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 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.

Welcome to we can do hard things.

Yes.

I love you. And you, both of you, I was thinking about. That's what I wanted to tell you. And I love doing this podcast, and I love the Pod squad, and I am really 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 going to 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 ten 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. 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. 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 hell 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 going to 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.

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 advocacy about OCD are at the forefront of her career. Allegra is a mental health content creator for her platform at Allegra Castens 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, like, 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 ten 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 going to 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, the. 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, like, 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.

Hmm. And this is the one. This is pure o. Is that what that it's, like, colloquially named?

Yeah, 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 thought. 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 obsessional 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. They 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.

Absolutely.

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, 24/7 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.

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?

Or obsess with dogs? Don't worry about it.

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 4 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. It's like a glitch character. It's a glitch. Like a. Like a speaker from. 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 want to repeat again about the ego dystonic 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 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 gonna do it. That's the whole point.

Wow.

That is.

Okay, so these are the people who. They have the thoughts 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 talk to my clients about it and when I talk 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 diapers, 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 that first intrusive thought that derailed me. And I remember driving to the doctor's office thinking, I just have to say it. That whole car ride, I was hyping myself up. Just say it. Just tell her what's happening. And I couldn't. 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.

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 are 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's no shame, like, having those kinds of thoughts, you know? And 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 your knowing, your inner knowing. You're 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 want to 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.

CC, everyone.

Yeah, exactly.

Great question. Wow.

In other words, success. All of us, real quick, in a few minutes.

I know you're real busy helping the people with OCD, but if you could.

Also, so you could help us. So, like, I. I can use myself as an example. I knew when I had that first thought that that was not at all like, 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. 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, like, 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. Like, why am I having these scary sexual thoughts? Like, I was at the end of my rope. Like, I remember thinking to myself, something has to change, or, like, 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 pulled out my phone, and I just googled, why am I having these thoughts? I wanted something. And I found online, like, intrusivethoughts.org and 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 going to 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 office one day, and my friend saw me, and she just grabbed my hand and pulled me inside, and she said, you need a therapist. 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've seen her for, like, nine years. And I went to that first session. I don't know what came over me, but I told her, like, 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, like, OCD is the doubting disorder. So I got the diagnosis and was like, wait, what if. 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've 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, like, 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.

Amazing.

I was. Don't worry. I was still fucked up. How 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 carrion warrior. And I started reading it, and I was like, I'm going to be okay. Amanda's like, we need AAa over here. And I was like, I'm going to 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're are at our hardest time, sometimes somebody else, like, across the. It's just. I love that. Thank you. I'm Rachel Martin. After hosting morning Edition for years, I know that the news can wear you down. So we made a new podcast called Wildcard, where a special deck of cards and a whole bunch of fascinating guests help us sort out what makes life meaningful.

It's part game show, part existential deep.

Dive, and it is seriously fun. Join me on wild card wherever you get your podcasts. Only from NPR.

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. 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 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 religious scrupulosity obsessions, and that's 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. You know, 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? Can't get that thought out of your mind. You're constantly checking in on your feelings, postpartum obsessions. 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, right?

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 things happening up here. So I totally agree.

Yes, 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, Allegra.

We earned our right. Yes, we did. We certainly did. So even I will have a lapse, like, every six months. It's so weird. It's like clockwork. 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 compulsing 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, like, 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 a. The thing we always see, you're not turning the lights on and off, right? What are you doing? That is like a 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 all 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 going to feel something, right? 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 234567. Until the person is in the shower for 7 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. But 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, 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.

How do you starve it.

Great question.

A lot of cutting out compulsions, there's a whole, like, treatment process and what is effective for OCD, but psychoeducation first and foremost. Like, 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 treatment. 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 going to cook with knives tonight, and I'm going to let those thoughts exist, and I'm going to 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. And really what it entails is exposing yourself to the feared stimulus while simultaneously cutting out that compulsion. And like I used with the knives example, the exposure could be, I'm going to cook with the knives, and 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 that my brain would stick to somebody else's obsession. 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 treatment, 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. Like, I never feel more at home than when I'm with someone who has OCD because I just know that, like, 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, 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, more evolved.

Or, like, enlightened or something yeah.

Are they?

Yeah. 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 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.

That's good.

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 going to 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 alcohol addiction.

All of us.

Yeah, 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 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 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% attempts. 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 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 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 a 100% venn diagram of OCD 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. 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. 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, I'm 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.

Is there something like coming down the pike that we can look forward to in terms of 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 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 understanding what OCD actually looks like. We have a long way to go, though. 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. I thought because the onset was so rapid and because my brain changed so quickly, that this was going to 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 24/7 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 ego dystonic. 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, 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 want 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 thoughts, and the alarm bells start going off. Like, is, 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 clear as day, huh? Yeah.

Damn, Allegra.

Hmm.

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 going to leave all of her information for you to find her on the TikTok and on the Instagram.

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 you'll never miss an episode. To do this, just go to the we can do hard things show page on Apple Podcasts, Spotify, Odyssey, or wherever you listen to podcasts and then just tap the plus sign in the upper right hand corner or click on follow. This is the most important thing for the pod. While you're there, if you'd be willing to give us a five star rating and review and share an episode you loved with a friend, we would be so grateful. We appreciate you very much. We can do hard things is created and hosted by Glennon Doyle, Abby Wambach, and Amanda Doyle in partnership with Odyssey. Our executive producer is Jenna Wise Berman, and the show is produced by Lauren Lagrasso, Alison Schott, Deena Kleiner, and Bill Schultz Sage.