone interested. Anyway, they developed about this kind of clinical decision making model for assessing ERP readiness. And I think it's a really interesting one, something we definitely need more of. And so what that does is kind of suggest that when someone is maybe experiencing, you know, suicidality thoughts or overwhelming depression or active trauma, other supports may need to be prioritized first, not to replace erp, but maybe as a necessary kind of precursor or companion. So we kind of. It's really good. It's kind of the stepwise model, and it helps a clinician kind of work through it to see whether those other supports might be needed before or alongside erp.
- [39:46]
A
Yeah, that's really interesting. I wasn't aware of that.
- [39:49]
B
Yeah, that's a good one. And the next one, this is a shifting target, I called it. So one of the things that came up time and time again is kind of how slippery OCD can be. Even when people kind of felt like they were making progress, the OCD had a way of kind of shifting shape. So people described doing ERP for one fear, only for it to come back with a different one or the same food fear in a slightly different disguise. And also then within this theme, people talked about mental compulsions, so, you know, how kind of automatic and hard to catch they were. And some people talked about how difficult it was to even understand what counted as a compulsion at first, especially when it's all happening kind of silently in the mind. And that makes it really hard to do ERP because, you know, it's really hard to resist a compulsion if you don't even know you're doing it. And then also, then finally kind of within this, this kind of sub team, some people talked about, you know, becoming obsessed with actually doing therapy, the quote, unquote, right way. So they'd write out dozens of scenarios, analyze every exposure, constantly questioning whether they were kind of doing it right or wrong. And this kind of kind of perfectionism can turn therapy into a compulsion itself. And I guess if. If, you know, therapists aren't trained to recognize that they can accidentally reinforce the same patterns that OCD thrives on. So the the doubt, the over analysis and kind of never feeling done. So.
- [41:25]
A
Yeah, okay. Wow. Yeah. And that said there was two under that one, did you say?
- [41:33]
B
Yeah, so they're the two. So that was it. So there was the past and present burdens and which is all about the co occurring difficulties and then the shifting target. So that's within the mind of its own theme. And then the last theme is the gap between theory and practice. And so this kind of looked what happens when the idea of ERP makes sense in theory but becomes messy, inconsistent and even harmful in practice. I won't go through all these because it just takes too long. The first theme is called Life in the way. And this was when people talked about logistics when trying to juggle ERP alongside work, parenting, school, illness and constantly feeling like they were struggling to keep up. People also talked about family dynamics within this theme. So how well meaning family members would inadvertently reinforce the OCD cycle by providing reassurance or accommodating the ocd. And I suppose you know what can help there is you know, bringing family members maybe into the therapy even briefly and so they can learn more about ocd, ERP and how to respond in more supportive ways. That's that one. There was one also out of reach is the next race sub team within this one. And this is where people talked about how the fear they kind of needed to face in ERP was, was really difficult to simulate especially this was especially common in teams like relationship ocd, existential worries or moral doubts. So especially where the kind of triggers are more abstract or internal. And of course that's where imaginal exposures come in. But people in the study talked about how they found these difficult to connect with. They felt fake and they lacked the kind of emotional punch that maybe a real life exposure might, might give you. So that was that was that something. And then the kind of second last one. Just very quickly I'll go through these. Sorry, I know I'm blitzing through them here, but is let down then is the, is the second last one. So this is again, this is for. I suppose some people talked about how the ERP they received wasn't enough, particularly for people experiencing more severe ocd. They described how the kind of standard pace of therapy wasn't enough to keep up with what they were dealing with. You know, they needed more structure, more support, more intensity. And then others talked about a different type of kind of letdown experience within this sub team and that was relapse. So they'd worked hard, felt better and they assumed they were done with therapy. And these people weren't necessarily told that relapse is not only possible, it's quite normal. And so unfortunately, when they didn't know that, when the symptoms reoccurred, they kind of felt like therapy had failed them. And that's what research talks about, how important it is to help clients prepare for these setbacks. Not as a what if, but as a kind of a very expected part of the process. Yeah. And then the final one which feel very strongly about is one which they called harmful, quote, unquote, quote, rather erp. So for some people, the problem was that problem wasn't that ERP was hard, it was what they received wasn't ERP at all. So they described therapy that missed kind of, you know, the most essential parts of the process. So exposure without response prevention or being told to distract themselves mid exposure and how that made their OCD worse. Others talked about being with therapists who claimed to have expertise in OCD but really didn't, and that led to more harm than help. And unfortunately, I suppose these aren't isolated cases. Even research talks about how even like CBT trained clinicians, many of them lack sufficient ERP training. And unfortunately that is all too common.
- [45:33]
A
Yeah, no, I agree with that and I've heard that a lot. Not so much recently, but previously over the years, people would be seeing CBT therapists and then I'd say, have you done erp? And they'd say no. And I'm like, you know, and these are often accredited CBT therapists in the UK that are BABCP accredited who done ERP training. So it is curious why then ERP is not being used. Whether that's. They don't believe in. It scares the clinician.
- [46:00]
B
Yeah.
- [46:00]
A
Whether they just don't understand OCD enough where they realize that you have to use erp. We're not have to. It's advised. Say it's, it's curious, but it's less so now. So maybe something's changed in the last few years. But, you know, I've heard it a lot.
- [46:17]
B
Yeah. And probably for all those reasons I think you, you, you talked about there. I think it's. It's all of them at play at different times. And, and it's, it's. And it's not. Not right particularly. I suppose I really pains you want to hear people who are, you know, are with therapists who do claim to be experts and, and they aren't. And you know, it's, that's really not fair on the on the individual and you know, they deserve better than that. So there's all my themes and sub themes, I suppose, just to kind of sum it up, I guess one of the most important takeaways from all of this was that people didn't struggle because it was necessarily the wrong treatment. It was their own therapy. They struggled because it was delivered in the wrong way for them. When it felt too generic, too fast, too inflexible, they were left feeling stuck and misunderstood. And these people weren't looking for an easier path. They were willing to do the hard work, but they needed something more responsive. And that's why in the study, in the kind of discussion and the conclusion, I talk about how what the findings suggest is a need for a more personalized approach, one that doesn't just follow the protocol, but actually considers what the person is bringing into the room in front of them, emotionally, psychologically, socially, practically. Now I know many people will say, well surely that's what everyone does. Is that not what a therapist is supposed to do? And yes, in theory, but what these findings suggest is that not everyone is getting that, that kind of experience. And there are lots of great therapists out there, many who appear on this show, who absolutely practice in very responsive, person centered ways. But I guess the stories and the findings which I've developed here suggest that there's still lots getting in the way for many people and I think a more personalised approach can really help with that. But it's, I suppose, how do we do that? How do we help more clinicians to do that? There's very little formal guidance out there on how to personalize ERP without compromising its effectiveness. The clinical decision making model that I referred to earlier from Gordon and colleagues, that's a great example of, you know, doing some of this where you're trying to get the balance right between structure and attending to individual needs. But we need a lot more of that need to make sure that that gets in front of more clinicians. And.
- [48:54]
A
Yeah, yeah, no, no, I agree there's work to be done. Yeah. But I think, yeah, your research in this podcast, you talking about it has hopefully inspired a lot of therapists to rethink the way some of some of the things around erp. It's definitely made me, I've got a few ideas to take away and maybe implement for myself, for my clients and in hopefully anyone listening who isn't a therapist, who's a person with lived experience will take something to either speak to their therapist about or look out when they're Selecting a therapist or just factor into their own care. But yeah, no, I also want to thank you because, you know, I've known in some way this, this podcast was like a piece of research for me, you know, but it was one no university was ever going to take seriously because it wasn't done in a structured, systematic, methodological way. So. So you going and doing that is, you know, is brought it to life. So I appreciate you, you using the data.
- [50:01]
B
Oh, no, I just want to thank you and I want to thank all the, all the people who contributed their stories. It wouldn't have been possible without them. And just the research is still going through a process. I do want to get it published ultimately. So it's. I'm working with the university on that at the moment. And just to also say just something you said there about maybe taking some ideas to your therapist. I have developed some resources on the back of the research and so I put them up on my website and we put the links in. But so I didn't want just the findings just to sit there. I wanted to actually give people something that they could actually, you know, some, some kind of insights and options that they could maybe take to their therapists and maybe say, you know, maybe this is what's getting in the way. Maybe this is something we can work on. So I've taken each of the themes and I've created a set of resources around each and yeah, and I've tried to bring in as much language as well from the interviewees into it. So the hope is that when people read through it, they might, might recognize themselves. So that's there up on my website if people want to take a look. And yeah, hopefully we'll get this study published in the not too distant future.
- [51:09]
A
Yeah, no, that's awesome. And I'll put a link to your website and yeah, stick with the publishing process. It can be a pain in the ass.
- [51:15]
B
Yeah, you know, exactly.
- [51:16]
A
In hindsight, I'm, I'm so proud I did it, you know, but in the moment I'm like, why am I doing this? This is harder than the actual, at least for me, but I had a lot of editing edits and rewrites to do. You might not be as bad as mine.
- [51:30]
B
Oh, I'm sure.
- [51:31]
A
But it was, it was worth pushing through.
- [51:35]
B
So.
- [51:36]
A
Yeah. So, okay, so you pick up the phone call 20 year old you. What'd you tell him?
- [51:41]
B
Oh, yeah, he's like 20 year old. And that was really when I was, I was, I was at the height of it when it really took hold. Yeah. I would say. I would say, you know, I know how hard you're working to try and hold everything together, but I'd like him to know that, you know, one day I will understand this for what it is. And not only that, I'll maybe help others through it. And I think, most importantly, I'd want him to know that you're not alone. You're not the only one who thinks this way and feels this way, because I think that is one of the. The cruelest parts of OCD is that time between when the first. When the symptoms first come on and. And when you actually finally get to understand it, which can be. Can be months, years. For many of us, it's many, many years, and they can be really terrifying and lonely years. And so for me to be able to, you know, tell them that, actually now there is a. There is some logic behind all this, and, you know, you will understand it one day.
- [52:44]
A
Yeah, I like that. And then you got a billboard in Dublin, or do you want written on that billboard?
- [52:50]
B
Yeah, I did think about this before, so just, I suppose with a kind of nod to the research, I would say something like, start where you are. I'll meet you there. Because I think good therapy shouldn't demand that you be anyplace else. It should meet you exactly in your reality and help you take one step at a time. That. That is the work. That's enough. And that's what I want for people to. To experience.
- [53:19]
A
Yeah, I. I really like that. Yeah, absolutely agree with that. Well, lastly, is there anything else you wish you could have said or shared today?
- [53:27]
B
No, just. I just want to say thank you to you. Sorry, that's. That absolutely. Is. Something I want to say is I want to say thank you for everything you've done. You know, I talked in the research, maybe. Actually, I talk in the research, maybe not so much. I didn't bring it up here, but even in my own journey, in terms of the importance of community. And I think for many of us, this. This podcast is a big part of that. And I suppose I also talked about this idea of more. A more personalized approach, and this podcast is doing that. It's encouraging that it's. As we're bringing these kind of lived experiences, stories into the open, and by bringing on different clinicians from different backgrounds, you're encouraging us all to look at OCD and its treatment in a much more human and nuanced way. So I just want to thank you for that. I'm. I've been listening to this for years now and I will continue to listen to it for as long as this comes out.
- [54:23]
A
No, I appreciate it. It means a lot, honestly. Thank you. Well, look, thank you for everything and good luck in your career and maybe one day more research.
- [54:34]
B
Yeah. And hopefully I'll see you over here in Ireland soon.
- [54:36]
A
I'll be over someone, definitely. Thank you for listening to this week's podcast and thank you to our patrons who helped make this episode possible. And if you would like to find out more about Patreon and the rewards and benefits, then there will be a link in the episode description. If you enjoy the OCD Stories podcast and would like to support us, please subscribe and rate the show wherever you listen to the podcast. And thank you to NOCD for supporting our work. If you want to find out more about nocd, you can click the link in the episode description and quick disclaimer. Guys, this podcast is not therapy. It is not a replacement for therapy. Please seek treatment from a trained professional and until we speak, take care.