Podcast: Dr. Jeff Szymanski (IOCDF) on OCD and Hoarding
In this week’s episode, Trevor talks openly about how his problems staying mindful and present have led to some significant changes in his medication regimen and recalls a particularly difficult time in his life when a certain med he was taking led to some serious physical issues and an embarrassing emergency room visit.
Then we talk to Jeff Szymanski, PhD, executive director of the International OCD Foundation (12:48) as he takes a deep dive into OCD, hoarding, and the underlying anxieties that can lead to these conditions. Jeff also discusses exposure and response prevention therapy and his own struggles with particular anxieties and fears.
Trevor: Welcome back to Mindful ... I can’t even finish the title. That’s how tired I am. Can I go to sleep? Can I go to sleep? It’s Mindful Things. There, I got it out. Mindful Things. I’m here. Barely. Taking a week off next week. I’ve convinced myself that I’m going to use that week to unpack, set things up, and decorate my apartment. What’s really going to happen is that I’m just going to sleep for an entire week. That’s really what’s going to happen. I don’t feel guilty about this yet. I will. I will, come around next Thursday. I’ll feel guilty about it. But right now, sounds fantastic.
I had some recent bummer ... It’s not that big of a deal. It’s a big deal to me, but my therapy, my mindfulness exercises, they’re kind of not working, and this happens. And when this happens, it’s time to increase meds. So I just had a med increase. I won’t get into the specifics, but I’m on Effexor. That got doubled. Latuda, that’s staying around the same, but I was just prescribed something I wasn’t taking for a while. I’ve taken it before, and while it helps me mentally, it certainly has a negative effect on me physically. I am back on Ritalin, because I can’t even pay attention in a meeting.
I was in a meeting yesterday. Person who was talking to me, they knew I wasn’t paying attention. I was out. I don’t remember anything they said, and I apologized at the end of the meeting. I said, “Listen, it’s not personal.” I even showed them the prescription I was just written. I was like, “I’ve got to go back on this. I just can’t pay attention.” I can’t. It’s not I won’t try. I really try. But it is so hard for me to stay mindful and center right now.
I don’t like Ritalin. I had a very, very bad experience on Ritalin, and listen. I am not demonizing Ritalin. It helps me a lot. It helps me a lot. And it’s necessary, and I think it’s the right thing to do. However, first time I was on Ritalin, it was a couple months in. I had an incident that put me in the ER and the doctors ... I can’t remember the name of what happened to me. I’m going to ... I think this is what it was called. It was called super- or supraventricular tachycardia.
What happened, I was working. I was filming. I was actually in the middle of shooting. I had camera mounted on tripod. It was in the middle of it. I was rolling. I was filming. All of a sudden, my heart rate just doubled or tripled, I don’t know. It wasn’t a panic attack. I’ve had plenty of panic attacks, and when my heart rate increases you feel it increase. This just was immediate. Immediate. I asked someone to help me. They ended up calling an ambulance. They were great. It was embarrassing. It was in the lobby. Everyone was watching. They take me into the ambulance. They take my heart rate.
And you know what? Paramedics, you might be some of the best actors in the world. And I mean this as a compliment, because you were calm and collected, acted like everything was normal. This guy took my vitals and all this stuff and said, “Hey, you know what? I’m going to hook you up with an IV, and I’m just going to give you a drop of something, and everything will be fine.” They gave me this IV, put some liquid in it, and my heart rate went back to normal immediately. Immediately.
And I remember exactly what I said. I turned to the paramedic ... They had to do it right then. We were still in the parking lot right outside the lobby, and I turned to the paramedic and I said, “What kind of Lord of the Rings bullshit magic was that? Because that was amazing.” He said, “Listen.” He goes, “I remained calm. I didn’t want to get you alarmed.” He goes, “But ...” And I can’t remember what the heart rate was, but it was very, very high. And he said, “I was extremely nervous.” Nah, he didn’t say he was nervous. He goes, “I was very alarmed.” I can’t remember what he gave me, but what it did was it stopped my heart for a second and then restarted it again at a normal rhythm.
Now, everybody asks me all the time, “What did you see in that one second? That one second that you were dead, what did you see?” I would love to tell you that I fist-bumped Stanley Kubrick, Ingmar Bergman, and John Coltrane, but it did not happen. I didn’t see anything. I don’t believe in it, anyways. But it was a hell of an experience.
I had to see a cardiologist for a year, and they’re like, “Well, you have a history of heart disease in your family, but it’s also the Ritalin.” My heart rate does go up quite a bit on the Ritalin, but it also gives me the ability to be more present, more awake. It doesn’t matter how much I sleep. I’m just exhausted all the time. My brain is on overdrive 24 hours a day, and I guess that takes up a lot of energy, I don’t know. I don’t even know myself. You could find that to be total BS. I’d kind be with you on that, but it’s the best guess I have.
So yeah, back on ... Well, actually, I’m not back on it yet. I went to my pharmacist yesterday, and they said they were back-ordered, so they recommended another pharmacy, and I’ve got to go do that. Actually, maybe I won’t start until the following week, because I just want to use next week to stay at home, sleep, catch up on a lot of movies that I missed from last year, and relax, because when I get back here I’ve got to shoot and direct an instructional video, and it’s going to be pretty hectic.
Yeah, you guys who are on meds, you know what I’m talking about. It never stays. And for those people that, your medicine regimen is consistent? Gosh, hats off to you. You are lucky. But for a lot of us it’s up and down, meds come and go, some meds you have a really bad reaction to. I believe the doctors that prescribe them to me are doing the best that they can, but sometimes it’s ... You throw something at the wall and see what sticks.
I was really nervous about going on a drug maybe about six years ago that I guess was new to the market called Pristiq, and Pristiq was great until it wasn’t. That seems to be common. The meds are good to great until they’re not, and then you got to change something up. It just shows how versatile the body and the brain is. You got something that works, but the brain’s going to figure out a way for it to not work, so you got to try something else.
Those of you out there, you know what I’m talking about, and sometimes you desperately want a new med, and sometimes you’ve got to do it. And I’m going back on Ritalin begrudgingly, and hopefully that’ll help things, because I’ve definitely been a bitter, not-present kind of just dismissive and slightly angry person the last couple weeks, and yeah, that’s got to go because I need this job, I want this job, this job makes me happy, and I need to be able to work. I need to be able to perform my duties. Yeah, meds. Great. Yeah, my sarcasm and negativity, that’s not going anywhere. For those of you that like that, hey, I promise you, my hopelessness isn’t going anywhere any time soon.
On today’s podcast, no drumroll please. Today we have Jeff Szymanski, a clinical psychologist. He used to work at McLean Hospital in our Obsessive Compulsive Disorder Institute. He wrote a book called “The Perfectionist’s Handbook.” In 2008, he began working at the International OCD Foundation as the executive director. He comes on the show today, and we have a nice talk between him, myself, and Scott, and talk about OCD, we talk about hoarding.
I don’t know much about hoarding. I’m definitely a collector, but one thing that kept my collecting out of control was a brief period of poverty. You look at your stuff, and you’re like, “Not only do I not need this stuff, but I can get rid of some of this stuff and have money so my cat and I can eat.” So I got rid of a lot of movies, a lot of records. And it was great, because when I moved back here from San Diego it was a lot less to move back. And I don’t miss a lot of those records. That’s a lie. I miss most of them. I don’t know. Maybe I could have been a hoarder, but thankfully not.
And that’s not to mock hoarders, it’s ... OCD and hoarding’s not something that I know much about, but what little experience I’ve had with it or witnessing it is very alarming, and I have a lot of sympathy, empathy, all the feelings, for people that are going through it. When I was first in the outpatient program here, I met somebody with OCD. I talk about it in the interview, and the suffering that I saw her go through was ... It was brutal. It was really brutal.
That was one thing about coming here, is that you come here with your own issues and then you see other people with issues and it ... I don’t know, it put me in check. I don’t know if that’s a good thing or a bad thing. I wasn’t dismissing my own feelings or what I was going through, but wow. Witnessing somebody with OCD, that is hard, and my heart goes out to anybody that goes through it. It’s tough.
Yeah, here we go. Jeff, he rolled in here. He has a very striking appearance. His hair is perfect. He has a very contemporary wardrobe. I told him he looked like he failed an audition to be a henchman in a “Die Hard” movie. He laughed. So, hey, he’s got a good sense of humor. Jeff’s really great and has a lot to share on both OCD and hoarding. So here we are in the studio, myself, Scott, and Jeff Szymanski. Enjoy.
How are you doing today?
Jeff: I’m good.
Trevor: Yeah? You’re not going to ask me how I’m doing?
Jeff: No. I’m a guest.
Trevor: You are the guest, Jeff.
Jeff: I’m the guest.
Trevor: This is how this place—
Jeff: We’re definitely getting off on the right foot.
Jeff: No, I thought you were like ... You’re already boring, so are you going to perk up? I thought that was the question.
Trevor: No, no, no. No, I could tell this definitely wasn’t going to be boring because when you walked in ... I was trying to think, how did he get here, to this part of his career? When you walked in, I was like, “Oh.” You clearly failed auditions to be a bad guy in a “Die Hard” movie, and now you went into this line of work.
Jeff: Growing up, I was the spitting image of Ron Howard and so would have people walk behind me and whistle the Andy Griffith song.
Jeff: I’ve always had that—
Trevor: Okay all joking aside—
Jeff: I looked like a child.
Trevor: Really, that’s—
Jeff: I looked like a child.
Trevor: Ugh, that sucks.
Jeff: I’m now almost 50. I don’t look like a child anymore.
Trevor: And to be compared to Opie Cunningham, of all things.
Jeff: Yes. Not cool. But he was a cute kid.
Scott: But a wonderful narrator.
Trevor: I like “Cocoon,” for the record.
Jeff: Oh, I agree. I agree. I liked that.
Trevor: Yeah, excellent narrator. “Arrested Development.” Excellent narrator. He is an excellent narrator, I’ll give you that.
Why are we here?
Jeff: You people invited me. I don’t know.
Scott: I just had nothing better to do.
Trevor: We had a nice pre-interview yesterday, yeah?
Jeff: Yeah, yeah, yeah.
Trevor: It was really good, and we talked most of the time about hoarding.
Jeff: Yeah, we floated around a bunch.
Trevor: Before we get into anything that, yeah, let’s talk about something we didn’t talk about yesterday, is who are you and where do you hail from and how did you end up where you are today?
Jeff: My name is Jeff Szymanski. I’m currently the executive director of the International OCD Foundation, which I’ll talk more about later. I ended up here going to graduate school at Northern Illinois University. I applied to McLean Hospital for my internship as part of finishing my training for my PhD, and so I came out here in the mid-’90s and did my internship here, went off and worked in a couple outpatient clinics primarily working with people with borderline personality disorder, and then found my way back to McLean in 2001, got hired at the OCD Institute at McLean Hospital and was here till 2008 before taking over the foundation.
Trevor: And going to taking over the foundation a bit more, was it something that you sought after or did they come to you, or how did that happen?
Jeff: It was very weird. The organization was started in 1986 by people with OCD. They were participating in some of the first clinical trials, SSRI trials for OCD, down at Yale, and Wayne Goodman was the person running the study. They came, and they lived inpatient. They were taking the SSRIs, looking at how their symptoms changed, but they found a lot of camaraderie and community by meeting with each other, and they took that once they discharged out into the world and created the foundation from there.
This was down in Connecticut in ‘86, ‘87. In 2007, the organization had stalled out, and so they made a decision to move it out of Connecticut and move it up to Boston, which is a lot of the board members were from here, the OCD Institute was here, MGH’s program was here, so they really felt like it was an OCD hub. At the time they were doing that, I was the director of psychological services at the OCD Institute, and my medical director was Mike Jenike and he is the chair of the IOCDF board, scientific and clinical advisory board. Then Diane Davey is the program director at the OCD Institute, and she was the incoming president of the board.
So they were telling me about this transition and what the organization did, I had kind of known a little bit about what the organization did. A mutual friend of ours, Denise Egan Stack, who worked at the institute for many years, took me out to dinner and said, “Here’s why I think you should take over this nonprofit.” What was compelling to me ... I was not looking for it. I was not planning on ever making a career change like that. But the real reason I chose to do that career change was I got tired of hearing the number of people who were ill for so many years who, if they had gotten treatment five, 10, 20, 30 years previous, would have had a very different life. There is effective treatment for OCD, and one of the biggest obstacles to accessing it is finding people who know how to treat OCD.
Trevor: Wait, I’m sorry. Back up. You said you were feeling terrible for people who, 30 years later, realized they needed this treatment, didn’t have access to treatment during a pivotal moment where it could have changed the course of their life?
Jeff: Sometimes that was the case. We know if you intervene when OCD hits as a kid, some of those kids with effective treatment ended up being with no symptoms the rest of their life. But it’s more about if you’re suffering an eight out of 10, and we could have gotten you treatment and got your suffering down to a two or four, why wouldn’t we do that?
So what I was hearing from the stories of people coming into the institute was, “I ended up here because I’ve just not gotten proper treatment.” So what I liked about the prospect of the foundation was the opportunity to raise awareness about what OCD is, not the caricature that you hear in media and the public a lot of time. Not always, but a lot of the time. And to really make sure that people had access to care and to one of the things I love about the foundation is the training programs that we have. So really, getting more clinicians skilled to actually treat OCD. Again, we know what the treatment looks like, we know that it’s effective. Not enough people know how to do the treatment in order to get people better.
Trevor: So the foundation, it wasn’t so much that “Here is the place where you can get the treatment you need,” it’s “We need to spread this.”
Jeff: Yeah. We do dissemination. We do dissemination of information, education, what treatment should look like, and then training people to do that treatment. We don’t provide any mental health care at the foundation. We hook people up with what those resources are around the country.
Trevor: How do you determine what treatment should look like?
Jeff: There’s lots of research, starting in the ‘70s and ‘80s. The medications for OCD started in the ‘70s and ‘80s, as I was talking about. Some of the first SSRI trials were happening at Yale. Everything that we recommend at the foundation is based on research. We have a 50-member scientific and clinical advisory board. These are all the experts around the country, around the world, and they advise us about what is up-to-date, what has enough research, what’s still experimental, where you should start with your treatment, and if that doesn’t work, what’s your second line, what’s your third line. So all of that is informed by our research experts.
Trevor: So why OCD for you?
Jeff: It wasn’t on purpose. When I went to graduate school, my interest actually was in how people thought and why they did what they did and so I actually wanted to be a cognitive experimental psychologist. I wanted to see how people thought. By the end of graduate school I hated research and so I decided I wanted to be a therapist. It was, for me, coming to McLean as an intern, it was this pivotal shift in my thinking about what I wanted to do and the core of my understanding of myself as a therapist I discovered that year, which is there are a lot of people who are really ill and get really bad care.
One of the populations I saw that happened with were people with borderline personality disorder. I worked really well with them, and I heard the same stories. “I’ve been in treatment for years and years and years, and I’m now getting access to effective treatment, and I’m getting so much better.” And so that really defined me as a therapist.
I did that for five or six years. I was working in an outpatient clinic and working in intensive programs, but wanted a little bit of a shift. I had just turned 30, 31, one of those “What am I doing with my life, is this what I want to do with the rest of my life?” And I started looking around—
Trevor: Is that what happens at 30 and ... I’m 42, and that—
Jeff: That still hasn’t happened?
Trevor: That’s bad, isn’t it? Is it bad? It’s bad, isn’t it?
Scott: One of these days.
Trevor: One of these ... Oh, boy. Oh, boy.
Jeff: Yeah, so it was more just looking around. “Is this the only thing I want to do?” So I went back to McLean and I started looking around, and Phil is a ... Phil Levendusky is a mentor of mine. He has been running the psychology training program here since the mid-’70s. He and I talked and talked about the programs that were available and he said, “You know, there’s an opening at the OCD Institute,” and I said, “I haven’t treated a ton of people with OCD.” And he said, “Don’t worry about it. Just go interview.”
And they offered me the job, and I said, “Why did you offer me the job?” They said, “We know how to treat OCD, and you have the basic skills to treat OCD. We don’t know how to work with people with personality disorders, and we really need you to come and help us do that and train us up on that.” And so that’s how I ended up in OCD.
I took the job, and in my head I said, “I’ll be here for two or three years. OCD’s interesting, I’ve worked with some people with it, but after two or three years just working with one disorder, I’m not going to stick around.” Well, lo and behold, you never worked with one disorder. Almost everyone who came through the institute had multiple diagnoses, and they were very ill, and a lot of them had not gotten good treatment prior to coming. Some had, and some were just very severe and treatment-resistant for various reasons.
But I just loved the population, and then loved the community, and so I’ve been involved in the OCD community since 2001 and have no plans to go anywhere. I think it’s a group that is under-recognized. I think it’s-
Jeff: Under-recognized. I think it’s still, in the media, considered somewhat dismissive because obsessiveness gets mixed up with OCD, compulsivity gets mixed up with OCD, so obsessiveness is a personality, compulsivity is a personality trait. We are all somewhere on that spectrum. When you have dysfunction and impairment and distress, you have a psychological disorder, but you have Khloe Kardashian with Khlo-C-D, where her podcasts are about her—
Trevor: Wait, wait, hold on.
Jeff: Yeah, no. She rearranges her house as part of her OCD.
Trevor: No, hold on. I just threw up in my mouth for a second—
Jeff: Yeah, we all ... Yeah. Exactly.
Scott: What are you talking about?
Trevor: No, I’m honestly asking.
Jeff: Khloe Kardashian. Go and look it up. She has a site that is about her quote-unquote “OCD.”
Trevor: What is this Khlo-C-D, is that a thing?
Jeff: No, it’s playing off of “OCD.”
Trevor: Okay, but is that what she calls it? Khlo-C-D?
Jeff: Yeah, no. Google it. It’s awful. Khloe, it’s awful. Stop it. It’s awful.
So I like being able to say, “Here’s what obsessiveness is, here’s what neat and tidy, and compulsivity is, and this is a real psychiatric disorder, and people really suffer.” You and I talked yesterday about the show “Hoarders.” The only thing that the “Hoarders” show did was really show people that this is a distressing, life-destroying disorder, but it’s also treatable. “Hoarders” never showed that part, but these disorders are treatable.
And so I like being in the OCD community because they’re a black sheep. I don’t feel like people with OCD are recognized as having an actual disorder. And a lot of people also just suffer in silence for years and years and years. The symptoms are very embarrassing for a lot of people because they do recognize that their thought process doesn’t make sense and shouldn’t be doing what it’s doing, and they think they’re the only one, and so that’s another obstacle to getting treatment, isn’t just that it’s hard to find effective care but that you don’t want to access treatment because you’re afraid of telling people what’s really going on in your head.
Trevor: I found that OCD has been a part of common parlance among a certain age group just to refer that “I’m a little nutty about this.” “I’m so OCD about this thing.”
Trevor: I apologize to the listeners. I used to use it myself. I was a patient here, and one day it was a lunch break, and we were all going to ... Group of us were going to sit down together and eat lunch, and there was more of us than could sit at one table so I grabbed a second table, and I pulled it over so one of our friends, who was suffering from OCD, could sit down with us.
When I pulled the table over, the legs of the table revealed a little mound of dust and dirt, and she saw the dust and dirt. I’ve never seen anything like it in my life. I haven’t seen anything like it since. She froze. Froze. Her hands were even up in the middle of ... She was talking, and I was like, “Hey, what?” She was not putting on an act. I literally had to grab her, lift her up. I had to lift her up in my arms and bring her down the hallway and set her down on the other side, and then her and I ate lunch there.
After that, I never used the term “OCD” to refer to something irritating or ... I’ve never done that again, because I know the metaphor of a prison’s used a lot to describe many things, but that really looked like some sort of life prison. It looked like hell. And I wish I kept in touch with her, because she was really sweet and really kind, and I’ve never seen anything like it. It was horrific. It was probably the ... I didn’t see scary things here, but that was one thing that I saw that really terrified me, that really ... I was like, “I have no idea what I just saw, but it looked awful.”
Jeff: The experience of someone with OCD when they get symptomatic is as though a truck is coming at them, and—
Trevor: And they can’t move.
Jeff: And neurobiologically, your brain is giving you the same signal of a truck coming at you, and you’re in actual, physical danger. That’s the same signal your brain gives you when you see a pile of dust, because when you have a brain that is affected by OCD, you aren’t processing information the way a non-OCD brain is. So you’re seeing a truck coming at you. You aren’t seeing a pile of dust.
Trevor: I don’t know if you can answer this. How does the brain make the connection or create an equivalent between a pile of dust and a truck coming at you?
Jeff: Right, so here’s what our brains are supposed to do in order to keep us alive. They’re supposed to have a warning system that says, “You’re in danger, pay attention and then do something, if the danger is warranted, to protect yourself.” That warning system in our brains is our anxiety. It’s located in the side part of our head. Lots of different brain structures are involved in it. When you do neuroimaging studies of people with OCD, without OCD, you see people that have OCD, they have a very overactive circuit where our anxiety, our warning system, is.
Here’s what’s going on. You experience anxiety, and you go, “Okay, brain. Thank you. You’re telling me there’s some danger. Let me look and see what the danger might be.” For someone with OCD, that same signal is screaming at them, and it may not have any particular rhyme or reason about what it decides to focus on. People’s OCD symptoms change. There’s no rhyme or reason about why some people get fixated on thoughts, some people get fixated on colors, some people get fixated on germs. Who knows? Actually, therapists are not supposed to go and look for that. There’s no meaning behind it.
Trevor: Wait, what?
Jeff: There’s no meaning behind it. You just treat the symptoms. I worked with so many people who analyzed their obsessions for years in therapy and stayed sick, and they came and did proper exposure therapy, got better in three months. Years. “Why am I afraid of germs? Because my mother didn’t potty-train me well enough.” No. It has nothing to do with that. I know your mother did not potty-train you well, but that’s a completely different story.
Trevor: Yeah, I know you’re waiting for me to follow up, but instead I just want to look at you weird, like “What are you talking about?” What did you want to say?
Scott: How do you effectively treat someone?
Jeff: Let’s go back to some basics. Obsessive compulsive disorder. Obsessions are part of the disorder. Obsessions are not how we use obsessions in typical language. “I’m obsessed with the Red Sox,” “I’m obsessed with this pair of shoes.”
Trevor: Hold on.
Trevor: Is “obsession,” at this point in the process ... Is it thought-based or is it emotional?
Jeff: An obsession, in OCD, is defined as a thought, image, or impulse that, when you experience it, it’s automatic, and comes with lots of anxiety, or might come with disgust, or might come with lots of guilt, but primarily anxiety. When you experience this thought, impulse, or image, it is so distressing and anxiety-provoking that you feel compelled to do something to make it go away. Anxiety is information we’re in danger, so you have this warning system that is broken and is overactive and it’s telling you you’re in danger when you’re very likely not in any danger.
But because you’re feeling this feeling, and it feels awful, and you’re seeing these images and hearing these thoughts in your head that sound terrible, you then do behaviors that, in the short term, dampen the obsessions, make them go away for a little bit. It makes the anxiety dissipate a little bit. So people get caught in this cycle of, “I’m having these terrible thoughts and images, I’m having all this anxiety. I need to do something to make it go away. I found this ...” They will describe this crazy behavior that I am engaged in that makes this internal experience less awful. So that’s compulsive behavior.
So we have obsessions that get triggered, can get triggered by anything, something in your environment, something internal, causes lots of anxiety. You engage in compulsive behavior to make the anxiety go away, even if it’s only short-term. This now, in order for it to be a disorder, is time-consuming. You’re spending lots of time every day, you’re spending time trying to make the thoughts go away, you’re spending lots of hours in the day doing the behaviors to make the thoughts and anxiety go away. You’re not able to take care of your kids, you can’t get to school, you can’t get to work. Now we have a psychological disorder.
Trevor: Is there ever an addiction to the behavior?
Jeff: So, addictions—
Trevor: Meaning that at some point the OCD, or whatever is setting off my OCD, it actually isn’t that. It’s now that I’ve become addicted to compulsive behavior and I’m looking for triggers to set that off. No?
Jeff: Yeah, no. That doesn’t happen.
Trevor: That doesn’t happen.
Jeff: I’m going to give you a rule of thumb.
Trevor: With your fingers?
Jeff: With my fingers.
Trevor: Yeah, okay.
Jeff: There’s impulsive behavior, and there’s compulsive behavior. Compulsive behavior is behavior done with the intention of making anxiety or some other internal negative event go away. Impulsive behavior is, I’m engaged in a behavior with the purpose and intent of getting something that I want that feels good. Gambling highs, addiction, I’m trying to feel something.
Again, you have impulsivity and you have compulsivity. People with OCD, their entire desire is, “I feel awful inside, and I want to make this go away.” So what I say to people is, “You don’t have OCD in order to understand that.” Think about losing a pet. Think about if you’re a parent, and your child died. Think about if you’ve lost a parent or someone close to you, if you’ve lost a job. Think about a time in your life where you experienced emotions so intensely and for so long that you would be willing to do anything to make it go away.
Now, when there’s a loss or a lost job, you understand, “Okay, this happened. This experience makes sense, as bad as it is.” Now imagine that all those feelings are happening for no good reason. It’s just that your brain is misfiring, but no one told you that that’s going on. So it’s a terrifying experience for people. “My brain is showing me all these things. My emotions are completely out of control. What can I do to make this go away?”
The treatment is paradoxical. If you think about why the warning system in your brain is, over time, gotten more and more impaired, it’s because your brain says “You’re in danger” and you go, “Okay, let me protect myself.” That reinforces your brain to say the next time, “You’re in danger.” And then when you protect yourself, the next time you intensify the signal that you’re in danger. The only way to break this is to allow people to have the obsessions, have the images and thoughts, have the anxiety, and not engage in the compulsive behavior.
Trevor: That’s the only way?
Jeff: There’s medication.
Trevor: Sure, sure.
Jeff: But this really is the treatment of choice for all anxiety disorders, really, is exposure therapy. If you’re anxious in social situations, you go and expose yourself to social situations. If you’re afraid of heights, of which I am, you go and expose yourself to heights. I was just in Ecuador, and I was terrified about 50% of the time. I hate heights, and there are cliffs everywhere. It’s in the Andes Mountains. They put me in a little shopping cart and put me thousands of feet over the rainforest, and I was about a second from a panic attack. But you stay in those situations, you don’t protect yourself—
Trevor: Do you suffer from anxiety?
Jeff: I don’t in general. I do ... That’s the one straightforward phobia I still have. I used to have a blood phobia that I treated myself. I used to have a very—
Trevor: Wait, wait, wait. A blood phobia that you treated yourself? How’d you treat it?
Jeff: I’ll give you examples about how you do exposure therapy. If you’re afraid of heights, you go and do things that are about being exposed to heights. So I’m on a cathedral in Quito, Ecuador, with Scott, and we’re standing there, and he’s sweating, and I’m like, “So, you like heights as much as I do, huh?” And he’s like, “I hate them.” I said, “You know, the worst part,” because I was leaning up against a railing, because I was doing exposure therapy on myself. And I say, “The worst part is this feeling that starts in your stomach and goes through the whole front of your head and on top of that it’s very intense. And then on top of that, you have this feeling and this impulse to jump off.”
He said, “You have that too?” I was like, “70% of people with a fear of heights have that experience.” It doesn’t make sense. It feels irrational, but it also feels really uncomfortable, and you want to do something to make it go away. And the only thing you’re supposed to do is to just let the feeling be there and not reinforce that part of your brain that’s saying, “You’re going to jump off or somehow magically this balcony’s going to give way or the grocery cart was going to fall into the rainforest.” Good thing I had my seat belt on.
So I also had a very bad flying phobia. Airplanes. Again, understood what my compulsions were. They were when I got on the plane, I had to make sure the plane looked intact. When it took off I had to make sure that the wings were looking like they weren’t going to fall off. I had to listen to the engine to make sure that the engine was still running, and one of the things that really triggered my flying anxiety is that when you’re actually going up in the air about a minute after you take off, they cut the engines back. And I would literally press my feet on the floor as though it was a gas pedal to make the plane go faster.
What I had to do was one, recognize what all of my safety behaviors were, what all my protective behaviors were, which I know they were not going to protect me, but that, again, is the trap that you get in. So you go, “None of this is going to protect me. If the plane’s going down, the plane’s going to go down.” My treatment was to play iPad games and listen to music and just hang out on the plane and let myself get anxious and not try and keep the plane in the air. And I did that over many, many times, and now I have virtually no flying anxiety.
Trevor: Before we get back, just, I’m curious. The blood thing. You didn’t like looking at blood?
Jeff: Oh, right. It wasn’t so much I didn’t like looking at blood. When I looked at blood, I would get light-headed, and I would have intrusive images of having lots of blood and then I would start to worry about, is something going to happen to me? And then I would get light-headed.
Trevor: But was it like the height thing? Did you want to touch it?
Trevor: Did you want to put your face in it? Did you want to do anything like that?
Jeff: No, it was just more images of bleeding out and something physically bad happening to me.
Scott: Do you have nothing like that?
Trevor: I have tons of things like that.
Jeff: Everyone has tons of things like this.
Scott: But do you have something that is your thing where there’s something like, you can’t ... You’ve got blood? Needles. Blood doesn’t bother me at all. Needles. Seeing it go into my arm, seeing it go into someone else’s arm. My aunt’s a nurse, and one time she’s sitting there, and she starts describing something, and I got instantly nauseous and had to leave the room. The things I’ve seen, actually seen in life, some things are very unpleasant, things I wouldn’t want to describe, didn’t bother me at all. But her talking about trying to find a vein, and I was ready to lose my lunch. I was just like, “What is going on here?”
Jeff: Yeah, yeah.
Scott: Do you have something that’s similar to this, where other people ... Because other people, they’re like, “It’s a flu shot. Go and get it.” And I’m like, “Oh, I would rather jump out of a plane than get a flu shot.” I go and get it, but it’s a thing.
Trevor: Yeah. I’m not going to go into it, but yes, definitely.
Jeff: Everyone has something. That’s the thing about simple phobias. At least you’re afraid of snakes, or you’re afraid of spiders. It doesn’t have to be a disorder, if you’re not hanging around snakes and spiders, though, right? Because it’s not interfering with your life.
Now, my mother grew up with a tremendous insect phobia, because when she was seven she stepped on a hornet’s nest, and she was stung over 100 times and almost died. So I remember being a kid, and she’s out back, and she’s screaming like someone’s murdering her, and I go out into the back, and she has a hose, and she’s hosing down a butterfly that’s flying around her head because to her, it was being attacked by the hornets again. But it was reinforced by this history of when she saw a flying insect, that she did all these protective safety behaviors, and the only way she got better over time was if there was a spider in the tub, she didn’t have to kill it, but she had to stay there and hang out with the spider and then my stepfather would come and get the spider.
Trevor: Is that what a lot of these disorders are, is it protective behavior that we’ve locked ourselves into?
Jeff: Anxiety disorders, 100% for sure. I have a feeling that showing up, that I’m not using as information, I’m just saying I don’t like this, anxiety is information you may or may not be in danger. Instead, what happens to people with anxiety disorders is they say, “This feeling is here for a reason. The more intensely it’s here, the more true it must be.” And so they treat their signal as a definite rather than a maybe/maybe not. So then when they respond by saying, “If I’m in danger, I’m going to do these things to protect myself,” you’re teaching that part of your brain, “We have to do this. Ooh, this was dangerous, because we had to protect ourselves.” That’s the cycle that everyone with an anxiety disorder gets into.
Trevor: You wanted to follow up?
Scott: When you’re treating some of these disorders ... Social anxiety’s I think probably one of the more common ones, you tell me if I’m wrong, but I know several people that have struggled with that.
Jeff: Oh, yeah.
Scott: Do you start by saying, if someone’s afraid to go out, if they’re afraid to be around a lot of people, do you start with a couple of people or do you take them into a nightclub and go, “We’re going to ...” What ends up being more effective, or is that case by case, where it’s the shock of everything at once, or do you really ease people into it over time?
Jeff: It’s a collaborative experience with the person seeking treatment. What I always say is, a therapeutic relationship is a therapeutic contract. You’re coming to me saying you have problems in your life and then my job is to have expert strategies to offer you for you to then make choices about whether you want to take that advice or not, just like you go for high blood pressure, and they’re like, “Here are three medications. They all treat high blood pressure. Here are the pros and cons of each. You choose.” And then you go, “Okay, I’ll take this one.” Kind of the same thing.
Do you want to do more of a flooding experience, where that was in the grocery cart over the rainforest? I made a choice to say, “I want to have this experience.” You’re saying, “I don’t want to have the flu, so I’m willing to have this uncomfortable experience.” So you talk with the patient about how much is this interfering with your life, if you were able to reduce your anxiety in this part of your life, what would you then be able to do? What are you losing out on? And really get them connected to how they’re not living their life the way they want to, as a way of generating motivation.
And then you say, “Here are all the kinds of exercises you could do, from small to high, and let’s just try it out.” And it really isn’t a “Figure it out at the front end,” it’s a “What are you willing to do and then let’s do it, and let’s see what happens and then we tweak it from there.”
Trevor: Let’s talk about hoarding.
Jeff: What do you want to know?
Trevor: All of it.
Jeff: Let’s see. Let’s start with hoarding—
Trevor: Notice how I just don’t ask questions. I just bring up topics, and I just look away—
Jeff: You’re just like, “Hoarding,” and then you do “Blue Steel” at me—
Trevor: Yeah, and I just hold out my hand to Scott. “Could I have my check now, please?”
Jeff: He’s doing Blue Steel at me when he says these things. He’s like, “Hoarding,” and then he just stares at me—
Jeff: Hoarding disorder, let’s start with the criteria. Hoarding disorder looks like it’s a disorder of having too much stuff, and that is one of the criteria, but the reason people have too much stuff is because they like stuff too much. So people with hoarding disorder are people that acquire too many things. They have 50 magazine subscriptions. They go to flea markets and buy things that look really cool to them. They might have a use for them, and so they just get in their house and then maybe they have a use and maybe they don’t.
Trevor: Do you see it more in a specific age group?
Jeff: Nope. Again—
Trevor: Or a specific demographic?
Jeff: What’s happening is that ... The dysfunction for people with hoarding disorder is both this acquisition of possessions and then an inability to tolerate the distress of getting rid of those possessions. Those components can start in adolescence. It isn’t full-on hoarding disorder until you have clutter to the degree which it’s interfering with your ability to live in your space.
So in your adolescence and 20s and 30s, you might meet some of the criteria because again, you have all this stuff, but it isn’t crowding you out yet. You start to see people in their 50s and 60s and 70s with these hoarded houses where they’re meeting full criteria for hoarding disorder. But again, it isn’t the clutter. The clutter is a symptom of “Everything is important, everything has a purpose, everything matters.”
Trevor: I’ve always had a gut feeling about hoarding informed by nothing factual or scientific, so this is—
Jeff: So you’re informed? So you’re informed?
Trevor: Yeah, this is really going to—
Scott: Those are the opinions that we value most.
Trevor: Yeah. At least I’m honest about it.
Jeff: It’s like, “I’ve got an opinion, let me tell you about it.”
Trevor: Yeah. Informed by absolutely nothing concrete. But hoarding always sounded to me ... I know this might sound strange, but it almost sounds like a survival tactic. “I may need this one day. I don’t know what, but I may need it in order to ... Da da da.” It’s almost like preparing for an event or a situation. It doesn’t even seem like it has anything to do with the item whatsoever, and so the item comes home, it takes its place, it never moves, but it’s there just in case this event, scenario, or so forth, happens. Is any of that the case?
Jeff: People looked into that. No.
Jeff: It’s not a protective factor. It’s not a “I grew up in a deprived home” factor. It’s not “I grew up in the Depression” factor. I think those are factors for some people to a certain degree. Again, we do some neuroimaging studies, where the dysfunction is in the brains of people with hoarding disorder is different from where it is for OCD. People with hoarding disorder categorize differently than people without hoarding disorder. Everything is so unique that it can’t be filed away, and they don’t like filing things away because then they don’t know where they are. So the reason you see all this clutter that looks disorganized is because they visually categorize and have visual memory of where their items are.
If you go into a dining room that’s overflowing with stuff, and you say, “Find me a blue button,” they know where the blue button is, so the way they process and organize information is different than someone without hoarding disorder. I was helping someone who had lots of paperwork, and I said, “Let’s set up a filing system,” and he decided to agree to it. He would pick up each piece of paper, and he would put one piece of paper in each folder, like he couldn’t categorize the information where you have 10 or 20 pieces of paper in the folder because they were all so unique.
So the function of the behavior isn’t to protect oneself, the function of the behavior is, “I like how I feel when I’m engaged with my possessions,” so it’s more on the impulse—control problem, not the compulsivity problem.
Scott: So it’s not as related to OCD as we probably think it is, is that what you’re saying?
Jeff: What happened in 2013 is that the new version of the Diagnostic and Statistic Manual, called the DSM, came out, and it was the fifth edition, and based on a lot of research—
Trevor: I heard that was a really good edition. That one—
Scott: It was a page-turner.
Trevor: Yeah, that was the one.
Jeff: Yeah, that was a page-turner. It was definitive. No, so what happened is that based on research in the last 20 years, they were looking at how are our diagnostic categories working? Are we really pulling people into the same category that should be? Prior to 2013, hoarding was a subtype of OCD, and people like Gail Steketee and Randy Frost and a number of other people did enough research and clinical work where they had both worked with OCD patients and then started to understand that when they were working with the hoarding subtype of OCD they actually were working with a different group.
And so they started doing enough research where now, in the DSM, OCD is a diagnosis and hoarding disorder is a separate diagnosis. The treatment’s different, the neurobiology is different, the response to treatment is different. You can’t use exposure therapy the same way in OCD as you do in hoarding disorder, because you have to do a lot of retraining folks about one, how to tolerate distress, because it isn’t always about anxiety they’re struggling with. It’s loss, it’s sadness, it’s all kinds of things that they may be struggling with.
And then it’s a lot of skills training about how do you categorize? How do you organize? How do you prioritize? How do you make decisions about not acquiring new information? So, for example, a therapist might go to a store with someone with hoarding disorder. They call them non-shopping shopping trips. They go in, they find something they like, they pick it up, they tell the therapist all the reasons why it’s a lovely possession that they need to have, and then the therapist prompts them to put it down and leave the store without buying it, and really getting them to have confidence in a decision-making about when does it make sense to bring a possession into my house?
What I would say to someone that had too many books is, “You can have as many books in your house as you have bookshelves. As soon as the bookshelves are full, you shouldn’t bring a new book into the house unless you’re willing to get rid of a book.” Those kinds of skills and strategies end up being very helpful with folks.
Trevor: Go ahead.
Scott: Based on what you’re saying, it ends up sounding like ... Maybe I shouldn’t try and draw parallels, but I’ll do it just for the conversation. It sounds almost closer to addiction than it does to anxiety.
Jeff: Yeah, it’s more, again, in that impulsive direction, where they’re looking to feel something more positive rather than doing something to not feel something negative.
Scott: Interesting. And do folks who are struggling with hoarding disorder ... Is it structure, in the end? Where you’re talking about the bookshelves. That, to me, almost ... In my head, I’m hearing structure.
Scott: I’m hearing, they need rules in place, and guidelines, to go, “This is going to help you maintain”?
Jeff: Yes, it’s a skills deficit. The skills deficit is either they weren’t taught it, and/or their brain doesn’t work that way naturally. So you are taking things that either you were taught and seemed intuitive, or you just figured out on your own. I have lots of conversations with my staff. We get inundated by emails all the time, and we’re always trying to find the best strategy for how you organize your emails, because an email will come in to me that I won’t be able to answer for a month. Where do I put that email?
We develop those things just by talking or by trial and error. Someone with hoarding disorder just never learned them. And again, they’re so preoccupied with how nice this object is that it doesn’t occur to them to devise a strategy. A lot of folks with hoarding disorder don’t have a problem with the clutter. It’s people that come into their house that have a problem with it.
Trevor: Is it clutter to them? Is it clutter?
Jeff: No, that’s the issue. It’s not clutter to them. These are all treasured possessions. The best book out there on hoarding disorder is “Buried in Treasures, and that is evocative of the experience of someone with hoarding disorder. They are treasures, they’re not clutter.
Trevor: This may be a reach, but it’s me. Do you think anybody’s trying to build a legacy through all this stuff? Just building something and thinking that they’re going to get to the end and be like, “It’s done,” but it’s never going to end?
Jeff: You know, I don’t hear that. What I hear from folks with hoarding disorder is, “This object has its own unique properties and deserves to be treated well and to be used in some sort of functional way.” I don’t hear lots of legacy stuff, though the other thing I hear, it ends up, for some folks, being a little bit more of a shrine issue.
We see movies, and I think this does happen for some people. A person in their family dies, and they keep their room exactly how it is. Magnify that by someone who has a hard time tolerating distress, and then they have a family member die, and then any object that was associated with that person is extra, extra, extra hard to get rid of, on top of the normal grief and sentimentality that anyone would have. I hear that story more than that they’re trying to build some sort of legacy.
Scott: What I’m hearing from both of you, it sounds like if you marry what you’re both saying we could make an episode of “American Pickers,” because I’m hearing from Jeffrey, talking about people keep acquiring and they think they have a purpose for everything, and Trevor’s talking about the legacy. In some of the episodes that I’ve seen there is some of that, where they’ve got this dream, and they’re building towards something, and it’s really sort of—
Jeff: What I want to say about that, so people get mixed up with collectors and hoarders. You’re talking about collectors. Collectors, though, organize their stuff. If you go into a house it might be cluttered, they might have 400,000 china plates, but they’re organized. They’re displayed. There’s pride in it. You can see the value in it. You’re like, “I don’t like china plates, but I get that this is a collection. It’s nicely displayed. It’s taken care of.” That’s legacy, that’s collection, but that’s not hoarding.
Scott: Would you be willing to talk to my wife about that?
Jeff: I’d see her in an hour. I’ll do a beatdown on her if you need me to.
Scott: We don’t need to ... asking for a quote, “beatdown” from you, but it would be nice if you could just tell her that since I take care of my record collection, it is not hoarding. It is a collection, and it is legitimate.
Jeff: I will absolutely do a beatdown—
Trevor: That’s it for Mindful Things this week, folks.
Scott: Thank you for touching on the collecting thing. It gets really important to understand.
Trevor: Thank you for threatening Scott’s wife with physical harm. That’s very—
Jeff: Absolutely. Absolutely. And it’s public now.
Scott: Hoarding is something I think a lot of people experience and most people probably don’t talk about. I can see there being a lot of shame. We’ve seen it in my own family. When is it hoarding and what steps do you take, as the average person, to try and help someone? Because to me, I traditionally approached it from probably, yeah, an ignorant way, to be like, “Let’s just get rid of this stuff,” and that solves nothing, because the person is still going to be struggling with whatever they’re struggling with. The house is going to be clean, but they’re still trapped.
Trevor: I’ve heard that waiting for them to go into the hospital or going on vacation and then cleaning everything out while they’re gone is the absolute last thing to do, that it will set them off in a way that’s really bad.
Jeff: Right. Here is the problem with the “Hoarders” show, is that it shows that the—
Trevor: The “Hoarders” reality show?
Jeff: -Reality show ... Is that the intervention is to do a clean-out. If you actually watch the show, I’ve watched more of them than I would like, it is pretty traumatic for the person because they’re not in partnership. Now, I also get that if they don’t at least start the de-hoarding process they’re going to lose the house, it’s going to be condemned, it’s a fire hazard, all these kinds of things.
But you know, we work with a group, the Massachusetts Boston Housing Authority. Jesse Edsell-Vetter has developed a program here where they look at what does it cost to do a forced clean-out versus what does it cost to have his team go in and work with someone with hoarding disorder and engage them as a partner in decluttering? And it’s a $20,000 outlay of money versus a $2,000 outlay. It’s $20,000 to do a clean-out, it’s $2,000 to do the intervention
Jeff: The issue is more about helping, again, the person with hoarding disorder typically is not having an issue with their clutter. It’s other people. So you do have to use that as leverage to say, “I am uncomfortable being here. I am uncomfortable visiting you. I would like to come and visit you, but you have to make this a place that is inviting to guests. And I’m worried about you are starting to get violations from housing code and fire marshals and et cetera. You’re getting complaints from your neighbors.”
But again, the solution isn’t to do a clean-out, the solution is to get them to understand that they need treatment and that treatment is helpful and that they can be a partner in the treatment, that the treatment doesn’t have to be done to them forcibly. The absolute worst thing you can do is wait for your loved one to leave the house and then do a clean-out. Absolute worst.
Again, in the way that you’re saying, Scott, you aren’t treating the problem, because if the problem is acquisition and difficulty then getting rid of things, let’s clear out the house, but if we didn’t treat those, if we treated the problem as though the problem was clutter, then we haven’t solved the problem. So what are they going to go do? They’re just going to go and acquire again. So they just re-hoard the house.
Trevor: Do you know what the suicide rates are among people with OCD?
Jeff: You know, it used to be the research was that people with OCD had lower-than-average risk of suicide. There’s some more recent research saying it’s about on par with the general public and other psychiatric disorders. The bigger concern is with a related disorder, so we’ve talked about OCD, a related disorder is hoarding disorder, another related disorder is called body dysmorphic disorder. The suicide rates and suicidal ideation in that population are astronomical. That’s a very worrisome population.
OCD, I assess for it, I’m worried about it, I track it, but it’s not something that, on average, I’m preoccupied with when I’m working with someone with OCD unless they also have comorbid depression. That’s—
Trevor: Could you give me the definition of that again, comorbid depression?
Jeff: Yep. Comorbid ... When we say a psychiatric disorder is comorbid with another, we just mean they’re co-occurring. They’re happening at the same time. You have symptoms of both OCD and you have symptoms that meet criteria for major depression.
When they’re depressed, I’m more worried about suicidality, but straight OCD, unless it’s very severe and it’s been going on for a long time, I typically am not terribly worried about suicidality.
Trevor: What about substance abuse?
Jeff: Yeah, you know, you see that in OCD, and the trick, and there’s a lot of debate about this, the trick with working with people with OCD and substance use disorder is ... They would come to the institute and we would make them more anxious, and so then they would start using substances and then we would say, “We’re not a substance abuse unit. It looks like you should go get your substance use problem taken care of and then come back, and you can access the OCD treatment.”
And so then they’d go into a substance use program and the substance use people don’t know anything about OCD, so while they’re getting treatment for their substance use, they’re not accessing it because they’re engaged in all these time-consuming rituals and compulsions, and so they’re stuck in their room. So they get thrown out of the substance abuse program because they’re not accessing the program, which isn’t true. They’re unable to because they’re so symptomatic with their OCD. So then they come back to an OCD facility.
So there’s this back-and-forth, so there’s a debate in the field now about how we need to be cross-training people in these two fields so that the treatment of choice is looking like it should be, treating both disorders at the same time. And if they relapse in one or the other while they’re getting treatment for one or the other, there needs to be some flexibility and room and response to that that isn’t about discharging, have some other group take care of you.
Trevor: Go ahead.
Scott: You just mentioned folks being trapped in their rooms, engaging in rituals. I didn’t fully understand what that meant until I was sat down with a patient at our own OCD Institute, and he gave us real examples of things that he typically engaged in and was very honest in front of a clinician and said that he was engaged in three of them while we were sitting in that room at the time.
I think it was probably the most upsetting situation I’ve been in since I’ve worked at McLean, because I never quite understood how far that goes. Aside from what people typically think of the handwashing and the cleanliness aspects, would you mind going into a little bit of the kind of things that someone who is trapped in their room could be doing that is completely unrelated to handwashing or whatever the other stereotypical things would be?
Jeff: They’re stereotypical because they’re the most common, so the most common subtype of OCD is a fear of contamination. However, there could be lots of reasons why you get contaminated. “I don’t want to touch that because I’ll get sick. I don’t want to touch that because I would spread that germ and get someone else sick. I don’t want to touch that because I will die from that, whether it’s a germ, perceived germ, whether it’s a perceived chemical. I don’t want to touch that because it’s red, and it might be blood, and I’ll get HIV. I don’t want to touch that because it’s white, and it’s semen, if I touch someone else they might get pregnant. I know how pregnancy works, it’s just what if that happened? I don’t want to talk to this person or touch anything that he’s touched because he doesn’t seem that smart to me, and he’s kind of chubby, and if I touch that, I’m going to be less smart and chubby.”
There’s lots of different ways contamination manifests in OCD. There’s lots of responses to feeling contaminated. It can be washing, it can be washing your hands. It can be washing your body. It can be bleaching your body. It can be bleaching your hands. It can be wearing gloves. It can be washing your hair. It can be washing your ears because you heard something you didn’t want to hear.
Jeff: Oh, yeah. Yeah, there’s lots of different manifestations of this.
Jeff: Not only am I not going to touch things and then I’m going to wash, but then I need to clean things. So I might be in my room, cleaning for hours at a time because I’m trying to clean the perceived contaminants, whatever they might be. So then we have perfectionism. Perfectionism is, “This has to be done the right way. It has to be done perfectly. It has to be done without flaw. I have to sit down and learn this piece of music. I’m not going to get up until I’ve learned the piece of music so that I’m not making mistakes and people that hear it cry.”
The problem with perfectionism in OCD is it suffers from the same thing as obsessiveness and compulsiveness. I am a perfectionist, I like things done a particular way. I don’t have OCD because I like things a certain way but I know when enough is enough. People with OCD, their brains are ... That “Enough is enough” trigger is not happening for them, so it’s never enough for these folks. So that’s perfectionism.
Then you have a group of folks that have intrusive thoughts, whether it’s around sexual things ... “I might be homosexual. I’m straight, I don’t have any problems with homosexuals, or maybe I do, but I don’t want to be homosexual, and I don’t know whether I’m homosexual or not.” And so people become preoccupied with that.
They see a kid and they go, “Oh my god, what if I became attracted to that kid? Am I a pedophile?” They’re not a pedophile. They’re worried that they might be a pedophile. “Are you attracted to kids?” “No, but what if I might be? What if there’s some part of me that is, and I just don’t know it?” That’s the thought process for these folks. So it could be, again, having sex with animals, it could be incest, it could be anything sexual that the person finds super-aversive. Actually, the thing that you are most disgusted by, upset by, is usually what your OCD will tack onto.
So those are sexual obsessions. Now, we also have violent obsessions. “I’m going to stab Trevor in the neck, because I have this image”—
Trevor: He’s tried. He’s tried.
Jeff: “I’m lunging, as we’re speaking.” People with OCD will have that thought. I have that thought, I just go, “Hmm, maybe it’s that Trevor deserves it, but I’m not going to actually stab Trevor.” But people with OCD, “Oh my god, I had that thought. What am I going to do? What if it happens? Am I a terrible person?” So whether it’s “I’m going to stab you” or whether it’s “I’m harming the elderly” or “I’m going to ...” There’s postpartum depression, there’s postpartum OCD. “What if, while I’m bathing my baby, my newborn baby, I drown my baby? What if I drop my baby? What if I want to drop my baby?”
So they go to their pediatrician, they tell them this, and they take their kids away because they don’t know what postpartum OCD is. These are thoughts that they’re having that are not thoughts they want to be having. They’re automatic. They’re intrusive. They don’t identify with them at all, so it’s called ego-dystonic. “These are not thoughts I identify with.” And they go to great lengths to not have the thoughts and to not act on these things. So these are not closeted pedophiles, and they’re not closeted violent people. They are people that this is the most abhorrent thing that they could imagine.
Now, you have a subtype of people that it affects their faith-based religion. This is called scrupulosity. These are the folks that are going into the Catholic Church, and they’re praying, and they’re seeking reassurance, and they’re confessing, and they’re doing all the rituals of Catholicism, not in the way that any other Catholic is practicing them. They’re doing them to the extreme, and the reason they’re doing them to the extreme isn’t to practice their faith, it’s to not engage in a sin, it’s to not go to hell, it’s to not make God angry. So their faith practice has gotten completely skewed by their OCD and infected by their OCD, where it’s all out of fear rather than out of connection and out of getting something emotionally and spiritually from your faith-based practice.
Trevor: I’m not religious anymore, but I was raised in a fear-based religion. That’s all it was based on.
Jeff: Yep. Folks that grow up in that are more susceptible, but just because you grew up in it doesn’t mean you’re going to get that type of OCD either.
Scott: For it to be OCD, any of the things you just described, whether it’s being concerned about being homosexual if you’re straight or drowning a baby or whatever it is, when does it go from a normal concern ... One thing I know is that it’s okay to have thoughts that are unpleasant sometimes, and that is normal—
Jeff: Normal, yep.
Scott: -to have those things go through your head, even though you might not feel comfortable with the occasional thought. When does it turn into a problem?
Jeff: It’s when you ... This is very Catholic, not to beat up on the Catholics, but it’s very Catholic. A thought is the equivalent of a sin. That is kind of how ... That’s the philosophy that people with OCD have bought into. “I am responsible for all the thoughts that my brain puts out,” rather than, “I can choose how I want to respond to that thought.”
So if I have a violent thought towards someone, is it just a random thought? Maybe. Is it that I’m angry with them? Maybe. Is it that I really want to physically be violent towards them? Maybe, maybe not. But again, it’s a ... There’s a flexibility in how you respond to these unwanted and unpleasant thoughts where someone with OCD doesn’t have that flexibility. They have the thought, they have the image, they have the anxiety, they have the, “What am I going to do?” They don’t question it, and then they say, “The only way out of this is to engage in the compulsive behavior, which will give me temporary relief.”
It’s a horrible way to live. That’s the thing. When you really understand—
Trevor: I need to talk to my therapist.
Jeff: In the way that you guys are saying, you independently had these experiences with people with OCD. When it is bad, it is torturous, and it is walking around in the prison that is your own experience. And on top of that, you’re not feeling like anyone’s going to get it, because when we aren’t seeing something through our own lens, our own emotional lens, then we discount it.
If I’m afraid of snakes, but I’m not afraid of spiders, I’m like, “Snakes are dangerous, and spiders are not.” Someone else says, “I’m afraid of spiders, and I’m not afraid of snakes.” Who’s right? Well, it isn’t about being right. It’s about how our brain and how we’re perceiving something, and then what do we want to do in response to it? But anything can be dangerous. I’m sure a lot of people in that grocery cart had a ball. I was petrified.
Trevor: How effective is the program?
Jeff: Treatment of OCD can be very effective. It’s affected by the willingness of the patient to engage in the treatment, it’s affected by their compliance, so they’re sitting in front of their therapist and are like, “I’m engaging in ritualistic behavior, compulsive behavior, right in front of you.” So if they’re not compliant, the treatment doesn’t work. The more they engage in the treatment, the more success they’ll have. Ineffective—
Trevor: It sounds like a lot of it depends on the patient.
Jeff: It depends on the skill of the therapist to help the patient make good choices on their own behalf. I never like to blame patients. It is—
Trevor: I was going to say, that sounds like a very measured response. No offense.
Jeff: Yes, because I never want to blame a patient. If I am terrified every single day, I’m not going to make good decisions. I need a skilled therapist who, one, is showing me the way out verbally and experientially, and has the patience and the skill to help me negotiate with myself to make good choices on my behalf.
But I, as a therapist, this is how I could work with suicidal patients and really ill patients. I am me, and you are you. I am not responsible for your choices. My job, what you hired me to do, is to help you, in a sophisticated way, look at what your options are, but it is your choice. A patient will come in and say, “I feel like I’m a bad patient, and I didn’t do the right thing, and I let you down.” I’m like, “I don’t care. I care about you. I don’t care about your choices. Your choices are your choices. I don’t want to feel guilty about my choices. You make your own choices. You are living your life. I’m not living your life. If you make a bad choice, I’m not bearing the consequence of that. You are, and that sucks for you. So how can we help you make a better choice next time?”
Trevor: We’re about to wrap up. Is there anything you want to know?
Scott: I’ve got one more question for you, Jeff, since I got you here. One thing that’s been made clear, maybe just because more of my friends have children that are of an age, I think, where you’ve started to see symptoms of anxiety in general. Are children more anxious today, or are we getting better at recognizing symptoms of it, or would you say it’s both?
Jeff: I don’t like kids, so I’m not a pediatric person. But here’s what I know about pediatric psychology.
Trevor: That’s the best thing you’ve said so far in this interview.
Jeff: They’re adorable, but they—
Trevor: Now we’re connecting on our hatred of children.
Jeff: They smell, they throw up, they spread germs.
Trevor: I’m with this guy.
Jeff: So here’s the thing. OCD starts in childhood for most people. You see two times in which it starts. It starts around puberty in adolescence, or it starts in late adolescence, early adulthood. Why is it probably happening there? OCD is affected by transitions, by stress. People have a predisposition, maybe neurobiologically. People might have a predisposition genetically. If you have OCD, you have a one in four chance of passing on that neurocircuitry to your kid, and that might put them at risk for developing OCD.
Kids have lots of ritualistic behavior. They like structure, they can be inflexible, so you’re really looking at a negotiation with them over time of, “Why do you need to do that?” and “What is that about?” and “Can we try something else?” There isn’t a hard-and-fast rule to it. What I will say is I’m going to do a bunch of plugs for all of our websites now. If you go to ocdinkids.org, there are lots of articles on this, there are lots of information for kids, for parents, for teachers.
We also have developed ocdinkids.org. Our main site is iocdf.org. That stands for International OCD Foundation. That’s all kinds of information about OCD, that’s all kinds of information about where resources are, where therapists might be near you, intensive programs might be near you, support groups might be near you. We also have a Help for Hoarding website, so all the top people in hoarding disorder helped put all this information together. There’s videos, there’s books, there’s, again, access to hoarding professionals.
And then we have helpforbdd.org. Again, this is a resource for people with body dysmorphic disorder. We didn’t get a chance to touch on that a lot. Body dysmorphic disorder is when someone becomes preoccupied with a perceived flaw in their appearance. We all have that experience. Trevor should have it, Scott should have it, if they don’t. So it isn’t “I don’t like this part of my body.” It is, “I am consumed and preoccupied with this part of my body.”
Trevor: Have fun paying my copays for the next two years. Get me an address to send you the bill.
Jeff: So I become so preoccupied with this flaw that I’m camouflaging it, I’m covering it up, I’m checking it repeatedly, I’m not being social, I might not be going in to my job. It is interfering. It’s a disorder, so it isn’t “I don’t like how I look,” it’s “I don’t like how I look, and I’m so consumed by that that I’m not living my life the way I want to live it.” So helpforbdd.org, tons of resources on that site.
And then in July, Scott is going to be joining me at our annual OCD conference and hoarding meeting that’s held the third week in July each year, somewhere in July. This year it’ll be in Austin, Texas. What’s cool about this conference is that it’s attended by people with OCD and hoarding disorder and body dysmorphic disorder, it’s attended by their friends and family, their parents, it’s attended by therapists, it’s attended by researchers. And not only is it attended by all those audiences, all those audiences are also the presenters. So you can go watch a panel about a BDD therapist talking about providing treatment to that patient who’s onstage with a researcher talking about how they developed the protocol that taught that therapist how to treat that patient, and they’re telling people about it. It’s a really cool conference. So that’s at ocd2019.org.
Trevor: Go ahead.
Scott: I have to say, and not just because Jeff’s here, it’s actually a really great conference. It’s amazing seeing the clinical world come together with the people who essentially live with this, and not just to see them ... Seeing them interact is great enough, but the community of folks who are non-clinicians, it really is a community. People get to know each other and they look forward to seeing each other.
The first year I went, I got to watch it happen from the table I was manning. I was just fascinated by it, because I was like, “I don’t think these folks are clinicians,” and they were clearly not, and then you find out in the end that either they’ve struggled with OCD, their children have, the parents get to know each other, and things like that. It’s really something else. I’ve never seen it in any other aspect of mental health in terms of conferences. Yeah, I would definitely encourage anyone to become part of it.
Jeff: Yeah, so we have programming for kids, elementary school, we have an elementary school room, a middle school room, and a teen room. We have a mentoring program where the teens mentor the middle schoolers. We have all ages that show up, and we had ... Several years ago there were a bunch of kids that showed up, six kids, and they met up, they hit it off, and then the next year they deepened their friendship with each other where they decided, in between conferences, they would start meeting up, and then the parents met each other, and then so these six families all started hanging out together at the conference and in between they were going on family vacations together.
There’s something very powerful about having been so isolated for so long and finding that there’s a community available. So that community is super palpable at the conference.
Trevor: Where do I get a sweater like that?
Jeff: Ireland. You have to go to Ireland.
Trevor: It’s a pretty good sweater.
Jeff: It’s a pretty good sweater.
Scott: It’s a nice sweater.
Jeff: I wear it a lot.
Scott: You’re not going to Ireland, are you, Trevor?
Trevor: No. I go home, and that’s where I go. I’m going to be on vacation next week. Guess where I’m going?
Jeff: Ooh, nice. Nice.
Trevor: Home. And I’m staying there.
Jeff: That’s not a bad thing.
Jeff: Sounds good.
Trevor: It’s going to be great.
Jeff: My next vacation is in Dublin. I’ll pick you up a sweater.
Trevor: Yeah, you will. Yeah, you will. In the meantime, I’ll take your advice and get some body dysmorphia, and you can give me a sweater as a reward. I’d appreciate it. Thank you. Jeff, it was really nice talking to you.
Jeff: You as well. Thank you.
Scott: Thanks, Jeff.
All right. What did you think of that? Jeff’s really fun. He can take a joke. He can certainly give a joke. Really liked having him in here, and I hope you learned a lot. I certainly did. And again, I just want to echo what I said earlier. Anybody suffering from OCD or hoarding, my heart goes out to you. There are resources to help.
The International OCD Foundation, one place to start. Jeff works there, so please, if you feel like you’re suffering, reach out. And if the foundation’s too far away, try and find local resources. Yes, I know, local resources. There’s a lot of places in this world without local resources, and we could debate up and down the values of a therapy session over Skype, but hey, if that’s the resource you have, use it. Thankfully, technology has given people maybe not the best access to mental health resources, but at least some resources, and for those that don’t have access to technology, unfortunately that doesn’t solve the problem for those people who are suffering that don’t have access to technology, but I don’t know. I don’t have an answer for that, but reach out to somebody. Again, call the crisis line, the Samaritans line that I give out at the end of the podcast.
Anyways, we’ll be back in two weeks. One of those weeks I’ll be asleep. Don’t wake me up. Unless you’re my cat who wants food, don’t wake me up. Leave me alone. Let me sleep. I need the sleep. I need all the sleeps. I’ll see you in two weeks.
Thank you for listening to Mindful Things, the official podcast of McLean Hospital. Please subscribe to us and rate us on iTunes or wherever you listen to podcasts. Don’t forget, mental health is everyone’s responsibility. If you or a loved one are in crisis, the Samaritans are available 24 hours a day at 877.870.4673. Again, that’s 877.870.4673.
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The McLean Hospital podcast Mindful Things is intended to provide general information and to help listeners learn about mental health, educational opportunities, and research initiatives. This podcast is not an attempt to practice medicine or to provide specific medical advice.
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