We Can Do Hard Things with Glennon Doyle - The Truth of OCD: Therapist Alegra Kastens on Living with Obsessive Compulsive Disorder

Episode Date: May 2, 2024

306. The Truth of OCD: Therapist Alegra Kastens on Living with Obsessive Compulsive Disorder Therapist Alegra Kastens shares the truth about her lived experience with Obsessive-Compulsive Disorder (OCD) that is vital for all of us to understand. Detailing her own struggle, and work as an OCD specialist, Alegra helps demystify the relentless cycle of ego-dystonic, intrusive thoughts, anxiety, and compulsions that define this often-misunderstood and under-diagnosed disorder – sharing why so many people have OCD and do not know it, and ways to support people with OCD without enabling and reinforcing the compulsions. CW: Discussion of intrusive sexual and violent thoughts as well as suicidal ideation. About Alegra: Alegra Kastens is a licensed therapist, OCD specialist, writer, and the founder of the Center for OCD, Anxiety, and Eating Disorders in New York City. Fueled by lived experience with a lesser-known manifestation of OCD, education and advocacy about OCD are at the forefront of her career. IG: @AlegraKastens TikTok: @AlegraKastens To learn more about listener data and our privacy practices visit: https://www.audacyinc.com/privacy-policy Learn more about your ad choices. Visit https://podcastchoices.com/adchoices

Hello, Pod Squad. Today is an important episode and a special one to me. We do want to let you know that we're going to talk about some very hard things related to obsessive compulsive disorder, including discussion of intrusive sexual and violent thoughts, as well as suicidal ideation. We're giving this content warning so that if you're not in a place to hear this discussion, please skip today and come back next time. Otherwise, please join us. There are a lot of folks who need to hear these things discussed because they may believe

they're the only ones struggling with these thoughts and hearing that they're not alone could save lives. Every one of us also needs to be reminded that we are not our thoughts. Yeah. Yeah. Yeah. Yeah.

Yeah. Yeah. Yeah. Yeah. Yeah. Yeah. Yeah. Yeah.

Welcome to We Can Do Hard Things. Yes. I love you and you. Oh. Both of you. Thank you. I was thinking about that this morning. Thank you. and you, both of you. Thank you. I was thinking about that this morning. Thank you. So I wanted to tell you.

And I love doing this podcast and I love the Pod Squad. And I am freely looking forward to the conversation today. I feel like it's really a special one already. It's sister, her name is Amanda, and she has been demanding this episode for a very long time. And so this is going to be largely her baby. I am so excited for our guest today. Sister is, I think she's going to help us shepherd this one through. So sister, I'm gonna turn this over to you. Okay, thank you, G.

I truly do believe that the conversation we're about to have will save lives and I'm very thankful to be a part of it. Today we are talking about OCD, Obsessive Compulsive Disorder, which affects one in 50 people in the United States, yet takes 10 to 15 years to get diagnosed on average. I started to learn about this for personal reasons to understand and support someone

that I love. And we're going to hear so much today for anyone who has OCD or who loves someone with OCD or who loves someone with OCD. And yet there is this huge overarching truth from the OCD community's wisdom that every single person needs to hear and understand and let sink into your body. And that is this, you are not your thoughts. You are not your thoughts. And since you are not your thoughts, you cannot necessarily trust your thoughts.

So each of us gets to figure out what is the me beyond my thoughts that I can really trust. And I believe that the more that we can move towards that, the freer that we will all be of the shame and the self hate that is keeping us half dead. So this is for the people in the OCD community and it is also for all of us. I want to give a heads up today that we're going to talk about some really hard things.

I believe Allegra Castens is among the bravest people that we have had on We Can Do Our Things. Truth. My definition of brave is your commitment to showing up to your mission and Allegra's mission is to tell the truth of her own personal health that she walked through to help set other people free from theirs even before the rest of the world is ready to understand it. And her commitment is real and you're gonna hear that today. In order that we can get into a place of understanding, I would love to start with a kind of woo woo exercise, which is something I thought a lot about when

I was learning more about OCD. And I would love to start with everyone, each of us listening to this wherever you are, to imagine the most horrendous or terrifying thought you've ever had. Maybe it's the one about someone you love the most. It's the one that you will never tell anyone. The one that stunned you and scared you about yourself that you would even think it. The one that you know everyone would not love you or like you if they knew. Now imagine that one terrifying thought bombards you all day, every day. Imagine what you would believe that meant about who you are.

Imagine how alone you would feel, how terrified you'd be that anyone would find out. Imagine the unrelenting hell that it would be to live inside of that torment. You are not a monster for your most horrendous, terrifying thought, whether you've had it once or whether you have it all day, every day. The only difference is the way your brain is wired.

is the way your brain is wired. Okay, well, I want to just welcome you, Allegra. Allegra Castens is a licensed therapist, OCD specialist writer and the founder of the Center for OCD Anxiety and Eating Disorders in New York City. Fueled by lived experience with a lesser known manifestation of OCD, education and fueled by lived experience with a lesser known manifestation of OCD, education and advocacy about OCD are at the forefront of her career. Allegra is a mental health content creator for her platform at Allegra Castans on Instagram and TikTok. Welcome, Allegra. Thank you for being here.

Thank you for having me. I'm so excited and honored. Allegra, can we start with some just basic general baseline understanding of what OCD is and is not? It's not a personality trait. It is a medical condition. It is a debilitating disorder that keeps your mind stuck in this cycle of intrusive thoughts, anxiety and compulsions. Can you walk us through that cycle of how OCD works in the brain?

Absolutely. So what I always like to say is OCD is a noun. It's not an adjective. A lot of the time we hear people say, I'm so OCD, I'm so quirky, I'm organized, I really like to clean. And that's not what OCD is. So it's a noun, it's a mental health condition. And there's kind of two pieces of it. There's the obsessions component, which is repetitive, unwanted, intrusive thoughts and images. And then the compulsions component,

which is repetitive physical or mental acts that a person feels compelled to carry out in response to the obsession. When we think about obsessions, we commonly think about contamination obsessions. That is the most publicized. The media talks about it the most. But that is actually the smallest sliver of obsessional content when it comes to OCD.

A lot of people with OCD have obsessions surrounding sex, violence, blasphemy, sensory motor obsessions, like hyper awareness of automatic bodily functions, existential obsessions. So contamination concerns really makes up the smallest portion, but that tends to be what we hear about the most. And so what happens is the person has this obsession, this doubt. It's kind of like pathological doubt. They're getting relentless intrusive thoughts that are ego dystonic.

That's a really important word when it comes to OCD. Ego dystonic means the thoughts are opposite to your values, your self-concept, your beliefs. You do not align with the thoughts, but you just can't stop thinking it. All day long, your brain is bombarding you with it. Causes a lot of anxiety and discomfort, guilt, shame, and then you feel the urge to do something, whether it's a physical act like compulsive sanitizing or a mental act like ruminating,

to neutralize the obsession, to reassure yourself of something, to solve this obsession, to get rid of it. And while that might work temporarily, you might get five to 10 minutes of relief. It ultimately just reinforces that obsession to the brain. It tells your brain, this obsession is actually very dangerous. We must pay attention to it.

And then it also tells your brain, the only way that you are gonna cope with this is to keep performing compulsions. And you are stuck in that endless cycle of obsession, anxiety, compulsion back to the obsession. And it just gets bigger and bigger and bigger. This was so important for me to understand because before I learned anything about this, I thought it's, you know, OCD equals the repetitive.

Rituals. So, you know, the locking of the doors, the turning on the lights, all of those things. And I thought it was about the lights and the doors. And I did not know that those rituals are based on a need to relieve the anxiety associated with the underlying fear or thought. The doors and the lights and all of that is the tip of the iceberg. But the iceberg are these thoughts all day long that you're trying to alleviate by doing the action. Absolutely. You're trying to resolve doubt or alleviate discomfort or get rid of the thoughts. And like the locks and the doors are really just the tip of the iceberg when it comes to compulsions. Like one of the reasons that I didn't know I had OCD for so long is because none of my compulsions were physical. Nobody would ever look at me and assume that I have OCD because all of the

obsessions and compulsions happened in my mind. So that's another misconception is that we'll always see someone with OCD. They'll be checking the lock 15 times. They'll be sanitizing. And that just is very inaccurate. And this is the one, this is Pure O? Is that what that it's like colloquially named? Yes, it's like a nickname. Okay. And so all parts of the cycle are inside your brain. So you don't see anything outside. That's exactly it. Yeah. Everything is mental. So puro is really just a nickname for obsessions without observable compulsions. So they're mental compulsions.

It's still OCD at the end of the day, but so many people don't understand that. And that's why so many people get misdiagnosed or just live huge chunks of their life, not knowing that they have OCD. So the word obsession, so that just means intrusive thoughts. So as a person who's obsessed with language,

I'm trying to figure out if I just introduced an OCD expert by saying I'm obsessed with her. Did I do that? I think I did do that. And if so, is obsessed a word that we should stop using offhandedly? Is it like OCD in terms of like, we don't say I'm a little OCD

because we like to keep our kitchen clean. And is obsession a word like that in terms of like softening our language and making sure we're telling the truth about things? Yes. So it technically would be helpful. Now, I still say sometimes I'm obsessed with my dogs or whatever it might be. Not good to get publicly canceled for this. But

technically speaking, in psychological terms, an obsession is unwanted, it's distressing. So when we hear people say things like I'm obsessed with my dogs, if I then go out and say like I have Unwanted sexual obsessions people who don't understand OCD might think wow, she's really obsessed with sex with dogs That is not at all the case Obsessions psychologically are like unwanted Repetitive thoughts. Okay, so that's an intrusive thought. Is that yes. Okay. Can you talk to us about like what an intrusive thought is?

Yes. So we all get intrusive thoughts first and foremost. I loved that exercise you did, Amanda. Everybody has had an odd thought where you just think to yourself like, what the fuck was that? Why am I capable of? It's like, could I fuck my dog or could I push someone in front of the subway? It's just like what, but most people are able to move on from that thought. For people with OCD, what tends to happen for a variety of different reasons,

and we don't know the exact cause, that thought gets stuck, and the person experiences it repetitively, like over and over and over again. And then that often leads to what is known as obsessional doubt. So it's really like pathological doubt. Like you get the thought so much that it can contribute to you doubting what you know about yourself,

which is exactly what happened for me. I had a rapid onset at age 19. I had this one thought that I say like broke my brain. And after that, it was literally like 24 seven intrusive thoughts my brain. And after that, it was literally like 24 seven intrusive thoughts that then made me doubt who I was because of that. And that's where that like obsessional doubt comes into play and the compulsions performed to try to resolve the doubts. But an intrusive thought is really just like a thought that pops in that is scary and unwanted. Okay. So this is the, you know, we've all had the fleeting thought of, well, I'm outing myself here. Like I could just, I, if I just like push that person in front of the train, what would, oh my God. Like I would do. So the difference between that being a coming

in and going out versus a repetitively thinking about it can't getting out of your brain is then you may become a person who will never ever go to train stations or who will never like you will avoid because that confuses you of am I could I do that? Would I do that? I have to take every measure to ensure that I won't because that thought is so incessant. Amanda, you know so much about OCD. It is so refreshing, I have to say, but that's exactly

it. That is the compulsion. And I like that Glennon asked about like, well, does obsession mean sorry, my dogs are like gnawing at the door. Can you hear that? We're obsessed with dogs. Don't worry. They're little beasts and I can't let them out because they're going to do bad things. Dogs get a free pass every time. Okay. So like with obsession, no, it's unwanted for sure. But when people think like, oh, you're having obsessions, do you want to push that person in front of the bus? People then misunderstand OCD when really the person with OCD is doing every single thing in the world to make sure that that obsession never comes true.

I'm not going to the train station anymore. I'm not using knives. I'm no longer changing my baby's diaper. New moms will lock themselves in their room for four hours because they're so afraid to get near their newborn. It is the exact opposite of someone who wants to do that thing. Compulsive avoidance is so common for people with OCD because the thought scares them so much.

Because they think it's coming from their character and their self. But really it's like there's some incessant radio station on that's coming from nowhere, right? It's like not from the character. It's a glitch like a speaker. Okay, okay. Glennon, yes. The way I used to describe it when I was like deep in it

was like I had a pair of headphones glued to my head and it was literally like playing all day long and I could not take the headphones off. I couldn't. Fuck. I wanna repeat again about the egotistonic nature of this because I think this is such an important thing for everyone to take away,

is that by definition, OCD obsessions are ego-dystonic. That means you are having the thoughts all the time, but they are the opposite of your character and who you are and anything that you would do. So harm, for example, right? If in an OCD person, it is the last thing they would ever do is harm someone. It's kind, for example, right? If in an OCD person, it is the last thing they would ever do is harm someone. It's kind of like narcissist, right? If you're questioning if you're a narcissist,

you're not a narcissist. If you're OCD, obsessed with something, you're not going to do it. That's the whole point. So these are the people who they have the thought I could stab someone. And so they hide all their knives or they give us some other examples of the things that people think and the lengths that they will go to to make sure that that never happens. Yeah. So the one that really messed me up the most and like definitely trigger warning, this is going to be taboo. But the first intrusive thought for me that broke my brain was really like, what if you have sex with a child? Like it just popped into

my mind one day and it was like game over for me. And that was to me when I talked to my clients about it and when I talked to anybody about it, that is like the most stigmatized, the most taboo obsession, the absolute last thing that I would ever want to do and that anybody with OCD would ever want to do. But you, like a lot of new moms with OCD experience that. What if I sexually violate my child while I'm changing their diaper?

So I have clients who do not spend time with their children, make their partners change the diaper, make their partners do everything with the baby because they are so, so afraid that this thought means something about them, that they're going to snap and do it. It might look like people like with suicidal obsession, so unwanted thoughts about suicide, never being alone.

They always require someone to be with them because they're so afraid that they're going to snap and do something. They stop driving because they're afraid that if they drive, they're going to swerve into traffic. Like it really impacts people's lives in huge ways. And it can lead to living a really, really small life. You're so afraid of yourself and what you might do that your world becomes so small. And you have so much shame around,

especially these horrific thoughts that you can't tell anybody about it. No, honestly, for me, that was the worst part. I didn't Google it. I didn't tell anybody for I think it was like 15 months because I was so afraid of what I would find on the internet. I was so afraid that I would tell a doctor. I remember driving, I think it was like a couple of months into like that first intrusive thought that derailed me. And I remember driving to the doctor's office thinking like, I just have to say it like

that whole car ride. I was like hyping myself up like just say it, just tell her what's happening. And I couldn't like I walked into that doctor's office and I was so afraid that she would call the police that I would get arrested that they would think that I'm a pedophile. And I never wanted to access therapy for that same reason. How am I going to go to a clinician and tell them that I'm having scary intrusive thoughts about sex with children and animals? Like it just is unfathomable.

And so people stay stuck suffering in silence for so long. And that contributes to lack of a diagnosis, lack of care, and just even a lack of understanding about OCD. Nicole Zwaard I mean, you just saying those words out loud, I just like, I think that that is so fucking amazing that you're brave enough and confident enough and you're educated enough. You just saved, I think, people's lives by saying those words out loud on this podcast. Such a service.

It's amazing. Thank you. It took a while to get here because the shame, Abby, like you said, I mean, there is no shame like having those kinds of thoughts. You know what? It doesn't mean anything about anybody listening who's having them.

Like it doesn't mean anything about your character, but we have to live in the reality of the world. And if I go say that to someone who doesn't understand OCD, like I get comments on my Instagram all the time. I don't care anymore. I got some last week, like, oh, this woman promoting bestiality. And I was like, okay, like, just take like one look at my content. That's obviously not what it is.

But it doesn't bother me anymore because I know who I am. When I was in the throes of my OCD, that would have absolutely destroyed me. Let's talk about that because we talk a lot on this podcast about kind of your knowing, your inner knowing, your knowing and trusting yourself. And OCD is such a devastating, precarious place to find yourself because you maybe feel like

you cannot trust yourself because you cannot trust your thoughts. So when you live in an OCD brain, how do you know the difference between a thought you can trust and a thought that you cannot? I want to understand that. And then I also wanna get to like, how do you understand who you are apart from your thoughts, especially if those thoughts are unrelenting? Like where is the you if it's not in your thoughts? That's good.

Cece, everyone. Yeah, exactly. That's a really great question. Wow. In other words, fix us, all of us, real quick, a few minutes, so that I grab your time. I know you're real busy helping the people at OCD, but if you could also hook the rest of us up,

that would be very helpful. If you could help us. So, I can use myself as an example. I knew when I had that first thought that that was not at all, I knew that it wasn't what I wanted. I knew I was not capable of it. I've known like this might sound odd,

but since I was three years old, like the thing that I knew most about myself is that I was born to be a mom. And that's why these things, like the thoughts destroyed me the most. But like I just, what tends to happen is the person with OCD has a sense of knowing, and then there's the onset of OCD

that leads to the doubting. So I always like to ask clients, what was it like before the onset of this? What did you know about yourself? Now, what gets tricky is sometimes people have a childhood onset where some people will say, I've never known myself without OCD. And so that can be a little bit more difficult,

but like, what did you know about yourself before this? Most people, unless the insight is zero, which can happen with OCD, most people have some insight that this is not what they want. Now, when you're living with OCD, it does feel very real. That's the thing that gets talked about the most. Like, I was not only having that thought, but it was also like an internal feeling. Think about that like fight or flight that just runs through your body. And because it felt so real, that also contributed to me not trusting myself. Over time, it just chipped away at what I knew about myself. So when we say like, people will say like, just trust your gut, just trust your feelings, trust your inner knowing.

Well, that often can't happen for someone with OCD whose brain is misfiring. And you're getting all of these false alarm feelings in your gut. Like trust your gut is the scariest thing to say to someone with OCD because it's like, my gut is telling me I could murder 18 people right now. So that is tricky. And that's something that gets worked through in treatment.

You know, like once you stop performing compulsions, once you learn about OCD and why you're so hooked into the obsession. And I mean, we aren't our thoughts. I think that we're a lot more than that. We're our values, we're our character, we're our actions, caveat. All of us have done bad things. You know, I think when I say we're our actions, people get really scared about that, but we're so much more than the thoughts and the words that like run through our

mind. And I think society places such a large emphasis on, like, you are your thoughts and your thoughts create things and your thoughts are the most important things. They just aren't. Thoughts are important to a certain extent. Like, if I tell myself that I hate myself all day long, that's going to impact me,

but I can have a million and one intrusive thoughts and still go out and be an amazing person and live a very values-based life It's interesting because it's kind of cyclical right like the more that I find myself hating myself is the more that I am Aligning with my thoughts that don't align with me. It's almost like if we could all understand this ego, syntonic, ego, dystonic model in our lives, then we could have a thought, place that thought correctly, and then we'd probably end up hating ourselves less

because of that. So it's an interesting cycle of relying too much on your thoughts to decide whether you're good or bad. Right, because we're not in control of our thoughts a lot of the time. Even just passing thoughts about like what I'm going to eat for lunch, like we're just not in control of our thoughts so much of the time. So to place who we are, like to place that emphasis on our thoughts just doesn't make a whole lot of sense. Allegra, would you tell us a little bit about your story? Would you mind just telling us about you and like how, when did you have that moment

where you went into the, like how did you realize that you had OCD and how did you get into this healing work? Yeah, so I think it was about 15 months of me literally not telling a soul. And I was working as a publicist in LA at the time. I remember the exact night that I Googled for the first time, why am I having these scary sexual thoughts? I was at the end of my rope.

I remember thinking to myself, something has to change, or I am going to kill myself. And it just is a really sad reality for a lot of people with OCD because there wasn't an escape from my brain. The only escape to me was suicide. So I was at rock bottom of like, something either has to change or I will die from this. And I was at a movie premiere. I can't even believe I'm saying this, but I was at a movie premiere for a friend of mine whose son had unfortunately passed away from cancer, like a four or five year old son. And I remember having like intrusive sexual thoughts about the dead son. I like don't want

to cry. But that was just like, that was the point where it was like, I can't do this anymore. Not only a kid, but like a dead kid who died of cancer. Of course my brain went there because my brain went to every which place that it could. So that night I went home and I like pulled out my phone and I just Googled, why am I having these thoughts? Like I wanted something. And I found online, like intrusivethoughts.org

and like these different websites. I found a website for the OCD Center of Los Angeles, but I still didn't believe that it was OCD. I looked at the website and I was thinking like, why would I reach out for treatment at this treatment center where people around me are gonna be sanitizing their hands 100 times and like tapping the door and that's not me.

So I like put my phone away. It helps to have that like little bit of, okay, I'm seeing people online who are also experiencing this, but I put my phone away and I didn't do anything about it. And then I really had a friend who kind of saved my life. I was at the office, really high functioning, which I think masked a lot of the pain

that I was experiencing. And because the obsessions and compulsions were mental, like nobody saw it, but I was crying outside of the pain that I was experiencing. And because the obsessions and compulsions were mental, like nobody saw it. But I was crying outside of the office one day and my friend saw me and she just grabbed my hand and pulled me inside and she said like, you need a therapist, like you really just need a therapist. So she called her therapist, who then called me and gave me a referral to a therapist, Lori, I still see her I I've seen her for nine years.

I went to that first session, I don't know what came over me, but I told her what was happening. She's not even an OCD specialist and she diagnosed me with OCD that first day, which was wild to me. Now, the diagnosis didn't help. I mean, OCD is the doubting disorder. So I got the diagnosis and was like,

wait, what if it's not? What if she just doesn't know me? What if she's lying to me? This was like three years of me being like, wait, what if I just like tricked everyone? Yeah, mental illness is such a good time. It's so fun. It's so fun up in here. And so, but even then, like she wasn't an OCD specialist and she told me that.

But I wanted to work with her because I liked her from the beginning. And then I think it was like two years into our work together, she was like, Allegra, I can't see you go through this anymore. Like you really have to find an OCD specialist. So I did. I think I was 22 at the time and that specialized OCD treatment changed my whole life. Like saved my life getting on Prozac, God bless Prozac. I will never live a day in my life without Prozac.

Also changed my life. It like really quieted down the thoughts. And I decided because therapy had been so helpful, because I'd been through so much, because people don't talk openly about this, like that really ignited me to pursue a career as a therapist. And I just like totally changed course. Oh, amazing. I was don't worry, I was still fucked up.

Yeah, I won't go. Oh, I came to you, Glennon, was like literally someone recommended Carry On Warrior after I had unfortunately been hospitalized one night, like put in handcuffs at my West Hollywood apartment, taken to a county hospital. I woke up the next morning and was like, I feel the most shame I've ever felt in my life. And I asked my friend Kimberly, like, what do I do? And she was like, read Glennon right now.

And she sent Carry On Warrior. And I like started reading it and I was like, I'm gonna be okay. Amanda's like, we need AAA over here. Yeah. Yeah. Same. And I was like, I'm gonna be okay. Amanda's like, we need AAA over here. And I was like, I'm gonna be okay. So don't worry. When I went back to school to be a therapist, still lots of problems. Okay. Well, that makes me feel better. But, wow, thank you for that. That makes me feel so,

I don't know. I just love that when we are at our hardest time, sometimes somebody else like across the, it's just, I love that. Thank you. Do we know scientifically like why the obsessions and the obsessive intrusive thoughts and compulsions, why they begin like the onset you keep using the word onset? Do we have any understanding? And is it the cruelest thing that they do the opposite of what you are? Like that feels so like you loving children and wanting to be a mom. Like does it tend to take the thing you are and put on a radio station that is the opposite of that?

Yes. So OCD tends to attack what people value and there's nothing in the world even still that like I want them to be a mom. So it makes perfect sense. I think back then at 19, I would have said this is just random. But now that I've like been through this for nine years and I treat it and it's my specialty. I don't think obsessions are all that random. I really do think that it targets people where it would hurt most. Like a lot of people who are really religious will get like religious scrupulosity obsessions. And that's like their main thing. I'm not religious. I've never cared about contamination. Like those obsessions were just never going to stick for me. And Abby,

unfortunately, we don't know the cause of OCD. I wish we did. I think it would make life a lot easier for a lot of people. What we know from research is that there are brain regions or brain circuits that are implicated. So it is a brain disorder to a certain extent. There's a biological predisposition. So we've seen like stuff with genetics playing a role and then environmental stuff as well can exacerbate the onset. So I think because the year before my OCD got really bad, I think because I was anorexic, that not eating and not having nutrition and like the obsessive compulsive cycle there, I think really probably pushed me into OCD a lot harder than I probably would have suffered if I wasn't struggling with an eating disorder. You just mentioned the religiosity.

I'm wondering for folks who are hearing this right now and for whom it's ringing some bells, could we go through some of these types of areas? Because I think that it's confusing because so many of the obsessions are on paper very valid. I am afraid something will happen to my child. Okay, rational, understandable. Lots of people are afraid of that, but there's a tipping point issue. And then there's also these categories that you just said, the religiosity, like, okay, God hates me or did I say something blasphemous or am I evil? Can you just

go through some of these areas that are not talked about enough so that maybe people will recognize themselves a little bit? Yeah. So harm obsessions like harm to self or others. What if I intentionally kill someone? What if I want to kill myself? What if I'm a murderer? We have like pedophile obsessions. So what if I am a pedophile? What if someone close to me is a pedophile? Sexual orientation and gender identity obsessions. So what if I'm not actually a lesbian and I've just been lying to everyone my whole life and now I'm going to ruin my partner's life? It could be religious scrupulosity, like you said, could look like, what if I've

offended God? What if I don't love God enough? And then we tend to see a lot of like compulsive prayer where you're not just praying once you're praying 20 times until it feels right internally. There's relationship obsessions, like what if I don't actually love my partner? You can't get that thought out of your mind. You're constantly checking in on your feelings. Postpartum obsession. So that could be an obsession about you actively harming your child or harm kind of like befalling your kid. Like what if my baby doesn't wake up in the morning? And like you said on paper, some of these things seem logical or

rational, but it's not logical or rational given the context of it. Like yes, pedophiles do exist. Yes, there are people who harm children, but the client is coming in and saying, I'm not that person. I don't want to, I have no desire to do this thing. So it's kind of irrelevant, the fact that pedophiles exist, like it's irrelevant to me because that's not who I am.

And that's a big thing we see for people with OCD. It's that obsessional doubt where a person confuses like an imagined possibility with what's actually happening in reality. You said that OCD is like spending every day trying to solve a problem that doesn't exist. Yes, that's exactly it. And it's crazy because and maybe I shouldn't use the word crazy. But when I talk about myself, listen, there are a couple of things happening up here.

So I totally agree. Yeah, I know. I get to use that word, too. Yes, I'm crazy. We get to use that word. There's a lot happening and I will own that. We earned our right. I like it. We are. Yes, we did. We certainly did. So even I will have a lapse like every six months. It's so weird. It's like block work. I think it's probably related to trauma at this point,

but I will have a lapse. I literally am an OCD specialist. I've gone through treatment. I know I'm not this person, but when my brain gets sticky, I fall back into compulsions and it's like, and then I wake up and I'm like, what are you doing? Like this doesn't exist. What are you doing? But it feels so real. And that urge to perform the compulsions is so like strong, that all day long, I'm in my head compulsive about this thing that isn't actually a problem. Like God does not hate the person. They are a lesbian. They definitely are not a serial killer,

but you spend all day trying to solve this problem that just isn't even there. And what is the compulsion? Like if you're having that thought and you're not the thing we always see, you're not turning the lights on and off, what are you doing? That is like the purification process sort of,

like you're trying to, okay. That's exactly it. It's like, so mental compulsions can be like ruminating. So analyzing an obsession, you're just going over and over and over the obsession in your mind. And that's different than an obsession because that rumination is an active choice.

It's like a behavior, but it's a mental behavior. You are checking in on your feelings. That's a really big one for people with sexual obsession. So you have that thought, like, what if I'm attracted to my dad? And then you check your groin or area to see if you're feeling something. That's the compulsion.

But what tends to happen is when you're checking down there, you're probably gonna feel something. And that then feels like evidence. So then you're caught in that, let me check again. Let me make sure that I'm not feeling this thing could look like mentally reviewing the past. So going over and over and over past experiences in your mind, thought neutralization is a big one. And that's why like typical CBT doesn't tend to work for OCD treatment because thought neutralization happens when you replace like a bad thought with a good thought. So let's say you have the thought like fuck God pops into your

mind, and then the person immediately has to neutralize it with I love God. That's not a solution. That's not going to help. You're just reinforcing that unwanted thought and you're caught in that obsessive compulsive cycle. I mean, it could be like purposely bringing on the thoughts to see if they still bother you, like all kinds of mental acts that people perform. And you would never know that someone's doing it.

Like I could be sitting at my desk, I don't know, writing an article and everybody around me could have no idea that I'm like simultaneously compulsing. Oh, that's heartbreaking. It's devastating. There is so much counterintuitive about OCD and compulsions are one of them because people who love folks who have OCD want to reassure them that everything's okay. When a person is drowning in their obsession and it feels like the only thing that will

get them to breathe is the compulsion. You want that for them. And you might want to help accommodate that for them because it is the only known thing that can alleviate the obsession. Yet you say that accommodating compulsions is the absolute worst thing that we can do for folks who have OCD. Can you just walk us through that brain cycle of how the compulsions actually make the obsessions worse

and what is an alternative to that? That's a really great question. And that's what breaks my heart when it comes to like parents of children with OCD. Because the thing that you want most is to reassure your child is to make them feel better. But that reassurance just doesn't satiate. So what happens is when a person performs a compulsion, it might help in the short term. But again, it just signals to the brain that the obsession is important. It's something that we should pay attention to. And then the brain

sticks to that thing further. And then it also tells the person that the way out is to perform that compulsion. And that one compulsion is never going to be enough. It's two, three, four, five, six, seven until the person is in the shower for seven hours sanitizing until they've asked their mom 80 times if they're a serial killer or not. And it just doesn't satiate. It's never going to be enough. So when you're accommodating your kid or your partner or whoever it is with OCD, you're essentially aiding the OCD. You're making the OCD bigger. You're giving it importance when that's not what we want to do.

We want to starve the obsession, to show the brain, this doesn't matter. It's not dangerous. It's not important. We don't need to do anything about it. It's hard because it often means a little bit of short-term discomfort for the long-term gain. Whereas when a parent wants to help a child, you really want to help them in the short term. I just want them to feel better right now.

But that compulsion, while you might reassure your kid and they feel better for two minutes, it just exacerbates their suffering in the long run. Because it's giving meaning and importance to that obsession. Hmm. How do you starve it? Great question. A lot of cutting out compulsions. There's a whole, cutting out compulsions.

There's a whole treatment process and what is effective for OCD, but psychoeducation first and foremost, really understanding what OCD is and why you keep getting hooked into it. And then when you stop performing compulsions, you are no longer reinforcing to your brain that that obsession is important. So really cutting out compulsions is such a big piece of treatments. It's hard, it's not always automatic. So I don't want anyone listening to think

that they need to like never reassure their child again. It's often done with the help of a therapist. It can be done gradually, but ultimately it is cutting out compulsions and then also continuing to live your life, like facing your fears head on. So instead of throwing away the knives, it's I'm gonna cook with knives tonight

and I'm gonna let those thoughts exist and I'm gonna do nothing about them. That tells the brain this is not meaningful, this is not dangerous. Wow. That's the same reason that traditional therapy is not effective for OCD. The alternative to that is exposure therapy, right? Yes.

Can you walk us through how that dovetails with the, I'm going to cut with knives tonight? Absolutely. So exposure and response prevention is the most evidence-based treatment for OCD. Really what it entails is exposing yourself to the feared stimulus while simultaneously cutting out that compulsion. Like I used with the knives example, the exposure could be, I'm going to cook with the knives. Then response prevention is, after the fact, I'm not going to ruminate and mentally review me cooking to see if I did something.

And that can facilitate a couple of different things. Number one is something called habituation. So the more that you do something over and over again, the easier it tends to get over time. And then it can also facilitate something called inhibitory learning, where you're essentially learning safety by cutting with the knives, by changing your baby's diaper, by driving the car, you are learning that that thing isn't happening. You're not killing anybody. You're not swerving into the road. So there's a lot of learning that takes place when we change behavior.

When you start that process, do you do it like with a therapist or having your friends and family around? I mean, some people can do it without for sure. And I think where it gets hard is like for me, my whole life was an exposure because I was having thoughts about kids and family members and my boss and friends. Everywhere I went was an exposure for me and that was so difficult. So yes, there is like that active exposure

you can do with a therapist, but a lot of the times people are getting passive exposure as well where that exposure is just happening Because there are some parts of life that we can't avoid When I think about you Having all of this happen to you and not even being able to Google like not knowing That there were other people that this was just a thing that this wasn't you. This was just a thing happening to you I imagine you find that people are so grateful

to just be in community with other people for whom that have this station playing. Is that an important part of recovery from this? Absolutely. Now, I think it depends on where the person's at because when I was in my individual therapy for OCD, my therapist suggested I go to group therapy to like meet other people. Absolutely not. I was so afraid individual therapy for OCD. My therapist suggested I go to group therapy to like meet other people.

Absolutely not. I was so afraid that my brain would stick to somebody else's obsession. I was like, listen, we got a lot going on up here. We do not, like, I didn't want to have thoughts about murder. Like I was so afraid that I would see everybody else with OCD and then my brain would like grasp onto that because that's how sticky it was.

So at the beginning of treatments, it really wasn't super helpful for me. But as I moved through treatment and then as I'm a therapist now, like I run OCD groups, I love this community more than anything. I never feel more at home than when I'm with someone who has OCD because I just know that they understand my brain. So community is a massive resource

and it helps alleviate that shame. Just like knowing that there are other people experiencing this and that you're not alone and that you're not a monster. And that's so much of why I do the work that I do. Do OCD people who have gone through healing end up more evolved than the average bear? Because it feels like we're all trying

to figure out that we're not our thoughts. Because seriously, like, like I sometimes feel like my addict friends are just like better than my non addict friends because they go through this extreme like recovery process. Anyway, if we're all trying to figure out that we're not our thoughts and people who have OCD have to, to survive, is one of the reasons why you like people that have OCD. Do they end up more... We're all trying to figure out we're not our thoughts, and that we're something else that's better and truer and more beautiful.

More evolved or enlightened or something. Yeah, are they? I have to say yes. I might be biased, but I think yes. And I also think because, to me, like I've had a lot of other trauma, OCD was the most traumatic thing that I've ever been through in my entire life. So I think that going through what people do with OCD and coming out on the other end of that also builds so much resilience, that I think that that's also a part of it.

Like, yes, more enlightened, yes, more like psychologically aware, but also so damn resilient. The strongest people that I know are people who have lived with OCD and who have overcome it. And I'd never like to compare when it comes to mental health conditions, but I think in terms of the shame and the stigma and the misunderstanding,

like OCD is just one of the most misunderstood conditions. And it is just inherently easier for me to walk into a therapist's office and say, I'm struggling with food restriction than it is to say, I'm like having thoughts and I'm terrified. So I think like because of that as well, like there is just so much resilience and strength that comes out of people with OCD. And like the OCD didn't give that to them. I like to say that to people because they'll say like, my OCD really just gave me strength. No, you are strong for getting through that OCD and you gave that to yourself. Do people fully recover from an OCD diagnosis? Great question. I wish I had the answer. I mean, no, I think really is the answer. There's no cure

per se. I wish there was, but like what that means is I can never guarantee that I'm not gonna have a lapse again and I do have lapses occasionally. You can get to the point where you no longer meet diagnostic criteria. Like that's where I'm at right now. My obsessions and compulsions do not take up an hour of my day.

I have the occasional intrusive thought. I just like let it go and move on with my day. So I'm recovered right now, but there isn't a cure like I just know that at some point in my life I will have a lapse again much like Yeah, no and eating disorders as well, you know, I'm in recovery will I have a lapse at some point perhaps Yeah, there's so many similarities. Yeah. So much, especially between OCD and eating disorders. In a relationship, if one person has OCD and another person doesn't, how does that play

out? Is it healthier for that OCD person to tell their partner about their intrusive thoughts that they're having or not? That's a really great question. I think it can be helpful for partners to know, like generally speaking, this is what I go through. And like there can be that education process to know, like generally speaking, this is what I go through. And like there can be that education process at the beginning if someone feels like it.

I always say to people, you do not owe your partner the content of your obsessions. You do not owe your partner your diagnosis because you are not your OCD. Great. By not telling them, you're not like leaving out this secret self that you're hiding from them. But it can be helpful for them to know

so that they know how they might be accommodating the OCD. What we don't want is for like the partner with OCD to be using the partner without as a compulsive mechanism. Like confessing to that partner all day long, asking for reassurance all day long. And that really is when it can be helpful. There's so little OCD education in the world. And what we know is that it is a very dangerous thing

to the OCD sufferer to have OCD. That is the danger, okay? Be clear, the only danger we're talking about is the danger to the OCD sufferer. But 50% of sufferers of OCD have suicidal ideation, 25% attempt. There's such an overlap in folks who have OCD who also have generalized anxiety disorder, 75% of those, substance abuse, 27%, depression, 68%. So, do you believe that there are people with OCD who do not know that they have OCD outside

of these kind of taboo shame laden things that we've already talked about? Do you think there are people who are living with OCD and think it's anxiety? And if so, what do you say to them who are listening? That is such a brilliant question. And yes, I think that OCD commonly gets misdiagnosed as generalized anxiety when they just aren't the same disorder. I would say find an OCD specialist. If you're listening and you're thinking like, this is really what I'm going through. I have these obsessions. I perform these compulsions. Finding an OCD specialist who's able to do that differential diagnosis can be really helpful.

A lot of clinicians sadly don't understand OCD and they just throw on a label of generalized anxiety. And that's not effective because the treatment for the two things are different. And then even in grad school programs, when I was training to be a therapist, I like did a presentation on OCD and I had my professor stop me in front of the entire class and say this is wrong. Like rumination would be the obsession, it's not the compulsion. He had no idea what he was talking about, but like even in grad programs, we learned so little about it. So we have therapists misdiagnosing all the time, and OCD is just not the same thing as generalized anxiety. And then also, like you said, with comorbid conditions, people living with OCD who have substance use conditions and people don't understand perhaps that the OCD is really

contributing to that. There's just misdiagnosis everywhere. I don't understand how there isn't an 100% Venn diagram of OCD and substance abuse. Like how are you not just trying to do anything to get out of your brain? Right, and then what's sad is a lot of the times treatment programs are not set up to treat both at the same time. So we fail someone who's struggling with substance use

and it's like, well, you just have to go get sober. Okay, but a lot of the reason that I'm drinking is to escape what's happening in my mind. So how is that going to work for me? Or do you only present that one? Like if I'm, if I'm like, I'd rather just be a drunk so I can come say my problem is the alcohol because I don't want to tell you the real thing, which is that these thoughts I'm trying to drown out. So are people only presenting the more acceptable disorder? Well, absolutely. And even with OCD, I'll have clients come in

and they'll say, I have contamination obsessions. And then like five sessions later, the other stuff comes out. So even when people see me as an OCD specialist and very vocal about living with OCD, I really talk about the taboo stuff. I will still have clients come in who only talk about one thing

and then gradually open up about another. And that's with an OCD specialist. So unfortunately people go and get misdiagnosed. People get hospitalized wrongly or get like reported to the police by therapists who don't understand OCD. I firmly believe OCD should be the one diagnosis that every single clinician understands. Mm-hmm.

Is there something like coming down the pike that we can look forward to in terms of like more research? I mean, you're in this field. Is there any kind of optimism around your field of work? I think that with social media, we've seen a rise in OCD advocacy and education. So I'm hoping that that continues. There is like quite a bit of research about OCD, but for whatever reason, perhaps because a lot of it is so taboo, the media only highlights one particular part of it. So I think there is hope in seeing how many advocates and educators are really trying to push for like the world's understanding what OCD actually looks like. We have a long way to go that we sadly have a really, really long way to go.

Can we close with you speaking directly to the person who is listening, who is suffering with this. You said people with OCD are exhausted and in pain. What do you say to the exhausted in pain person? That it can get so much better. That is one thing I never believed. Like I thought because the onset was so rapid and because my brain changed so quickly

that this was gonna be me for the rest of my life, but it gets so much better. I describe myself as being 95% better than when I had the onset at 19. And I get like 97% less intrusive thoughts than I did at 19 when it was 24 seven. So it really can get better. You can change the brain. You can rewire the brain.

And there is so much hope for living a really beautiful, meaningful life, even while you have OCD. You're amazing. I know. This is like a thing that people could just never talk about because of our culture's ideas about what this would mean about you. So to say this stuff in service of yourself and other people is the bravest, most awesome.

I mean, yes, you are something. How does a person, like you're a therapist, how does a therapist say, okay, this person, I'm worried that this person's going to do something. This person has OCD and I'm not worried that this person is going to do something. That's a good question. What are the tricks of the trade with how do you determine what is OCD and what is not? Yeah. So when, let's say if we're going to look at suicidal obsessions compared to someone who's actively suicidal, right?

The person with suicidal obsessions will come in and they'll say, I don't want to be having these thoughts. I'm not suicidal. I really like my life. I'm so afraid of my brain. I stopped driving. I'm not going to be alone. I threw away all my knives. Like, this is terrorizing me. It's very egotistonic. Whereas with something like, let's say someone is actively suicidal, they might come in and say, they might not like that they're having thoughts about suicide, but they probably are aligning with it.

You might see them planning, getting means to harm themselves, you know, creating a plan to do something. They probably have intent to do something if they're in, like like really severe suicidal ideation. And that's a huge difference. One is actively planning to do something or they could be, whereas the person with OCD is doing everything

in their power to make sure that that thing doesn't happen. Yep, got it. Same with homicidality. I would easily be able to tell if someone comes in and says, I wanna to kill my boss. I bought a gun and this is my plan. Versus someone who literally is like, afraid to even come near me

because they're so afraid of their brain. I just can very easily tell the difference. But unfortunately, a lot of clinicians who don't have training can't. They hear suicidal thought, they hear violent thought, and the alarm bells start going off. Like are they homicidal? Are they suicidal? Yeah. Just to be perfectly clear about it, like in your therapy, Allegra, you have such confidence and such unequivocally know that these people are not dangerous. That one of

your exposure therapies to some of your clients who have the homicidal obsessions is that you have them hold a knife to your back to show them that they won't do it. Correct? Wow. I've absolutely had them do that for clients who are willing, by the way. And it can be an effective exercise for them to learn. Like, yeah, I don't I mean, like their hands are literally like shaking. Like this is not a person who would ever do that. I can always tell. So yeah, like for me, it's it's clear as day. Huh? Yeah. Damn. Allegra. Pretty wild. Do you have any other? How are you, sister? I feel really thankful.

I'm really thankful for your work in the world. I'm really thankful that you're having such a wide net to free people for saying the things that people desperately need to hear to connect with the reality that they're not alone and that this is not who they are, but this is a thought. And I'm just, I'm thankful for your voice. Thank you. I'm grateful for you, Amanda.

You knew everything. Like it's honestly so wonderful. The questions that you asked, I am so thoroughly shocked in the best way. Well, love bugs. I mean, go, if you felt seen and understood in this episode, please go visit Allegra. We're gonna leave all of her information

for you to find her on the TikTok and on the Instagram. The TikTok, that's amazing. We love you. You are not your thoughts. We can do hard things. Thank you, Allegra. If this podcast means something to you, it would mean so much to us. If you'd be willing to take 30 seconds to do these three things, first, can you please follow or subscribe to We Can Do Hard Things? Following the pod helps you because you'll never miss an episode and it helps us because

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in partnership with Odyssey. Our executive producer is Jenna Wise-Berman and the show is produced by Lauren Legrasso, Allison Schott, Dina Kleiner and Bill Schultz.