Aug 28, 2019
What are 'intrusive thoughts' (we all have them) and what has CBT for OCD got to do with a polar bear? People sometimes talk about being "a little bit OCD", but the reality of obsessive compulsive disorder is much more difficult than a tendency to line your pens up or be super tidy.
Ashley Fulwood talks to Dr Lucy Maddox about his journey towards recovery from OCD with the help of CBT, and Professor Paul Salkovkis explains how CBT works.
Show Notes and Transcript
Want to know more?
For more about BABCP check out: babcp.com
To find an accredited therapist: http://cbtregisteruk.com
Ashley's charity, OCD-UK is here, and there is a lot of useful information on their website: https://www.ocduk.org/
And another OCD charity, OCD Action, is here: https://www.ocdaction.org.uk/
Break Free From OCD by Fiona Challacombe, Victoria Bream Oldfield and Paul Salkovskis
Overcoming OCD by David Veale and Rob Wilson
Lucy: Hi and welcome to Let’s Talk About CBT with me, Dr Lucy Maddox. This podcast is all about cognitive behavioral therapy, what it is, what it’s not and how it can be useful. Today we concentrate on cognitive behavioral therapy for obsessive compulsive disorder, or OCD.
Before we meet this week’s interviewees I’d like you to try really, really hard not to think of a polar bear. Do not imagine a polar bear. What did you notice? Did you see a polar bear in your mind’s eye? We’ll come back to that later.
For one of this episodes interviews I took a train up to Belper, near Derby to meet with someone who has had personal experience of OCD.
Ashley: My name is Ashley Fulwood and I work for the charity, OCD UK. OCD UK is a charity founded by me and a colleague in 2004. We’re completely service user led. So everybody involved in our charity at the moment has been affected by obsessive compulsive disorder, either directly, sufferers like myself, or through a loved one.
But it’s been good because through my work the charity is how I’ve actually made progress with my OCD and I’m now certainly on my recovery journey.
Lucy: Life for Ashley now is really different from how it was at the height of his OCD.
Ashley: I thought I was managing my OCD and it’s only years later when I started working with the charity that I realised, actually I wasn’t managing my OCD. I was able to go to work and hold a full-time job, so that’s why I thought I was managing it, compared to other people. But looking back, it tainted every aspect of my life, so it became a very regimented day. I would get up, go to work, avoid eating or drinking during the day. Obviously as a guy we can urinate without having to touch the toilet, so I could just about do that.
As my workday ended at 6pm, my colleagues who I’d got on brilliantly with, they would all go off to pubs and restaurants and clubs and they would always invite me but I would make excuses because I knew that I’d have to go home and go through my rituals.
So I’d head off home, I’d probably grab a takeaway or something to eat on the way home so that I was ready to use the toilet when I got in. I would use the toilet. By the time I’d finished doing my shower rituals it would be 9:00/10:00 at night, which is more or less time for bed and repeat-repeat-repeat.
Lucy: Ashley is not the only person I spoke to for this podcast. I also spent an afternoon in Oxford speaking to the current president of BABCP board and international expert in cognitive behavioural therapy for OCD.
Paul: I’m Paul Salkovkis, I’m the director of the Oxford Centre for Psychological Health, which includes various bits, but particularly the Oxford Centre for Cognitive Therapy and the Clinical Psychology Training Course.
Lucy: I asked Paul to explain what OCD is.
Paul: OCD is much misunderstood. What it is, is people experiencing really unpleasant intrusive thoughts, things which pop into their head, but also images, impulses or doubts which upset them. And those are the things we call ‘obsessions.’
They’re things which pop in the head which are unacceptable and then compulsions that are actually related in the sense that they’re things that people do to try to prevent bad things from happening. For example, to wash their hands that feel contaminated or say a prayer if they’ve had some sort of very unacceptable thought. Try to wipe thoughts out and so on. And those are compulsions.
Together they both occur actually in everybody. So everybody experiences occasional upsetting thoughts and do things that perhaps are driven by those kinds of thoughts. The disorder bit is when it interferes with their life and stops you doing things that you want to do. So it’s not just the obsessions and compulsions, but it’s the interference with life, taking time, distress to the point of torture sometimes. And at its most extreme. This is a life destroying problem.
Lucy: Could you say a little bit more about what sort of intrusive thoughts people might experience?
Paul: Classically obsessional thoughts are often thought of being about contamination and so on. But actually they hit you wherever you’re most vulnerable. So if you’re a religious person, you tend to have obsessional thoughts, say blasphemous thoughts. Clean people have thoughts about being contaminated. Careful people have thoughts of being careless. People can have thoughts of sexually abusing children, including their own children and so on.
They’re the thing which you’re most afraid of and then the compulsions are pretty much logically related. There is always a rational link, it’s just you need to get it from the perspective of the person who is experiencing those obsessions and compulsions.
Lucy: Right and so the compulsions are kind of to cancel out or neutralise the upsetting thoughts?
Paul: Compulsions in my view divide into two types. There’s those which are meant to prevent bad things from happening, so you wash your hands to make sure that you don’t pass contamination to other people. And there’s others that are meant to undo things. You say a prayer because you had a blasphemous thought and so on. You have an image of your mother dead, so you then try and form an image of her alive.
There’s things which are designed to really check whether or not something has happened and then the other things are called restitution, like putting it right.
So they’re either meant to forestall it or undo it basically.
Lucy: You said it’s only a disorder if it gets in the way of somebody’s life. Sometimes people say they feel a little bit OCD or that kind of thing. What would you have to say about that?
Paul: The idea of being a little bit OCD is kind of quite controversial and you get people claiming they’re a little bit OCD. OCD is of course a life destroying problem and so to say that your, say your preoccupation with putting things in a straight lines is OCD, is probably unhelpful in terms of the way that we think about things.
That being said, the roots of OCD, as far as I’m concerned, sit in normal behaviour. So I’m a little bit OCD in the sense that I experience intrusive thoughts, which map on very closely to things that are experienced by people with OCD. I absolutely don’t have OCD myself though, and I’m not claiming that.
So it’s a bit of a tricky one, it’s a bit more complicated than it just being insulting to say you’re a bit OCD. The way it’s often used though is essentially belittling those people who suffer from the problem. And I think it’s best avoided really.
Lucy: Is it okay to ask what sort of intrusive thoughts you have?
Paul: Sure. Over the years I had to explain to people that I’ve worked with, about the normal intrusive thoughts that I have, which are not at all normal.
So I’ve had thoughts about harm coming to my children, me harming my children, me sexually abusing my children and so on. It sounds horrific stuff. Most people though will have experienced something like this. Perhaps in a fleeting way and they kind of think, oh, there’s a funny thought.
Other examples, when you’re standing in the tube and you think about either jumping in front of the tube or pushing somebody else, off a cliff. Ideas of being contaminated, of course lots of people have lots of intrusive thoughts about being ill. They notice a blemish on their skin and think it might be the first sign of cancer and so on.
I’ve had all of those things and I think, well, I know that the majority of other people have something like that and so on. At one level they’re every day, they don’t terrify me, but for somebody who has OCD, they are hell, they’re just torture and they consume the person’s life and destroy it. So they’re something and nothing, but for the person with OCD, they’re a lot more than nothing.
Lucy: I get the one about pushing people down the stairs actually, quite frequently (laughs), promise not to do it! (Laughter)
Now Paul and I were able to have a bit of a laugh there about that intrusive thought that I get, but these thoughts are no laughing matter when they’re part of OCD. I asked Ashley to tell me about his experience of OCD and the impact that it had on his life.
Ashley: Yeah, of course. So obsessive compulsive disorder, most people call it OCD. And for me I had intrusive thoughts and fears and worries around germs, around using the toilet. Often it wasn’t a case of washing until I saw that I was clean, I would have to feel clean and of course the more you try and feel something, the less certain you become.
And it’s the same with any type of OCD, whether it’s checking or other parts, the more you try and convince yourself that you’re okay, the less certain you become.
My OCD meant that throughout my 20s and 30s effectively I couldn’t use the toilet, I couldn’t even use my own because I couldn’t touch the toilet lid or seat without then having the urge to shower. So it meant I avoided eating and drinking when I was out and about so that I didn’t have to use a toilet, and even my own. And when I did use the toilet it then meant two to three hours of shower rituals, on a bad day, five/six hours. Thankfully that was rare, but on average a minimum of 90 minutes was the norm.
So I’d have to wash my left leg, right leg, left arm, right arm, my body, my torso, my genital area, everything had to be cleaned and of course if during that ritual something didn’t quite feel right, maybe I’d missed a bit, I’d have to start all over again.
Lucy: It’s impossible really to over emphasise how much of an effect OCD can have on somebody’s life. Ashley was really candid about some of the things that he’s experienced and the impact that they’ve had on him and also how he came to realise that OCD is what was going on for him.
Ashley: It was actually an episode of Casualty in my mid-20s when they covered a guy with a germ phobia who couldn’t go out. And I realised that was actually partly what I was doing for a while, that each time I went out, I’d have to shower when I come back. That’s when I realised what I was going through was OCD.
And typically – maybe it’s a typical guy thing, I don’t know – I didn’t actually do anything for another few years because I was too embarrassed to actually bring it up and talk about it. Back then of course there was no internet, so there wasn’t really any resources for me to go online and look up what I should do.
So growing up, I didn’t really socialise, I didn’t have, what most people do in their 20s is go out and have fun. So although I’m conquering my OCD now, possibly as a consequence of my OCD I still find social interaction quite a challenge. I still feel very uncomfortable when I’m in social situations; going into pubs, even just walking into a pub fills me with anxiety.
Because I didn’t have a lot of social interaction in my 20s – this is embarrassing to say, but it’s part of what OCD does to you – I didn’t have girlfriend until I started making recovery, well into my 30s. And as a consequence, I didn’t lose my virginity until I was well into my 30s.
That is the factor of obsessive compulsive disorder, that people might recognise the compulsions, the symptoms, the surface, but what they don’t realise is, and often why OCD is trivialised is because people don’t recognise the fact that the ‘D’ in OCD stands for disorder.
They don’t realise the impact it has on people’s lives, whether it be relationships or education, if it’s a young person, or careers. And sadly sometimes with tragic consequences, as we know only too well through the work with the charity.
Lucy: Paul also spoke about the huge collateral damage that’s done by OCD.
Paul: I’ve worked throughout my career really with people with very severe and very persistent OCD. I would say that about 20% of what I do is helping people with their OCD and the remainder is helping people with the collateral damage.
Because 40 years on, after you’ve been washing or checking or neutralising, or whatever, that’s taken a massive toll on your life and quite deep grooves have been worn and so on. And people have lost a great deal.
And so a lot of what we do later on with these folks is yes, help them with the OCD but then help them undo some of the harm.
The other thing you see with that is some people, immense grief about what they’ve lost. And I sometimes feel that very acutely. Sometimes it’s both myself and the patient crying about it because it wasn’t necessary in the first place.
Now what that says is that firstly, we should continue to help those folk, but we should get in much earlier. The average time between people first having full blown OCD and it interfering with their life, it typically starts age 20; typically people get their first treatment, on average, 32. Which means 12 years of not being helped, the damage that’s being done and so on, and that is appalling. That’s unbelievable.
Lucy: So what is the treatment like for this problem? What does CBT for OCD look like?
Paul: What should happen is that for CBT for OCD, as for anything else, you should walk in the room and the person should explain who they are, how they’d like to be called, what the interview is about. And then they should sit down and listen to your story.
And I think that’s a really important thing because in the end people walk into our room and we kind of expect them to tell us everything about themselves and their really deepest, darkest secrets in some way, or all the things which cause the most pain.
What amazes me is that people do, and I think that’s a real privilege as a therapist to get that. But I don’t think you have it as a right, I think you have to earn it and you have to show essentially that you can be trusted.
What should happen next then is the person; the therapist should work with the person to find out a little bit about how the problem is affecting them and what form it takes. In OCD, what type of intrusions they have, what their compulsions are, how it impacts their life.
And then go into a really quite specific thing and we’re probably a couple of sessions in now. This is not in your first session. What you then do is you then zero in on what actually happens. If you’ve got OCD, what happened yesterday at 3:00 when you were starting to experience this problem? And then piecing together from a combination of what the person remembers about what was happening yesterday when the obsession was bothering them. And then the expertise of the therapist in understanding roughly how obsessions and compulsions work.
And then reaching this thing we call the ‘shared understanding.’ Me saying, “Let’s you and I sit down together, work out how this works. Is it possible it works this way?” And linking into the person’s lifestyle, values, their social situations and so on. Somebody is living in abject poverty or is being bullied or harassed or whatever it is. These are all things that affect it.
The next step is not, “Oh, okay, we’ll just use that to treat you.” It’s, “Lets you and I work together to see how we might be able to change things, to try things out and see if this is true.”
Because in OCD, if the thing is that you might be going to harm people, that’s your worry, and if that were true, then you should protect people and that’s, of course, what people with OCD are often doing. However, if the problem is not that you’re harming people, that you’re just a lovely person or a kind person or a caring person who is afraid of harming people, well, that has different implications.
And you’ve got to then work out which of these two alternatives is true and how best to find out, other than test it out. So don’t trust me, work with me to find out.
Lucy: That’s great. So it’s very much something that is done together, it’s quite a shared experience and it sounds like you’re very collaborative about how you set that up.
Paul: I’d go even further than that. What I think a good CBT therapist does is empower people to choose to change. It is this process of choosing to change. It’s not my choice, it’s the person I’m working withs choice.
And it’s really in that sense, everything we do is self-help with the support of a therapist. And that’s probably why self-help without the support of a therapist sometimes works, because people can learn similar things. And often can then implement that. But that’s extremely difficult and so having the support of a therapist who can go with you on the journey, I think that’s what a good CBT therapist does.
Lucy: And how about Ashley? He’s had a few different experiences of therapy and not all of them have been positive.
Ashley: My experience has varied over the years and I’m not going to name any names, but certain therapists have said to me, “I don’t understand OCD,” which in some respects I respect their honesty, but it didn’t exactly fill me with confidence in their ability to treat me.
Other therapists have said to me they don’t believe in putting their hand in toilet water, which of course I knew that’s what I needed to do to overcome it.
Lucy: In the end Ashley volunteered to be part of an intensive training day for therapists which Paul organised. As part of this day Ashley tried out what it would be like to face his fears of touching the toilet with his hands.
Ashley: I actually became a guinea pig on a CBT therapist training day, and I was happy to do it because I knew that I needed to do it. And I had a lot of anxiety prior to doing it because I knew that I knew that I was going to be doing it a couple of months in advance.
Ironically, because I’d prepared myself well using the CBT techniques I’d learned, the anxiety actually went very quickly, within a matter of minutes.
By doing that exercise… And sometimes people say to me, “Why would you put your hand in toilet water, that’s not normal? Nobody, even people without OCD don’t do that,” and what’s important to understand is if we’re living at one end of the spectrum, which is the OCD spectrum, we have to go to the anti-OCD end, the opposite end of the spectrum to learn to live in that normal middle ground.
Lucy: Ashley described what happened.
Ashley: There were about four/five other therapists and the professor and myself crowded into this disabled toilet to do the exercise and they were all really encouraging.
And so the professor did it first and he said the brilliant thing which really empowered me, he told me that I didn’t actually have to do it if I wasn’t ready to do it and I think that was so powerful in that moment.
And being the competitive person that I am with the professor who I know quite well, I was able to take that challenge and I jumped straight in there. And actually I didn’t do the exercise right because at first I thought he meant touch the actual inside the toilet bowl.
I did that and felt really pleased with myself and suddenly Paul said to me, “Actually no, what I meant was put your hand in the toilet water.” And he did it again, if I remember rightly. So I was a little bit, “Argh, okay, I wasn’t expecting that,” but I did it.
And I was standing there with wet toilet hands and I’m just going to stand up, obviously you can’t see because we’re not on camera, but I was actually standing like this. I was standing with my arms away from my body because subconsciously – I wasn’t even thinking about it – I guess I didn’t want my hands to touch my jacket. I was wearing an expensive jacket that day, so I didn’t want to throw it away.
I didn’t actually even realise I was doing it, but the therapist recognised it instantly. He didn’t ask me a question, he realised what I was doing and he asked permission if he could take my hands and touch my hands. And I said yes, and I realise now what he did. He took my hands and he just rubbed my hands all over his grey curly hair. And again, that was just a powerful thing to do.
And only by speaking afterwards, actually I recognised myself, about two minutes later, I realised why he did that, because I was standing with my hands away from my body. The moment he did that, my anxiety suddenly started to drop and I suddenly started putting my hands on my trousers and on my shirt. It was such a weird feeling because I expected to become really, really anxious.
Lucy: Ashley was really clear that the way that the experiment was set up was really important.
Ashley: Rather than just tell me to do the exercise, they experimented, they gave me the example of how the exercise should be done by doing it first, which was so empowering. I think that’s a great example of good therapy.
Something else that people need to remember is that doing the exercise once is fantastic; give yourself a huge pat on the back. But to make recovery stick, to make recovery last, I believe you need to repeat the exercise regularly. In my case I did it daily for about three weeks until the anxiety was literally not even recognisable.
Lucy: The theory that CBT for OCD is based on is very much to do with the meaning that we make of our intrusive thoughts and then the behaviours that we get into doing in response to that meaning. This is where the polar bears come in to.
Paul: What the theory says is that intrusive thoughts occur to everybody, but it’s not those thoughts that are the problem, so you don’t tackle those thoughts. It’s what they mean. And in particular if they mean something bad could happen and you’re responsible for either preventing it or you might be responsible for making it happen or whatever, that then motivates the compulsive behaviour.
But the problem is the compulsive behaviour then strengthens the feeling that you’re responsible. It also increases the likelihood that you’ll have more intrusive thoughts and round it goes in vicious circles.
Much of what we see in cognitive behavior therapy are vicious circles. And that’s because in cognitive behavior therapy we’re not working with what causes problems because the reality is, we don’t know what causes mental health problems. And it’s really quite astonishing. We know a few things that make it more likely, but we can’t say, “That’s the cause,” or whatever.
So what we work with is why it is that these problems are so severe. Because everybody gets anxious, but for some people it’s more severe, and then why are they so persistent.
Lucy: And trying to minimise those or change the things that are keeping things going.
Paul: Well yes, in OCD one of the things that people experience are ghastly thoughts which are torturing to them and so they try not to think them. But the process of trying not to think them, then actually makes you think it more. The famous, try not to think of polar bears, then you think of polar bears kind of thing.
Most of the things we’re seeing in OCD, and actually all other mental health problems, are people doing really sensible things – if you’ve got an unpleasant thought, try not to think it – which are actually counterproductive.
That’s kind of good news because what it says is that at least some of what’s going on is that people are trapped in a pattern where if people can fully understand that and then try it out, they might well be able to then get rid of the problem.
Lucy: I asked Paul about the evidence base.
Paul: The evidence base is very clear. In psychological therapy terms CBT is the only show in town. And on average about 50% of people with OCD will completely resolve their obsessional problems with appropriate length and intensity cognitive behaviour therapy.
About 70% of people will show very significant improvement which leaves about 30% of people who are not necessarily improving very much, for whom there are new developments like intensive treatments and so on. And so I think there’s some optimism around there.
Lucy: I asked Ashley how things have changed for him.
Ashley: I’ve come a long way since then. I can use a public toilet; I can use my own toilet without having to shower multiple times. I do a lot of cycling and occasionally you have to use toilets, the backs of trees, where there’s no sink to wash my hands and it doesn’t bother me and I can do that.
Yeah, I think good therapy can make the world of difference and it’s certainly helped me make the progress that I’ve made.
I certainly am not completely recovered. I’ve got a little bit of work to do still but certainly there’s certain areas of my OCD that I believe in the ‘C’ word, which is frowned up, ‘cured’. I feel confident in saying I’ve cured certain aspects of my OCD. There’s one area that I’ve not yet tackled and I’ve just actually referred myself back into therapy to tackle that last part of my OCD.
Lucy: Fantastic. It sounds like you’re in such a different situation now to how you describe things being before.
Ashley: Yeah, I mean it’s just little things, we shook hands before when we met and all I’d be thinking at one time is, what has that person touched? Have they just been to the toilet? Did they wash their hands? Did they just pat that dog? Did they just pick something up off the floor? So an innocent gesture of shaking hands, there’d be a million thoughts going through my head.
I believe that recovery isn’t necessarily the absence of intrusive thoughts or anxiety. I think recovery is the ability to continue with your day, with your activities regardless of intrusive thoughts or anxiety.
Lucy: I asked both Paul and Ashley what they would want to say to anyone experiencing OCD and considering having CBT.
Paul: The advice is absolutely clear. If you think you’ve got OCD then go and see your GP. If you’re lucky enough to be in one of the areas where the improving access to psychological therapies services allows self-referral, you can self-refer.
The other thing is, to start to talk to the people, to your loved ones, the people around you, because this thing about OCD being a secret and all this is important. And people often feel that families won’t understand.
My experience is when it’s opened up, that people actually do recognise and are more likely to help and support you. And it can be helpful in CBT, for example, to involve family members. OCD is a horrible stealer of lives; it really does destroy people’s lives. And I think it’s a real mistake to suffer in silence, to not seek help because it can and is helped a great deal by appropriate treatment.
But also that that’s very hard work. I’m not suggesting that it’s a magic wand that’s waved. It’s well worthwhile, but in a sense one of the things I say to people when we’re starting treatment is this shouldn’t be a hobby, this should be a job. If we’re working intensively, say let’s just do two weeks of beating the OCD and nothing else and that’s what you do. That’s going to be really, really hard work but not getting better is harder work. So difficult, but do it.
Ashley: It is scary, but if you’re ready for it, if you’re prepared for it, it’s not as scary as you expect. But also I sometimes use the analogy; it’s a bit like learning to drive as well. Sometimes people pass the test the first time, but other people need two or even three courses, or more of lessons to pass the test. It’s the same with therapy sometimes. You might need more courses, perhaps with a different instructor, different therapist who might be teaching the same principles but in a very different way of working.
Equally as well, there’s the saying, you only learn to drive after you past your test and I think it’s the same with CBT. As patients sometimes we only really learn the CBT after the end of our therapy when we learn to put it into practice on an everyday basis.
Lucy: And are there other things, apart from CBT, that you found helpful in your recovery process?
Ashley: Yeah, I think understanding the condition is so important. OCD is one of those things where knowledge is power and probably the only other thing to add, or I do want to say is that recovery is possible. We can get better from OCD.
Lucy: That’s all for this episode. There’s loads of information in the show notes. There’s books, there’s web links, including links to the BABCP resources on personal stories of people who have had CBT for OCD and also other podcast episodes.
So if you enjoyed this podcast episode, you might want to listen to the very first episode we ever made, which includes two people talking about their experiences of CBT for OCD. Or you might want to listen to episodes on different sorts of problems that CBT can help with, for example, hoarding disorder.
We’ve also got new episodes coming up about how CBT can help with chronic fatigue syndrome and with post-traumatic stress disorder.
This podcast is brought to you by the British Association for Behavioural and Cognitive Psychotherapies, or BABCP. For more information about how to find an accredited therapist, check out babcp.com.
END OF AUDIO