-[Vanessa] Hello! This is Vanessa Harris with Fun4TheDisabled.com. Welcome to Destigmatizing Mental Health, our series in which we explore the strengths that people bring to the table who have varying mental health disorders. We believe that there needs to be more positive representation of mental illness in the media, and we are committed to bringing that to you. This week, we will be discussing Obsessive Compulsive Disorder, a condition that affects 1 in 40 adults and 1 in 100 children in the United States alone. We will be diving into the struggles that people endure with this disorder, how it has shaped their lives, and the triumphs that they have experienced despite the challenges that they face.
[Sophia] How often have you heard people say phrases like: “I’m a little OCD, so I like to keep my room really tidy,” or “Please take off your shoes before you come in the house, I’m so OCD about that.” The word “OCD” is often thrown around casually and used to describe people who really like to be clean or might be slightly bothered by messes. Mainstream media has constantly portrayed OCD as the light-hearted characteristics of a neat freak, but what a lot of people don’t understand is that OCD is much more complicated than that. In fact, it’s one of the most misunderstood mental illnesses in society. Many people believe that OCD is just about handwashing, staying clean, and being organized. While this is the case for some, it’s not true for everyone as there are many different types of OCD.
-[Sophia] “OCD” stands for Obsessive-Compulsive Disorder and is a condition in which people get caught in cycles of obsessions and compulsions. It’s not some quirky personality trait, but rather a serious disorder that affects people’s everyday lives and everyday activities.
-[Sophia] “Obsessions” may be defined as unwanted thoughts, impulses or images that appear in a person’s mind and are difficult to control. These are often accompanied by very intense and uncomfortable feelings and can occur over and over again without the person’s control. This can include extreme fears of contamination, losing control, harming oneself or others, perfectionism, unwanted sexual thoughts, or religious obsessions. “Compulsions” are repetitive behaviors or mental acts that individuals engage in with the intention of counteracting or making their obsessions go away. They generally serve as a coping mechanism for reducing the anxieties of their obsessions. And people with OCD realize that this is only a temporary escape. Compulsions may be behaviors such as excessive washing and cleaning, checking thoughts or actions, repeating activities or body movements, mentally reviewing situations, or avoiding situations altogether that may trigger obsessions.
Similar to obsessions, not all repetitive behaviors or rituals are compulsions. In most cases, individuals with OCD feel the need to engage in compulsive behaviors out of fear and anxiety. These actions are often time-consuming, and distracting, and the individual would rather not have to do them. But although people with OCD face unique challenges every day, these challenges do not define them. People who live with OCD are some of the strongest individuals and their disorder doesn’t mean that they can’t live happy, healthy, and successful lives. It’s difficult for many to open up about their challenges because of the public misconceptions and stereotypes about the disorder that still exist today. However, there’s no guilt or shame to be felt about having OCD or any kind of difficulties with mental health.
-[Sophia] In order to deconstruct some of the myths and misconceptions of OCD, I sat down with Mollie and Tazia, two individuals who have lived with the disorder themselves.
-[Sophia] Could you introduce yourself to everyone and why you are here today?
-[Mollie] Yeah, absolutely! So I am Mollie, my pronouns are she/her. I live in Virginia and I have OCD, Obsessive-Compulsive Disorder. I also have social anxiety which kind of goes along with that a little bit, but I am here to help break the stigma around mental health and mental illness and just talk a little bit more about my experiences with OCD.
-[Tazia] Yeah absolutely! So I am an artist, a writer, I also currently work as a Peer Support Specialist for harm reduction, and then I’m also majoring in Disability and Human Development, so all of those [Laughs] fun stuff all come together essentially to work on making art and doing different activist work to help folks with varying mental health situations. And I am here because you wonderfully like, asked me with this amazing site that y’all are doing to be interviewed. So I’m super grateful to be able to talk a little bit about OCD, so thank you for the space.
-[Sophia] For those who don’t know, could you explain what OCD is?
-[Mollie] So OCD is Obsessive Compulsive Disorder. The “O” is “Obsessive” and that includes obsessions around all kinds of things, there are different types of themes or sub-types that they are kind of broken up into. But it involves a distressing thought or image or urge or sensation that somebody will experience, and then in order to reduce that anxiety and to get rid of that, you know, that anxious– those anxious feelings that come up from those distressing thoughts, they will engage in compulsion and that’s the “C”, it’s “Compulsive”. And the compulsion can be physical, it can be something you do outwardly to reduce that anxiety, or it can be mental, it can be a mental compulsion, it’s something you would do in your brain, of course, to kind of lower that anxiety. And over time, your– you kind of tell your brain that these compulsions have an impact and that they are lowering your anxiety, but really over time, they are just continuing that cycle of the obsessions. They are telling your brain that there is something to be afraid of and… they don’t work in the long run. The compulsions are what really keep you stuck instead of what keeps you safe.
-[Tazia] Or you know, having like, the fear that somebody is like, there at night in their home, and so having to check all the doors like in their house and things like that. So it– it’s a very… it’s a very complex, I think, disorder because of the different ways that it can manifest. But yeah!
-[Sophia] A lot of people don’t know that there are several types of OCD. Can you explain which one you have?
-[Mollie] I personally have dealt with what is called “Moral Scrupulosity.” So it is basically the idea of being a good person, but it will– the compulsions that I will give in to have really no bearing on being a good person. So it will be things like if I– if I type and I spell something wrong, my mind automatically goes to this, this dark place that I, you know, that I think I am uneducated or dumb or not, not a good, you know, I’m not putting on a good face. And so my compulsion would be to kind of reread things, to check things, to make lists, and to you know, make sure that I am kind of going through them in a way that makes me feel more comfortable. I’ve also lately been dealing with a lot of harmful OCD thoughts, which are, you know, everybody gets those images when you’re driving. You know, what would happen if I swerved my car into the other lane? That’s a common experience that everybody has at times. The difference with somebody with OCD is your brain gets kind of stuck on those images. And so you go though, “Well, what if I really went to do that? What if I’m ready to die? Or what if I want to die? What if I, you know, stabbed my partner right now? What would that…” you know, and you get those images that are distressing and uncomfortable and really hard to deal with. And so the compulsion in my case was things like avoiding knives, avoiding cooking with my partner, avoiding being in the same room as sharp objects sometimes, things that to the outside, you know, a person might seem kinda silly because of course I don’t want to harm my partner. But that’s, you know, that is the nature of the beast, so to speak, is that it is– it is distressing images or urges that you don’t want to engage in. But then it gets kind of, you know, it gets kind of cloudy in terms of the more you see them, the more it feels like maybe that is who I am, maybe that is the type of person I am. So those are really my kind of main types of OCD or themes that I’ve been dealing with lately.
-[Tazia] I think people, like, have the stereotype of like, somebody who just “needs something clean” in their home as like, what it is. When, you know, like even if somebody has that, there’s usually always a cause behind the behavior. So, you know, it’s like the stereotypes, like, are super bad and pervasive. But the one that I have, I have two different types. The first one is harm OCD, and so my brain will have intrusive thoughts either about like, myself like, hurting somebody if I don’t like, say… I have Narcan right here, so [Laughs] I’m at my work table. So like say if I don’t like touch this four times, then my brain is like, “You’ll hurt somebody or somebody will come and hurt you.” And specifically, mine is at night it mostly flares. And so it’ll have like those sort of intrusive thoughts. I also have the other type of OCD which is called “Just Right OCD.” And so my brain will kind of ruminate around like, am I doing enough for X, Y, and Z situation? Was I like, rude in this situation? And it’s like a constant reel of like, did I do that? Did I not? And it… It’s a time [Laughs].
-[Sophia] So what are some of the different kinds of treatments for OCD and what has worked best for you?
-[Mollie] Yeah, so the gold standard for treating OCD is called “Exposure and Response Prevention”, so it’s ERP therapy. It falls under the umbrella of cognitive-behavioral therapy, so I know a lot of people are familiar with CPT. But it is a little bit more specific for OCD particularly. So the “E”, “Exposure”, is basically intentionally exposing yourself to the triggers that cause your anxiety. So if you avoid, let’s say you have anxiety around driving, you would intentionally drive and you would, you know, maybe go further points as you progress. And then the “Response Prevention,” the “RP” would be preventing the response. So instead of giving in to the compulsion, you would learn tools to sit with that anxiety, to accept the anxiety, to accept the uncomfortable thoughts and feelings and urges, and not give in to the compulsion. And that is the really hard part because you have been so used to giving in to the compulsion to lower your anxiety. Like I said earlier, it doesn’t work, but your brain has been so conditioned to believe that it does. So that’s really the key, is preventing the compulsion. So you’ll learn tools, and strategies to work with a therapist. It’s really important to find a therapist who practices ERP specifically, not just CPT or talk therapy. But to really, to really, you know, work on those triggers specifically. It’s very particular to the types of anxiety that you’re experiencing.
-[Tazia] Also meditation I think is super helpful for people with OCD. Just to be able to be as present as you can be with the thoughts that are happening because then that allows you to, you know, recognize that “Hey, this like isn’t real.” Like what’s happening in my brain and things are gonna be fine. I also think like, art’s been really helpful too just to, you know, like… I think in general art is really therapeutic for a number of reasons. But I think it can be a really good vessel to like, but what you’re feeling inside on a piece of paper and look directly at it. And also, if you want to, throw it out if it’s too much, but like it can be a really, really good, I think like, self-reflection. So I’d say like, those are the major ones.
-[Sophia] Do you think that you’ve learned a lot about yourself? And do you feel that you’ve become stronger as a person?
-[Tazia] Yeah, I think so, I think that’s a great question too. Like… ‘cause I think just because like, very early on, I had to be like, “Oh, this is something that’s happening in my brain, let’s get to the root of it,” as a form of coping. Like, it helped me be a lot more introspective, sometimes too much, I will say [Laughs]. But like, it really helped me know myself a lot better and I’m really grateful for that. Even though like– and I think too like it’s important to say that I’m not fully grateful to OCD, I’m more grateful to myself because like, you know, any mental illness can be like a really troubling thing to go through. But like, the resilience is owed to myself and also the skills I’ve developed. And like for everybody, regardless of the situation, like deserves to be, you know, grateful to their own strength so… yeah.
-[Mollie] I think I’ve definitely learned a lot about myself, that’s really… a really big piece of something that I’ve gotten out of therapy is figuring out a little bit more of who I am. OCD is ego-dystonic, which means it goes against your values. And so the fact that my OCD latches onto my dogs, for example, my husband, it kind of makes sense because those are things that I really value and I really care about. And so that is why the OCD latches onto them and produces those, you know, distressing images and thoughts. And so that is something I’ve learned a lot throughout my therapy, is figuring out what I value in life. I obviously value being a good person and that’s why, you know I kind of, it kind of latches onto that as well. But yeah, I think learning that I am so much more competent than I previously thought is something that I’ve gotten from therapy too, is recognizing my ability to do things that I really didn’t think I would. Like I had said, I’ve been living my whole life like this, and so I did not know that there was another way of life, to be honest. So that’s something I’ve learned, it’s given me a lot more confidence, a lot more, you know, an ability that I know now that I have. I think it has made me stronger in some ways because it allows me to empathize with people a little bit more. And I am able to, you know, recognize when other people are struggling because I have been there and I know what it’s like to struggle. And to not be able to or not feel able to talk about it. And so I think that in that sense it has made me stronger. It has, you know, brought me closer to some people that also have OCD that I can share in our experiences. So yeah I think, I think in some ways it has made me stronger.
-[Sophia] Why do you think there is so much stigma around OCD? What are some assumptions about OCD that you have heard in the past?
-[Mollie] Yeah, and it’s so upsetting every time you watch, a TV show or a movie and they say, “Oh I’m so OCD,” or “The weather is being so bipolar.” Things like that are just heartbreaking because there is a clinical diagnosis for these things, and the more we minimize them, the more we talk about them in a light that is not true, the harder it is for somebody to get help. And again, if I had known that this was a thing 20 years ago, I wouldn’t have spent my whole life thinking that OCD was about cleaning. And I think that can be just really frustrating and hard to change. It’s not something that changes overnight.
-[Tazia] Then I think like stereotypes for OCD in general, I think… I have a lot of feelings about the words like “crazy” and “insane.” I think they’ve had like, a very violent history for multiple identity groups. And so people will often say that which is really dangerous. And then people will also, you know, I think the other thing apart from “crazy” or “insane” is people think that people with OCD are lying because I think a lot of folks with OCD have had to figure out how to hide their symptoms. And like, people think that they are “presenting as neurotypical” and so then they’re like, “But you’re able to do things so like no,” you know? [Laughs]. Like that’s not real, I’m projecting my own psyche onto yours, like that whole thing. And it’s like… no. But yeah.
-[Sophia] What do you want to see change in society in terms of the perception of OCD and the treatment of individuals who have the disorder?
-[Tazia] So on the like, I guess social, like, intrapersonal level, I think what would be the most helpful is honestly like, people really making an effort, particularly those who don’t experience OCD. And I also do wanna say that like, there’s a lot of people who have OCD that don’t realize that they have it. Particularly because I think it’s a lot of folks who don’t have symptoms who are like mine. Who it might be like… I don’t wanna say smaller ‘cause I don’t think comparatives are super helpful when it comes to talking about mental health, but like, I guess not as intense of symptoms. So with that being said, preface. I think that like people who don’t experience OCD, like, it would be really fantastic if they could– if they see something, to call it out. I think also just having like a conversation with your friends of like, “Hey, you know, I know maybe we haven’t talked about this before, we’ve kinda talked about it in passing, but I wanna know like, you know, if there’s any symptoms, mental illness-wise, that like you wanna talk to me about that like maybe I can help,” in terms of if I see that they’re flaring. Like you know, do we have like a, kind of a… support response plan. ‘Cause, you know, if there’s anything that you haven’t felt comfortable to talk to me about, I really wanna make the space that it is a thing that we can talk about. Because like, yeah, like I’ve known people for years who I just didn’t tell because I didn’t– I thought that they would think of me differently and I think just like, really vocalizing that to your friends and like, close peers is really important.
-[Mollie] I think it’s really important for schools to have mental health training. I know I was always really interested in psychology, so I always took psych classes in high school and college, but that was my choice and I think if somebody hadn’t been in that class, they wouldn’t have gotten that understanding of it and that knowledge. So I think even starting in elementary school, there are a lot of ways that we can talk about mental health that is not, you know, scary. You don’t need to go into details, but just kind of laying down the basics of what it means to be a human with a brain and to have these experiences that other people are sharing I think is a really important big step in schools and in governments. In terms of, you know, just in general, I think— I think again just recognizing, you know, what it really means. Do your own research, talking about things that you are knowledgeable in. I think the media needs to have… you know, so often there are people in shows or I’m thinking of like, Glee with you know the one character that had OCD and you know, she might have done a good job in some ways, but I think like that was her entire character. She didn’t really have much depth to her other than, you know, having this mental illness. And I think it needs to be more– more talked about, but also in a way less talked about in the sense that, you know, that’s a part of a person, but it’s not all that they are. And I think if there were people in the media that had OCD or had Bipolar or had Schizophrenia, that, you know, but they were stable and they’re not portrayed as this, you know, out of character, you know, person. Then I think it would be a little bit more relatable to recognize that they’re just people, they’re not, you know, they’re not their diagnosis. That is a part of them, but it is not all of them.
-[Sophia] If you could offer just one piece of advice to others who have OCD or to someone who thinks that they might have OCD, what would it be?
-[Mollie] I would say that they’re not alone, that there are– there is a whole community of people, there’s a whole world of people out there who have this as well. There is a name for it, there is an effective treatment for it. My advice would be to reach out. It can be really difficult to talk about what you’re experiencing, but I think it’s even more difficult to not. And a lot of times, to live in your own– in your own mental illness and to not share it with other people is a really not– not a great way to live. And the more we talk about it, the more we’re open about it, the more we’re honest about what we’re experiencing, the more we can help others and the more we can learn. And I think, you know, doing research, and recognizing other people with this illness is a really big step to take.
-[Tazia] I would say that you know, I think this is kind of like a multiple part thing. I would say 1) like you’re not a burden for having– for needing help for having symptoms, especially if they’re incredibly intense. And I’d also say, you know like if there are folks around you who might not understand now, there will be in the future. And so at the end of the day, what deserves to be prioritized is your health and your wellbeing. And so, you know, it’s not a burden on anybody around you to need help, and you deserve it. And it’s not a burden to talk about your symptoms too. Like you’re allowed to be vulnerable. And I think while it shouldn’t be… being vulnerable shouldn’t just be done for other people, but it really will help them in the long run. And so it’s like a, it’s a mutual thing with you being vulnerable about your symptoms, it helps others too. Yeah.
-[Sophia] Yeah, thank you so much, and thank you for sitting down with me today. I also wanted to give you a chance to promote anything if you want or shout anything out.
-[Tazia] Ooh, okay! So I would like to– I mean, if you wanna find my art, it’s on my Instagram @TaziaCira, but also I would really love to shout out @IllBulletin, they do mutual aid fundraisers on their page and post when folks need help. And they’re on Instagram as well, they’re super great, and the funds go directly to the people who need help, particularly disabled folks so those two!
-[Sophia] Yeah! Everybody, make sure you check those out!
-[Sophia] Thank you so much again! It was really great to meet you.
-[Tazia] Yeah! Thank you for conducting the interview too, and good luck with school as well!
-[Mollie] I am on my personal Instagram, it’s @Its.Always.Mollie with periods in between, so “Its.Always.Mollie.” And then I also, if I am allowed, I also work for NOCD. So it is an online therapy platform that has therapists in all 50 states, in Australia, Canada, and the U.K. It is where I went through my personal therapy and it is amazing. They have a free app, they have free support groups for people with OCD and family members of those with OCD. So that’s where I would say if you are struggling if you want to talk to somebody, reach out to them, reach out to me. That’s a good place to start.
-[Vanessa] A special thank you to Mollie and Tazia for sharing their stories. It was truly inspiring and informative to hear about your experiences living with OCD. To those of you that do struggle with OCD or other related mental health issues, you are not alone. We have a long way to go with destigmatizing mental health issues in our society, and by continuously educating ourselves and others, we will move towards a more supportive, understanding, and inclusive world. This is Vanessa Harris with Fun4theDisabled, signing off. Bye-bye!
[Relaxing jazz instrumentals]