Episode Transcript
Mark Antczak: Hi. I'm your host, Mark Antczak, registered clinical counselor and clinical educator. And you're listening to Anxiety Canada's #OurAnxietyStories podcast, the OCD series. Each week, we'll dive into personal stories, expert insights, and practical tips to help you understand and manage OCD. Whether you or someone you love is affected by OCD, this podcast aims to provide support, education, and a sense of community. Join us as we navigate this journey together one podcast at a time.
Today I'm joined by 34-year-old Justine De Jaegher who's living and working on Algonquin Territory in Ottawa, Ontario, and has lived with OCD her entire adult life. She served on the international OCD Foundation's DEI Council, AKA diversity, equity, and inclusion, and has co-chaired the LGBTQIA+ Special Interest Group. Justine also helped form the IOCDF's Canada Task Force to help expand awareness and treatment options for OCD in Canada for those afflicted by OCD, those supporting a loved one with it, and to help clinicians find proper training on treating it. Justine, thanks so much for joining us today.
Justine De Jaegher: Hello, Mark. Thanks for having me.
Mark Antczak: Such a wealth of experience and background. It sounds like OCD has been a really huge part of your life from that bio and from the brief that we've had so far.
Justine De Jaegher: Yes. Yeah, a big part of my life in a really negative sense for much of my, I guess, 20s and in a positive sense now and for the last few years. And it's been really well managed lately. And I get to turn some of what I've learned and experienced into advocacy, which has been really great.
Mark Antczak: Yeah, I don't know if I've ever heard anyone state OCD as being a thing that they've reveled in. As we know, it's generally one of the most debilitating forms of mental illness we have. But it really sounds like the lessons learned from it or the pieces that have come from it have been really powerful or almost reclamative experiences for you.
Justine De Jaegher: Yes, yes. OCD itself is still the worst. I guess what's been good is that I've developed some good coping skills and that I'm able to share my story and hopefully make things better for others. The OCD absolutely sucks the whole time. Yeah.
Mark Antczak: Yes. No, super fair. Well, on the note of OCD stories, I'd love to hear a little bit about yours. Would you mind sharing a little bit about when it all started, how it came to be? Yeah, what did that look like for you?
Justine De Jaegher: Yeah, absolutely. In my late teens, early 20s, I was living in Winnipeg doing my undergraduate degree, still living with my dad at the time. It was really quick onset. I started experiencing these really difficult thoughts and images around harm coming to people around me, be it my family members, my friends, co-workers, harm coming to them in some way, and it somehow being my fault. Yeah, and these thoughts were just getting really loud, really consistent, really persistent, and I found myself engaging in these behaviors, which I learned later called compulsions, to try to quell that anxiety, to try to reduce that anxiety, to try to push away those, quote, unquote "bad thoughts and feelings." And of course, unbeknownst to me, didn't know it was OCD, didn't know what OCD was really, that made it worse. So, it seemed like short-term relief of the anxiety, but long-term made it much worse. And, yeah. Yeah, go ahead.
Mark Antczak: The age, do you remember when things shifted? Because I imagine you probably had some of these thoughts growing up when it wasn't super predominant or it wasn't anything that was really huge at that point, but I imagine there was some kind of shift where those really ramped up or they were maybe being interpreted in a different way. Do you remember a bit more about that?
Justine De Jaegher: Yeah, yeah. I was either 19 or 20, so I say late teens, early 20s. I honestly can't remember. It was that year, though; I was 19 or 20. But yeah, you're right; in my childhood, I'm sure I remember instances of being a quote, unquote just generally "anxious" kid. I'd have anxious thoughts. And everyone has anxious thoughts, right?
Mark Antczak: Mm-hmm, mm-hmm.
Justine De Jaegher: That's one thing we like to highlight. But they weren't sticky in the way, I guess, that they became sticky in that-
Mark Antczak: Right. Good words.
Justine De Jaegher: ... 19, 20 period when it was like the risk associated with them I felt was suddenly very high, my responsibility felt very significant all of a sudden, and they were just so persistent and loud, I guess, was the difference. Yeah.
Mark Antczak: Yeah. The volume with the stickiness, it was harder to shake off. They felt a lot more real, a lot more scary from the sounds of it. Was there a specific event that you remember that caused this shift? Or do you remember any specific moments where it felt different? Because I think for a lot of folks, they often think, oh, there is this one pivotal event where everything changed, or I had this one really specific obsessive episode. And in reality, for some it could be a really slight trickle from what I understand.
Justine De Jaegher: Yeah. Honestly, it was all at once. I had started a new job, and I remember one of the areas where my OCD latched on was around the door locking and security at that job, and so making sure that doors were locked at the end of my shift. And that really trickled into, and if it weren't, harm could come to my coworkers, et cetera. And that quickly bled into the home. And so it was also door locking, window locking and associated checking at home. And then doors and windows weren't enough, so then it was, oh, yeah, fire is a concern too. It's not just people breaking in, it's fire. And so stoves and appliances and coffee makers and anything that could feasibly start a fire suddenly became part of the checking routine as well.
Yeah, I don't know if it was this major onset event, but it was this... It might've been, looking back, starting this new job while I was going to school and maybe feeling this heightened sense of responsibility generally. And yeah, OCD decided to latch onto that, I guess, increased sense of responsibility, maybe, and latch onto my workplace and my home.
Mark Antczak: Yeah, it certainly sounds like I think that's a really solid theory where it's like, "Okay, I'm growing up. I'm gaining more independence. I'm being given this role where I have to be more responsible." We start having these intrusive thoughts where our neglect or our lack of doing something that we're responsible for could lead to a break-in, could lead to in someone getting hurt and just really seeing how it stuck to different points. And it started at work and traveled back home with you where it then latched onto family and not just colleagues really just showcases how pervasive that was for you, I imagine.
Justine De Jaegher: Totally. It's funny, talking, I also have this distinct memory now of this point where I was like, oh, something is really wrong, was when it was 3:00 AM; I'm in my car. I'm driving back to the Pizza Hut where I worked at the time for the third time because I was so nervous that, oh, what if the door was unlocked? Or what if the oven was left on? And I remember this thing just driving back and forth between my dad's house and this Pizza Hut in the middle of the night that I was like, "Something's awry."
Mark Antczak: Okay. Yeah. Yeah, just having these really distinct, almost flash bulb memories of, "Oh, I was really in the thick of it." And you've been mentioning all these examples involving a lot of checking. And it sounds like at its peak, there must have been quite a bit of time that went into these checks. Do you remember a quantified version of... Do you remember how bad it got at one point?
Justine De Jaegher: Yeah. Yeah, and this is so important to emphasize because I tell people... I tell my story. I tell people I have OCD and how it first manifested as checking, and people are like, "Oh, well, I checked that my door is locked. I checked that my stove's off. Do I have OCD?" Maybe. But I think what I need to emphasize is no, it wasn't just like I checked once; I was checking everything multiple times. What if I checked it slightly wrong? What if in checking it, I accidentally nudged the deadbolt? What if? What if? What if? What if? Right. And so, yeah, it was interfering with my ability to leave for work and school on time. It was in some cases hours a day of checking behaviors alone in addition to the associated mental rumination once I did get out the door of, oh, but what if? What if? Should I go back? Should I not go back? So, I guess, pain and the noisiness of OCD was really felt at one point. It was all day long all the time. And then the checking behaviors themselves were sometimes a few hours.
Mark Antczak: Yeah. Hours of physical checking that you did yourself. It sounds like there was a lot of mental rumination or a lot of you almost taking mental snapshots and being like, "Remember this image. Don't forget this locked image." I'm imagining probably reassurance was a big piece of that where you relied on others for that as well.
Justine De Jaegher: Huge. Huge. And your loved ones, right, if they haven't been trained on OCD, what it is. And at this point, I don't know what's happening with me, my family doesn't know what's happening to me, my friends. And people just want to be helpful and they don't want you to feel distressed, and so they think the best thing to do is say, "Oh, no, no, no, I'm sure you locked it." Or, "Oh, I'm sure you wouldn't leave the stove on." Or even worse, "Oh, well, I'm going to be home in 20 minutes. I'll check it all for you." You know?
Mark Antczak: Mm-hmm.
Justine De Jaegher: Which sounds nice in theory, but in practice is unhelpful behavior for someone with OCD. But we didn't know that at the time.
Mark Antczak: Yeah. And I feel like this is becoming a little bit more common knowledge with this idea of the immediate helping role. I think it's our default. We love to help others. We want to be able to make someone not feel distressed. But when we learn about what the root of OCD is, which is that intolerance around uncertainty, that inability of not knowing, then if you get reassurance either from your own compulsion or through someone checking on your behalf, we're still getting that hit of reassurance, which is ultimately building that need for more and more certainty.
Justine De Jaegher: Exactly. Exactly. It's the same cycle. Whether I'm checking the stove myself or I'm having someone else check it for me, that's all compulsions. And it's all temporarily relief providing, but it's super temporary. Very quickly I'll find a reason to check again or ask someone else for reassurance. And yet long run, it's fueling the OCD, it's fueling the disorder and making it a lot worse.
Mark Antczak: Yeah. Right. We've got hours of mental anguish, we've got hours of checking, which is impeding your ability to do certain things, we've got a lot of dependence that's forming on other people for reassurance. How would you say OCD impacted other parts of your life? Because we know if something becomes disordered or something becomes pathological in the world of mental health when it impacts quality of life or impacts your functioning. I'm curious, what are some of the other ways that you remember OCD really, really impeding or screwing your ability to do certain things?
Justine De Jaegher: Yeah, I remember really I so desperately wanted to power through in school and work. I was doing really well at school in particular. And even though I was in a ton of mental anguish, I was pushing through, I was going to school, I was doing that. But, I remember I would retreat socially really substantially. I'd come home from school and just curl up in a ball in my room and just be on my own and just think, wow, this is hopeless. So, in a way, on the outside I seemed high functioning, I guess. I was getting my assignments in on time. I was going to class, I was going to work, but, A, I was in a lot of pain, and B, aside from the basic getting my work in, getting my schoolwork in, I was really retreating from friends and family, and it wasn't great.
Mark Antczak: Yeah. A lot of isolation, a lot of retreating from others. Was there a specific point where you were just like, "Oh, I need help?" Do you remember that point? I'm sure it was a culmination of events, but was there something specific that triggered it?
Justine De Jaegher: Yeah. Well there was. Well, I remember there was one incident where I had been so stressed leaving work around the locked door issue, security issue that I... And I was just ruminating so much on it and just doing so much mental review, and I was just crying in my room just so upset and just knew this wasn't sustainable. Yeah, I remember, I have this image of me there thinking, yeah, I need help. I need some medication. I need a diagnosis. I need some therapy, something.
And, I was able to, I made an appointment with my physician, with my doctor. I made an appointment with a therapist. And so my doctor prescribed some medications, some SSRIs, which helped a little bit, I think. I don't know. I like to think of the OCD thoughts as almost radio static, and it turned the volume down a bit on it, but it was still there. But it turned the volume down a bit, so that was good.
The therapist, very nice therapist, but did not specialize in OCD and did not diagnose me with OCD. So, I think that was certainly lacking at the time. And this is such a common thing for so many people, but is finding the right treatment. It's a specific disorder that requires specific treatment. And I wasn't getting it initially. I knew I needed some care, but I wasn't necessarily getting the right kind initially.
Mark Antczak: Right. Okay. So, we really see you pulling at all of these different floats that are available to you. You're asking your parents, you're talking to your GP, you're getting some medication, you're talking to a specific therapist. As far as when you're in this process of going through all this therapy, as you're starting to lean on other people, what would you say the most helpful things were that they did for you in those moments? What were some of the things that you found really resonated or really allowed you to feel just cared for and safe?
Justine De Jaegher: Yeah, in terms of loved ones, just being present, sitting with me through the really tough periods, helping me find resources; eventually the right ones, eventually ones that did treat the OCD specifically. And, you know I do, I think back in that time, and so the long story short is that I've seen this therapist; didn't get the diagnosis; wasn't being treated for OCD. But it was only a couple months later, actually, that I was able to find a therapist who did provide me with a diagnosis and who treated it.
And one thing I think about this period is my story is really not common in a great way for me, in a really awful way for most people, which is that we know that most people... At least there's an American survey that shows that it takes people closer to 15 years between the onset of symptoms and finding appropriate treatment. For me, it was a few months. There's that. There's the fact that we know that affordability is a major issue for folks. I was on my dad's insurance plan. He had a good union job, and I was able to access therapy at nominal cost. I was able to pay for my medication. So, I did have a lot, I guess I will emphasize, of privilege. Despite it being a very distressing time, I had a lot of privilege in the supports that I had around me, in the financial resources that I had available to me. And so I do reflect on that a bit now in my advocacy moving forward for sure.
Mark Antczak: Yeah. Yeah, it's such an important note. And I guess this allows us to segue a little bit into the advocacy that you have done, because I think for a lot of folks, when we think about mental health resources, I think a lot of folks just in general assume that if you need support, you go out and find it and it's readily available. But we have a number of different barriers when it comes to OCD treatment, whether it comes to there not being attended of clinicians that have the required training for it, because it is quite specialized, and then knowing how to even be able to find a clinician, being able to have the understanding and research, being able to have the funding and the financial resources to be able to access treatment because we know how expensive therapy can be if you don't have appropriate coverage for it or if you have limited insurance. It sounds like the recognition of a lot of those pieces is what really encouraged you to do a bit of a deep dive into the advocacy piece that you do.
Justine De Jaegher: Absolutely. Yeah. And you're asking people to navigate the system when they're experiencing probably the biggest distress of their lives. It's not the best time to be navigating insurance schemes and, okay, and what am I getting treatment for? And what is your background? And what are your qualifications? And are you trained in exposure and response prevention? And that's all really important. But if you're navigating that alone during a really distressing period, that can be really hard. So, again, I was really fortunate to have family especially who helped me along that journey. And the more there is public awareness about the disorder through podcasts like this one and other things, I do hope that people listening can... Even if they don't have close personal connections that are helping them navigate this stuff, I'm hoping that there are more and more resources available for people through organizations like Anxiety Canada to navigate this stuff.
Mark Antczak: Absolutely. Yeah. And part of our most recent movement, or one of our most recent fits on Anxiety Canada is we created an entire OCD page specifically to help narrow focus and to help folks be able to navigate these resources a little bit more readily. We've got documents on how to find the right therapists. We have a document that describes in more detail what kind of questions to ask, talks about exposure and response prevention and all these pieces, so, I'm so grateful to have been able to get your kind of support because you know a lot of the background info and a lot of the background experience that's required to be able to navigate often this minefield of government policy and support. Would you briefly cover some of the projects you've been working on or some of the things that you've done with respect to advocacy? We'll get to expand on this episode two, but yeah, I would just love to hear a bit of a preview.
Justine De Jaegher: Yeah, absolutely. I guess if we jump forward, we were in my early 20s, I'm now in my mid-30s, but the last few years, again, have been really good in terms of my OCD being well managed. Still get flare ups and still have to deal with it as it comes up. But I've been in a place where I felt really able to share my story, to do some advocacy. So, I became involved with the International Obsessive Compulsive Disorder Foundation who do amazing work on OCD. It's a global partner I know of Anxiety Canada's.
And yeah, I got involved in a few of their... They call them special interest groups. There was the Faith in OCD Group and the LGBTQIA+ Group. And yeah, so we did some webinars and some other awareness raising events. But I also got a bit involved in some of their public policy advocacy work. So, they have a tool to contact your representative. The tool is currently based in the States, so it's for congressional representatives and senate representatives in the States. But it was how to effectively talk to your elected decision makers about mental health policy and the kinds of changes we need to see.
I got a bit involved with that work, realized I'd like to bring more of that work to Canada and with some other folks. And clinicians and other people's lived experience and other family members of people with OCD formed this IOC of Canada Task Force. And right now it's new, but we’re starting some projects around... Training's a big thing, so promoting training for clinicians. I covered some of the... This is going to be the economist in me coming out, but some of the demand side issues around therapy for OCD, right?
Cost and access and information barriers and all those things. But on the supply side too, there aren't enough trained clinicians, so that's a big part of the work. But also looking at some policy initiatives around affordability and access, and then more education and awareness raising stuff too, right?
Enough people still don't know about this disorder, that it's not a personality quirk to be mocked; it's a serious mental illness that needs treatment like any other. Yeah, it's a quick snapshot of some of the work I do.
Mark Antczak: Yeah. Yeah, it feels so expansive and there's so many nuggets that I feel compelled to pull on, but really just highlighting that this was such an impactful part of your life and such a massive thing that really infiltrated so many different parts of your life. When you felt like you were in a better space, you really had so much motivation to go the extra mile. Because I feel like for a lot of folks, they just think, no, I just want to get through this and I want to get back to living my life. But you got through it, or it's at a manageable point, and then you're thinking, I need to do more. I want to give back. And it sounds like that's been a very, very fulfilling piece for you and your recovery as well.
Justine De Jaegher: Yeah, it has been. And I've been engaged in activism in other areas throughout my life, but this one obviously hits home and is personal. And there's just obviously such a need for advocacy on mental health and mental illness generally. But this is the disorder I know about the most, so that's where I figured I'd plug in.
Mark Antczak: Yeah. No, super fair. No, I appreciate that perspective. I want to touch on this briefly because you had mentioned a little while back, but I feel like it's always really curious to hear folks' experience with SSRIs. And you had mentioned that you were medicated at the start of your OCD journey and how it made things a little bit less staticky or it made there be less of these radio waves, as you've put it. What was your experience like with meds? Because I think there's a lot of taboo around them, and it could be helpful just to hear your perspective on it.
Justine De Jaegher: Yeah. I was started initially on an SSRI that first off made me very tired. I was very tired, but it was helpful in reducing that noise or that static. But my doctor said, "That's okay, we'll try you on a new one," essentially. And they tried me on a new one. And that one, I was far less tired, and it seemed just as effective in terms of producing the noise. So, for me, it worked really well. Obviously, speak to your doctor. I can't provide medical advice, but generally we do know that some combination of medication and appropriate therapy, generally exposure and response prevention or acceptance commitment therapy, similar modalities is effective in treating the vast majority of OCD cases. There are some exceptions, of course, where additional more intensive treatments are required, but for the most part, that does work for folks. I am an example of that. Yeah, the meds were good for me. Again, it took a bit of work with my doctor to figure out the right one and the right dosage. But yeah, I'm a fan. That plus appropriate therapy worked well for me.
Mark Antczak: Totally. Yeah, I often take the approach with folks I never default or I never go out of the gate encouraging that, but I know for a lot of folks, they come in wanting therapy, and sometimes the anxiety can be so high, so palpable that it's really tough to actually be able to lean into the work to be able to get momentum or to get relief from what therapy does. And I think for a lot of folks, they worry about dependence. Will I ever be able to get off this? Will I be reliant on this? And I think a lot of folks also worry about it changing them as a person. And so I'm wondering if you could maybe speak to those two pieces around your specific experience with that.
Justine De Jaegher: Yeah. I feel like, at least when I was first experiencing these OCD symptoms, I didn't really have that concern too much with meds because I felt like OCD was what was changing me as a person. Or not changing me, but changing my life. It was impacting my life so substantially in a negative way that wasn't aligned with how I wanted to live and my values that I was open to any evidence-based intervention that might be helpful while listening to all the potential risks and drawbacks, obviously, from qualified medical professionals. But from a cost-benefit perspective, for me, it was really clear that this could help improve my quality of life.
And to your point, yeah, in a way, for me, it was the thing that helped to get me at least in the door to therapy. The medication alone was not going to fix. Not that anything fixes your OCD, but it wasn't going to help my OCD alone. But it got me to a place where I felt able to really, to your point, lean into the work of exposure and response prevention with a qualified therapist. I think without the meds in my case, I'm not going to say it's impossible, but it would've been a lot harder to take those steps and get in the door with that therapist and do that work.
Mark Antczak: Yeah. Yeah, the way I've had it described to me is that it lowers the baseline anxiety, right?
Justine De Jaegher: Yes.
Mark Antczak: Just the general intensity, you're not being bombarded 100% of the time; you're being bombarded maybe 50% to 60% of the time. And a lot of those really sticky thoughts, what we can't seem to let go of, the ones that cause us distress, the ones that we have compulsions around, they become less sticky. It's not a matter of them not really happening, they'll still pop in there, but from what I understand, they'll be able to disappear into the ether a little faster or they won't stick around as long. I don't know if that's a similar experience that you had with them.
Justine De Jaegher: 100%. Yeah, that's absolutely it. Yeah, it would not get me to that 0% on its own, but that plus therapy, yeah, for sure.
Mark Antczak: Fair. And are you still on them at this point in time?
Justine De Jaegher: I am. Actually, I'm on a lower dose than I was originally. The general practice is minimum effective dose, I guess, I think is the term. I have ongoing conversations with my doctor as things have progressed that we've lowered the dose a bit. But I am still on it, yeah. I think it's worked well for me and my general health. Yeah. Again, fan.
Mark Antczak: Lots of conversations with doctor, making sure that you're on the same page with them. And it sounds like for you, that cost benefit analysis of don't fix what's not broke. I'm on the lowest dose. I don't really notice it. May as well stay on it kind of thing.
Justine De Jaegher: Yeah, exactly. And that may change over time too; increases or decreases depending on whatever. But that option's available.
Mark Antczak: Yeah. Okay. No, I appreciate that stance. And circling back to this journey piece, because you've mentioned at the age of 20, these thoughts are flaring up, they're really getting sticky, they're gaining momentum, compulsions are building. You start seeking out therapy. You find a pretty good groove or you find the right supports. It sounds like some relief was had, and were in this maintenance/managed point of view with your OCD. Have your intrusive thoughts always revolved around harm and safety? And how has the ebb and flow looked like over the decade and a half that you've had this in your life?
Justine De Jaegher: Yeah. No, is the short answer. The themes around my OCD have shifted over the years. Yeah, it really started out with those checking and harm themes. But I would say my OCD got really bad again, it was in my mid-20s, it was this 25, 26. And at that point what's coming up for me, it's a theme that's talked about a lot less, but it's religious themes. It's called religious scrupulosity is the subtype. And it's what if? questions. Because the common denominator here is always uncertainty, right?
Mark Antczak: Yeah.
Justine De Jaegher: And intolerance of uncertainty. What if this happens? What if this happens? And then engaging in compulsions to try to suppress that. And so what if questions that were coming up there felt really new and big and existential. And what if God exists and will punish me and my family? What if I'm not moral enough? Those kinds of what ifs?
And I remember that feeling really scary and really destabilizing because at this point I know what OCD is. I'd received really effective treatment. I really got the checking stuff under control. Yeah. I felt like my OCD was all managed. And this new subtype crops up, and I'm like, "Oh my God, what if this is different? What if this is real?" And it's like, OCD is really tricky that way because it's like... I think deep down I knew that while this feels really similar, really familiar, but I was like, "Oh, but this is new. This isn't the stove. I can leave the stove on all day now, but this is new and this is scarier. And the risk here is too high," and all these things. I feel like people who've had fluctuating themes or subtypes can probably relate to this, that you trick yourself to saying, "Well, this is different. This isn’t OCD." But sure enough, it was.
And at least I knew enough. Again, this is how I knew deep down it was that is that I sought out immediately... At this point, I was living in Ottawa where I live now, so sought out a different therapist, a new therapist. I'm like, "Okay, OCD therapist specializing in ERP. Here we go." Deep down, I knew this was what this was.
Mark Antczak: Gotcha. Okay. So, we have a lot of harm and safety-based obsessions initially. In particular, it sounds like a lot of fear of what if I do something that leads to someone else getting hurt? And then we get the correct treatment, we get some relief. And then we have this resurgence in our mid-20s, specifically around religious obsessions and blasphemous, scrupulous themes. Feel free to not share if you're not comfortable, but do you have a religious background? Do you feel like that's where it comes from?
Justine De Jaegher: Yeah, I was raised Catholic, and then in my adulthood I was looking for a different religious community but still felt like I wanted a community of faith. And so I, for a while, was with the United Church. I'm now a practicing Unitarian Universalist and love that faith community.
But interestingly, a lot of the research indicates that people with religious scrupulosity obsessions, it's not like it stems from a particular religious belief or religious institution. I've learned through my advocacy work, there are atheists who experience religious scrupulosity because you can't be 100% sure. That's the issue. It's not a particular religious tradition, it's that you can't be 100% sure. I know folks who would identify as atheists who are plagued by these obsessive thoughts around what if God is going to punish me and my family? And Unitarian Universalism, it's a very accepting religion, it's a very open religion. And it's not particularly strict in terms of its doctrine or creed, but I certainly was not immune from religious scrupulosity because it's about the uncertainty. And so yeah, it's a bit on my background.
Mark Antczak: Devil's in the details, as I often like to say; pun fully intended when it comes to religious scrupulosity, because for some folks it really boils down to a lot of morality themes. Like an example that really struck me was a combination of harm and safety, which is you walking down a path and saying, "Oh, if I take a left at this juncture, then I'm going to be tortured in hell forever, versus if I take a right, then my family's going to be the one that's tortured forever," that kind of appraisal of am I a bad person for picking myself? Am I being selfish if I pick myself? But what does it mean if I don't pick my family? Et cetera, et cetera, right?
Justine De Jaegher: Right.
Mark Antczak: Or just the sheer idea of you doing something that's really damning or you doing something that's really blasphemous by accident; not doing enough prayers for compulsions, going as far as going to your neighbor and saying, "Hey, we need to pray together so so-and-so doesn't happen." It's so fascinating that it can come from both religious and non-religious backgrounds or upbringing.
Justine De Jaegher: Yeah. And what I think was really interesting about my experience was I think the OCD really distorted my relationship to faith and my actual beliefs. I was praying to this God that I didn't actually believe in, this really vengeful, hateful God and this religious doctrine that I didn't believe in personally. You know?
Mark Antczak: Mm-hmm.
Justine De Jaegher: And I hear that from a lot of folks. You end up praying to almost your OCD, to this anxiety that you're trying to get rid of. And you're not engaging in your faith and your beliefs in any kind of positive sense, it's you're engaging in these actions and these, whatever, prayers and these rituals just to quell your anxiety, not to engage in your faith in a positive way. And so I think what was interesting about treatment that time was that on the other side of it, I actually realized, oh, I have a far more healthy relationship with a religion than I ever have now because I'm engaging with it not out of this fear and this anxiety associated with my OCD, but a genuine interest and belief system, which is cool.
Mark Antczak: One might say that you were really realizing your value congruent life at that point.
Justine De Jaegher: Yeah, absolutely, absolutely. Yeah. Yeah.
Mark Antczak: So, we got harm and safety, a lot of fears of what we may or may not do that could be to someone else being impacted or someone being hurt. That then shift into a lot of religious, blasphemous, scrupulous themes surrounding a lot of existential components. Did it stop there or were there more themes that followed suit? And did it happen right after the religious piece, or was there another break?
Justine De Jaegher: Yeah, the most recent one, I guess, to touch on as many themes as I can, but the most recent one was an interesting one in that I really saw it coming, which is maybe a bit strange. My wife had our son six months ago.
Mark Antczak: Oh, congrats.
Justine De Jaegher: Yes, thank you, thank you. It's great. And again, knowing what I know now and knew whatever a year ago when she was pregnant, I was like, "Oh, this seems like something that..." And maybe not, maybe I'll be pleasantly surprised, but it seems like something that OCD might latch onto, right?
This responsibility piece, this care for another person. I was like, "This has the potential to be something that my OCD latches onto." And I've looked at some of the research around perinatal onset, all these things. I was like, "Okay, this might be coming."
And it so happens that for me, it did. The two or three weeks, I would say, after my son was born, those weeks you ask any parent I'm sure are very challenging already. You're not sleeping, it's all new, you're figuring out how to care for an infant, all these things. For me, it was the additional piece of the OCD really latching on to what if harm is going to come to my baby and it's my fault? Right?
Mark Antczak: Yeah.
Justine De Jaegher: But I really want to share that story, A, because I think it's an important theme to highlight because it is really common is a lot of folks will say postpartum OCD, but a lot of the literature now refers to it as perinatal OCD I think because, A, some symptoms can occur in pregnancy, and B, it impacts non-birthing parents too, adoptive parents. I'm a non-birthing mom, and it definitely hit me. It's not just a post-birth hormonal thing.
I think it's important to share that, but I also think it's important to share because what a world of difference it was to go in thinking, yeah, my OCD might latch onto this and I can cope with that. And sure enough, I did. Which is not to say it wasn't hard, which is not to say those two, three weeks were not very difficult, they were, but I think about how relatively quickly I turned that around and I set up appointments with my therapist. I got going on an exposure list right away. I knew what to do. I had the tools in my toolbox. And I think about how quickly I was able to turn things around compared to the previous onsets of new subtypes. Wildly different, wildly different.
Mark Antczak: Yeah, I believe it. And especially with something like perinatal OCD or... Or I feel like OCD, especially in the context of newborns, I have worked with so many moms who sometimes wait years if not a decade before they have the courage to be able to seek out support because of the taboo nature of some of these obsessions. "Oh, having visions of me throwing my child into the oven," or, "I'm having these doubts that I might've accidentally grazed my child's genitals while I was doing a diaper." All of these different things are so terrifying regarding those implications, the fear of what other people might do when they hear it. I am so glad in some part that we have so much more education on the postpartum or perinatal OCD, because I think truly it was one of those forms of OCD that was largely slept on for a really long time, as I'm sure you know just as well.
Justine De Jaegher: Yeah, absolutely. And of course, the stakes, and it's still a problem, feel really high to disclose, right?
Mark Antczak: Mm-hmm.
Justine De Jaegher: Because it's not what if someone who doesn't understand OCD calls Children's Aid Society, right? Or thinks that I'm an unfit parent or at these things when it's like you think about people who are dealing with, for example, pedophilia OCD, obsessions about what if I graze my child's genitals? What if I am a pedophile? What if? You know?
Mark Antczak: Mm-hmm.
Justine De Jaegher: And the point with OCD is that it's ego dystonic. It's exactly against their values and it's the last thing they want to do, and they find these thoughts abhorrent and distressing. And it's horrible to live with. But someone who doesn't understand the disorder, if that's explained, they might just think, oh, well, this is something to be afraid of, and we have to protect this child, whatever. Yeah, it's just such a misunderstanding of disorder. I really feel for folks who don't have an understanding of the disorder and are afraid to seek out appropriate supports. And hopefully that gets better over time.
Mark Antczak: Absolutely. Truly, it's just so evident how well-researched you are and how much experience you have not just with the therapeutic piece, but you have so much knowledge on the topic. And I'm sure that just aids so much in the advocacy piece because, you're right, if this was a standard piece of education that new parents can get right after they have their kiddo, I imagine we would see a lot less cases of that if people just had that understanding.
But in general, Justine, it's been so incredible hearing your story, really seeing the impact that all these supports can have in your life, but also really showcasing that OCD is not a one-and-done thing. And I think for a lot of folks when they hear, "Oh, OCD, you can't ever fully get rid of it," people will often think a lot of despair. They'll be really hopeless around this scenario, "Oh, this is going to be my life for I guess the rest of my life. This is it now." But recognizing that this could be such a small, tiny part, the equivalent of what I would get with an intrusive thought, right?
Justine De Jaegher: Yeah.
Mark Antczak: Where you could even do the opposite of saying, "You know what? I'm going to fight for those that need support." And even recognizing you know what? If another wave's coming, I'm going to be able to see it, and I'm going to be able to deal with it and not get hit by it as hard. Right?
Justine De Jaegher: Exactly. Yeah.
Mark Antczak: Thank you for that perspective. I truly think you're going to provide a lot of hope and inspiration for listeners today.
Justine De Jaegher: Oh, thanks very much. Thanks so much again for having me and for all the work you're doing. It's an incredible platform.
Mark Antczak: It takes a village, right? As I'm sure you know.
Justine De Jaegher: Yeah.
Mark Antczak: And it's a really enriching community. And I think I've always gravitated very specifically to this disorder because I see what help can do to someone's life and how quickly it can turn around.
Justine De Jaegher: Yeah, absolutely.
Mark Antczak: Justine, thank you so, so much for joining us. We are going to have another episode with Justine, so stay tuned for that, where we're going to talk a little bit more in depth about OCD advocacy if you're ever keen to get more involved in that world. And we're also going to talk a little bit about treatment or more of the taboo spectrum or themed forms of OCD from the perspective of some of the religious or blasphemous themes that we touched on today. We'll talk a little bit about sexual orientation OCD or any harm or safety-based OCD as well. So, stay tuned for that. And just as a general thank you, thanks for tuning into #OurAnxietyStories. If you'd like to support this podcast or Anxiety Canada, please go to anxietycanada.com. Thanks so much. Take care.
