OCD and Community
They recently returned from a weekend conference with over 1000 plus people and yes, their anxiety spiked a little! But despite that, it was incredible to be surrounded by a room full of people who really ‘got it’.
So today, they discuss what community means to them, how it has helped them in their own OCD journey, and how it can help you too.
(As well as a few tips of things to look out for… reassurance might be one of them!)
Below are the highlights from today’s episode.
And here’s a picture of your co-hosts en route to the conference:
How OCD connection and community can help support recovery
Kelley: I think being there this last weekend is very special for so many reasons. But the main reason is that you’re with 1000 plus people, and you don’t feel judged in the least bit, you don’t feel like your automatic baseline is unsafe. And I get to talk about things that I’ve never talked to anyone about. And they just get it. You don’t have to say, well, let me tell you what OCD is before you start to get in there into the weeds.
Lauren: One of the things that I think is really beautiful about that conference is that it is a mix of clinical people and people with lived experience. And then of course, there are those like us who have both ends of the spectrum. And it’s really cool because everybody is on that same baseline, everyone has that same basic understanding of this is what it’s like to live with this disorder.
Kelley: And I was just going to say that on Thursday night, we ran a clinicians group. For those clinicians who suffer with OCD as well. And we had a huge turnout we had about 28 people, something like that. And we only had an hour and a half with them. But you know, there’s a lot of really great clinicians out there who have OCD, and they know what they’re talking about.
There’s a lot of great clinicians out there who have OCD, and they know what they’re talking about.Kelley Franke, LMFT
How connection and community have helped us in our OCD journey
Kelley: I think finding Stuart Ralph’s podcast was a huge turning point for me, both professionally and personally, because he interviews so many different people in the community, both advocates, therapists, psychologists, psychiatrists, and regular folks, and I don’t know I just felt like even to this day, I gained so much. Not even talking to any of these people, but just hearing their stories has had a huge impact on me and it’s actually inspired me in a lot of ways to do what we’re doing here.
And ironically, I was reflecting on this… you and I started these lives back in 2020. In the pandemic, and I had a young child then, and not in school is my point.
And I had to reduce my caseload. I couldn’t see Lauren as often.
So we’re like, hey, what’s something we really enjoy doing? That we can spend time together and have it be safe? And it was this and now it’s evolved into this amazing thing. And I get a lot of feedback in terms of checking in on my own anxiety, I have to show up and talk the talk and walk the walk. I have to do my exposures and I have to lean into the anxiety because I tell everybody to do that all day.
Lauren: At the conference, it’s one of the benefits of this being the career path that we’ve chosen is that we’re constantly revisiting these concepts. And, and it is inspiring to whether the person that you’re watching is somebody with OCD in your life, like a friend. I’m often inspired by you and your courage, and others that I know who have OCD. But I also think that it’s inspiring to see your clients sort of face these things that are so scary and so painful. So, yeah, there’s kind of an overlap, just because obviously, we are saturated. We’re surrounded by people with OCD which is really cool in some respects.
Lauren: One of the things that come to mind is that principle of common humanity and self-compassion, and it’s something that my own therapist had shared with me at one point. So, for those of you who are not familiar with Kristin Neff, and Christopher Germer’s work, they are both psychologists, and they both are in the realm of self-compassion. They do a lot of work around that. And one of their three components, is mindfulness, common humanity, and self-kindness. And that common humanity piece really touched me. I remember the first time that my therapist was sort of walking me through the different steps. And he said, ‘Yeah, this element of common humanity is really important to see that we’re not alone in our experience.’
This element of common humanity is really important to see that we’re not alone in our experienceLauren Rosen, LMFT
Lauren: There’s something very empowering, strengthening bolstering I guess about recognizing that there are other people on this journey and whether or not you can see them whether or not they’re in their ear or immediate vicinity, that we’re all sort of in this together and separately, you know?
It’s a lonely experience to have OCD
Kelley: It’s such a lonely experience to have OCD. And oftentimes, it’s off the table to talk about content with people, because it can become reassurance seeking. It depends on each case, obviously, but it is a lot of thoughts and a lot of feelings that we have to carry half the time, if not all the time. Nobody has any idea. Like you’re just walking around and you think, if you had any idea what I am dealing with right now, and you are asking me to do this?
Lauren: You wouldn’t ask me to do this if you knew.
Kelley: Yeah. And so when you have this misunderstanding surrounding you, it’s so easy to go into depression. It’s like I’m alone and nobody else feels like I feel but to have perspective and say, You know what? No, this isn’t true. Other people experienced this. It’s very hard still. Yes. And how can I use these other folks as almost an inspiration and a guide of this is how I need to live my life because this is where I want to be.
How can I use these other folks as an inspiration and a guide of how I need to live my life because they are where I want to be?Kelley Franke, LMFT
Lauren: Accountability is something that is really nice, because people who are misinformed, or ill-informed about how this disorder works will often unwittingly give reassurance or engage or like won’t see it when it’s happening, right. Versus I think those of us with OCD, and especially when we start to understand ourselves better, we start to key into how other people with this disorder might get sneaky with compulsions and stuff like that.
Kelley: I know in our friendship, especially early on and navigating because I personally was going through a pretty big spike, but there would be a lot of this conversation of like, well, can I offer you a reframe? Or do you want an exposure? But it’s so true. It’s like, we haven’t done that in a while. And maybe that’s great. That’s good news that everyone’s in a better place. That’s the appropriate thing, how do we want to approach this? Do we want to do a rational approach? Or do we want to do an exposure versus everything’s gonna be okay? Everything’s alright.
Lauren: What do you need? How can I support my support? Yep, absolutely. Right. That’s so true. I kind of didn’t forget that I hadn’t thought about I know this idea of, well, are you? Should I or can I give you some rational input here? Or have we already passed that point? I am. And having that sort of insight and understanding that comes from going on your own journey, but also from seeing that other people are walking the same path?
Finding Common Ground in Your Different OCD Subtypes
Lauren: Also really helpful to see all of the different subtypes. And understanding that through line which is the more people with OCD that you get to know, the more you realize that it’s all the same. You start to find that common ground with everyone. You’re like, ‘Oh, we’re not so different.’ You’re just worried about that uncertainty. And I’m worried about this uncertainty. That’s it.
Kelley: Not to say that certain subtypes don’t have different hurdles. There are different hurdles for each one. Some have a lot of shame involved and others loneliness, and some of them more than others, because they can’t talk to their partner if they have relationship OCD, for example.
Lauren: Or even the other more taboo subtypes, which we talked about taboo themes at the conference, there are things like harm OCD thoughts that people are terrified to share with people because what if they think that I actually do want those things? And what if they misunderstand me?
Lauren: It’s interesting, even with my own obsessions around relapse. And it’s different because it wasn’t taboo, per se. But I was in a culture at the time, I was in 12-step meetings, where bringing it up led to a lot of misunderstanding. I could see that. And they would say things like, ‘Oh, well, maybe you do need to reset’. They became engaged with me rather than saying I didn’t need it.
They were reassuring and very, very well-intentioned kind people, but just didn’t know any better. So anyone who is outside of Voc or the 12-step community didn’t really understand either. So that sense of isolation was really pronounced which is why it’s really beautiful these days that I found a number of people who also are in recovery on that side of things
Encouraging OCD Community Can Still Induce Feelings of Anxiety
Kelley: I don’t know about you, but after that conference, I definitely felt my anxiety bubbling a little. My OCD had me thinking, ‘Oh, I have so much to think about.’ And I had to be extra aggressive with being present and grounding myself. I think what happens for me is I go, ‘Oh my gosh, I remember when I had thoughts like this’ You go over those conversations with people. And then I think I better come back. I better bring myself back.
Lauren: I think I didn’t experience too much on that front. But I can totally see where it would happen. Right. Especially because we’re all talking about different thoughts. And it’s part of the drill. I think what I experienced was just that there were so many people and in light of COVID, and not having been in a setting where there were that many people that I didn’t know, somehow or other I was very aware of my anxiety related to just being around other people, and about how I was coming across and the things I was doing. That was very clear. That became clear to me as time was going on, and we actually had a conversation about it. It was a nice moment, because I realized, well, wait a second… values, right? Hold up. Like we got to rein it back in. Because, yeah, it’s hard. I think a lot of people can probably recognize wanting to be liked.
Kelley: I think you’re right on the money. But I think ultimately, that’s uncertainty too.
Being Liked In the Context Of OCD and Community
Lauren: I think it’s probably important to talk about this in the context of OCD and community because I can imagine that a lot of people would feel – there we go with the common humanity – a lot of people would feel nervous about whether or not people liked them and whether or not they were acting in an appropriate way, even if they don’t have social anxiety, per se. And so, if that prevents you from getting support from other people, that’s a problem.
Kelley: Along with the shame piece is exposing yourself and being vulnerable to a community that’s safe. And doing that in a very strategic manner. Let’s say you don’t want to say, ‘Oh, hello, my name is Kelly and I think about drowning and having my child five times at night. Nice to meet you.’ We want to build trust a little bit. We want to know who these people are. But if you have a general understanding that this person gets it, they have OCD, there’s nothing wrong with reaching out and saying, ‘Hey, I know what that’s about and I feel less alone because you exist.’ It’s a wonderful thing to help build vulnerability in a safe way.
If you have a general understanding that this person get’s it, there nothing wrong with reaching out and saying, ‘Hey, I know what that’s about and I feel less alone because you exist’Kelley Franke, LMFT
Lauren: That’s such an important point. That, and we talked about it in one of the talks around shame and the taboo stuff is that vulnerability is important, but vulnerability and trust are earned. And we don’t just walk up to anyone and spill our deepest, darkest secrets because we don’t know if they can be trusted because we don’t know whether or not that’s safe in that person’s hands. Right. So it’s gradual. I think they talked about it in DBT; mutual disclosure. You’re sort of matching what the people around you are offering.
Other OCD Community Building Resources
Lauren: There’s the International OCD Foundation, which is what the conference in Denver was, it was put on by IODFC.
Kelley: And then in November, we’re doing the virtual conference as well through IODCF. If you’re in California, there are IOC cities.
Lauren: There are different local affiliates of IODCF. So you can check out local affiliates, I believe on their website…There’s OCD Action in the UK… I do think that the NOCD app has some peer support-related stuff.
Kelley: And disclaimer, sometimes these online groups can offer a lot of reassurance and we don’t want that. I did have a few conversations last weekend where people said, ‘Oh, my gosh, I’m in this OCD support group that’s online, or on a Facebook or something, and they’re just giving oodles and oodles of reassurance.’
Lauren: Yes, that won’t be super helpful!