Thea Joshi is joined by Centre for Mental Health’s current Writer in Residence, Andrew K Kauffmann. Together they discuss OCD and its battles, from diagnosis and labels, to therapy and everyday life.
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Alethea Joshi (AJ): So I’m delighted to be here with Andrew today. Thank you so much for joining us on the podcast. Welcome.
Andrew Kaye Kauffman (AK): Thanks Thea, yeah, really good to be here. Thank you.
AJ: Oh, I’ve been wanting to have this conversation for ages. Obviously, you’re our current Writer in Residence, and you’ve been doing really interesting pieces on a whole host of topics. One just coming out now about male mental health, and you’ve covered so much interesting stuff. But uh, you know, a recent piece that you did was on your own experience of OCD, and the impact of living with OCD. And that’s a lived experience I also have, so I was like, Oh, we have to talk about this. I’d love to do an episode on this. So thank you for joining us today.
AK: Yeah, I really appreciate that. It’s one of those topics where one talks about one’s own mental health, one’s own mental health condition, if one has one, that can feel a little bit daunting, because you think, okay, I’m more comfortable, maybe talking about mental health in general, as if it’s some sort of issue that affects other people can comment on. But oh no, It does affect me and it affects many of us, and it’s in that spirit, I’m here to talk about it. I think a big inspiration for me in being a Writer-in-Residence has been how to try and confront taboos to try and de-stigmatize some of the issues around mental health.
AJ: Yeah thank you so much and I think, for us at The Centre as well, it’s that piece of always having lived experience at the heart of what we’re doing, driving what we’re doing, and the experiences of people with mental health difficulties, driving forward the conversation about what next, what’s still needed, what’s missing. And yeah, having that conversation in tandem. And I know from having my own experience, it’s about not being done to but being, you know, things being co-produced solutions being co-produced. And that’s really important to us, as well. So it’s lovely, just to kind of talk a little bit more about, you know, how it literally feels to live with something like this as part of our work. So I wanted to kick us off, I still feel that OCD is, really quite misunderstood a lot of the time. And there’s a lot of kind of weird stereotypes and misconceptions. And so I wanted to ask, you know, how do you explain it, if people say, Oh, what’s that about then?
AK: I have to think in two ways about this question, because there’s my own quiet sort of individual take, because I think everyone that has OCD will have their own kind of history, their own story, their own kind of very specific experiences in describing OCD, and then that leaves us with room to also reflect on okay, what is OCD? Generally, you know, how do we hear about it in terms of how it affects other people? And maybe I’ll begin with the latter. What do I know of OCD? I guess it’s one possible way of looking at it, I’ll be keen to get your view. And we’re having that conversation, aren’t we paper slipping with OCD, but I understand that it can take different forms. And I think that’s really important to share with anyone who’s looking for information on OCD, it’s not just one thing. So a popular kind of misconception of OCD is that people will, perhaps have particular repetitive, obsessive or intrusive thoughts or images which can be very anxiety-inducing, very unwelcome, and sometimes quite sudden. They’re not necessarily images or thoughts in any way that you can just say, oh, I don’t want that I’m gonna move on.
The very threat, if you like these obsessive images, or intrusive thoughts, or impulses is that they recur very incessantly at times, and no matter what you may seek to do in seeking to kind of lessen or eliminate them, the more attention you try and give them in saying, oh, no, I don’t want to think this can make them even more present and more and more stressful, but for a number of people a city what can also occur is, and I’m no clinician, it’s just my sort of anecdotal understanding of how it can affect other people that they can also have, yes, the obsessive thoughts and images and impulses, but also compulsive behaviour, which by some people, it’s described as kind of ritualized behaviours that are commonly understood to be ways of attempting to reduce or in some way kind of lessen the obsessive thoughts or image. So for example, if one has obsessive thoughts or images about something, and this is the stereotype, right, that we often hear about OCD. If someone has an obsessive thought or image related to hygiene.
Then commonly, it’s assumed, okay, well, someone might then seek to address that in that instant, by compulsively cleaning or doing something that seems to make them feel more secure, and comfortable with that hygiene in some way. And you create this kind of this circular set of kind of cause and effect sort of responses whereby you have the image that causes distress oh gosh, something’s wrong. I can’t stop what I’m thinking is wrong. And then you have the compulsion. the behaviour or the ritualized behaviour, which doesn’t, unfortunately, eliminate the worry or the obsessive thought, if anything, it just gives even greater attention, unfortunately, over the long run to that thought, or image. So typically, and this is what some people with OCD have, and it’s not just a stereotype, it might be, that someone feels that yes, indeed, the surfaces in that kitchen, for example, are extremely unclean. And they need to repeatedly clean those surfaces, but not in a way that might be useful for day-to-day cleaning purposes, but in a way that is so preoccupying that it can almost become disabling, but they’re not able to give attention to other things, where it just, if it anything, intensifies their worry or sense of guilt or other feelings, that there’s a lack of hygiene and a lack of discomfort in relation to their kitchen surfaces. Now, that’s very oversimplified and generalized, but I’m very happy to expand a little bit into saying a little bit about my own experience.
AJ: Yeah, definitely.
AK: Some people However, and this has triggered me have a quite particular form of OCD that may be understood even less well, which is that they may have a series of obsessive thoughts and images in their mind that again, appear almost as if from nowhere, unwelcome, they’re not thoughts that we wish to have. But they’re not linked in any obvious way, to a compulsive act, to try and do something as it were to wash our hands to take action in order to try and address an obsessive thought or image, the form of OCD I have is very much about the images and thoughts themselves recurring, and not having necessarily anything attached to that in terms of compulsive or ritualized behaviour. And that has been in some places I’ve seen described or referred to as pure OCD. But I know that can be problematic for some because it has certain connotations around what’s considered one form of OCD. And is one form more in need of response than another? I think all forms based at the point overbank are equally very at risk of making the individuals affected, very stressed, very anxious feel, sometimes a sense of being trapped, a loss of autonomy and independence around feeling like I can’t change this situation. And I’ve got so much to say on the subject, particularly including how it first manifested or appeared as a condition for me and, and the first symptoms. But I would just conclude on this point that it possibly affects more people than is understood.
And what it’s not, is just the routine worries that may occasionally pop up for any of us in day-to-day life. So we may all indeed have a worry occasionally that our house isn’t clean enough. We live busy lives, of course, so we will probably don’t feel we’re cleaning our house. But for a number of people who may not have OCD, they can think that thought oh, gosh, you know, I need to keep my kitchen cleaner. And I’ll do something about it. But then they’ll take the action. And then they’re not giving the moments of thought to the germs maybe the bacteria that possibly growing on their kitchen surface for someone with OCD, distinctively, the vividness, the kind of physical bodily reaction that can have to this fear or this anxiety that there’s in that case, a lack of hygiene, and that’s branding is so all-consuming, that just getting out some cleaning products is not the issue it is much deeper and more sustained than that, which is they cannot stop feeling that there’s a problem around cleanliness.
AJ: Yeah. And I was just going to add in there. I think it’s really interesting because a lot of the kind of unhelpful stereotypes around OCD and cleaning. Again, I’m not a clinician, you know, full disclaimer, we’re just people speaking about our own experiences. But my understanding is that it’s often not just things that aren’t clean, it’s if things aren’t clean, x, x will happen. And we’re talking about very, very severe consequences. If something isn’t clean, what if I get ill? What if I pass on to people I love, what if they die, you know, that we’re talking about very extreme nightmarish fears here. And so if you need to clean a bit harder, then you kind of think Well, that’s a price worth paying to make sure my family is safe to make sure we don’t get sick. Make sure we don’t you know, so the stakes are really high, right?
AK: Absolutely. I think one word that’s often used these days. It wasn’t a few years back, but I hear it more and more as catastrophizing. And what does that mean? I’m not sure I’ve got a dictionary definition. Um, sometimes even bless him that referred to by my partner so I think catastrophize is a bit it’s done in humour and it’s not in any way meant to shame me, but I can think of one thing, and then it leads to 10 other possible consequences in a way that to others can seem really exaggerated. And almost like we’re resorting to sort of kind of hyperbole in a way and saying, well, x may happen or y may happen, but for me, absolutely, what you’ve just described is so fitting because certainly when I was a child, for example, I used to often think I would need to carry out certain behaviours, I guess, in order to keep my family safe. And I had no idea at the time where this stemmed from I had no idea at the time that it was unusual even, I would have to walk on alternate paving stains in between weeks before taking a flight for summer holiday, truly convinced that if I didn’t that our plane could crash. I didn’t voice that to anyone. I didn’t read about that as a thing I need to do from anywhere.
There was no trigger as such that said, oh Andrew, for you to make your family feel safe this is what you need to do. It just emerged and I would need to pray a certain way. I would need to have certain rituals before bedtime, tapping the toilet flush three times. It’s so seemingly different perhaps to how people perceive OCD. I think that’s the thing. There’s a complexity to OCD that really needs setting out because I think there are certain as you said perceptions that built up. I remember David Beckham famously once said he had OCD. Again, I’m not a clinician, and it’s not for me to say that David Beckham does or doesn’t have OCD that would be totally wrong. But I think the reaction to that was quite interesting when he said he had OCD because a number of people, oh, gosh, everyone has OCD these days. You know, what’s the problem? Of course he does, you know, who doesn’t sort of have OCD was the almost the kind of cultural commentary around David Beckham saying that the time and I think it can, as I said, actually, in the essay for the writer in residence, it can cheapen and trivialize and lessen people’s sense of what the gravity is of what’s going on for themselves. When they have OCD in extreme form they do when it is an actual mental health condition. As opposed to Hey, I just like to keep my house a bit clean.
AJ: Yeah, totally. And I think the reason it just really gets my back up when kind of people trivialize it, it’s not, you know, I want people to know that it’s not because like people with OCD, just like don’t have a sense of humour are like very holy and very, like, you know, grumpy? Well, it’s not that it’s that a, you know, OCD literally makes people housebound, it drives people to consider taking their own lives like, this is not something to be trivialized. But also because we know that when it’s trivialized and misunderstood, and that’s perpetuated, people don’t actually know what OCD is. And therefore, as you said, in your piece, wait years, years and years, like a decade, at least for treatment, because they don’t realize that what’s going on is OCD and I’ve heard so many people over the years say I just didn’t know what was going on. Like you say, I didn’t know that this was, you know, a symptomatic of something that was, you know, classed as a disorder. I just thought I was doing something to kind of keep my family safe. And people don’t realize, and that’s why kind of talking about it still feels super important. Because there’s so much misinformation.
AK: I couldn’t agree more. I mean, for me, if it’s okay, I might say a little bit about when it first emerged, and in what circumstances because I think that may be reasonably illustrative of not only what OCD is, not just for me, but for other people, perhaps, but also the circumstances in which you can imagine some of the silence and shame that surrounds that. I was 19, say, more than 20 years ago now. And I had just lost my mom, unfortunately, through a terminal illness, I had just started university, and I’ve just come out as gay. So there are a number of quite big things going on in my life, Quite big changes and it’s sometimes said that significant adverse events and one life can be an influence on at least the timing, OCD begins, it might not be the only reason why OCD my appearance was like, but it can have a set of effects in sort of bringing on OCD maybe sooner or kind of making it more prevalent. But I didn’t know what OCD was, I’m not even sure necessarily been heard of the term at the time, if I had it didn’t mean anything to me. So genuinely from one day to the next. And this was in the very odd month anyway, of September 2001, when the Twin Towers were attacked. I started experiencing what I could only describe as frightening and obscene images that related to my own family. And I was on holiday with them of all things and I didn’t want to, of course talk to them, because I didn’t know what it was I was even experiencing I didn’t have a language to put to it. I just wanted to hide in my room, essentially, I don’t want to see them that I sort of carried out the basic things everyone’s meant to do when you’re on holiday with your family where you’re meant to, quote-unquote, be enjoying yourself, would join them at breakfast and so on. But I was having these repeat, waking thoughts that just would not go. And the more I would say, I must stop thinking these things. It’s a little bit like saying to someone, you must stop thinking of a black cat. You know, what you end up thinking about the Black Cat or
AJ: There are just black cats everywhere now!
AK: Yeah exactly. So, I couldn’t comprehend what was going on. And I certainly wasn’t in a space where I was saying I need to speak to a psychologist or I need to call a best friend, or I need to read a book about this. Like that was quite a number of months, if not years away. And I was totally and utterly frozen is the best way I could describe that I wanted to shake these things off as if it was a rash that had formed on my body, I wanted to get rid. And the more I had that reaction, that instinctive reaction, I want this to stop, the more obscene images, recurred and recurred and recurred. And I felt trapped. That’s the best way I can describe it. And in lacking any real knowledge or awareness of anyone else that had the condition. And certainly anyone famous, anyone that was a role model could handle living with a condition, in lacking any sense that this was something that you could talk to a friend about. So that you could kind of lessen if you’d like a little bit of shame, you felt in response to the onset of the condition. It was for me, and I know for lots and lots of other people that start to experience, the symptoms are supposed to be extremely isolating, because you kind of want to sleep a lot. You kind of that’s where you get the salvation from.
AJ: Oh, no. 100%. You get to a stage where it’s like, only when you’re sleeping, are you at rest, right? Because otherwise, your brain is just constantly pushing out horrible thoughts just to freak you out.
AK: Totally. And then you might get to the stage where you think, okay, maybe I need to talk to someone that you can’t really feel very confident about what that involves, because you’re not even quite sure what you’re going to be sharing, you certainly don’t want to share the thoughts or the images. And, whilst, I’m not prepared to talk about what those images were at the time, because they still, to me remain unwanted and obscene. I should also add the caveat, where people sometimes kind of get a bit confused, if they don’t have OCD, and they’re hearing about the condition, I think it’s really important to underline for a long time, you can have these images, and they think they truly are a reflection on what you think about yourself or other people
AJ: This must mean something about me right? 100% Yeah. And, and the complete fear and dread that comes with that, because it’s, it’s like, it’s not just having an intrusive thought, in OCD. It’s not just about the thought happening here. And you can look at it kind of in a mindful way and go like, Oh, that’s what I’m having. It’s like, this is me, right? Like this is and so this, what I’m thinking is a reflection on me. This is who I am. I’m awful. You know, as you say, extrapolate that out, times a million, and it’s terrifying. Yeah.
AK: Exactly and I think that can compound the sense of doubt and shame. So for example, as a gay man, I don’t want to in any way, kind of say that I was told to feel this. But I grew up in a culture in an era in the 80s, with section 28, which prohibited schools and other public authorities time from talking about homosexuality, I grew up in an environment. And you know, the UK is by no means the worst place to grow up gay, compared to other places in the world, but I grew up in an environment where it felt somewhat shaming to be coming out as gay. And there were also some sensationalist or really pernicious sort of stories at the time, that also to be gay was to be a paedophile. And I can’t say that narrative has altogether gone away. And the thing for me, sometimes was, oh, my gosh, I’m gay. I’m pretty ashamed of that. I hadn’t yet come out, but does that also mean I’m a paedophile? And also, does it mean, I’m gonna get HIV-AIDS? And also, does it mean X? And also does it mean y and it never stops? And so the problem is, it’s not just the original thought or image you have. Oh might be x. It’s your conviction. My goodness, this must be true. It’s like your identity is suddenly totally under question but under question by yourself.
AJ: Yes. Yeah.
AK: No one else is out there saying that Andrew or whoever, like, you are this person, you’re doing it to yourself. You’re turning a mirror on yourself and you say I am all for cause I have this thought. And this thought is so prevalent and is recurring so much that it must be true.
I won’t say too much because it’s unfair to the individual. But when I started at University, which is, of course, another time where there’s a lot of change in people’s lives and mental health can deteriorate, if people don’t feel supported, and I met someone, funnily enough, this was the year before I got OCD so who knows what the links were there, but who I got talking to, and unfortunately, they had been a victim in a very violent incident, where soon after they started feeling that in that attack, where they had been attacked by a knife, they were contaminated. And their set of thoughts or images was that they had HIV-AIDS, and no matter what he did to try and keep them saying, okay, well, that possibly isn’t true. The far stronger counterthreat in his mind was no, it must be true, I must have this you know, and you’d seek out proof. And this was true of me too. That’s the other thing, these alter your behaviours, potentially, they can alter your satisfaction and well-being in life generally, because you kind of keep on seeking out evidence that something either is true to that or not.
So I think a few comments that you made earlier, remain pertinent here, which is this isn’t just incidental, this is integral to how you experience your day-to-day well-being in life because it has consequences that are just so dramatic in terms of how you feel about yourself, your self-identity, your self-image, and the steps you might then take to just try and extract some sense of being okay, from it all. So, this is classic really and I should have seen it coming. As someone who has always been a bit ashamed of, yes, my sexual orientation, I’ve worked on that. And I’m proud that I’m an openly gay man but there are moments where I’ve got some legacy of internalised homophobia from growing up, as I say, in the 80s, and feeling to be gay, it’s shameful somehow, when a new scare story occurs around like one’s health, and oh, to be a gay man is to have a certain health condition or set of symptoms. That can really get me and it can really trigger my OCD and take it into a new phase. So for example, where are we 2023 now and 2022 gives a new academic that a lot of people have heard about at the time at the beginning was professors monkey pots. And then the WHA rightly changed the name to NParks, because monkeypox itself was seen as stigmatising as a name.
And all I was all over that neat story. And I was in a relationship, I am in a relationship. This was primarily affecting men who have sex with men. And I didn’t know how to react other than to keep on seeking out help, information and stories about it. And rather than just go, Okay, this probably isn’t actually directly relevant to me, because I’m in a relationship. And so, you know, let’s think about that there aren’t probably going to be consequences for me from I kind of just kept on thinking I’m destined to get this, I’m destined to get this and say, I would see like little pustules or blackheads or little moles, which might just occur, like on any of us in any week that are so tiny that like, they’re not visible to anyone other than if you take a magnifying glass to them, that I am not making light of that a little bit jollity in my voice that genuinely at the time, I would shut myself in the bathroom away from my partner, and like, really, with my zoom function on my smartphone, like try and take clear images to see if these little new spots that might occur from time to time on the surface of the skin were evidence of the pox virus. And they weren’t. But I couldn’t ever satisfy myself that every night or every weekend, do that. And I had to like, repeatedly check like the NHS test website repeats a few checks by the websites from the US. And then you can get into a bit of a vortex of forever check-in health information, which doesn’t alleviate your concerns, but just if anything can make them even more intense. Oh, there’s this number of transmissions this week in London. Okay. Yes, that’s right. It’s even greater to me. There’s this number of transmissions this week. And so you kind of go in this repeated circle of seeing the threat, that not seeing yourself being able to be removed from that threat.
AJ: Yeah, totally. And I think what you’ve exemplified there is, you know, that’s one example of OCD and how it can manifest right, but actually, that’s the same cycle that you see with anything else is a threat, you know it kind of that trigger threat, something is wrong, I need to protect myself I need to do something to deal with this level of anxiety and panic and distress. Okay, what actually is a rational thing to do? Well, you know, for someone who was worried that they might have monkeypox, checking their skin a little bit, you can kind of think, oh, yeah, well, that makes sense. That’s how, you know, we’re told to check our skin, we’re told to check for certain health things that make sense. But then it goes to the extreme as you’re talking about just like, obsessively checking and checking and checking and checking, not realizing that that compulsion, that checking is literally feeding, the fear, it’s feeding the problem. It’s feeding the thoughts and the sense of threat and the sense of this is a real threat that I must need to take really seriously.
And I think something you mentioned, you talked earlier about you explaining compulsions, I think something that I wanted to just explain to people is, maybe this is obvious, but the fact that the compulsions do actually normally give a little bit of relief to begin with. And I’m Yeah, I don’t know if that’s always always the experience. But there’s a sense that I have to do this thing. But also because I do tend to get a bit of relief afterwards, you know? And the fact is that that sense of relief, that sense of clarity that you get for a moment, even it might only be a second, but it then fuels that pattern, because then you think, Oh, this is what I have to do to feel sure again. And actually, as you said, all it does is fuel more doubt and uncertainties that you have to keep checking. So it’s a really horrible vicious cycle.
AK: And we’re having this conversation, struggling three years, four years into the pandemic. And I think, again, I’m no clinician that there has been perhaps, in researching the piece I’ve done on OCD, some suggestion, OCD, I didn’t come up with other mental health diagnoses that possibly has the incidence, those diagnoses possibly have gone up. And we need to, you know, see longitudinally over time whether that is born out by data. But nevertheless, I think, anecdotally, living in a situation like a pandemic, global pandemic can, again, be a trigger for people, because we’re all told, rightly, to be more vigilant, to wash our hands to do all sorts of things that are just, of course, in our general interest in the midst of a new health threat, an objective health threat like COVID Coronavirus, and yet, for someone with OCD, the difficulty is that you will have to maintain the tasks which become a national health service and others say the right things to do. It’s kind of just then almost keeping a wall or a barrier between knowing that there are certain things you can do. And they’re probably kind of good precautionary things to do like sort of wash your hands regularly. How to keep a barrier between those things, and then not letting it kind of become so all-consuming, that really becomes disabling. And I don’t have enough evidence of what’s happened to people during the pandemic, but it feels to me at times like we need to be a little bit careful about how we talk about new health threats. Generally, that’s not the NHS shouldn’t have talked about the health threat of Coronavirus because they needed to on a population level. But there are added things that I think health services maybe need to think through about how to communicate some of these things, recognizing the way they’re communicated is just as important as the decision to communicate any threat. Because if you communicate them in a certain way, factually, proportionately, that might be okay. But if you kind of, or if needed, commentators or others kind of seem to go the extra mile, or you need to do this, you need to do that, you know, that can further amplify and frighten people, including those with OCD.
AJ: Yeah, definitely. And as you were talking about this fear of AIDS, like, I know that it’s actually quite a common theme with OCD is this fear of, of Yeah, contracting AIDS, And I think, and I’m, it’s not just because of this, but people have noted that you know, I think I think it was in the 80s, there were all of these kind of public health videos and warnings that were really, really dark and stark, and you just kind of think, okay, that that sort of makes sense, you know, that people then started to worry about it so much, because they were being told like this is a threat to you. And again, as you say that, you know, it’s really important that we have messaging about any health risks. But again, just being mindful of the way that can affect people in different ways and other health issues.
AK: It’s such a huge legacy, those famous ads in the 80s Don’t die of ignorance. And again, I’m not questioning the intention to run a public health campaign at the time to encourage all sorts of satin kind of responses to the HIV AIDS epidemic at the time in the 80s/’90s. But those adverts that some may not recall, but you can imagine them as I described they sort of broadcast quite frequently on television or bus stops and elsewhere, of tombstones falling and carved into those tombstones where things were sort of this statement of ignorance with this sort of very haunting voice by the actor John Hurt. And actually, those adverts are genuinely are imprinted on the consciousness of a whole generation or two of LGBT plus and other communities who almost yes, absorb the message, but absorbed at times too much in terms of cost to their mental health.
AJ: I wanted to say, obviously, we’ve been talking about lots of different types of OCD, but kind of I think, in the, in the spirit of understanding and wanting people to kind of wanting people to grasp the breadth of it. I just want to mention very quickly, a couple of examples of the kinds of things that people can worry about, or have, have intrusive thoughts and have OCD around. So we’ve sort of talked about various different kinds of themes, but there’s lots of stuff around, you know, health, health OCD like we’ve been talking about the threat of AIDS and pox, you know, just generally getting sick, other people getting sick. We’ve talked about kind of contamination, whether that’s cleanliness of your hands, or yeah, as you talked about that example of you know, there’s lots of different kinds of contamination OCD, which I’m sort of getting my head around. Yeah, lots of moral stuff. So moral philosophy, am I a good person? Am I a bad person? I’ve had fears about you know, stealing or cheating in some way something that you know, would confirm I am a bad person I don’t deserve to be happy etc.
You know, that can as you say, you can lead to compulsions around praying for so many and yeah, fears around even they can be like religious OCD, so fears around kind of blasphemy or saying something shocking, or, you know, to do with spiritual identity. And yeah, fears around like, what if I’m a paedophile? What if I do this awful thing? You know, what if I push someone in front of a train, that’s something that you talked about in your piece. You know, these kind of, I kind of want to say they’re bizarre in that, like, I know that they’re horrendous because I’ve experienced them. But like, I noted, to the outside listener who doesn’t have experience of OCD, basically, they can sound like, hey, well, just don’t worry about that. It’s like, yeah, maybe it was that easy, right? But yeah, it’s just as you can hear from the kind of descriptions I’ve given, they are very, very distressing. And so I think that’s a really key thing to remember when you’re trying to understand or empathize with someone dealing with OCD is that, you know, it’s been caused by and driven by a huge amount of distress and needs to be seen like that.
Yeah, I think that’s the thing. That refrain, why don’t you just get over it? I remember I went to GP in the mid-2000s. And I can only hope this was a random example and not representative of what happened to general practice elsewhere. But, you know, I think it’s a new GP, I’ve maybe just moved to a new area. I wanted that to be some continuity in terms of the prescription I had at the time around for 20 years. Now. In terms of antidepressants. What I take is fluoxetine hydrochloride, I always prefer calling it fluoxetine hydrochloride, because the commercial name has a certain reputation, the commercial name is Prozac, which a lot of people do know, a lot of people don’t know the name, fluoxetine hydrochloride, it makes me feel better to say that that’s what I take. Anyway, at the time, I wanted that to be like continuity care. So I saw this new GP and I was saying like, you know, it’s really important to me that I take these would you be able to prescribe it again? And maybe like, my historic GP notes are available to this person, but instead of like, kind of trying to engage with what I’m saying, All I was faced with was, so what are you so obsessed about? Genuinely in that tone? As if I was being lectured by a parent or an angry school teacher or something? And I just thought, oh, okay, well, that’s just great, isn’t it? I mean, not only do they not seem to have any awareness of the condition, but they just don’t remotely seem to even be empathetic. That’s rare and all too uncommon, but I don’t know. And I definitely have heard other people say there could be ignorance. It’s not that people are always kind of faced with attitudes that are genuinely, like, malicious, but there can be a lack of understanding of OCD and that can sometimes still show up in in health services.
AJ: Yeah, and I think as well, you know, I’ve heard of people initially being diagnosed with anxiety because, you know, maybe the practitioner hasn’t heard about different forms of OCD, which I guess is partly why I mentioned it because OCD can show up in really any type of thoughts, but I think sometimes if it doesn’t present in these kinds of ways that we’ve maybe seen talked about more sometimes unhelpful stereotypes, then sometimes people don’t know what to do. And as you say, as well, there’s a lot of shame or I’m talking about it. It’s deeply shameful and hard sometimes to kind of express what’s going on in our minds, which again, can form another barrier to getting help.
AK: I remember feeling like I was wasting doctors’ time, like they felt oh, gosh, I only got seven minutes with his patient. Seven minutes isn’t going to be enough for them And I’d rather see Mrs. Jones, who’s coming afterwards, because I know she’s got Parkinson’s and that’s something I can talk about. I mean, I’m slightly kind of over-dramatizing this, but not really, I genuinely feel like every time I’d see a GP, I was wasting their time, not because I didn’t feel like my condition was serious, but because I didn’t feel they were going to take it seriously or as seriously as I wanted them to. And then I was really relieved when I was had, okay, well, we know that for long enough, you’ve been helped by taking antidepressants so we will re-prescribe them, trusting that you know how to manage your treatment for yourself. And we maybe only need to do like twice-yearly kind of medicine reviews, so that was an important shift for me that there was that kind of trust. But I have to say, some of my best experiences in seeking care, at the same time, were quite close to some of my worst. And what I mean by that is, and I feel really bad even mentioning it because the individual genuinely so helped me that I saw, eventually, that year or two after first developing the symptoms. Basically, I saw a psychotherapist who genuinely set out to deal with so many levels.
But I think over time, maybe I started telling a bit later on, and maybe we’ve kind of run out of rage maybe are kind of the things we were ever going to deal with satisfactorily in that kind of space. Whether they were my psychotherapist and I was patient, maybe we’re like, got to the end of the relationship a bit. But anyway, there was one point where I was experiencing ruminations around am I a paedophile. Ruminations, by the way, is the word that I came to use but it could be like obsessive images or thoughts. And I did share some of this. And I thought I was sharing that in good faith. And I did actually receive a letter a week or two after at my home address just warning me that they were professionally duty-bound just to say to me, having shared what I had with them that if I ever did act on my thoughts that they would need to, or if I ever said to them that i would act to my thoughts, they’re going to tell the police or any other relevant authorities. And for me, that was just really challenging, because not only have we built up a bond of trust over many years, but I thought precisely what would most have come across as my message to them over all those years, which is that’s the point. I’m not going to act on these thoughts. And I thought above all other people you knew that. And I felt sorry for them in a way because I think they were just under some professional obligation to send me that letter.
AJ: Yeah, and I don’t know either. And obviously safeguarding is of the highest importance. But for me, it’s apart from being incredibly damaging to receive something like that, when you’re explaining that these are ego-dystonic thoughts, which are, you know, explain. I’m not just trying to band around jargon. But you know, super, super difficult and presumably triggering to receive something like that, when that’s literally what you are worrying about. But for me, it’s a fundamental misunderstanding of what OCD is, right? That this is about fears of things that we think are awful. And that’s what I mean by this phrase, ego-dystonic, which I’m probably absolutely butchering, so sorry, for any psychologists, my understanding as a layman is you know, that it’s about, it’s the opposite of what we think is good and right and want to do, it’s completely not in keeping that it’s actually in conflict with our own value system and our beliefs and our view of the world. Right.
And that’s what people say about OCD is that you only worry about things that you think are awful. I’ve never had an obsessive thought or fear about something lovely happening to me. You know, I’ve never, because why would you write because there’s no threat there. That’s just a nice thing. The point is that we are being tortured, I’d even say or torturing ourselves sometimes with these very scary distressing thoughts, right, which go completely against what we want or feel or believe and that’s why they’re so distressing. So to receive a letter like that, when you’ve been saying this is really distressing me because it goes completely against everything I believe in and think it’s right. It’s kind of to me, I’m like that’s just totally missing the point, isn’t it and it’s a fundamental misunderstanding.
AK: And it brought that relationship to an end pretty much within weeks and I don’t blame the person I didn’t even want to displace their gender because it’s unfair because of all the psychotherapists I saw over the years they were the most helpful to me in coming to terms with mother’s death becoming confident in being a gay person that I think yet there’s a set of kind of constraints I think you have to deal with when you have OCD, which is this ultimate worry, which is, if I talk about this to the wrong person, this could lead to other consequences where they think, Oh, I now need to take some legal action, or I might need to actually warn this person not to do the thing that I’m worried about. And of course, that can silence you even more, and kind of shame you even more. Some of the things that have helped and they’re not going to help everyone, for me, it has been taking antidepressants. And there’s a whole debate about that. And I’m not an advocate one way or the other on one side of the debate or the other. I know there’s commentary, which says depressants are just a placebo to some people with OCD. And you know, my take on that as if that’s all it’s been for me then it’s worked.
AJ: I’ll take a placebo any day, as long as it does the job right?
AK: I’m not a conspiracy theorist, I read Johan Harrodsburg, on Big Pharma. And I think I can’t even remember the name of the book within the chest and I respect all those thinkers. Yeah. Exactly. But there’s a big section in there on why depressants are not pharmacologically what they’re described to be, that there’s no real scientific basis for the claims made around helping people with certain mental health conditions. I don’t know. All I can say is they have helped me and if that’s that they’ve lessened my anxiety in relation to the OCD and therefore my obsessive-compulsive Disorder has itself felt like it’s less intense than so be it, I don’t want to really interrogate that much. One person once described to me in a very effective way as a metaphor, think of your OCD as like having the remote controls for a television a very noisy sweary television program say and if you take depressant perhaps, or if you take other actions, whatever they are, they might be your means by which you just lower the volume on that squarey television program television set. So whatever can be your remote control, it was a combination of taking antidepressants and psychotherapy, in tandem, whatever can reduce the volume of that thing from 10.
I can’t stop hearing this image or thought, I can’t do anything else. It’s like being in that room with this sweary TV and you know, you’re just blindsided by it. How can you decrease the volume from 10 to a three or two or even to the mute button, so it’s in the background. And that’s always how I’ve tried to approach my OCD now, which says, I’m not going to cure this, it’s not going to go away and maybe emerge at moments in my life, particularly when there’s significant amounts of change of stress, or more self-aware about what the conditions within which it can be worse, but also more self-aware about how I might then manage that or talk to loved ones about the fact that it was popping up in the in a big way again. So I think the remote control metaphor is a really important one to me, because it’s like, what can I do not to control my OCD in terms of like, choosing to have it on or eliminating it, but to have a completely different paradigm, which is, how do I find steps that are appropriate and personal to me to manage it on my terms? And to know that I might be having an obsessive interest in thoughts? It’s kind of say, Oh, yes, that’s right. And be present with that up to a point, then not trying to eliminate these things, not try and say, okay, and therefore these things need to stop knowing as I do from your path, that that’s the surest path for me to making these things even worse.
AJ: And there’s something there isn’t there about accepting and I know that I’m not going to go into lots of chat about the different kinds of therapies out there. But I know that Acceptance and Commitment Therapy has been found to be helpful by some people, because it’s that idea of accepting and sitting with the thoughts and not trying to kind of suppress them or push them out, but just acknowledging them and then kind of recommitting to your own sort of values. And that and, again, I probably butchered that explanation. But I think another thing that a lot of people do find helpful, and not everyone, but a lot of people have tended to find harmful is, you know, CBT cognitive behavioural therapy. And this idea of exposure and response prevention, exposing yourself to the things that trigger you and then not doing the compulsions, which I can testify is really horrible, but actually really effective.
So yeah, and I would say for myself, like I’ve had several rounds of CBT. And I initially thought that that was a sign that I was kind of broken. And that was a failure on my part. And I sort of now realized that actually, no, as you say, it’s just the OCD kind of flares up and it’s relapsing and remitting, and therefore you might just need to do some of that one on one work with a therapist at points. But what has been really challenging and I’d say that the support I’ve got from the NHS has always been really, actually think always really good, like very high quality. The challenge has always been, Oh, you’ve had six sessions, or you’ve had 12 sessions. And I understand that you know, at The Centre, I understand that from a, I don’t mean at The Centre, but like, I understand that for the model in terms of supply and ensuring that everyone gets the support they need. But for someone who’s been living with like a kind of chronic health issue for many, many years, and these patterns are very deeply ingrained, to kind of get to the end of 12 sessions, and then go, sorry, you’ve got to go now, even if you’re not much better, was really hard. And so many people I know, end up resorting to private therapy, because either they can’t wait, you know, the four or six months or whatever, or they they can’t kind of just fix themselves and get themselves sorted within that timeframe. And so I’m super grateful for stuff like I act, which is now NHS talking therapies. It’s been amazing. But there’s a lot of people that you kind of get to the end of the course of therapy and think, oh, I don’t know what to do now. And I’m kind of worried about what’s happening to these people if they cannot afford private therapy, which is, you know, there’s a lot of money. So yeah,
AK: Totally, I mean, one of the things I’ve been aware of engaging with the Centre for Mental Health this year and similar research. And the work to highlight the problems people are having with access to mental health services is how acute and severe that crisis has become. And I think whoever is in Government is going to need to address this. This isn’t a particular point. For children, young people feel like things are really at a level that they’re not been at, and living memory in terms of the number of referrals for people, young people that need help. And the lag time, as you say to people reaching out for help, and they have not been available. I had a Roman Kemp, who’s a radio DJ and broadcaster and DJ on Capital FM, recently, say on programs that are silent emergency about mental health, when people see that, you know, it’s all very well as having these mental health awareness campaigns and saying, No, you know, talk more reach out, ask for help. And that’s great. But then if there isn’t help available, you said it would liken that to saying for people with a physical health condition or tell us about your physical health symptoms.
By the way, we won’t have any cure for you. So don’t expect one. Say it’s almost like there’s a different level of expectations on mental health still today around on the one hand with the patient saying to people, okay, talk, you know, talk more that’s important in alleviating your mental health, mental ill health concerns. But at the same time, the other half equation isn’t taken care of which is actually genuinely available for services. I would say for me one thing, and this might not be particularly common, I don’t know, to others. But one thing that has helped me with ideas is the deep psychotherapeutic work. I don’t mean psychoanalysis, I don’t mean like, you know, trying to really understand how I was his child and how my parents kind of treated me in particular ways or not, I think what I’m more talking about is trying to come to understand for myself, what are the circumstances in which OCD first appeared, and kind of allow myself to have some permission in forgiving that younger version of myself for feeling as guilty as I did then? Or not forgiving, that’s not the way but it’s a kind of alleviate some of that original harm that I did to myself in saying, Oh, this is shameful, we shouldn’t talk about this. I feel there’s a lot of additional work sometimes OCD and later on, even if you’ve come to accept it’s your mental health condition, it’s kind of almost go back over a little bit. Not everything in your life. I’m not saying that that kind of just kind of finding some ability to look back at your younger version of yourself and say, you’ve been through tough times. And to kind of be able to do that act of service of being generous to yourself and saying that wasn’t okay, you’re okay now but you need to find some healing in that.
And totally, I was self-sabotaging relationships throughout my 20s for sure. I kind of didn’t want to think about them that I knew that OCD played its part Someone new would come into my life and it might be promising. But then maybe I would have certain thoughts and images occur again in relation to that person or that relationship. And I don’t want to put them through anything. And I would not tell them about my OCD, but I bring an immediate halt to the prospect of that turning into a proper relationship. And obviously, they felt quite understandably hard done by, because I didn’t really give them a proper explanation of what I was doing was breaking things off.
AJ: Yeah and I think, you know, relationship OCD, as it might be termed, again, very prevalent, as far as I know, in terms of different kinds of OCD, is very misunderstood. I think as, as we kind of, I mean, I literally could just keep talking to you about this forever, but it’d be an awfully long episode, as we kind of draw it to a close, I guess I’m interested, you know, Is there stuff that you for anyone who has a family member or a friend or a loved one, living with OCD? Is there stuff that you’d kind of suggest, you know, what, what can they do or not do that can help in some way?
AK: Absolutely yeah, and I do recognize it can be very hard for those who are loved ones and for friends and relatives to know how to react and respond. As with any news, that someone that you know, is struggling first thing above all else is just active listening, not rushing into immediate kind of solutions, necessarily feeling even a pressure to buy an immediate solution. But just to listen to what you’re hearing to just kind of demonstrate that there is space for your loved one or your colleague or friend to talk and to share because they’ve probably been holding on to this worry or the problem for a long time. And more than anything, what they might be looking for in that moment, is just to have the space to confidently and openly share something, and to feel like they’re not going to be shamed or judged in doing so kind of up to be listening, I think, absolutely can work with someone with OCD to kind of, say happy thoughts about speaking to a doctor or, you know, would you like me to maybe even help come to an appointment or whatever it might be. And I think it’s standing shoulder to shoulder with someone rather than trying to feel you’ve got a responsibility to fix the person.
Because, again, OCD might not be fixed as such. And it’s not on you, it can even affect you adversely. If you feel like all of a sudden, you’ve got this whole new responsibility to fix someone it’s more about just recognizing that this is one mental health condition or others, how would you respond to any other difficult news, if your loved one was experiencing a health problem, you wouldn’t necessarily try and fix other health problems they had you wouldn’t even see that as in your power. So don’t necessarily see it as in your power to fix. Just see how you can listen, empathize, care and support. Maybe when it feels appropriate to maybe research one or two practical steps that someone can take, there might be certain books that might be useful, certain conferences, you can listen to a podcast together, educate yourself, maybe and try and understand OCD a bit better for yourself, but don’t feel that it’s all on you to understand condition. It’s not all that someone with OCD wants, is a listening ear and have a cup of tea, frankly, you know, we don’t necessarily want pity. We’re not asking for, you know, a gold star for opening up to the fact that the case study, we just want to know, we’re not on our own
AJ: 100% I think you’ve said it perfectly. The only thing I’m going to add to that, having said that, it’s just another thing that can also be helpful, is peer support groups. And I myself have found them super helpful. It’s something we’ve talked about quite a lot, The Centre, in terms of just generally the power of peer support, the huge, huge value of people with the same experiences and different experiences, but some kind of shared commonality coming together to support each other and the amazing power of that. And I’ve definitely found that there are lots of support groups out there, and as you say, lots of resources, which I can add a few links into the show notes about that. But yeah, I just want to say thank you so much, Andrew, thank you for what you’ve shared today. I know sharing this comes at a cost. I get that. And obviously thank you so much for the work you’re doing as our writer in residence. We will of course link to your piece on OCD as well as your other pieces.
Thanks so much.
AK: Thank you!