Kimberley: Welcome, everybody. This is a very exciting episode. I know I’m going to learn so much. Today, we have Caitlin Pinciotti and Shala Nicely, and we’re talking about when OCD and PTSD collide and intertwine and how that plays out. This is actually a topic I think we need to talk about more.

Welcome, Caitlin, and welcome, Shala.

Caitlin: Thank you.

Shala: Thanks.

Kimberley: Okay. Let’s first do a little introduction. Caitlin, would you like to go first introducing yourself?

Caitlin: Sure thing. I’m Caitlin Pinciotti. I’m a licensed clinical psychologist and an assistant professor in the Department of Psychiatry and Behavioral Sciences at Baylor College of Medicine. I also serve as a co-chair for the IOCDF Trauma and PTSD and OCD SIG. If people are interested in that special interest group as well, that’s something that’s available and up and running now.

Most of my research specifically focuses on OCD, trauma, and PTSD, and particularly the overlap of these things. That’s been sort of my focus for the last several years. I’m excited to be here and talk more about this topic.

Kimberley: Thank you. You’re doing amazing work. I’ve loved being a part of just watching all of this great research that you’re doing. Shala, would you like to introduce yourself?

Shala: Yes. I’m Shala Nicely. I am a licensed professional counselor, and I specialize in the treatment of OCD and related disorders. I am the author of Is Fred in the Refrigerator?: Taming OCD and Reclaiming My Life, which is my story, and then co-author with Jon Hershfield of Everyday Mindfulness for OCD: Tips, Tricks, and Skills for Living Joyfully. I also produce the Shoulders Back! newsletter. It has tips and resources for taming OCD.

Kimberley: Shoulders Back! was actually the inspiration for this episode. Shala, you recently wrote an article about post-traumatic OCD or how PTSD and OCD collide. Can you tell us about your story, particularly going back to, I think you mentioned, May 2020, and what brought you to write that article?

Shala: Sure, and thank you very much for having Caitlin and me on today because I really appreciate the opportunity to talk about this and to get more information out in the world about this intertwined combination of PTSD and OCD. In May of 2020, I moved to a new house, the house that I’m in now. Of course, we had just started the pandemic, and so everybody was working at home, including me. The house that I moved into was in a brand new neighborhood.

While the houses on this side of me were completed, the houses behind me and on that side were not completed. I didn’t think anything of that when I moved in. But what I moved into was a situation where I was in a construction zone all the time. I was working at home, so there was no escape from it.

One day I was walking behind my house, where most of the houses were in the process of being built and there were no sidewalks. As I was walking down the street, I saw, down at the end of the street, a big forklift come down the street where I was walking with my two little dogs backwards at a really high rate of speed, and the forklift driver seemed to be looking that way, and he was going that way. It happened so fast because he was going so quickly that all of a sudden I realized he was going to hit us, my dogs and me, and there was no place for us to go because we were on the road because there was nowhere else for us to be. I screamed bloody murder, and he heard me. I mean, that’s how loud I screamed, and he stopped. That was not all that pleasant. I was upset. He was not happy. But we moved on. But my brain didn’t move on.

After that incident, what I noticed was I was becoming really hypervigilant in my own house and finding the construction equipment. If I go outside, I tense up just knowing that construction equipment is there. Over time, my sleep started becoming disturbed. I started to have flashbacks and what I call flash-forwards, where I would think about all these horrible things that could happen to me that hadn’t happened to me yet but could. I’d get lost in these violent fantasies of what might happen and what I need to do to prevent that.

I realized that I seemed to be developing symptoms of PTSD. This is where being a therapist was actually quite helpful because I pulled the DSM open one night and I started going through symptoms of PTSD. I’m like, “Oh my gosh, I think I have PTSD.”

I think what happened, because having a forklift driver almost hit you, doesn’t seem like that could possibly cause PTSD. But if you look at my history, I think that created a link in my brain to an accident I was in when I was four where I did almost die, which is when my mom and I were standing on the side of a road, about to cross. We were going to go between two parked cars. My mom and I stepped between two parked cars, and there was a man driving down the road who was legally blind, and he mistook the line of parked cars where we were standing as moving traffic. He plowed into the end of all the parked cars, which of course made them accordion in, and my mom and I were in the middle of that. I was very seriously injured and probably almost died. My mom was, too. Several months in the hospital, all of that.

Of course, at that point—that was 1975—there was no PTSD, because I think— Caitlin, you can correct me—it didn’t become a diagnosis until 1980. I have had symptoms—small, low-level symptoms of PTSD probably on and off most of my life, but so low-level, not diagnosable, and not really causing any sort of problems. But I think what happened in my head was that when that forklift almost hit me, it made my brain think, “Oh my gosh, we’re in that situation again,” because the forklift was huge. It was the same scale to me as an adult as that car that I was crushed between was when I was four. I think my brain just got confused. Because I was stuck with this construction equipment all day long and I didn’t get any break from it, it just made my brain think more and more and more, “Boy, we are really in danger.” Our lives are basically threatened all the time.

That began my journey of figuring out what was going on with me and then also trying to understand why my OCD seemed to be getting worse and jumping in to help because I seemed to get all these compulsions that were designed to keep me safe from this construction equipment. It created a process where I was trying to figure out, "What is this? I’ve got both PTSD now, I’ve got OCD flaring up, how do I deal with this? What do I do?"

The reason why I wanted to write the article for Shoulders Back! and why I asked Caitlin to write it with me was because there just isn’t a lot of information out there about this combination where people have PTSD or some sort of trauma, and then the OCD jumps in to help. Now you’ve got a combination of disorders where you’ve got trauma or PTSD and OCD, and they’re merging together to try to protect you. That’s what they think they’re doing. They’re trying to help you stay safe, but really, what they’re doing is they’re making your life smaller and smaller and smaller.

I wanted to write this article for Shoulders Back! to let people know about my experience so that other people going through this aren’t alone. I wanted to ask Caitlin to write it with me because I wanted an expert in this to talk about what it is, how we treat it, what hope do we have for people who are experiencing this going forward.

THE DIFFERENCE BETWEEN OCD AND PTSD (AND POST-TRAUMATIC OCD)

Kimberley: Thank you for sharing that. I do encourage people; I’ll link in the show notes if they want to go and read the article as well. Caitlin, from a clinical perspective, what was going on for Shala? Can you break down the differences between OCD and PTSD and what’s happening to her?

Caitlin: Sure. First, I want to start by thanking Shala again for sharing that story. I know you and I talked about this one-on-one, but I think really sharing personal stories like that obviously involves a lot of courage and vulnerability. It’s just so helpful for people to hear examples and to really resonate with, “Wow, maybe I’m not so different or so alone. I thought I was the only one who had experiences like this.” I just want to publicly thank you again for writing that blog and being willing to share these really horrible experiences that you had.

In terms of how we would look at this clinically, it’s not uncommon for people to, like Shala described, experience trauma and have these low-level symptoms for a while that don’t really emerge or don’t really reach the threshold of being diagnosable. This can happen, for example, with veterans who return home from war, and it might not be until decades later that they have some sort of significant life event or change. Maybe they’ve retired, or they’re experiencing more stress, or maybe, like Shala, they're experiencing another trauma, and it just brings everything up. This kind of delayed onset of PTSD is, for sure, not abnormal.

In this case, it sounds like, just like Shala described, that her OCD really latched onto the trauma, that she had these experiences that reinforced each other. Right now, I’ve had two experiences where being around moving vehicles has been really dangerous for me.

Just like you said, I think you did such a beautiful job of saying that the OCD and PTSD colluded in a way to keep you “safe.” That’s the function of it. But of course, we know that those things go to the extreme and can make our lives very small and very distressing.

What Shala described about using these compulsions to try to prevent future trauma is something that we see a lot in people who have comorbid OCD and PTSD. We’re doing some research now on the different ways that OCD and trauma can intersect. And that’s something that keeps coming up as people say, “I engaged in these compulsions as a way to try to prevent the trauma from happening to me again or happening to someone else. Or maybe my compulsions gave me a sense of control, predictability, or certainty about something related to the trauma.” This kind of presentation of OCD sort of functioning as protection against trauma or coping with past trauma as well is really common.

STATISTICS OF OCD AND PTSD

Kimberley: Would you share a little bit about the statistics between OCD and PTSD and the overlap?

Caitlin: Absolutely. I’m excited to share this too, because so much of this work is so recent, and I’m hopeful that it’s really going to transform the way that we see the relationships between OCD and PTSD. We know that around 60% of people who have comorbid OCD and PTSD tend to have an experience where PTSD comes first or at the same time, and the OCD comes later. This is sort of that post-traumatic OCD presentation that we’re talking about and that Shala talked about in her article.

For folks who have this presentation where the PTSD comes first and then the OCD comes along afterwards, unfortunately, we see that those folks tend to have more severe obsessions, more severe compulsions. They’re more likely to struggle with suicidality or to have comorbid agoraphobia or panic disorders. Generally speaking, we see a more severe presentation when the OCD comes after the PTSD and trauma, which is likely indicative of what we’re discussing, which is that when the OCD develops as a way to cope with trauma, it takes on a mind of its own and can be really severe because it’s serving multiple functions in that way.

What we’ve been finding in our recent research—and if folks want to participate, the study will still be active for the next month; we’re going to end it at the end of the year, the OCD and Trauma Overlap Study—what we’re finding is that of the folks who’ve participated in the study, 85% of them feel like there’s some sort of overlap between their OCD and trauma. Of course, there are lots of different ways that OCD and trauma can overlap.

I published a paper previously where we found that about 45% of people with severe OCD in a residential program felt that a traumatic or stressful event was the direct cause of their OCD on setting. But beyond that, we know that OCD and trauma can intersect in terms of the content of obsessions, the function of compulsions, as we’ve been talking about here, core fears. Some folks describe this, and Shala described this to this, like cyclical relationship where when one thing gets triggered, the other thing gets triggered too.

This is really where a lot of the research is focusing on now, is how do these things intersect, how often do they intersect, and what does that really look like for people?

Kimberley: Thanks. I found in my practice, for people who have had a traumatic event, as exactly what happened to Shala, and I actually would love for both of you maybe to give some other examples of how this looks for people and how it may be experienced, is let’s say the person that was involved in the traumatic event or that place that the traumatic event was recent that recently was revisited just like Shala. Some of them go to doing safety behaviors around that person, place, or event, or they might just notice an uptick in their compulsions that may have completely nothing to do with that. Shala, can you explain a little bit about how you differentiated between what are PTSD symptoms versus OCD, or do you consider them very, very similar? Can you give some insight into that?

SYMPTOMS OF OCD & PTSD

Shala: Sure. I’ll give some examples of the symptoms of OCD that developed after this PTSD developed, but it’s all post-traumatic OCDs. I consider it to be different from PTSD, but it is merged with PTSD because it’s only there because the PTSD is there.

For instance, I developed a lot of checking behaviors around the doors to my house—staring, touching, not able to just look once before I go to bed, had to be positively sure the doors were locked, which, as somebody who does this for a living, who helps people stop doing these compulsions, created a decent amount of shame for me too, as I’m doing these compulsions and saying, “Why am I not taking my own advice here? Why am I getting stuck doing this?”

But my OCD thought that the construction equipment was outside; we’re inside. We need to make sure it stays outside. The only way we do that is to make sure the door stays locked, which is ridiculous. It’s not as if a forklift is going to drive through my front door. As typical with OCD, the compulsions don’t make a lot of sense, but there’s a loose link there.

Another compulsion that I realized after a time was probably linked with PTSD is my people-pleasing, which I’ve always struggled with. In fact, Kimberley, you and I have done another podcast about people-pleasing, something I’ve worked really hard on over the years, but it really accelerated after this. I eventually figured out that that was a compulsion to keep people liking me so that they wouldn’t attack me. That can be an OCD compulsion all by itself, but it was functioning to help the PTSD.

Those would be two examples of compulsions that could be OCD compulsions on their own, but they would not have been there had the PTSD not been there.

Kimberley: Caitlin, do you want to add anything about that from symptoms or how it might look and be experienced?

Caitlin: Sure, yeah. I think it’s spot on that there’s this element of separation that we can piece apart. This feels a little bit more like OCD; this feels a little bit more like PTSD, but ultimately they’re the same thing, or it’s the same behavior.

In my work, I usually try to, where I can, piece things apart clinically so that we can figure out what we should do with this particular response that you’re having. When it comes to differentiating compulsions, OCD compulsions and PTSD safety behaviors, we can look towards both the presentation of the behavior as well as the function of it.

In terms of presentation, I mean, we all know what compulsions can look like. They can be very rigid. There can be a set of rules that they have to be completed with. They’re often characterized by a lot of doubting, like in Shala’s case, the checking that, “Well, okay, I checked, but I’m not actually sure, so let me check one more time.” Whereas in PTSD, although it’s possible for that to happen, those safety behaviors, usually, it’s a little bit easier to disengage from. Once I feel like I’ve established a sense of safety, then I feel like I can disengage from that. There doesn’t tend to be kind of that like rigidity and a set of rules or magical thinking that comes along with an OCD compulsion.

In terms of the function, and this is where it gets a little bit murky with post-traumatic OCD, broadly speaking, the function of PTSD safety behaviors is to try to prevent trauma from occurring again in the future. Whereas OCD compulsions, generally speaking, are a way to obtain certainty about something or prevent some sort of feared catastrophe related to someone’s obsession. But of course, when the OCD is functioning along with the PTSD to cope with trauma, to prevent future trauma, that gets a little bit murkier.

In my work, like I said, I try to piece apart, are there elements of this that we can try to resist from more of an ERP OCD standpoint? If there’s a set of rules or a specific way that you’re checking the door, maybe we can work on reducing some of that while still having that PTSD perspective of being a little bit more lenient about weaning off safety behaviors over time.

TREATMENT FOR OCD AND PTSD

Kimberley: It’s a perfect segue into us talking about the treatment here. Caitlin, could you maybe share the treatment options for these conditions, specifically post-traumatic OCD, but maybe in general, all three?

Caitlin: Absolutely. The APA, a few years back, reviewed all the available literature on PTSD treatments, and they created this hierarchy of the treatments that have the most evidence base and went down from there. From their review of all the research that’s been done, there were four treatments that emerged as being the most effective for PTSD. That would be broadly cognitive behavioral therapy and cognitive therapy. But then there are two treatments that have been specifically created to target PTSD, and that would be prolonged exposure or PE, and cognitive processing therapy or CBT. These all fall under the umbrella of CBT treatments, but they’re just a little bit more specific in their approach.

And then, of course, we know of ACT and EMDR and these other treatments that folks use as well. Those fall in the second tier, where there’s a lot of evidence that those work for folks as well, but that top tier has the most evidence.

These treatments can be used in combination with OCD treatments like ERP. There are different ways that folks can combine them. They can do full protocols of both. They could borrow aspects of some treatments, or they could choose to focus really on if there’s a very clear primary diagnosis to treat that one first before moving on to the secondary diagnosis.

TREATMENT EXAMPLES FOR POST-TRAUMATIC OCD

Kimberley: Amazing. Shala, if you’re comfortable, can you give some examples of what treatment looked like for you and what that was like for you both having OCD and PTOCD?

Shala: Yes, and I think to set the ground for why the combined treatment working on the PTSD and the OCD together can be so important, a couple of features of how all this was presenting for me was the shift in the focus of the uncertainty. With OCD, it’s all about an intolerance of uncertainty and not knowing whether these what-ifs that OCD is getting stuck on are true or going to happen. But what I noticed when I developed PTSD and then the OCD came in to help was that the focus of the uncertainty shifted to it’s not what if it’s going to happen. The only what-if is when it was going to happen because something bad happening became a given.

The uncertainty shifted to only when and where that bad thing was going to happen, which meant that I had lower insight. I’ve always had pretty good insight into my OCD, even before I got treatment. Many people with OCD too, we know what we’re doing doesn’t make any sense; we just can’t stop doing it.

With this combined presentation, there was a part of me that was saying, “Yeah, I really do need to be staring at the door. This is really important to make sure I keep that construction equipment out.” That lowered insight is a feature of this combined presentation that I think makes the type of treatment that we do more important, because we want to address both of the drivers, both the PTSD and the OCD.

The treatment that I did was in a staged process. First, I had to find a treatment provider, and Caitlin has a wonderful list of evidence-based treatment providers who can provide treatment for both on her website, which is great. I found somebody actually who ended up being on Caitlin’s list and worked with that person, and she wanted to start out doing prolonged exposure, which I pushed back on a little bit. Sometimes when you’re a therapist and you’re being the client, it’s hard not to get in the other person’s chair. But I pushed back on that because I said, “Well, I don’t think I need to do prolonged exposure on the original accident,” because that’s what she was suggesting we do, the accident when I was four. I said, “Because I wrote a book, Is Fred in the Refrigerator? and the very first chapter is the accident,” and I talked all about the accident. She explained, “That’s a little bit different than the way we would do it in prolonged exposure.”

What’s telling, I think, is that when I worked on the audiobook version of Fred—I was doing the narration, I was in a studio, and I had an engineer and a director; they were on one side of the glass, I’m on the other side of the glass—I had a really hard time getting through that first chapter of the book because I kept breaking down. They’d have to stop everything, and I had to get myself together, and we had to start again, and that happened over and over and over again.

Even though I had relived, so to speak, this story on paper, I guess that was the problem. I was still reliving it. That’s probably the right word. Prolonged exposure is what I needed to do because I needed to be able to be in the presence of that story and have it be a story in the past and not something that I was experiencing right then.

I started with prolonged exposure. After I did that, I moved on to cognitive processing therapy because I had a lot of distorted beliefs around life and the trauma that we call “stuck points” in cognitive processing therapy that I needed to work through. There were a good 20 or so stuck-point beliefs. “If I don’t treat people perfectly nicely, they’re going to attack me somehow.” Things that could be related directly to the compulsions, but also just things like, “The world is dangerous. If I’m not vigilant all the time, something bad is going to happen to me.” I had to work on reframing all of those because I was living my life based on those beliefs, which was keeping the trauma going.

I recreated a new set of beliefs and then brought exposure in to work on doing exposures that helped me act as if those new beliefs were the right way to live. If my stuck point is I need to be hypervigilant because of the way something bad is going to happen to me, and I’m walking around like this, which was not an exaggeration of really how I was living my life when this was all happening—if I’m living like that, if I’m acting in a hypervigilant way, I am reinforcing these beliefs. I need to go do exposures where I can walk by a dump truck without all the hypervigilance to let all that tension go, walk by it, realize what I’ve learned, and walk by it again.

It was a combination of all these and making sure that I was doing these exposures, both to stop the compulsions I was doing, like the door checking, but also to start living in a different way so that I wasn’t in my approach to life, reinforcing the fact that my PTSD thought the world was dangerous.

I also incorporated some DBT (dialectical behavior therapy) because what I found with this combination was I was experiencing a lot more intense emotions than I’d really ever experienced in having OCD by itself. With OCD, it was mostly just out-of-this-world anxiety, but with the combination of PTSD and OCD, there were a lot more emotional swings of all sorts of different kinds that I needed to learn and had to deal with.

Part of that too was just learning how to be in the presence of these PTSD symptoms, which are very physiological. Not like OCD symptoms aren’t, but they tend to be somewhat more extreme, almost panicky-like feelings. When you’re in the flashbacks or flash forwards, you can feel dissociated, and you’re numbing out and all of that.

I'm learning to be in the presence of those symptoms without reacting negatively to them, because if I’m having some sort of feelings of hypervigilance that are coming because I’m near a piece of construction equipment and I haven’t practiced my ERP (Expsoure & Response Prevention) for a while, if I react negatively and say, “Oh my gosh, I shouldn’t be having these symptoms. I’ve done my therapy. I shouldn’t be having these feelings right now,” it’s just going to make it worse.

Really, a lot of this work on the emotional side was learning how to just be with the feelings. If I have symptoms, because they happen every now and then—if I have symptoms, then I’m accepting them. I’m not making them worse by a negative reaction to the reaction my PTSD is having.

That was a lot of the tail end of the work, was learning how to be okay with the fact that sometimes you’re going to have some PTSD symptoms, and that’s okay. But overreacting to them is going to make it worse.

Kimberley: Thank you so much for sharing that. I just want to maybe clarify for those who are listening. You talked about CPT, you talked about DBT, and you also talked about prolonged exposure. In the prolonged exposure, you were exposing yourself to the dump truck? Is that correct?

Shala: In the prolonged exposure, I was doing two different things. One is the story of the accident that I was in. Going back to that accident that I thought I had fully habituated to through writing my book and doing all that, I had to learn how to be in the presence of that story without reliving it while seeing it as something that happened to me, but it’s not happening to me right now. That was the imaginal part of the prolonged exposure.

This is where the overlap between the disorders and the treatment can get confusing of what is part of what. You can do the in vivo exposure part of prolonged exposure. Those can also look a lot like just ERP for OCD, where we’re going and we’re standing beside a dump truck and dropping the hypervigilant safety behaviors because we need to be able to do that to prove to our brain we can tolerate being in this environment. It isn’t a dangerous environment to stand by a jump truck. It’s not what happened when I was four. Those are the two parts that we’re looking at there—the imaginal exposure, which is the story, and then we’ve got the in vivo exposures, which are going back and being in the presence of triggers, and also from an OCD perspective without compulsive safety behaviors.

Kimberley: Amazing. What I would clarify, but please any of you jump in just for the listeners, if this is all new to you, what we’re not saying is, let’s say if there was someone who was abusive to you as a child, that you would then expose yourself to them for the sake of getting better from your PTSD. I think the decisions you made on what to expose yourself were done with a therapist, Shala? They helped you make those decisions based on what was helpful and effective for you? Do either of you want to speak to what we do and what we don’t expose ourselves to in prolonged exposure?

Caitlin: Yeah. I’m glad that you’re clarifying that too, because this is a big part of PE that is actually a little bit different from ERP. When somebody has experienced trauma, when they have PTSD, their internal alarm system just goes haywire. Just like in Shala’s example, anything that serves as a reminder or a trigger of the trauma, the brain just automatically interprets as this thing is dangerous; I have to get away from it.

In PE, a lot of what we’re doing is helping people to recalibrate that internal alarm system so that they can better learn or relearn safe versus actual threat. When you’re developing a hierarchy with someone in PE, you might have very explicit conversations about how safe is this exposure really, because we never want to put someone in a situation where they would be unsafe, such as, like you described, interacting with an abuser.

In ERP, we’d probably be less likely to go through the exposures and say, “This one’s actually safe; I want you to do it,” because so much of the treatment is about tolerating uncertainty about feared outcomes. But in PE, we might have these explicit conversations. “Do other people you know do this activity or go to this place in town?” There are probably construction sites that wouldn’t be safe for Shala to go to. They’d be objectively dangerous, and we’d never have her go and do things that would put her in harm’s way.

Kimberley: Thank you. I just wanted to clarify on that, particularly for folks who are hearing this for the first time. I’m so grateful that we’re having this conversation again. I think it’s going to be so eye-opening for people. Caitlin, can you share any final words for the listeners? What resources would you encourage them to listen to? Is there anything that you feel we missed in our conversation today for the listeners?

Caitlin: I think, generally, I like to always leave on a note of hope. Again, I’m so grateful that Shala is here and gets to describe her experience with such vulnerability because it gives hope that you can hear about someone who was at their worst, and maybe things felt hopeless in that moment. But she was able to access the help that she needed and use the tools that she had from her own training too, which helped, and really move through this.

There isn’t sort of a final point where it’s like, “Okay, cool, I’m done. The trauma is never going to bother me again.” But it doesn’t have to have that grip on your life any longer, and you don’t need to rely on OCD to keep you safe from trauma.

There are treatments out there that work. Like it was mentioned, I have a directory of OCD and PTSD treatment providers available on my website, which is www.cmpinciotti.com that folks can access if they’re looking for a therapist. If you’re a therapist listening and you believe that you belong in this directory, there’s a way to reach out to me through the website.

I’d also say too that if folks are willing and interested, participating in the research that’s happening right now really helps us to understand OCD and PTSD better so that we can better support people. If you’re interested in participating in the OCD and trauma study that I mentioned, you can email me at OCDTraumaStudy@bcm.edu.

I also have another study that’s more recent that will help to answer the question of how many people with OCD have experienced trauma and what are those more commonly endorsed ways that people feel that OCD and trauma intersect for them. That one’s ultra-brief. It’s a 10-minute really quick survey, NationalOCDSurvey@bcm.edu and I’m happy to share that anonymous link with you as well/

Kimberley: Thank you. Thank you so much. Shala, can you share any final words about your experience or what you want the listeners to hear?

Shala: One thing I’d like to share is a mistake that I made as part of my recovery that I would love for other people not to make. I’d like to talk a little bit about that, because I think it could be helpful. The mistake that I made in trying to be a good client, a good therapy client, is I was micro-monitoring my recovery. “How many PTSD symptoms am I having? Well, I’m still having symptoms.” I woke up in the middle of the night in a panic, or I had a bad dream, or I had a flash forward. “Why am I having this? I must not be doing things right.”

And then I took it a step further and said, “It would be great if I could track the physiological markers of my PTSD so I can make sure I’m keeping them under control.” I got a piece of tracking technology that enabled me to track heart rate and heart rate variability and sleep and all this stuff. At first, it was okay, but then the technology that I was using changed their algorithm, and all of a sudden my stats weren’t good anymore, and I started freaking out. “Oh my gosh, my sleep is bad. My atrophy is going down. This is bad. What am I doing?” I was trying with the best of intentions to quantify, make sure I’m doing things right, focus on recovery. But what I was doing was focusing on the remaining symptoms that were there, and I was making them worse.

What I have learned is that eventually, things got so bad—in fact, with my sleep—that I got so frustrated with the tracking technology. I said, “I’m not wearing it anymore.” That’s one of the things that helped me realize what I was doing. When I stopped tracking my sleep, when I let go of all of this and said, “You know what? I’m going to have symptoms,” things got better.

I would encourage people not to overthink their recovery, not to be in their heads and wake up in the morning and ask, “How much PTSD am I having? How much OCD am I having? If I could just get rid of these last little symptoms, life would be great,” because that’s just going to keep everything going.

I’ll say this year, two has been a challenging one for me. I’ve been involved in three car accidents this year; none of them my fault. One of my neighbors, whom I don’t know, called the police on me, thinking I was breaking into my own house, which meant that a whole army of police officers ended up at my house at nine o’clock at night. That’s four pretty hard trauma triggers for me in 2023.

Those kinds of things are going to happen to all of us every now and then. I had a lot of symptoms. I had a lot of PTSD symptoms and a lot of OCD symptoms in the wake of those events, and that’s okay. It’s not that I want them to be there, but that’s just my brain reacting. That’s my brain trying to come to terms with what happened and how safe we are and trying to get back to a level playing field.

I think it’s really important for anybody else out there who’s suffering from one or the other, or both of these disorders to recognize we’re going to have symptoms sometimes. Just like with OCD, you’re going to have symptoms sometimes. It’s okay. It’s the pushing away. It’s the rejecting of the symptoms. It’s the shaming yourself for having the symptoms that causes the symptoms to get worse.

Really, there is an element of self-compassion for OCD here. I like having bracelets to remind me. This is the self-compassion bracelet that I’ve had for years that I wear. By the way, this is not the tracking technology. I’m not using tracking technology anymore. But remembering self-compassion and telling yourself, “I’m having symptoms right now, and this is really hard. I’m anxious; I feel a little bit hypervigilant, but this is part of recovery from PTOCD. Most people with PTOCD experience this at some point. So I’m going to give myself a break, give myself permission to feel what I’m feeling, recognize how much progress I’ve made, and, when I feel ready, do some of my therapy homework to help me move past this, but in a nonhypervigilant, nonmicro monitoring way.”

As I have dropped down into acceptance of these symptoms, my symptoms have gotten a lot better. I think that’s a really important takeaway. Yes, we want to work hard in our therapy, yes, we want to do the homework, but we also want to work on accepting because, in the acceptance, we learn that having these symptoms sometimes is just a part of life, and it’s okay.

I would echo what Caitlin said in that you can have a ton of hope if you have these disorders, in that we have good treatment. Sometimes it takes a little bit longer than working on either one or the other, but that makes sense because you’re working on two. But we have good treatment, and you can get back to living a joyful life.

Always have hope and don’t give up, because sometimes it can be a long road, especially when you have a combined presentation. But you can tame both of these disorders and reclaim your life.

Kimberle: You guys are so good. I’m so grateful we got to do this. I feel like it’s such an important conversation, and both of you bring such wonderful expertise and lived experience. I’m so grateful. Thank you both for coming on and talking about this with me today. I’m so grateful.

Shala: Thank you for having us.

Caitlin: Yes, thank you. This was wonderful.

Kimberley: Thank you so much, guys.

RESOURCES:

The two studies CAITLIN referenced are:

OCD/Trauma Overlap Study: An anonymous online survey for any adult who has ever experienced trauma, and can be accessed at https://bcmpsych.sjc1.qualtrics.com/jfe/form/SV_0j4ULJv3DxUaKtE or by emailing OCDTraumaStudy@bcm.edu

National OCD Survey: An anonymous 10-minute online survey for any U.S. adult who has ever had OCD, and can be accessed at https://bcmpsych.sjc1.qualtrics.com/jfe/form/SV_9LdbaR2yrj0oV7g or by emailing NationalOCDSurvey@bcm.edu

Grief : Nurturing the Living at the Moment of Death