If you have OCD you might be wondering if you will ever get better. You might be wondering if treatment could be successful for you or if you are the one person who just won’t get better. If you’ve been searching for answers I’m sure you’ve read that your best best for recovery is to do ERP with an OCD specialist. But what exactly does treatment require and how can you make the most out of the work you are doing with your therapist? I asked Lisa Levine, an OCD specialist at the Behavior Center of Greater Washington, to answer a few questions for me. She is the creator of the NER, non-engagement response, that I talk so often about.
How did you get started treating people with OCD?
OCD was something I had been interested in, since I was a teenager because a family member developed OCD. I saw it all firsthand. I saw how tormenting it is. Even as a teenager I was fascinated by the phenomenon of a person being able to know on what hand, rationally, that what they were doing was not necessary or excessive but it didn’t matter at all. I was very puzzled and fascinated by that. In college, my plan was to go into couples counseling. I had an interest in OCD because of my family but it wasn’t really in my plan to go into it.
Anyway, I was invited to a staff meeting where I met Charlie Mansuedo, the director of The Behavior Center of Greater Washington. I loved the director, Charlie Mansuedo, who is amazing and he has taught me everything I know of value. At the time, I wasn’t yet licensed but he told me to contact him when I was. About a year later he actually contacted me. I had just passed the licensing exam and I was still unsure about it but I went in for another meeting and decided, “I think this is what I wanna do.” So that’s how it started. And it's been the biggest blessing ever. I think that OCD therapists are very lucky in a lot of ways because this is a disorder that is tormenting but it’s also very treatable. Its amazing, the degree of torment that’s there, but also the degree of treatability. We have the tools that we need to be able to help people get to the other side of it. Being able to do that is an amazing privilege and it’s an amazing thing to be able to do. I’ve never left the Behavior Center. I’m still there.
When you said, Yes this is what I wanna do, I know you went to a meeting. But did he tell you about ERP or did he tell you what your sessions would look like before you started?
Not so much. I had done a little bit at the prison because there were a couple of inmates with ocd, but I was very new to it. I didn’t have very much experience at all but I did work with them. It was very straightforward OCD. I had a little bit of experience. My dissertation of grad school is on BDD, which has a lot of overlap with OCD, so I had that knowledge. But I was very closely supervised when I started working there. I kinda just dove in and even without knowing half of the nuances that I know now, I think through my supervision , and their treatment with my supervisors, they did well. They just kept getting better from there really.
I was very nervous. Charlie Mansuedo was the one who said, “You can do it.” He made me feel a little more confident. And pretty soon I saw that good things were happening. Things were going well and I just took it from there. A couple of years in, by coincidence, I had a handful of clients with sexual orientation OCD, so I learned a lot about that and that was the beginning of that becoming a sub-specialty area of mine. A lot has happened since then. I gave a talk at ADAA on sexual orientation OCD about 10 years ago. I’ve always been particularly interested in the repugnant intrusive thoughts and the compulsions and the mental rituals. So, that’s how I started out. With very little experience and a lot of fabulous supervision.
It sounds like you had such a passion for learning more and an interest in what was happening.
I was. Yea. And my clients were great. I really love my clients. Of course, there are always exceptions but you really get to know someone and see all their vulnerabilities. I find that even when I’m not crazy about a person when I first meet them, and it doesn’t happen often, but almost always even when that happens, as I get to know them, I love them. It taught me that you know, we make judgements so quickly without really knowing everything. It worked out fantastically well.
So when you’re treating clients, and you talk about how treatable OCD is, what is the most common setback you notice in terms of their treatment being successful?
It’s hard to say one thing. The broad thing is lack of home work adherence. But the reasons for lack of homework adherence are what’s more appropriate to look at. So, shame, I found, is a really big obstacle to people being able to access the treatment without unintentionally sabotaging it. Shame is a really big problem in OCD treatment. Its not addressed as much as it needs to be. The other thing is people unintentionally or intentionally undermining the exposures. For example, there was a girl who had extremely severe OCD. She wasn’t my client but I heard about her at staff meetings. She was doing really difficult exposures. I didn’t really understand what was going on there but then she came for a few weeks to intensive treatment, where she worked with a bunch of us. I started noticing that even though she was doing the exposures she was also doing other things differently that day because she did the exposures.
Like doing more compulsions around the exposures?
For example, we drove through an intersection where there was an accident. It was a very high level exposure for her. But I found out that later that day she chose not to go to the supermarket because we had driven through that intersection. So she wasn’t doing any compulsions in the moment but later in the day she was treating herself differently, almost like she was in a contaminated state. It was a very subtle way to undermine her exposures, that really easily could slip under the radar. Similar things to that. So often, it happens where exposures are unintentionally undermined. Another client I had would wait until after she looked at the Twilight website, when Twilight was really popular, and she would wait until she had checked it out before she doing her OCD homework. She didn’t want to do her exposures and then look at the website. Twilight had nothing to do with her OCD but she didn’t want to be contaminated when she was looking at that website. And her OCD was not around contamination.
I can understand that. When you do exposures, you don’t want it to ruin your day after. So you can do the exposure but then kind of baby yourself after. I’ve done that before.
Sure, sure. And a lot of times it's unintentional. A person doesn’t even realize it. A lot of times too, people want to do their exposures. They want to be a good client and do what they are supposed to do but sometimes, especially when people are particularly smart, they find ways to do the exposure in name, but not in the spirit of the exposure. So that comes up sometimes too. But lack of consistent adherence to what the person is supposed to be doing is definitely the biggest thing getting in the way of treatment. The reasons behind that are what need to be addressed. Like what I was saying before, shame is such a big one. It completely undermines a persons self-efficacy beliefs. And in order to overcome OCD, a big part of the recovery is building that self-efficacy back up. Building up the belief that they can do this and they can have a say at what happens to them, as opposed to just being at the mercy of OCD and having to hope they have a good day. Or hope they aren’t bothered by certain compulsions. You know, people coming in to treatment have no idea that that could be a possibility for them. OCD likes to destroy self-efficacy. It wants people to believe that they can’t do it and that they need to do the compulsion or that they won’t be able to handle it. Self-efficacy is such an important piece and when shame is a prominent part of the picture it really interferes with strengthening that self-efficacy, which is a necessary ingredient for getting better.
Makes sense. So a lot of people ask, since OCD is chronic, how do I know when I am done with treatment? When is my treatment considered successful?
I wouldn’t even necessarily say that OCD is always chronic. I’m hearing that more and more as the years go on but there are some cases where a person’s OCD has completely remitted. Usually, it’s not 100% but at the center we have all had clients who have experienced that.
Is there a correlation between how long the person has struggled or the onset of the disorder, and the recovery rate?
Nothing that I’ve noticed that is common among those people. One thing I can say is extreme persistence and determination to fight it. Other than that, I can’t think of a common denominator there. It does happen, but it is the exception. I wouldn’t want to end treatment with somebody where the OCD was still significantly impacting their ability to enjoy their life. That doesn’t have to be 100% but it’s gotta be up there. I say at least 90%. 95% is even better. Ultimately, at the end of the day, it’s up to the client. I like people to go all the way, as far as they possibly can and leave themselves not vulnerable to the OCD. Whenever any symptoms are leftover I feel like a person is more vulnerable to the OCD trying to attack them again. I would consider anywhere in the 90s, preferable mid 90s a successful treatment out come. And have a good relapse prevention plan in place as well. What that would be is basically, any time a person even has a thought of avoiding something, they just do it immediately. Even if they don’t go through with the avoidance or compulsion, even if it crosses their mind, they need to go back to the highest level of exposure they were doing when treatment ended, and do that for a good week. Just stay really on top of it. If a person does that, the OCD can never get that bad again.
I know. My therapist said, “Ok your’e pretty good but when are you gonna drive to Tahoe by yourself?” I’m like, never!
Right. But you know, it’s up to thee client because the client is the one who has to do the work. And the client is the one who knows when they are eagle to enjoy life again to a degree that is satisfactory. When a person is at that point the motivation to do the exposures, of course, isn’t nearly the same. When somebody is desperate that is when they are most motivated.
There’s a tapering off of exposures once you get to a cool spot.
Exactly. And it's understandable. We’re asking people do to the last thing on earth they want to do. Like, the worst possible thing. So in order to do it you have to be very motivated. Desperation does that. As people start to get better, I always say there is a linear relationship: As desperation decreases, so does motivation. And it’s understandable.
When creating exposure for clients do you use an hierarchy or do you go straight into the hard stuff?
I do think hierarchies have an important place. I most always make a hierarchy with people but often the main way that I use the hierarchy is to get a sense of where the person is and what they can do. And always we drift from the hierarchy. I don’t know that I’d follow the hierarchy step by step. It is a foundation but I find that once we start doing exposures, other more relevant, better exposure ideas come out of whatever exposure we’re doing. Usually, what we end up doing is more fitting and better than whatever we had listed out in the beginning. For different types of OCD there are exposures that you always do. There are endless variations to how one would do the exposures, of course. But I think it’s impossible to make an hierarchy for every single exposure that people do in treatment. It’s a good foundation to start with.
Depending on where the patient is at weekly, you might adjust the exposure to whatever is most relevant.
Absolutely. Whatever is impacting their life the most. Though sometimes working on something that is even minimally bothersome but much easier for them to approach is helpful.
Yea! That way you can build some real confidence with doing the exposures.
Even if whatever exposures you are doing are not at all related to what the person is really bothered by, it still uses the same pathways. It helps the bigger picture, which is whatever the content is really bothering them at the time.
What is your take on all the different subtypes and the obsession with content?
We always say the problem isn’t the content. It feels like its all about the content of course. But in reality, the content is not what’s relevant. It’s only relevant to the degree that it informs the exposures we are going to choose to do. For example, sexual orientation OCD. I think there is some value in the labels because its an ease of communication. Rather than having to say “for people who are afraid of being gay” or “for people who are afraid that they are attracted to children”, it’s much faster to say POCD. But it’s not a different animal in any way. Like I was saying, the content is really only relevant in terms of eliciting the anxiety that we want to illicit so that the person can digest it and habituate and see that they can handle it.
Do you find that it’s common for people with OCD to have a lot of different themes or does it typically stick to one?
It definitely happens but most often there are a handful of different themes, sometimes going on at the same time. Sometimes when one issue resolves, then a new one starts. But I usually don’t see it jumping around so much. People usually come in with between 1-5 different themes. A lot of times, multiple themes are actually the same theme because the core fear is the same. It is just expressing itself in a different way. For example, harm. Driving or getting into an accident, that’s a fear of harming people. Its the same theme as fear of pushing somebody into the metro tracks, for the most part. If its the same core fear, I wouldn’t consider it a different theme, just a different manifestation of theme. The way I see sexual orientation OCD or relationship OCD, is that they are very similar. I very often have clients with both of those themes. I see it as a fear of not knowing your own mind, ultimately. And that’s the case for sexual orientation OCD, or ROCD. That can be the case for POCD; not knowing what you really want or what you really think. So it can look very different but sometimes it’s the same core fear. Not everybody would agree with that, though. Many people with sexual orientation OCD would say, “It’s not a fear of not knowing myself.” But usually when I say that, people agree. Not always though.
That totally makes sense. So I want to talk a little but about the non-engagement responses. What is the most important thing to remember when using the technique?
I have three things. The first thing is, you have to realize that you are basically agreeing with the OCD in a strategic, masterful way in order to disarm it. You are not agreeing out of resignation or because of giving up. You are doing it strategically. Instead of using the responses from the position of the victim, you are using them as the person in charge of the situation. You are using the responses masterfully. The second thing is persistence. Use the non-engagement response as many times as you need to until the OCD gives up, for that moment. It may give up just for 30 seconds or an hour. Of course it’s not gonna just stop when you say “Maybe so”. It’s almost as if it’s testing you. It keeps trying to debate you. It takes time for the OCD to see that it’s tactics aren’t going to work. That’s when it gives up. You have to keep saying, “Maybe, maybe, maybe maybe.” The third thing is, use the responses as a conclusion. For example, if you are using “Maybe so”, that has to be the conclusion. The answer is maybe. The answer is “That would suck”. Me masterful, be strategic and be persistent in using the response as a conclusion. When you are agreeing with something it makes it extremely difficult, if not impossible for it to argue back.
Like when talking back to a bully.
How did you come up with non-engagement responses?
It stemmed out of what I was noticing was a need that wasn’t being addressed. Even with really good treatment. That was what really struck me. I had a couple of clients who came from a very well known inpatient OCD treatment facility and another from a good therapist. They had done exposures and they had improved but OCD was still a problem. They weren’t on the other side at all. One person in particular, that came back from the residential place, told me she had been able to master all the other techniques but nobody had been able to teach her exactly how to stop thinking about it. Her main compulsion was the mental reviewing . She was thinking “Did I do this or did I do that”, all day long. She could be doing these great exposures but the response prevention was really not happening because she was still figuring things out in her head. The compulsive reasoning, which she had been taking part in, is very often mistaken as an obsession so it’s not treated as a compulsion. Therefore, having people who are doing the exposure without the response prevention. I started wondering about it and the first one I thought of, I called it a therapeutic response at the time, was “Maybe so.” Thats the foundation of the non-engagement responses. It’s one that works for whatever the OCD says back. That was how it started and along the way I came up with different variations. Acknowledging feeling anxious is a good way to start. Saying maybe your fear is true is asking a lot. So we start out by acknowledging the feeling, which is based on the dead mans rule. A person is unable to “just stop thinking about it”. They would if they could, so we have to do something else instead. So that’s really the foundation of the non-engagement response.
For people like me, who don’t know what the Dead Man’s Rule is, can you clarify?
Dead Man’s Rule states that one should not attempt to do anything that a dead man could do better, meaning you always want to try to do SOMETHING rather than trying to refrain from doing something- because a dead man could refrain from doing something/anything better than any live person ever could. Ie, a dead man could NOT wash his hands or NOT check the stove- superbly well! But a dead man could not recontaminate his hands after washing, or tell himself “maybe I didn’t look closely enough” after checking the stove. With NERs, a dead man could NOT respond to OCDs attempts to bait him into compulsive reasoning really really well;) A dead man could refrain from engaging, or from “getting on the hamster wheel” expertly. But a dead man could not “agree” with OCD that anything is possible, that he doesn’t know what will happen, that he’s feeling anxious about it, and/or that it might really suck if the feared thing actually happened. So we want to tell people to ‘do something else instead’ rather than telling them to not do something (i.e. refrain from engaging with/responding to the thoughts).
Last but not least, What would you tell someone who has OCD but hasn’t started treatment yet?
I’d tell them that they can do it! I’d explain that it will be challenging, and sometimes very challenging- quite possibly the hardest thing they will ever do in their lives, but that when they "get to the other side” they will feel like they can do ANYTHING. I’d tell the person they will learn how to GET THEMSELVES BETTER. That the therapist is their guide, but they are the one healing themselves. I’d explain why OCD is so treatable. I always say, “the only good thing about OCD is that it's so treatable.” I’d explain how treatment works, and why it works. And I’d stress how critical it is to find a therapist who truly knows how to treat OCD, and what to look for to make sure their therapist is using evidence based treatment.