How OCD Is Misunderstood By Others

Why is OCD so often misunderstood by families, friends and whole communities? Kristina and her guest Lucas talk about how fear of judgment keeps people quiet about their thoughts, how culture and media shape what people believe OCD is, and why it is about far more than being neat or organized. She also shares how she explains OCD to loved ones, as an alarm that keeps going off, so that the behaviors people see make more sense. This is a listen for anyone living with OCD, or anyone who wants to understand someone who does. This content is educational and is not a substitute for one to one professional care.

Transcript

First, We will speak right now about this, How OCD is misunderstood by others, By our families, Our community. And when I started my story after my diagnosis in 2023, When I told my wife something is wrong, I knew that it can be OCD. She's so scared. She thought that I can be really dangerous, I can hurt my children, I can hurt her. And I understand her and her point of view because she didn't know anything about OCD. And there are many people in Poland, In the other countries who really don't understand what OCD is and they can think we are like a psychopath or something. Well, I'm originally from Ukraine and like I, You know, To speak to that, Right? Like, So my mom passed away July 31st. And I, One of the first things I did is I went to Ukraine to see the family that I do have left there. And, You know, Similarly, Not just this recent trip I took, But even growing up there and all the times that go back and forth, Um, You know, Mental health in general is, From what I've seen is very limited. Like, But when you're talking about things like depression, Anxiety, OCD, Like those things have not typically been historically things that really are discussed or understood. And culturally, Um, People don't talk about this stuff. Like this stuff is not as accepted in terms of, You know, Conversations. So it's not like, Like in the States, People are way more open and people talk about all sorts of things, You know, Like even when I went back Recently, I noticed like, Yeah, There's still things we don't necessarily talk as openly about. You know, It's just also understanding that. You know, And where you're located in the world, And what is it like there, Right? And then, Like you said, To your point, If there's lack of understanding, We tend to be scared. And also, We want to look at how is it represented in the world, In the media, In movies, And it's often very misrepresented. So when you hear having some thoughts that are really scary. Your first kind of thing you're gonna think to yourself is, Oh my gosh, Do you wanna do that? Is that something you actually like, Is that something you think about? Oh my gosh, Right? And that's why many people don't tell anyone about their thoughts, Their illness, Their problems with mental health, Because the people are really, People scared about what other people people will say, Will think about them. And especially when we speak about taboo thoughts, It's even harder for these people to start therapy because Also in Poland and in other countries in USA is situation is I think better but in Poland it's not so many really good therapists who really understand what OCD is and how to treat this and how to make exposure and response prevention and that's the point to why people don't start therapy because they are really scared and ashamed about these thoughts and this mental health disorder. Well, Exactly. I think there's a general fear of judgment. People generally don't want to be judged, Right? We don't want to have somebody look at us and go, Oh, Right. We don't want to feel that because then you're going to be shunned. Right. People will then not want to talk to you. And all of us, I think, Just as humans from evolution, Part of belonging is an important element of survival. So there's this this deep internal Need we have to somewhat be accepted and and someone belongs somewhere So, You know, Yeah opening up about like hey, Sometimes I have these weird thoughts Right, It does feel scary and and also culturally again, Right like in ukraine, For example culturally There's a lot of judgment usually like I know this and if you ever are in that culture, You see people pass judgment all the time. They're always looking, You know, They're always sizing you up and down. There's a lot happening that's not being verbally said. And when you do speak the way you speak communication is you'll say something, But people are reading between the lines. Like, Okay, What do you really meaning or what's behind this? So there's already this kind of intensity of, Oh my God, There's, There's this going on. And then like, I don't want to say anything because Oh my God, Right. Absolutely. I'm going to be judged and absolutely people are going to start talking about me or, You know, Misread the situation. Yeah, I had really, Really luck that I have around me, I have around me many people at work, My friends, Who don't understand what OCD is, But when I told them, They didn't judge me. And they told me, Yeah, We don't know why can't you just stop, But okay, This is disorder and. . . Through my memes and my page there, My friends really understand how OCD works and what is OCD mechanism. And this is really awesome. But the really first thing I think people don't understand that OCD is not me. OCD is something that really hits our values and these thoughts. Are hit our values. And many people don't understand this point, Because when I ask someone for reassurance, And. . . For example, My family don't understand why I'm asking about this again and again and again. They think that what I'm doing is only me, Not my disorder. And this is really also painful for me, But I understand their point of view because OCD is really a problem for the whole family. But it's a lack of understanding that OCD is not Yes. Yeah. So I think there's two things when I hear that it's kind of one is, Um, You know, What I've seen through just my work and for myself with my own OCD is that people will only see what you're doing, Right? So if they're seeing a behavior, That's all they're kind of working off of their, Their chest, They're not inside your head, Right? They can't read your mind. So they're just going off what they see. So if all they see is like, I used to be, Uh, Like I used to compulsively, I didn't even realize this was a compulsion. But I used to compulsively apologize. I mean, I excessively would apologize to the point that some of my friends would be like, God, Can you just stop? And I'm like, Okay, Okay, But I'm sorry. Are you mad? I mean, It was through the roof, Right? I didn't know, But I was doing it. So that's all they see. So it makes sense, Right? They get annoyed. They're irritated. They're like, Oh my God, Christina cheese. Now, Through once I learned and realized, Oh my God, I have OCD. And you know, I didn't know because the way my OCD was showing up, For example, Is not something you commonly see in the media. Now we know more about it. But like for me, For example, There's like chest right OCD. Um, There's some morality and relationship OCD. So I had no idea about those things. I thought it's like, You know, Cleaning, Touching, Flicking lights on the wall. I don't have it. I don't have that. Right, But then I'm like, Oh my god. No, Wait a minute. I do have it. So the second part to this is Not just that it goes against who we know ourselves to be because that's our experience I think what's really important is understanding the neurobiology that there is a biological component of and kind of how I like to explain it to family members and loved ones is saying look it's kind of like the this is just what I say but it's like there's a little glitch like the brain is is not processing the full circle or the full cycle of information and it's like it gets to the end it's like imagine they're like it's like there's a little space and it can't it can't complete right so you it activates internally Your limbic part of the brain, Which is the fight-or-flight response. It literally makes the alarm go off And so I tell people imagine if you're sitting there and suddenly You know something in your head that you didn't you couldn't you didn't fully finish kind of the thought cycle Correctly or properly and suddenly your alarm bells are going off. What would you think right people? Well, Yeah, I probably think like oh my god something's wrong I'm like exactly and so now imagine that happening over and over and over and you can't, It's not like you can reach in there and like press a button and turn it off. Right. So usually when we get into more of that biological and kind of explaining these certain parts of the brain, How they work, Um, People start to be able to go, Oh, Okay. Right. Like, And then we kind of get it, Get more into like, Right. So when that happens, It's not because I'm personally, Wanting this or creating the experience that there's something that just isn't properly Working the way it needs to and so in certain moments and over certain topics. I can suddenly get this Experience where I'm feeling really anxious or guilty or ashamed or uncomfortable and because of that alarm and it's so intense That it's really hard to Sort out is this real is it not and so we get a little stuck temporarily and usually with something like that people can start to get a little bit of like oh okay so this is more of a i'm like yeah it's like if you have I don't know some other let's say physical. Let's say a physical issue. And it's not like, I don't know, Like I have a back issue. So like sometimes for me, Like. It's not because I. Necessarily always want to be moving and working out. Sometimes I don't feel like it, But I have to because I have a back issue. And if I don't, Other things will happen. Like things can get stiff. I might not be able to walk as easily. So it's like that has nothing to do with who I am, But it's something that's happening in the body. Yeah, And this is a really good point because education and knowledge is really important, Not only for sufferers, But also for lost ones. And when people will see, Will understand that OCD is really connected with the brain by chemistry and how OCD mechanism works, It will be easier then to understand these behaviors. Exactly, We have to make it concrete. Why are we doing those compulsions again and again? Why are we seeking for reassurance? Why we we stuck in our head and think about something that doesn't really matter. And there's also a lot more research coming to show exactly the elements, But we do know that there are some, There's indications that there's also some genetic factors that, You know, You have a predisposition and then, You know, Something can happen and it activates like, Like I, For a long time, For example, Didn't have things that you could say were really pointers. I think maybe I didn't have a little anxiety or a little things, But it really wasn't until there are certain stress stressors that happened in my life. I remember important big moments where suddenly it flipped and then I started having these experiences, But I didn't know what the heck was happening. I thought, Well, Maybe it's because of the stress, It'll go away. But then it wasn't really going away. Right. And so. That's the other piece of it is that, You know, It's not like it's just random out of the blue. It's like, No, There's already some kind of things that are going on. And then you take the environment, You take in what's happening, You put it all together. And it's like, You have the perfect storm, If you will, Where things can start to, You know, It turns on. Yeah, But but The most important thing is that we can speak, In my case. After my diagnosis, I'm really scared to speak about this and to speak with others, But when I opened my mind for speaking about it, For helping people, This is really game changer for me because I know there are many amazing people who don't understand what OCD is, But they understand that we are. We are people, We are we are human and we can we can have any problems with our body, With our brain and. . . It's so important also that we can ask for help and looking for therapy. And this is amazing because now when I speak out loud about this, And so many people write me, Lucas, You are really brave and this is amazing what you're doing. And I see that is really good thing to help others and breaking the stigma. In Poland and in the world, People think that everybody is a little bit OCD and this is also second thing that we can speak about because When I told my friends about this, They told me, Lucas, We have the same. We have thoughts that I can, For example, Hit the woman in the store or something like that. But they really don't understand how painful is that is this what we feel really inside and how MMMMMMMMMMMM I also have. . . Why we want to react for this thought and that is really, We need really much time for it and this really debilitating disorder. It's not only something like being organized or neat or something like that. But this is a really serious disorder and many people, I think through media, There are many movies about OCD, But movies when, Where we see OCD in funny way, And it's not so serious. And this is also really important thing. But people when when people see these movies, They think OCD is something funny or something. Something like like my character or something like that. Yeah, I mean, I think 100%, Right? There's been a misunderstanding. And again, It's akin to, It's similar to like, For example, Depression, PTSD, Right? For a long time, We didn't fully understand those, Right? This is just like that. It's in that same category. And you're right, For a long time, Again, Because you just see kind of these behaviors outwardly. So it became easy, I think, To start to create content around like, Oh, It's a cork. Oh, It's a little just funny, Weird thing you do. Right. And so these associations got made and that's how we work as humans. And now as we're, There's more kind of push towards, Um, You know, Talking about, And there's been research done on, You know, For humans, Intrusive thoughts or having just weird thoughts that we all have weird thoughts, But it's really different when you have a weird thought. And you can recognize it's a weird thought and you literally just, You dismiss it and you move on. Versus if you don't, You don't dismiss it. Yeah, Or something like common worries. Everyone has common worries and I'm worried about my marriage, About my family, But this is not OCD. Yeah, But people can. . . Yeah, People can think that Yeah, This is not a great point. Just you just worry about this or I have also scary thoughts and this is not something Yeah, Well we're getting into like what I call from ICB teaches to also say like I learned this and that treatment which is inference based there's like everyday doubts we have which which are common and they make sense but but then there's obsessional doubting and that process is completely different and learning to understand yourself, Right? Like you, I've had friends who are like, Oh, Christina. Oh, You have OCD. Oh, I have OCD. Is it OCD? Like, I like to, Like, I open my cabinets and then I need everything to be lined up. I literally stopped my friends mid sentence. I'm like, Please stop. I love you with all respect. But look, And I usually say the following. If you enjoy it, You like it, It gives you pleasure. Like it makes you feel good. Like that, That's a whole different topic than OCD where. You're not driven by the fact you like it. I'm like what you're driven by is you're so scared that something bad is gonna happen. Your anxiety is through the roof that you can't literally move on. You will see people so distressed that they feel like they need to do this behavior, Whatever that is, Over and over and over and over to try to I feel just a little bit better, A little relief. I'm like, Do you have that? Are you able, Do you get stuck and you can't move on? Or are you just gonna do it and you're like, Okay. And you go about your day, Right? Like there's a key difference between those two things. Yes, Sometimes I want people to just jump for a few minutes in my head and they will understand what really OCD is, Yeah? It's it's so hard to explain but but situation is Yes. Every day is better, I think. There are so many amazing people who want to talk about it and this really can change the situation and awareness. Yeah. Well, Like yourself, Right. We have, You know, Influencers nowadays, We have podcasts, Like I have my podcast, Right. We have other platforms and people. And I think it's, It's important that we keep advocating and, And people keep learning what it really is because still in the media, Um, I I'll see, And people will send me things and kind of point my attention to it, But people talk about OCD and they still mention it, Like the whole cleaning and I like, And, And again, That's more of like a personality. Like we call it OCD. OCD, Where you're focused on, You know, A lot, I think this is the right way to do stuff and there can be rigidity, But that's not OCD. And now, Thank God, We have more people who have bigger platforms and are more famous, Like Howie Mandel, For example, Is one. But we have more folks who are coming out and more sharing openly kind of what it is. And I think because we have more people with bigger platforms, Hopefully we can reach more folks with what it actually is. Yeah, And we can normalize. Yeah, Absolutely. And we can normalize situation with OCD and when I was last year in November in Warsaw in the Polish capital to record podcast I speak about OCD but the people think OCD is just checking doors, Checking windows and I told them about ruminations and about pure OCD because this is something what people don't see. They can see that we are sad or we are Mwah. We are close, We don't want to go somewhere, We think the whole day about something, But they really don't understand what we feel inside and what are happening in our head. And this is also important point to speak about because I think There are not so many people who speak about this side of OCD, About mental compulsions, About ruminations, And people don't understand this. Oh, A hundred percent. Like that, Like it's like, I'm one example I'll personally share. Like I was doing a lot of mental rituals and that's one of the, Not only were my OCD topics ones, I didn't know that was OCD, But also what I was doing in my head. I didn't know that that was, I thought I'm just figuring stuff out. I'm just, And I'm just trying to make sense of things. That's how I interpreted it. And when I learned about people ruminate and the different ways, And I learned about compulsive rumination, I'm like, Oh my God, It's me! Right. And so it's true. Um, I mean, Again, There's more, We talk more about it. It's getting better, But I mean, To your point, You know, We're going to have to talk about it for a long time. I mean, Even me, I got on a podcast, Uh, End of last year and similarly on that show, You know, We're talking about it and same questions like, Oh, Well, You know, If I, You know, If I, You know, Want to like just extra clean bottles for my baby, Is that OCD? I'm like, No, That's just being a good parent. Like any good parent, You want to just make sure your, You know, Bottles you're going to use to feed your baby are, Are clean and sanitized. Like that's, That's a standard everyday practice, Right? That's, That's different than if I'm now excessively cleaning them to the point where I'm actually, It's interfering with me, Let's say engaging with my baby, Right? Like these are the different, So it's just I'm only saying what's interesting is that you know, I find that we have to keep repeating and kind of keep saying it over and over, You know, This is what OCD actually is. This is how it feels. This is how it shows up. This is what's going on in the brain. And it's like, We have to just keep repeating it as many times as it takes till we reach a bigger, Wider audience, If you will, To understand. Yeah, And this is not our choice. OCD is not our choice. And there are also many people who I know that don't understand this, That I don't choose that I want to do these compulsions. I really don't want to have OCD, To suffer with this. And this is not our choice.