Can I Get Cancered After Treatment for OCD?

In this episode, we are talking about the emotional toll of OCD. 

Kim: Welcome back, everybody. This week is going to include three of some of my most favorite people on this entire planet. We have the amazing Chris Trondsen, Alegra Kastens, and Jessica Serber—all dear friends of mine—on the podcast. This is the first time I’ve done an episode with more than one guest. 

Now, this was actually a presentation that the four of us did at multiple IOCDF conferences. It was a highly requested topic. We were talking a lot about trauma and OCD, shame and OCD, the stigma of OCD, guilt and OCD, and the depression and grief that goes with OCD. After we presented it, it actually got accepted to multiple different conferences, so we all agreed, after doing it multiple times and having such an amazing turnout, that we should re-record the entire conversation and have it on the podcast.

I’m so grateful for the three of them. They all actually join me on Super Bowl Sunday—I might add—to record this episode. I am going to really encourage you to drop down into your vulnerable self and listen to what they have to say, and note the validation and acknowledgment that they give throughout the episode. It is a deep breath. That’s what this episode is. 

Before we get into this show, let me just remind you again that we are recording live the Overcoming Depression course this weekend. On March 11th, March 18th, and March 25th, at 9:00 AM Pacific Standard Time, I will be recording the Overcoming Depression course. I am doing it live this time. If you’re interested in coming on live as I record it, you can ask your questions, you can work along with me. There’ll be workbooks. I’ll be giving you a lot of strategies and a lot of tools to help you overcome depression. 

If you’re interested, go to CBTSchool.com/depression. We will be meeting again, three dates in March, starting tomorrow, the 11th of March, at 9:00 AM Pacific Time. You will need to sign up ahead of time. But if for any reason you miss one of them, you can watch the replay. The replays will be uploaded. You’ll have unlimited on-demand access to any of them. You’ll get to hear me answering people’s questions. This is the first time I’ve ever recorded a course live. I really felt it was so important to do it live because I knew people would have questions and I wanted to address them step by step in a manageable, bite-sized way. Again, CBTSchool.com/depression, and I will see you there. Let’s get over to this incredible episode. 

Again, thank you, Chris Trondsen. Thank you, Alegra Kastens. Thank you, Jessica Serber. It is an honor to call you my friend and my colleague. Enjoy everybody. 

Kim: Welcome. This has been long, long. I’ve been waiting so long to do this and I’m so thrilled. This is my first time having multiple guests at once. I have three amazing guests. I’m going to let them introduce themselves. Jessica, would you like to go first?

Jessica: I’m Jessica Serber. I’m a licensed marriage and family therapist, and I have a practice specializing in the treatment of OCD and related anxiety and obsessive-compulsive spectrum disorders in Los Angeles. I’m super passionate about working with OCD because my sister has OCD and I saw her get her life back through treatment. So, I have so much hope for everyone in this treatment process.

Kim: Fantastic. So happy to have you. Chris?

Chris: Hi everyone. My name is Chris Trondsen. I am also a licensed marriage family therapist here in Orange County, California at a private group practice. Besides being a therapist, I also have OCD myself and body dysmorphic disorder, both of which I specialize in treatment. Because of that, I’m passionate about advocacy. I am one of the lead advocates for the International OCD Foundation, as well as on their board and the board of OCD Southern California, as well as some leadership on some of their special interest groups. Kind of full circle for me, have OCD and now treat it.

Kim: Amazing. Alegra?

Alegra: My name is Alegra Kastens and I am a licensed therapist in the states of California and New York. I’m the founder of the Center for OCD, Anxiety and Eating Disorders. Like Chris, I have lived experience with OCD, anxiety, eating disorders, and basically everything, so I’m very passionate. We got a lot going on up here. I’m really passionate about treating OCD, educating, advocating for the disorder, and that is what propelled me to pursue a career as a therapist and then also to build my online platform, @obsessivelyeverafter on Instagram.

GRIEF AND OCD

Kim: Amazing. We have done this presentation before, actually, multiple times over the years. I feel like an area that I want to drop into as deeply as we can today to really look at the emotional toll of having and experiencing and recovering from OCD. We’re going to have a real conversation style here. But first, we’ll follow the format that we’ve used in the past. Let’s first talk about grief and OCD because I think that that seems to be a lot of the reason we all came together to present on this. Alegra, would you talk specifically about some of the losses that result from having OCD? I know this actually was inspired by an Instagram post that you had put out on Instagram, so do you want to share a little bit about what those emotional losses are? 

Alegra: For sure. I think that number one, what a lot of people with OCD experience is what feels like a loss of identity. When OCD really attacks your values, attacks your core as a human being, whether it’s pedophile obsession, sexual orientation obsessions, harm obsessions, you really start to grieve the person that you once thought you were. Of course, nothing has actually changed about you, but because of OCD, it really feels like it has. In addition to identity, there’s lost relationships, there’s lost time, lost experiences. For me, I dropped out of my bachelor’s degree and I didn’t get the four years of undergrad that a lot of people experienced. I mean, living with OCD is one of the most debilitating, difficult things to do. And that means, if you’re fighting this battle and trying to survive, you probably are missing out on life and developmental milestones.

Kim: Right. Was that the case for you too, Chris?

Chris: Yeah. I actually host a free support group for families and one of the persons with OCD was speaking yesterday talking about how having OCD was single-handedly the most negatively impactful experience in his life. He is dealt with a lot of loss. I feel the same way. It’s just not something you could shake off and recover from in the sense of just pretending nothing happened. I know for me, the grief was hard. I mean, I had mapped out what I thought my life was going to look like. I think my first stage of grief, because I think it became two stages, my first, like Alegra said, was about the loss. I always wanted to go to college and be around people in my senior year, like make friends and things like that. It’s just my life became smaller and smaller. I became housebound. I missed out on normal activities, and six years of my life were pretty much spent alone. 

I think what Alegra also alluded to, which was the second layer of grief, was less about the things that I lost, but who I became. I didn’t recognize myself in those years with OCD. I think it’s hard to explain to somebody else what it’s like to literally not live as yourself. I let things happen to me or I did things that I would never do in the mind state that I am in now. I was always such a brave and go-for-it kind of person and confident and I just became a shell of myself. I grieve a lot of the years lost, a lot of the things I always wanted to do, and places I wanted to go. And then I grieve the person I became because it was nothing I ever thought I could become.

Kim: Jessica, will you speak also to just the events that people miss out on? I don’t know if you want to speak about what you see with your clients or even with your sibling, like just the milestones that they missed and the events they missed.

Jessica: Yeah, absolutely. My sister was really struggling the most with her OCD during middle school and high school. Those are such formative years, to begin with. I would say, she was on the fortunate end of the spectrum of being diagnosed relatively early on in her life. I mean, she definitely had symptoms from a very, very young age, but still, getting that diagnosis in middle school is so much before a lot of people get that. I mean, I work with people who aren’t diagnosed until their twenties, thirties, and sometimes even later. Different things that most adolescents would go through she didn’t. 

Speaking to the identity piece that Alegra brought up, a big part of her identity was being a sports fan. She was a diehard Clippers fan, and that’s how everyone knew her. It was like her claim to fame. She didn’t even want to go to Clippers games. My dad was trying to get tickets to try to get her excited about something to get out of the house. She missed certain events in high school because it was too anxiety-provoking to go and it was more comforting to know she could stay in the safety of the home. Their experiences all throughout the lifespan, I think that can be impacted. Even if you’re not missing out on them entirely, a lot of people talk about remembering those experiences as tainted by the memories of OCD, even if they got to go experience them.

Kim: Right. For me, as a clinician, I often hear two things. One is the client will say something to the likes of, “I’ve lost my way. I was going in this direction and I’ve completely lost the path I was supposed to go on.” I think that is a full grief process. I think we’ve associated grief with the death of people, but it’s not. It’s deeper than that and it’s about like you’re talking about, identity and events and occasions. 

The other thing that I hear is—actually, we can go totally off script here in terms of we’ve talked about this in the past separately—people think that once they’re recovered, they will live a really happy life and that they’ll feel happy now. Like, “Oh, the relief is here, I’ve recovered.”  But I think there is a whole stage of grief that follows during recovery and then after recovery. Do you have any thoughts on that, anybody? 

Alegra: Well, yeah. I think it reminds me a lot of even my own experience, but my client’s experiences of when you recover, there tends to be grief about life before OCD. If I’m being perfectly honest, my life will just never be what it was before OCD, and it’s different and wonderful in so many ways that maybe it wouldn’t be if I didn’t have OCD. But I’m laughing because when you were like, “I’m going to mark my calendar in July because you’re probably going to have a relapse,” then I have to deal with it every six months. My brain just goes off for like two weeks. I don’t know why it happens. It’s just my OCD brain, and there’s grief associated with that. I can go for six months and I have some intrusive thoughts, but it doesn’t really do anything to me to write back in it for two weeks. That’s something I have to deal with and I have to get to that acceptance place in the grieving process. I’m not going to have the brain that I did before OCD when I didn’t have a single unwanted sexual thought. That just isn’t happening. I think we think that we’re going to get to this place after recovery, and it’s like game over, I forget everything that happened in the past, but we have to remember that OCD can be traumatizing for people. Trauma is stored in the body. The brain is impacted and I think that we can carry that with us afterwards.

Kim: Right.

Chris: Yeah. I mean, everything that Alegra was saying—I’ll never forget. I always joke, but I thought when treatment was done, rainbows were going to shoot out and butterflies. I was going to jump on my very own unicorn and ride off to the sunset. But it was like a bomb had gone off and I had survived the blast, but everything around me was completely pulverized. I just remember thinking, what do I do now? I remember going on social media to look up some of my friends from high school because my OCD got really, really bad after high school. I just remember everybody was starting to date or marry or travel and move on and I’m like, “Great, I live in my grandma’s basement. I don’t have anything on my calendar. I’m not dating, I don’t have any friends. What do I do?” I was just completely like, “Okay, I don’t even know where to begin.” I felt so lost. Anything I did just didn’t feel right. Like Alegra said, there was so much aftermath that I had to deal with. I had to deal with the fact that I was lost and confused and I was angry and I had all these emotions. I had these memories of just driving around. 

As part of my OCD, I had multiple subtypes—sexual intrusive thoughts, harm thoughts. I remember contamination, stores around me would get dirty, so I’d be driving hours to buy products from non-dirty stores at 4:00 or 5:00 in the morning, crying outside of a store because they were closed or didn’t have the product I need, getting home and then my checking would kick in. You left something at the store, driving back. You just put yourself through all these different things that are just not what you would ever experience. 

I see it with my clients. One client sticks in mind who was in his eighties and after treatment, getting better. He wasn’t happy and he is like, “I’m so happy, Chris. You helped me put OCD in remission. But I now realize that I never got married because I was scared of change. I never left the house that I hated in the city I didn’t really like because I was afraid of what would happen if I moved.” He’s like, “I basically lived my OCD according to OCD’S rules and I’m just really depressed about that.” I know we’re going to talk about the positive sides and how to heal in the second half, but this is just really what OCD can ravish on our lives.

Kim: Right. 

Jessica: If I can add one thing too really quickly, something I really think is a common experience too is that once healing happens, even if people do get certain parts of their lives back and feel like they can function again in the ways that they want to, there’s always this sense of foreboding joy, that it feels good and I’m happy, but I’m just waiting for the other shoe to drop all the time. Or what if I go back to how I was and I lose all my progress? Even when there are those periods of joy and happiness and fulfillment, they might also be accompanied with some anxiety and some what-ifs. Of course, we can work on that and should work on that in treatment too because we want to maximize those periods of joy as much as we can. But that’s something that I commonly see, that the anxiety sticks around just in different ways.

OCD, SHAME, & GUILT

Kim: Yeah, for sure. I see that very commonly too. Let’s talk now about OCD, shame, and guilt. I’ll actually go straight to you, Jessica, because I remember you speaking about this beautifully. Can you explain the difference between shame and guilt specifically related to how it may show up with OCD? 

Jessica: Yeah. I mean, they’re definitely related feelings but they are different. I think the simplest way to define the difference is guilt says, “I did something bad,” whereas shame says, “I am bad.” Shame is really an identity-based emotion and we see a lot of shame with any theme of OCD. It can show up in lots of different ways, but definitely with some of the themes that are typically classified as Pure O—the sexual intrusive thoughts or unwanted harm thoughts, scrupulosity, blasphemous thoughts. There can be a lot of shame around a person really identifying with their thoughts and what it means about them. Attaching that, meaning about what it means about them. And then of course, there can also be guilt, which I think feels terrible as well, but it’s like a shame light where it’s like, “I did something wrong by having this thought,” or just guilt for maybe something that they’ve thought or a compulsion that they’ve done because of their OCD. 

Kim: Yeah. I’ve actually also experienced a lot of clients saying they feel guilty because of the impact their OCD has had on their loved ones too. They’re suffering to the biggest degree, but they’re also carrying the guilt of like, “I’ve caused suffering to my family,” or “I’m a financial burden to my parents with the therapy and the psychiatrist.” I think that there’s that secondary guilt that shows up for a lot of people as well, which we can clump in as an outcome or a consequence or an experience of having OCD.

Chris: Yeah. I mean, right before you said this, Kim, I was thinking for me personally, that was literally what I was going to say. I have a younger sister. She’s a couple of years younger than me and I just put her through hell. She was one of the first people that just felt the OCD’s wrath because I was so stressed out. She and I shared a lot of the same spaces in the home, so we’d have a lot of fights. Also, when I was younger, because she looks nothing like me—she actually looks more like you, Kim, blonde hair, blue eyes—people didn’t know we were related. People would always say things like, “Oh, is that your girlfriend?” So then I’d have a lot of ancestral intrusive thoughts that caused a lot of harm to me, so I’d get mad at her. Because I was young, I didn’t know better. And then just the hell I put my mom through. 

I always think about just like, wow, once again, that’s not who Chris is. I would jump in front of eight bullets for both my mom and my sister. I remember one time I needed something because I felt dirty, and my mom hit our spending money so that if there was an emergency. My sister knew where it was and she wouldn’t give it to me. I remember taking a lighter and lighting it and being like, “I’ll burn your hair if you don’t give me the money,” because I was so desperate to buy it because that’s how intense the OCD was. I remember she and I talking about that and it just feels like a different human. Once again, it’s more than just guilt. It’s shame of who I had become because of it and not even recognizing the boy I was now compared to the man I am now, way than man now.

OCD AND ANGER

Kim: One thing we haven’t talked a lot about, but Chris, you just spoke to it, and I’ve actually been thinking about this a lot. Let’s talk about OCD and anger because I think that is another emotional toll of OCD. A lot of clients I’ve had—even just recently, I’ve been thinking about this a lot—sometimes instead of doing compulsions, they have an anger outburst or maybe as well as compulsions. Does anyone want to speak to those waves of frustration and anger that go around these thoughts that we have or intrusive whatever obsessions in any way, but in addition, the compulsions you feel you have to do when you have OCD?

Alegra: I feel like sometimes there can be maybe a deeper, more painful emotion that’s underneath that anger, which can be shame or it can be guilt, but it feels like anger is maybe easier to express. But also, there just is inherent anger that comes up with having to live with this. I remember one time in my own personal therapy, my therapist was trying to relate and she pulled out this picture that she had like an, I don’t know, eight-year-old client with OCD and was like, “She taps herself a lot.” I screamed at her at that moment. I was like, “Put that fucking picture away, and don’t ever show that to me again. I do not want to be compared to an eight-year-old who taps himself, like I will tap myself all day fucking long, so long as I don’t have these sexually unwanted thoughts about children.” I was so angry at that moment because it just felt like what I was dealing with was so much more taboo and shameful. I was angry a lot of the time. I don’t think we can answer the question of, why? Why did I have to experience this? Why did someone else not have to experience this? And that anger is valid. 

The other thing that I want to add is that anger does not necessarily mean that we are now going to act on our obsessions because I think clients get very afraid of that. I remember one time I was so fucking pissed at my coworker. He was obnoxious when I worked in PR, and I was so mad at him, I had to walk outside and regulate. And then instantly, of course, my brain went, “You want his kid to die?” or whatever it was. I felt like, oh my God, I must really want this to happen because I’m mad at him. In terms of anger, we can both feel angry and not align with unwanted thoughts that arise.

CAN OCD CAUSE ANGER ISSUES? 

Kim: Right. OCD can attack the emotions that you experience, like turn it back on you. It’s funny, I was doing a little bit of research for this and I typed in ‘OCD in anger.’ I was looking to see what was out there. What was so fascinating to me is, you know when you type something in on Google, it shows all of the other things that are commonly typed in. At the very top was ‘Can OCD cause anger issues?’ I was like, that is so interesting, that obviously, loved ones or people with OCD are searching for this because it’s so normal, I think, to have a large degree of just absolute rage over what you’ve been through, how much you’ve suffered, just the torment and what’s been lost, as we’ve already talked about. I just thought that was really fascinating to see, that that’s obviously something that people are struggling with. 

Chris: When you think about it, when we’re struggling with OCD, the parts of our brain that are trying to protect us are on fire or on high alert. If you always think about that, I always think of a feral dog. If you’re trying to get him help, then he starts to bite. That’s how I honestly felt. My anger was mostly before I was diagnosed, and once again, like I said, breaking things at home, screaming, yelling at my family, intimidating them, and stuff. I know that once again, that wasn’t who I am at the course. When I finally got a diagnosis, I know for me, the anger dissipated. I was still angry, but the outbursts and the rage, and I think the saddest thing I hear from a lot of my clients is they tell me, I think people think I’m this selfish and spoiled and bratty and angry person. I’m not. I just cannot get a break. 

I always remind parents that as your loved one or spouses, et cetera—as your loved one gets better, that anger will subside. It won’t vanish, it won’t disappear, it may change into different emotions, like Alegra was saying, to guilt and to shame and loss of identity. But that rage a lot of times is because we just don’t know what to do and we feel attacked constantly with OCD. 

Kim: Yeah.

Jessica: I also want to validate the piece that anger is a really natural and normal stage of grief. I like that you’re differentiating, Chris, between the rage that a lot of people experience in it versus maybe just a different type of anger that can show up after when you recognize how—I think, Alegra, you brought up—we can’t answer the question of, why did this happen to me? Or “I missed out on all these times or years of my life that I can’t get back.” Anger is not a problem. It’s not an issue when it shows up like that. It’s actually a very healthy natural part of grief. We want to obviously process it in ways that really honor that feeling and tend to that feeling in a helpful way. I just wanted to point out that part as well.

DO YOU CONSIDER HAVING OCD A TRAUMATIC EVENT?   

Kim: Yeah, very, very helpful. This is for everybody and you can chime in, but I wanted to just get a poll even. Alegra spoke on this a little bit already. Do you consider having OCD a traumatic event?

Alegra: A hundred thousand percent. I’m obviously not going to trauma dump on all of you all, but boy, would I love to. I have had quite a few of what’s classified as big T traumas, which I even hate the differentiation of big T, sexual assault, abuse, whatever. I have had quite a bit of big T traumas and I have to say that OCD has been the most traumatizing thing I have been through and I think we’ll ever go through. It bothers me how much I think gatekeeping can happen in our community. Like, no, it’s only trauma if you’ve been assaulted, it’s only trauma if X, Y, and Z. I have a lot of big T trauma and I’m here to say that OCD hands down, like I would go through all of that big T trauma 15 times over to not have OCD, 100%. I think Chris can just add cherries to the cake, whatever that phrase is.

Chris: Yeah. This is actually how the title, the Emotional Toll of OCD, came about. We had really talked about this. I was really inspired mainly by Alegra talking about the trauma of OCD and I was like, finally, someone put the right word because I always felt that other words didn’t really speak to my personal experience and the experience I see with clients. We had submitted it for a talk and it got denied. I remember they liked it so much that they literally had a meeting with you and I, Kim, and we’re like, “We actually really love this. We just got to figure out a way to change it.” Like Alegra was saying, a lot of the people that were part of a trauma special interest group just said, “Look, we can’t be using the word ‘trauma’ like this.” But we had a good talk about it. It’s like, I do believe it’s trauma.

I always feel weird talking about him because sometimes he listens to my stuff, but still, I’ll say it anyways. But my dad will hopefully be the first to admit it. But there were a lot of physical altercations between he and I that were inappropriate—physical abuse, emotional abuse, yelling, screaming. Like Alegra said, I would relive that tenfold than go through the depths of my OCD again where I attempted suicide, where I isolated, where I didn’t even recognize myself. 

If ‘trauma’ isn’t the correct word, we only watered it down to emotional toll just to make DSM-5 folks happy. But if ‘trauma’ isn’t the word, I don’t know what is, because like I said, trauma was okay to describe the pain I went through childhood, but in my personal experience, it failed in comparison to the trauma that I went through with OCD. 

Alegra: I also want to add something. Maybe I’m wrong, but if I’m thinking about the DSM definition, I think it’s defining post-traumatic stress disorder. I don’t think it’s describing trauma specifically. Maybe I’m wrong, but it’s criteria for PTSD. I will be the first to say and none of you have to agree. I think that you can have PTSD from living with OCD. DSM-wise diagnostically, you can’t. But I think when people are like, “Well, that’s not the definition of trauma in the DSM,” no, they’re defining PTSD. It’s like, yeah, some people have anxiety and don’t have an anxiety disorder. You can experience trauma and not have full-blown PTSD. That’s my understanding of it.

Kim: Yeah. It’s funny because I don’t have OCD, so I am an observer to it. What I think is really interesting is I can be an observer to someone who’s been through, like you’ve talked about, a physical assault or a sexual assault and so forth, and they may report I’m having memories of the event and wake up with the physiology of my heart beating and thoughts racing. But then I’ll have clients with OCD who will have these vivid memories of having to wash their hands and the absolute chaos of, “I can’t touch this. Oh my God, please don’t splash the water on me,” Memories of that and nightmares of that and those physiological experiences. They’re remembering the events that they felt so controlled and so stuck in. That’s where for me, I was, with Chris, really advocating for. These moments imprint our brain right in such a deep way.

Alegra: Yeah. I’m reading this book, not to tell everyone to buy this book, but it’s by Dr. Bruce Perry and he does a bunch of research on trauma and the brain. Basically, the way that he describes it is like when we experience something and it gets associated. Let’s say, for instance, there are stores that I could go to and I could still feel that very visceral feeling that I did when I was suffering. Part of that is how trauma is stored in the brain. Even if you logically know I’m not in that experience now, I’m not in the war zone or I’m not in the depths of my OCD suffering, just the store, let’s say, being processed through the lower part of your brain can bring up all of those associations. So, it does do something to the brain.

Kim: Right. 

Chris: Absolutely. I was part of a documentary and it was the first time I went back to the home that I had attempted suicide, and the police got called the hospital and all that. It was a bad choice. They didn’t push me into it. It was my idea because I haven’t gone back there, had no clue how I’d react and I broke down. I mean, broke down in a dry heaving way that I never knew I could and we had to stop filming and we left. Where I was at my worst of OCD was there and also at my grandma’s house because that’s where I moved right after the suicide attempt. I’d have people around me, and still going down to the basement area that I lived in. It is very hard. I rarely do it. So, I have a reaction. To me, it was like, if that isn’t once again trauma, I don’t know what is.

Alegra: It is. 

Chris: Exactly. I’ll never forget there was a woman that was part of a support group I ran. She was in her seventies and she had gone through cancer twice. I remember her telling the group that she’s like, “I’ll go through cancer a third time before I’ll ever go back to my worst of OCD.” Obviously, we’re not downplaying these other experiences—PTSD, trauma, cancer, horrible things, abuse, et cetera. What we’re saying is that OCD takes a lasting imprint and it’s something that I have not been able to shake. I’ve done so much advocacy, so much therapy, so much as a therapist and I don’t still struggle, but the havoc it has on my life, that’s something I think is going to be imprinted for life.

Alegra: Forever.

Jessica: Also, part of the definition of trauma is having a life-threatening experience. What you’re speaking to, Chris, you had a suicide attempt during that time. Suicidality is common with OCD. Suicidal ideation, it’s changing your life. I think Alegra, you said, “I’ll never have the life or the brain that I had before OCD.” These things that maybe it’s not, well, some of them are actually about real confrontation with death, but these real life-changing, life-altering experiences that potentially also drive some people to have thoughts or feelings about wanting to not be alive anymore. I just think that element is there.

Alegra: That’s so brilliant, Jessica, because that is so true. If we’re thinking about it being life-threatening and life-altering, it was life-threatening for me. I got to the point where I was like, “If something doesn’t change, I will kill myself. I will.” That is life-threatening to a person. I would be driving on the freeway like, “Do I just turn the car? Do I just turn it now? Because I was so just fucking done with what was happening in my brain.”

Kim: It feels crisis.

Alegra: Yeah.

Kim: It’s like you’re experiencing a crisis in that moment, and I think that that’s absolutely valid.

Alegra: It’s an extended crisis. For me, it was a crisis of three to four years. I never had a break. Not when I was sleeping. I mean, never.

Chris: I was just going to add that I hear in session almost daily, people are like, “If I just don’t wake up tomorrow, I’m fine. I’d never do anything, but if I just don’t wake up tomorrow, I’m fine.” We know this is the norm. The DSM talks about 50% of individuals with OCD have suicidal ideation, 25% will attempt. This is what people are going through as they enter treatment or before treatment. They just feel like, “If I just don’t wake up or if something were to happen to me, I’d actually be at peace with it.” It’s a really alarming number.

THE EMOTIONAL TOLL OF OCD TREATMENT

Kim: Right. Let’s move. I love everything that you guys are saying and I feel like we’ve really acknowledged the emotional toll really, the many ways that it universally impacts a person emotionally and in all areas of their lives. I’m wondering if you guys could each, one at a time or bounce it off each other, share what you believe are some core ways in which we can manage these emotional tolls, bruises left, or scars left from having OCD? Jessica, do you want to go first? 

Jessica: Sure. I guess the first thing that comes to mind is—I’ll speak from the therapist perspective—if you’re a therapist specializing in treating OCD, make sure you leave room to talk about these feelings that we’re bringing up. Of course, doing ERP and doing all of the things to treat OCD is paramount and we want to do that first and foremost if possible. But if you’re not also leaving room for your client to process this grief, process through and challenge their shame, just hold space for the anger and maybe talk about it. Let your client have that anger experience in a safe space. We’re missing a huge, huge part of that person’s healing if we’re leaving that out. Maybe I’ll piggyback on what you two say, but that’s just the baseline that I wanted to put out there.

Chris: I could go next. I would say the first thing is what Jess said. We have to treat the whole person. I think it’s great when a client’s Y-BOCS score has gone down and symptomology is not a daily impact. However, all the things that we talked about, we aren’t unicorns. This is what many of our clients are going through and there has to be space for the therapist to validate, to address, and to help heal. I would say the biggest thing that I believe moves you past where we’ve been talking about is re-identity formation. We just don’t recognize until you get better how nearly every single decision we make is based off of our OCD fears, that some way or another, what we listen to, how we speak, what direction we drive, what we buy. I mean, everything we do is, will the OCD be okay with this? Will this harm me, et cetera? 

One of the things I do with all my clients before I complete treatment is I start to help them figure out who they are. I say, “Let’s knock everything we know. What are the parts of yourself that you organically feel are you and you love? Let’s flourish those. Let’s water those. Let’s help those grow. What are some other things that you would be doing if OCD hadn’t completely ransacked your life? Do you spend time with family? Are you somebody that wants to give back to communities? What things do you like to do when you’re alone?” I help clients and it was something I did after my own treatment, like re-fall in love and be impressed with yourself and start to rebuild.

I tell clients, one of the things that helped me flip it and I try to do it with them is instead of looking at it like, “This is hard, this is tough,” look at it as an opportunity. We get to take that pause, reconnect with ourselves and start to go in a direction that is absolutely going to move as far away from the OCD selves as possible, but also to go to the direction of who we are. Obviously, for me, becoming a therapist and advocate is what’s helped me heal, and not everybody will go that route. But when they’re five months, six months, a year after the hard part of their treatment and they’re doing the things they always picture they could do and reconnecting with the people that they love, I start to see their light grow again and the OCD starts to fade. That’s really the goal. 

Alegra: I think something that I’ll add—again, I don’t want to be the controversial one, but maybe I will be—is there might be, yes. Can I get canceled after this in the community? There might be some kind of trauma work that somebody might need to do after OCD treatment, after symptoms are managed, and this is where we need to find nuance. Obviously, treatments like EMDR are not evidence-based for OCD, but if somebody has been really traumatized by OCD, maybe there is some kind of somatic experience, some kind of EMDR, or some kind of whatever it might be to really help work on that emotional impact that might still be affecting the person. It’s important of course to find a therapist who understands OCD, who isn’t reassuring you and you’re falling back into your symptoms. But I have had clients successfully go through trauma therapy for the emotional impact OCD had and said it was tremendously helpful. That might be something to consider as well. If you do all the behavioral work and you still feel like, “I am really in the trenches emotionally,” we might need to add something else in.

Chris: I actually don’t think that’s controversial, Alegra. I think that what you’re speaking--

Alegra: I don’t either, but a lot of clinicians do.

Jessica: No, I agree. I think a lot of people will, and it’s been a part of my recovery. I don’t talk about a lot for that very reason. But after I was done with treatment, I didn’t feel like I needed an OCD therapist anymore. I was doing extremely well, but all the emotions we’d been talking about, I was still experiencing. I found a clinician nearby because I was going on a four-hour round trip for treatment. I just couldn’t go back to my therapist because of that. She actually worked with a lot of people that lost their lifestyle because of gambling. I went to her and I said, “What really spoke to me is how you help people rebuild their lives. I don’t need to talk about OCD. If I need to, I’ll go back to my old therapist. I need to figure out how to rebuild my life.” That’s really what she did. She helped me work through a lot of the trauma with my dad and even got my dad to come to a session and work through that. We worked through living in the closet for my sexual orientation for so long and how hard coming out was because I came out while I was in the midst of OCD. It was a pretty horrible coming out experience. She helped me really work through that, work through the time lost and feeling behind my peers and I felt like a whole person leaving. I decided, as a clinician, I have to do that for my clients. I can’t let my clients leave like I felt I left. It was no foul to my therapist. We just didn’t talk about these other things. 

Now what I’ll say as a clinician is, if I’m working with a client and I feel like I could be the one to help them, I’ll keep them with me. I also know my limitations. Like Alegra was saying, if they had the OCD went down so other traumas came to surface and they’ve dealt with molestation or something like that, I know my limitations, but what I will make sure to do is refer to a clinician that I think can help them because once again, I think treating the whole client is so important. 

Kim: Yeah. There’s two things I’ll bring up in addition because I agree with everything you’re saying. I don’t think it’s controversial. In fact, I often will say to my staff who see a lot of my clients, we want to either be doing, like Jessica said, some of the processing as we go or really offer after ERPs. “Do you need more support in this process of going back to the person you want?” That’s a second level of treatment that I think can be super beautiful. As you’re going too with exposures and so forth, you’re asking yourself those questions like, what do I value? Take away OCD, what would I do? A lot of times, people are like, “I have no idea. I have really no idea,” like Chris then. I think that you can do it during treatment. You can also do it after, whichever feels best for you and your clinician. 

The other thing that I find shows up for my patients the most is they’ll bring up the shame and the guilt, or they’ll bring up the anger, they’ll bring up the grief. And then there’s this heavy layer of some judgment for having it. There’s this heavy layer as if they don’t deserve to have these emotions. Probably, the thing I say the most is, “It makes complete sense that you feel that way.” I think that we have to remember that. That every emotion that is so strong and almost dysregulating, it makes complete sense that you feel that way given what you’re going through. 

I would just additionally say, be super compassionate and non-judgmental for these emotional waves that you’re going to have to ride. I mean, think about the grief. This is the other thing. We don’t go in and then process the grief and then often you’re running. It’s a wave. It’s a process. It’s a journey. It’s going to keep coming and going. I think it’s this readjustment on our thinking, like this is the life goal, the long-term practice now. It’s not a one-and-done. Do you guys have thoughts?

Jessica: I think as clinicians, validating that these are absolutely normal experiences and you deserve to be feeling this way is important because I think that sometimes, I don’t think there’s ill intent, but clinicians might gaslight their clients in a certain way by saying, “This isn’t traumatic. This is not trauma. You can feel sad, but it is absolutely not a trauma,” and not validating that for a person can be really painful. I think as clinicians, we need to be open to the emotional impact that OCD has on a person and validate that so we’re not sitting there saying, “Sorry, you can’t use that word. This is not your experience. You can be sad, you can be whatever, but it’s not trauma,” because I have seen that happen.

Kim: Or a clinician saying, “It’s not grief because no one died.”

Jessica: Yeah. It was just hard. That was it. Get over it. 

Kim: Or look at how far you’ve come. Even that, it’s a positive thing to say. It’s a positive thing to say, but I think what we’re all saying is, very much, it makes complete sense. What were you going to say, Jessica? Sorry.

Jessica: No. I just wanted to point out this one nuance that I see come up and that I think is important to catch, which is that sometimes there can be grief or shame or all these emotions that we’re talking about, but sometimes those emotions can also become the compulsion themselves at times. Shala Nicely has a really, really good article about this, about how depression itself can become a compulsion, or I’ve seen clients engage in what I refer to as stewing in guilt or excessive guilt or self-punishment. What we want to differentiate is, punishing yourself by stewing in guilt is actually providing some form of covert reassurance about the obsessions. Sometimes we need to process the true emotional experiences that are happening as a result of OCD, but we also want to make sure that we’re on the lookout for self-punishment compulsions and things like that that can mask, or I don’t know. That can come out in response to those feelings, but ultimately are feeding the OCD still. I just wanted to point out that nuance, that if someone feels like, “I’m doing all this processing of my feelings with my therapist, but I’m not getting any better or I’m actually feeling worse,” we want to look at, is there a sneaky compulsion happening there? 

Chris: I was just going to quickly add two things. One, I think what you were saying, Kim, with your clients, I see all the time. “I shouldn’t feel this way. It’s not okay for me to feel this way. There’s people out there that are going through bigger traumas.” For some reason, I feel society gives a hierarchy of like, “Oh, if you’re going through this you can grieve for this much, but we’re going to grief police you if you’re going through this. That’s much down here.” So, my clients will feel guilty. My brother lost an arm when he was younger. How dare I feel bad about the time lost with OCD? I always tell my clients, there’s no such thing as grief police and your experience is yours. We don’t need to compare or contrast it to others because society already does that.

And then second, I’m going to throw in a little plug for Kim. I feel as a clinician, it’s my responsibility to keep absorbing things that I think will help my client. Your book that really talks about the self-compassion component, I read that from cover to cover. One thing that I’ve used when we’re dealing with this with my clients is saying like, “We got to change our internal voice. Your internal voice has been one that’s been frightened, small, scared, angry for so long. We got to change that internal voice to one that roots for you that has you get up each day and tackle the day.” If a client is sitting there saying that they shouldn’t feel okay, I always ask them, “What kind of voice would you use to your younger brother or sister that you feel protective about? Would you knock down their experience? No, you would hold that space for them. What if we did that for you? It may feel odd, but this is something that I feel you need at this time.” Typically, when they start using a more self-compassionate tone, they start to feel like they’re healing. So, that’s something that we got to make sure they’re doing as well.

OCD AND DEPRESSION

Kim: Yeah. Thank you for saying that. One thing we haven’t touched on, and I will just quickly bring it up too, is I think secondary depression is a normal part of having OCD as well and is a part of the emotional toll. Sometimes either that depression can impact your ability to recover, or once you’ve gone through treatment, you’re still not hopeful about the future. You’re still feeling hopeless and helpless about the way the world is and the way that your brain functions in certain stresses. I would say if that is the case, also don’t be afraid to bring up to your clinician. Like, I actually am concerned. I might have some depression if they haven’t picked up on it. Because as clinicians, we know there’s an emotional toll, we forget to assess for depression. That’s something else just to consider.

Chris: Yeah. I’m a stats nerd and I think it’s 68% of the DSM, people with OCD have a depressive disorder, and 76% have an anxiety disorder. I always wonder, how can you have OCD and not be depressed? I was extremely depressed when my OCD was going on, and I think it’s because of how it ravishes your life and takes you away from the things you care about the most. And then the things that would make you happy to get you out of the depression, obviously, you can’t do. I will say the nice thing is, typically, what I see, whether it’s through medication or not medication, but the treatment itself—what I see is that as people get better from OCD, if their depression did come from having OCD, a lot of it lifts, especially as they start to re-engage in life.

Kim: All right. I’m looking at the time and I am loving everything you say. I’d love if you could each go around, tell us where we can hear more about you. If there’s any final word that you want to say, I’m more than happy for you to take the mic. Jessica?

Jessica: I’ll start. I think I said in the introduction, but I have a private practice in Los Angeles. It’s called Mindful CBT California. My website is MindfulCBTCalifornia.com. You can find some blogs and a contact page for me there. I hope to see a lot of you at the IOCDF conference this year. I love attending those, so I’ll be there. That’s it for me.

Kim: Chris?

Alegra: Like I said, if you’re in the Southern California area, make sure to check out OCD SoCal. I am on the board of that or the International OCD Foundation, I’m on the board. I’m always connected at events through that. You can find me on my social media, which is just my name, @ChrisTrondsen. I currently work at the Gateway Institute in Orange County, California, so you can definitely find me there. My email is just my name, ChrisTrondsen@GatewayOCD.com. I would say the final thought that I want to leave, first and foremost, is just what I hope you got from this podcast is that all those other mixed bags of emotions that you’re experiencing are normal. We just want to normalize that for you, and make sure as you’re going through your recovery journey that you and your clinician address them, because I feel much more like a whole person because I was able to address those. You’re not alone. Hopefully, you got from that you’re not alone.

Kim: Alegra?

Alegra: You can find me @obsessivelyeverafter on Instagram. I also have a website, AlegraKastens.com, where you can find my contact info. You can find my Ask Alegra workshop series that I do once a month. I also just started a podcast called Sad Girls Who Read, so you can find me there with my co-host Erin Kommor, who also has OCD. My final words would probably be, I know we talked about a lot of really dark stuff today and how painful OCD can be, but it absolutely can get so much better. I would say that I am 95% better than I was when I first started suffering. It’s brilliant and it’s beautiful, and I never thought that would be the case. Yes, you’ll hear from me in July, Kim, but other than that, I feel like I do have a very-- Kim’s like, “Oh, will I?”

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Kim: I’ve scheduled you in.

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Alegra: She’s like, “I have seven months to prep for this.” But other than that, I would say that my life is like, I never would’ve dreamed that I could be here, so it is really possible.

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Kim: Yeah.

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Chris: Amen. Of that.

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Kim: Yeah. Thank you all so much. This has been so meaningful for me to have you guys on. I’m really grateful for your time and your advocacy. Thank you.

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Chris: Thanks, Kim. Thanks for having us. 

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Alegra: Thanks, Kim.

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