Subscribe Here

How many times have you heard someone say “I’m being so OCD” to describe a random bit of preciseness or when they need to double-check something?

Whether it’s newspaper articles falsely linking OCD to violent behaviours, unhelpful social media memes that perpetuate mistaken concepts of “intrusive thoughts”, or the names of brands which trivialise the experience – misinformation, and perhaps sometimes active disinformation, about OCD remains rife.

OCD (Obsessive Compulsive Disorder) is one of the world’s most misunderstood mental health disorders. For a long time, it has been portrayed in the media as a personality quirk that has something or other to do with cleanliness. In fact, according to the World Health Organisation, it is one of the most disabling conditions on Earth. Whilst ‘contamination OCD’ is the most common subtype, this strand of the condition is grossly mischaracterised by the media, who also ignore the fact that most forms of OCD have nothing to do with germaphobia.

In this special collaboration with the OCD Stories podcast, Ellie and Will chat to Matthew Antonelli from the IOCDF, and Stuart Ralph, from OCD Stories, about the impact OCD myths can have on those with the condition – and what we can do to spread positive messages that encourage people to seek the help they need and deserve.

Links

Follow @livelymindspod on X, Facebook, Instagram, LinkedIn and more at https://www.bio.link/livelyminds

Please note that this show does not constitute medical advice and is not a replacement for seeking professional help. You can find our more about the show and get signposting to support on our website anyamedia.net/livelyminds

Transcript

W: In this episode, Ellie, Stuart and I will be chatting with Matthew Antonelli. Matthew is the Director of Operations for the International OCD Foundation based in the USA, founded in 1986. Since then, it has grown into an international organisation serving a broad community of

individuals with OCD and related disorders, their family members and loved ones, as well as mental health professionals and researchers around the world.

 

E: The UK mental health charity Mind highlights how misunderstandings around OCD can lead

to further stigmatisation of those who experience it. 

 

W: Whether it’s newspaper articles falsely linking OCD to violent behaviours, unhelpful social media memes that perpetuate mistaken concepts of intrusive thoughts, or the names of brands like one in my city called OCD Cleaners, which trivialise the experience, misinformation, and perhaps sometimes active disinformation about OCD remains rife.

 

To begin with, Matt, would you be able to start off just by summarising how widespread a problem you think that misinformation surrounding OCD actually is?

 

M: Certainly. Both in my lived experience having OCD and my role at the IOCDF, I constantly see how widespread this issue really is. When we’re talking about the last widely accepted survey of general population impacted by OCD, we’re looking at between 2 and 4% of the population. And when you think about how huge of a group that is, with, you would expect that a lot of the culture to understand accurately what OCD actually looks like and what the disorder is, we constantly are finding that misinformation is even more readily available than the accurate portrayal and resources surrounding obsessive compulsive disorder. We hear from our advocates anecdotally all the time to the hundreds and thousands of people they individually connect with that everyone knows what OCD is. And then when you talk to them, it’s really that no one knows what OCD truly is. It’s this understanding that the general cultural understanding of OCD is inaccurate for the most part. And that, you know, it’s something that we intentionally try to dismantle across the board as the foundation, correcting that misinformation and putting out accurate descriptions and resources around OCD. But we consider this one of the greatest challenges that we face in the OCD community, this misinformation and inaccurate understanding of what OCD is.

 

W: Stuart, is there anything you’d like to add to that?

 

S: Yeah. I mean, you know, Matthew was spot on. It’s really unfortunate about how little people actually understand what OCD is. I mean, often in my private practice, when people come to me, they’ve come to me because they know they’ve got OCD or they think they have. But with my podcast, the amount of people that have come on and said it took them years and never realised it was OCD or the amount of even the amount of professionals they went to that diagnosed them with like random diagnoses that aren’t anything like OCD, which baffles me how that ever happened. And it’s way more common, unfortunately, than you’d like. And yeah, the amount of people that just went years and years and years because of misinformation, and then when they finally got the correct diagnosis, they were shocked. They were like, “Well, I thought my psychiatrist, psychologist, whoever was, was wrong because I’m not neat and tidy, so why are they giving me this label of OCD?” I’ve heard that phrase like so many times on the podcast, which just shows you how even sufferers, before they know what it is, are so clueless and it’s not their fault. It’s just there’s been a bad batch of information out there for many decades.

 

E: Yeah. 

 

M: And I’m so glad you said that, Stuart, in terms of personal understanding of your OCD as well. I had an OCD diagnosis when I was in my teens and didn’t receive proper exposure response prevention therapy until my 30s. And the misinformation that I was confronted with my life was, “Yeah, you may have tendencies, but your OCD is not so bad that you need treatment.” So even someone who understood the disorder relatively well compared to what we’re seeing culturally, I still rejected my diagnosis to a certain degree because I don’t look the same as the representations I’m seeing of this. I don’t, when I talk about what I’m struggling with, it doesn’t always align with how the media portrays OCD. So I would always say, I’m highly functioning. I’m not like those people who get treatment. And then how life changing it was when I finally did get treatment and confronted those old thoughts of myself. And I wanna share this message so that folks know the sooner you can get into effective treatment, the sooner you’ll be suffering less. So it all starts with understanding truly what OCD is and, and what the proper treatment modalities are.

 

E: That’s really surprised me, that figure that’s stuck in my head. Between 2 and 4% is really, really huge as a number of people with OCD. What exactly are the most common myths and incorrect information that comes out?

 

S: The big misconception is that you have to be neat and tidy. And I remember always growing up, I was really messy. And you know, again, the amount of times I’ve heard that through my podcast and through my clients who aren’t hiding anyway. Obviously you can have OCD and be a neat freak, so to speak, but it’s not exclusive. You don’t need to be neat and tidy too. Where that got warped in the media was there’s another diagnosis called OCPD, which is Obsessive Compulsive Personality Disorder. And that’s not sort of an anxiety issue or disorder, it’s more of a personality issue. And those people suffer too. I don’t wanna take that away from them, but that is much more about control of the environment, maybe people around you, exactness. So I’m no expert in OCPD, so, but I think the media latched onto that and ran with it. And TV shows ran with it because that was interesting to see. People order stuff and, and have it in straight lines and obsessively clean. But obviously, with OCD, if they are doing those things, which you can do as a compulsion in OCD, doing it because you’re deeply afraid of something or anxious or there’s some other feeling like disgust or guilt. So I think, yeah, they, they kind of ran with OCPD as a representation of OCD and I think that hasn’t changed. But again, even that, they’re doing a disservice to people with OCPD, let alone OCD. So, but I think that’s where that misconception came early on. 

 

M: I definitely see those themes as well. I think the cleanliness and the germaphobia are kind of hallmark symptoms that have become stereotypical and as Stuart said those can definitely be themes that an OCD sufferer will struggle with, both of which are manifestations of my OCD specifically. That being said again, kind of the magnitude of that, me being able to hide my compulsions or to to have a certain degree more control compared to some of the other representations I’ve seen of people who suffer with germaphobia. You know, I would still shake your hand, even if I thought about it for the next two hours till I could wash my hands. Whereas, you know, we all have kind of, especially the 1990 version of Howie Mandel, who would wear gloves everywhere he went and kind of owned that as his OCD symptom. So those images get put out into the world and everyone thinks like, okay, so that is what OCD is, when there are so many other categories of intrusive thoughts, of, of, these images, of the imagery that your brain creates are your thoughts. And that is not your desires, your hidden nature, this hidden aspect of who you are. And I think that part of OCD is missing from the cultural representation. So what we see are the over cleanliness, the lining pencils on your desk in a certain way, which again, not to take away from those, those are your symptoms, that is only one part of this disorder. And the larger themes are not talked about as much because they’re difficult to talk about, which can be, you know, violent obsessions that you’re so scared of ever hurting someone or doing something wrong that that’s all you can think about. And those repetitive loops that you get stuck in with those intrusive thoughts and they can be sexual orientation based, they can be harm based, safety, these things that are much less prevalent and much less talked about in, in the OCD community. So then when you’re struggling with those intrusive thoughts and you maybe even think, “Oh, I may have OCD,” there’s much less resources out there that are going to even point you in that direction. Luckily, the work Stuart does and the work we do at the IOCDF is putting that correct information out into the world. But it’s not just about cleanliness and just right OCD. There are so many more categories impacting these individuals, and some of them don’t even know that or are embarrassed to even talk about it. And that misrepresentation and lack of accurate information leads people to reject their own diagnosis and not pursue treatment, ’cause it’s not exactly what’s aligned with the cultural perception of OCD.

 

I believe statistically it takes about 14 years on average from when you first have OCD symptoms to then actually receive treatment. That is mind blowing to me. There’s no other comparable disorder that has that type of treatment-resistency length. And mine works out almost to the year, to 14 years. So it’s, it’s something that I feel so passionately about making people aware of. We have a long-term vision at the IOCDF of shrinking that time from diagnosis to treatment, from symptom onset to treatment, as small as possible into months as opposed to years. But that’s our long-term vision and it’s gonna take a lot of work and communication and corrective resources to, to accomplish that goal.

 

W: And I think insofar as people talk about intrusive thoughts that are more around violent themes or so-called taboo themes, there’s also, I think, a huge amount of misunderstanding, and misinformation about that as well isn’t there, because the frequent misunderstanding that I see crop up time and time again perhaps most notoriously in the TikTok social media theme “my intrusive thoughts won” is the belief that intrusive thoughts in OCD represent hidden desires and I think that’s one of the most dangerous misconceptions about OCD personally. I just wonder whether you can both speak to that starting with Stuart. 

 

S: Yeah I’m glad you raised that intrusive thoughts or obsessions or OCD thoughts, worries, they’re ego-dystonic, they’re, they’re against the wishes of the person. The person doesn’t want them, they’re repugnant, repulsive to the person, hence they do compulsions to get rid of that. This whole trend of “letting my intrusive thoughts win” is really just a bunch of people who are doing silly things and I probably would have done that once, you know, do silly things, film it and then put a catchphrase over it, which is what they’re doing, right? So not really letting their intrusive thoughts win because we know from a study like 10 years ago or something, almost everyone has intrusive thoughts, dark, scary intrusive thoughts. Those people just don’t listen to them. Of course, I bet they wouldn’t want to let those intrusive thoughts win. They’re just letting the intrusive thoughts that are kind of funny, felt like eating all this cake in one go, “let my intrusive thoughts win”. Yeah, it’s kind of funny. It’s not really scary. We all have that thought of jumping on the train tracks, not we all but a lot of us.I do, it’s not part of my OCD.

 

E: Yeah

 

W: I never want to let that one win because I don’t want to jump in front of a train.

 

E: So I was thinking that about that hashtag. I was like, whatever. I think, well, if it was an intrusive thought, it wouldn’t be funny if it won. Because by definition it’s intrusive. And if it’s won, whatever it is, that’s a distressing experience for your intrusive thought to have won. It’s horrible.

 

S: Yeah, no, exactly. So it’s, it’s a horrible trend, But it also just shows you the power of social media and how things spread like wildfire. And as soon as there’s a bit of misinformation, like it goes crazy. But yeah, these people don’t know any better. They’re not trying to hurt people or spread misinformation. They just, they’re scrolling through TikTok. They’re not taking a second to fact chat, right? And none of us do really, most of us. So it’s just a really unfortunate trend.

 

M: And I think with that lack of understanding, even if it’s coming from, we’ll label as “innocent place”, it still becomes a cultural representation of intrusive thoughts for those who are suffering. So then if you’re seeing this message out into the world that this is something that could win someday, that could just add to the fear and isolation and self-hate that can so often come with an OCD diagnosis. You know as, we’ll get into more later, a widely known news outlet recently published an article connecting extremism with OCD, a diagnosis. And it’s just these types of things have to be, we have to put out accurate information and we can’t imply that someone who is having an intrusive thought, that those are their actual desires and that, that may happen someday. It’s the exact opposite, you know, and I think a lot of times we’re so petrified of our intrusive thoughts that before a proper diagnosis and treatment, we’re afraid of our own thoughts and that avoidance of confronting what you are petrified of, what causes you extreme discomfort, actually perpetuates the loop of your symptoms. So the more you can experience appropriate treatment through exposure response prevention, you’re going to confront those thoughts, which are just that – thoughts, not actions, not who you really are. And that’s going to help correct this narrative.  I think like you’re saying Stuart, the stuff on TikTok is, they’re viewing it as harmless, but you’re not, the people posting that aren’t thinking about the general theme of misunderstanding around intrusive thoughts in OCD that this is perpetuating.

 

E: Can we make a distinction between intentional disinformation on the one hand and misunderstandings? So like accidental misinformation on the other?

 

M: I think very clearly through the communications work we do, we see that there are these two categories of misinformation, right? The folks who are intentionally putting things out there, whether it’s for profit or for personal gain, we had this whole, I almost don’t even want to mention the word, but we had this whole celery juice trend a few years ago that there was this person that I will not name by name, that put out into the world and paid campaigns and social and articles about how drinking celery juice will cure your OCD.

 

E: What?

 

M: It was shocking Ellie. 

 

E: You’ve not heard of that. 

 

M: And I’m glad you haven’t, but you know, even with-

 

E: But obviously a lot of people did.

 

M: Yeah. And within our community, individuals were reaching out to us that, “hey, treatment’s hard. Going through ERP is tough. I don’t want to be exposed to my fears and to my triggers. I just want to drink celery juice.” And we had to be like, “Wait, hold on. No, no, no, no, no.” This is the recommended frontline treatment for OCD, research-proven ERP with certain medications, specifically SSRI. Beyond that, these other individuals who are putting out unproven treatment modalities such as celery juice are pulling people away from the treatment that they need. So those types of things I label as intentional disinformation, whereas kind of everything we’ve spoken up to to this point could be lumped into more of a general societal misunderstanding.

 

I think on both, there’s a challenge for us to dismantle that existing information. And that’s kind of the main challenge we face. Whereas if you’re teaching someone about epilepsy or something about becoming senile, these different things that we kind of know about, but there’s not much information, you just come into that situation ready to learn with OCD, the majority of individuals think they know. So we have to not only teach them the correct information,

 

E: Yeah

 

S: We have to dismantle their inaccurate understanding. So I think both are prevalent in our community and both are priorities for us to continue to dismantle because they all have negative effects on our community. Sometimes we’ve had more innocent misunderstandings using, use of the term during COVID, we saw a spike in people offering OCD resources, which were gloves and masks and antibacterial and things to that nature and it wasn’t anyone intentionally trying to put out harm. This was an individual with OCD who thought he was helping the community by developing this product and having a conversation with him about how to put this out into the world and talk about OCD and treatment, changed him completely and became a champion of the work we’re doing, so often that misunderstanding can be pivoted to understanding and to really continue to expose individuals to proper treatment recommendations and a more thorough understanding of what OCD is.

 

E: That’s such an important point, isn’t it? That actually not knowing anything is different and in some ways less dangerous than thinking you know the thing but your knowledge is just wrong.

 

M: exactly 

 

E: Yeah, it’s a good point. ‘Cause you have to actually untie all of that and then before you can even start educating the right way kind of thing.

 

M: Exactly right. The fact of the matter is going through treatment is going to be uncomfortable because your brain is learning a new way to manoeuvre through these triggers. And that is just an important part of recovery and going through a treatment journey. But by putting out these treatment recommendations, or I should say treatment recommendations that haven’t been rooted in peer-studied research, really are just hurting the community. So we do have our OCD Awareness Week. It’s in October each year, and this is a time that we really tried to globally influence the conversation being had around OCD, as well as different resources and events that we do throughout the year where we’re just pumping that accurate information into the world and connecting with individuals who may think they understand OCD and are unintentionally also causing harm to the OCD community as well.

 

S: I think, you know, Matthew did a really good job there. I think just to add from like a script writing and screenwriting point of view, if an OCD character or character who’s meant to have OCD is now in films and TV, and it’s just a really poor depiction of what OCD is, we’ve got to at some point hold these screenwriters accountable and say, “You really did not do your research here.” Because 30 minutes of reading through the ISDF or any other OCD website, you’re gonna find out about taboo intrusive thoughts and all these other things and the nuances and do a good enough job at portraying. So if they haven’t, they’ve either not done 30 minutes of research or they have, and just think, “No, that’s not interesting. I wanna portray it in the way I think OCD is.” And at that point it’s neglectful and yeah, isn’t great. And then the rest of the lot I see is just innocent. And also I think if something’s so strong in society, we often don’t question it. And we, well, if so many other Hollywood movies have done it and TV shows, then it must be real. So why would I question it? So I think that’s just what’s perpetuated it as well. And schizophrenia is the same, right? That’s been massively misunderstood for so many years to be fair, a lot of the mental health disorders. But obviously I think OCD more than any.

 

W: Matt, could you tell us about the IOCDF’s awareness raising campaign, which was inspired, if that was the right word, by the New York Post articles that you had some major issues with?

 

M: This was something that truly left such a negative impact on our community. And the article that was shared was not only inaccurate and dangerous, but it was detrimental to the OCD community. We felt on behalf of the community we had to speak up. This is not true and it’s damaging and it’s perpetuating inaccurate information. And it’s going to scare individuals away from their accurate diagnosis if they think that saying “I have OCD” is now going to be linked to extremism and to terrorism and to violent public acts, then they’re going to be even scared about admitting to themselves, let alone to a loved one or a treatment provider to get them on a healthy treatment journey. So again, we felt it was really our responsibility to the community to issue a really strongly worded letter to the editor and ask for an immediate, call for an immediate retraction, and they refused. So that is why we-

 

W: Sorry to interrupt, could you just briefly summarise what the article essentially said?

 

M: And I don’t want to give too much light to this, but they were inaccurately speculating, similarly to what we were talking about moments ago, about intrusive thoughts being how that person really wants to behave just buried under the surface, they were implying that those who act on extremist actions are actually struggling with OCD and intrusive thoughts, and it led them to take those actions. It is false to make that implication. As we continue to talk about these intrusive thoughts cause such fear that a lot of us are paralyzed with agoraphobia to even leave the house because we’re so afraid of the chance of causing harm to someone else. And it, you know, is the foundation for a disrupted life dealing with those disruptive thoughts, intrusive thoughts, and disruptions to life. To equate that to someone who has done a mass shooting or other violent acts, there is absolutely no research to back this up. And there’s not even anecdotal evidence that this is true. So to come out with a nationally publicised article was just disgusting, quite frankly.

 

Yeah. So we reached out to them, attempted to correct them and provide accurate information. As Stuart said, some individuals are not looking for accurate information and they want that clickbait and they want something really shocking to drive in advertiser dollars and things like that. So we decided to turn this into a campaign that if they weren’t going to be honest and

correct their misinformation, that we were going to share that letter to the editor and our advocate group helped spread that message. We had different blog platforms and paid media opportunities to really get that accurate information out there. What are intrusive thoughts and what does that have to do with OCD? and how none of this is linked in any kind of  research-backed way to extremism or violent acts.

 

So we’ve seen an overwhelming response from our community thanking us for standing up for them. And we don’t view it only as standing up for them. This is, we are this community and we are fighting this fight on behalf of them, but it is also something that we would do without an audience as well, because this type of misinformation has been going on for years, if not decades. And now it seems to be more shocking to get even more clicks. And we really need to make these, take the stance, make these big statements so that news platforms, if you can even call it that, stop trying to take advantage of the OCD community and to, to spread this false information.

 

E: Stuart, you kind of touched on this before about how by definition because your OCD therapy centre is specifically for OCD the people who come to you as clients probably already either have an OCD diagnosis or think they have OCD but within that to what extent do you find that there’s still misunderstandings of what it is? 

 

S: Yeah they’re pretty well read by the time they get to me or any, any of our therapists they may even listen to the podcast yeah in which case they might know OCD better than some mental health professionals. Some of my clients, I’m like, you’re probably smarter than me on this. Like the way the matter they’ve read on OCD is insane. So yeah, I don’t, I mean, it’s more the nuances that I see. So they, I guess there’ll be, there’ll be parts of OCD that they never thought was OCD. And then I might share something and they’ll be like, oh yeah, I do that. I never realised that was OCD. So there’s lots of little things like that, are more bringing on the nuances for them online to help them understand that that’s OCD. But yeah, the general gist of obsession, compulsion, emotion, they kind of, yeah, they know inside and out.

 

M: I’m sure you see Stuart as much as we do, the amount of professional clinicians out there that are not up to date in OCD diagnosis and treatment recommendations. And there’s a real thirst for that knowledge for OCD. And we have so many individuals who come to our annual conference, the IOCDF’s annual OCD conference, looking for an introduction to OCD who have gone through graduate medical school programs and have never had appropriate training. 

 

E: Wow

 

M: And until they came across a patient who,as Stuart is describing, is telling them what OCD is, a lot of these clinicians label that as something that they need to have further education on. So we’re constantly finding a never-ending amount of clinicians who want more training. So annually we increase our training opportunities, we try to find new funding to be able to train more professionals. The fact that even at graduate level studies they are not prioritising OCD as a learning opportunity is really surprising and we wanna make a cultural impact with these universities globally in the next five, 10 years or whether it’s information we develop or partner with these, these universities, but to make sure that these graduate medical professionals and not limited to therapists in psycho ed either, but to have GPs or social workers or school-based professionals be able to have access to this training. And we put as much of that out into the world as we can, but we are working strategically to figure out how to reach just as many clinicians as possible with that accurate, informative, research-backed training.

 

W: The misunderstanding amongst the medical professions is indicated through what you were saying earlier, Matt, about how long it can take for somebody to actually get an OCD diagnosis, even just as you say, having better training and more awareness raising amongst the health professions could in itself be a huge step forward in terms of addressing OCD.

 

M: Exactly right, and the IOCDF takes that responsibility very seriously, what is the best way to get this information out to the general awareness campaigns? It’s just as important how are we getting out these accurate training opportunities for our professional community as well. So we have these multi-pronged approach, but it’s really all centred around the same thing, making sure that everyone understands what OCD is and those who are suffering have immediate access to care and treatment.

 

W: This takes us on very neatly to the last question, which is just to find out how you both think

we can start challenging disinformation and misunderstandings that surround OCD and raise

awareness of the reality of this condition, Stuart, 

 

S: We absolutely have to tear down the old, as in obviously what the IOCDF are doing with the New York Post and people like that and what was it Target? Is it Target? Did the Christmas, obsessive Christmas disorder sweat up? Yes.  Yeah, so, so many, and there’s people in the UK like it too, that do all that type of stuff. We absolutely need to tear those down and correct them and hopefully get them to make public statements. And maybe it’s innocent, right? And they won’t do it again. Although I think some of them are repeat offenders, but we also need to keep pumping out good information. And that’s, that’s my passion and that’s what I do with the podcast. I’m focused more on just putting the correct information out, but both, both are needed. And then much more in classrooms, you know, through schools and all of that. And I know the ISDF have a program on that. I’m sure Matt will talk about. And then the other thing on top of that is, you know, I hear all the time, probably once a month, I’ll be in a shop or somewhere like that. And I’ll hear someone say to their friend, oh, that’s my OCD or, and they’re referring to something that clearly is an OCD. And it just makes my skin crawl, but I’m not confrontational enough to go, that’s not quite what OCD is. Like this is what it is, go listen to this or this or read this. That’s not me, I kind of just pass it because I’m focused on kind of putting information out there. So I guess I just want to throw it out there that if you do want to confront people on that, do it with compassion because they may just be harmless and misinformed and once you tell them, hopefully they’ll take it on board and change. They might be idiots about it in which case just walk away. But I guess don’t, don’t feel the pressure to have to have that conversation. You’ve got to look after yourself as well, ’cause if you get in a, not actually a physical fight, but a verbal fight with them, then that might ruin your day and make you feel worse and trigger your OCD beyond belief. So if you’re up for it, do it. If you’re not, don’t feel the pressure.

 

M: Yeah, Stuart, I agree with everything you said. I think from the IOCDF standpoint, we are also trying to put out as many tools and resources, accurate research-backed information as possible, have as many opportunities throughout the year for awareness raising campaigns, through policy advocacy on a government level, through professional trainings, which not only train clinicians, as Stuart said, we have an anxiety in the classroom module as well that helps school-based professionals or even parents or even children who are old enough to know they’re suffering to access these resources on the iocdf.org website. We really try to put all of these stigma reduction efforts as many multifaceted approaches as possible. The general awareness raising campaigns will go through all of our social media channels, paid print media, podcasts such as this, other media opportunities that are presented to us through the year that we have all the resources, we just need to continue to amplify our platform, which as a donor funded organisation is made possible by our loyal community. And we want to to give back in that way and continue to push this mission forward. So again, I talked about OCD Awareness Week before, but just moments like that, that we can really spread the truth and celebrate and champion these events and global opportunities to really inform, you know, what OCD is and to further that mission.

 

On a personal note, I think it also starts at home. Just having these conversations with loved ones, with people that you know. When I became most comfortable with my diagnosis, especially following accurate treatment, I started talking about it with people in my life and not in any kind of preachy way, but just to share my experience and the amount of individuals that were like, you know, could see parts of themselves in that and understand the disorder more. Some of them even helped grapple things that they were struggling with. This is a prevalent disorder and I think the more we talk about it the more we’ll see, “Oh, I have that,” or, “Oh, I have a cousin who has that,” or, “My co-worker,” or, “My grandpa.” You know, we start making these connections and it really starts to dismantle this information in a grassroots way. And, you know, if you make a million small little fires, eventually it will turn into a big fire. So it’s these multiple pronged approaches that we take.  And I think as we navigate through as a society, the only way we’re really going to have successful treatment of this disorder is for all of us to understand what OCD is. Not just if you have it, not just if you treat it, not just if your brother has it. It’s about a global and societal understanding of this disorder. And that’s what we combat every day trying to dismantle. So if you are someone who’s suffering or you do have someone in your life who’s looking for that accurate information, going to our site, iocdf.org, is a rich resource and it will help you find ways to advocate. If you want to help spread this message, it’ll help you find treatment if you’re looking to prefer a professional. And countless other resources just to explore and to go through, but those are the types of things that we just need to continue to find ways to amplify. And that’s really how we’re going to see the needle push in the right direction around this.

 

E: Thank you so much. I feel really positive actually from that conversation because it’s like there’s actually like all of the work that you’re doing at the IOCDF like Stuart, the targeted therapy centre and the podcast and stuff. It’s like, yeah, it feels very, like positive.  Like there’s a lot of work going on to kind of correct all of these myths and misinformation. 

 

S: The OCD community is a very, as Matt was saying, is a very passionate community. It’s been just so many people that have, for whatever reason, dipped their toes into the OCD community and been so shocked at how together they are and close and supportive. And that’s a real… that says something about the sufferers.

 

E: Yeah, really proactive.

 

M: Definitely. And Ellie, I’m glad you’re mentioning ending with hope. 

 

E: Yeah

 

M: That’s where I try to always come from, that there is help out there. It does get better. You’re not alone. There are resources, there are scholarships, there are treatment modalities that will work for everyone. And there’s a lot of bad out there. And if we can combat that with positivity and hope and a shared community, that’s something, right? That’s a starting place. And to build the resources and professional trainings and policy advocacy off of that, is really where we all come from as a staff. How do we come together as one community and really push this mission forward?

 

[music]

 

W: A huge thank you to Matthew Antonelli of the International OCD Foundation for joining Stuart, Ellie and I on this very special episode of OCD Stories and Lively Minds.

 

Check out the IOCDF at iocdf.org. The OCD Stories Podcast can be found at theocdstories.com

and Lively Minds at anyamedia.net/LivelyMinds or search the shows wherever you get your podcasts.

 

Thanks for listening and bye-bye for now.

[Music]

 

Lively Minds is an Anya Media //// Still Ill OK co-production

Share this!