Latest / Living Uncertain an OCD Podcast / What OCD is…aaand what it isn’t (OCD)(Episode 12)
Transcript
- Marc & Stacee: Hi y'all, I'm Stacey and along with my husband, Mark, we wanna thank you for living uncertain with us. Of course, as you all know, this is the podcast that talks all things OCD and ERP, and we wanna welcome you to episode 12, what OCD is and what it isn't. Mark and I thought long and hard about today's episode and what our topic would cover, and it felt like a good time to discuss what it meant in our journey to really Thank you for joining us on today's episode and Living Uncertain with us. We are not therapists and this podcast is intended to provide information and support. It should not replace traditional means of seeking help from a licensed mental health professional. If you like this episode or would like to hear more, please like, subscribe or share with someone you think may benefit. Here at Living Uncertain, we're building a community of support. Opening: Hello, and welcome to the podcast, Living Uncertain. This podcast is dedicated to obsessive compulsive disorder, OCD, and the primary treatment, exposure response prevention, ERP. OCD comes in many forms, such as contamination, perfectionism, checking, harm, superstitious, religious or moral, sexual orientation, and or relationship. ERP is the gold standard to treating OCD. and it focuses on deliberately confronting fears, the exposure, while refraining from compulsive rituals, the response prevention. With repeated exposures and without engaging in compulsions, we learn to tolerate anxiety and break the cycle of intrusive thoughts. We are a married couple that have faced both the challenges of OCD and the incredible healing that ERP can provide to your marriage, family, and your home. As a person who lives with OCD, Marc & Stacee: discover what OCD was and what it meant to me personally and then what the effect was on my marriage to Mark and on our family and what OCD wasn't. And sometimes it's hard to, or it's easy to, I will say, confuse and start believing that everything you're doing has some OCD component behind it, but in truth it doesn't. And so it's really hard to then separate If you and your significant other would like to share your story, we would love to have you on the podcast. Please click on the link in the episode description and fill out the interest form. Opening: I am much more than this diagnosis. We all can be. Marc & Stacee: who you are versus what OCD is and what it's done to you. And sometimes you have to take a step back and realize that A, there are lots of things that you do that aren't related to OCD and B, you are as I am much more than what this diagnosis is and what it has been, especially in the last 18 months of our life as we've been getting this intensive treatment and on this healing journey. ⁓ But really important to remember all the other parts that make up who I am, who Stacey is, who Mark is, who our children are, or what our marriage is that doesn't have to do with OCD. ⁓ Because then we can really hone in on the parts that are. And those are the parts we can tackle and the parts that we have been trying to be very diligent at tackling throughout this last 18 months of our life. And I will say with this podcast, we are focusing on on OCD, your OCD in particular, and how it's impacted our life and, you know, down the road, maybe hear other people's stories, how it's impacted their life too, as well. but just like you said, you are way more than just OCD that does not define who you are. It's a piece of baggage that you have. It's a part of who I am. Yep. But it isn't my entire identity. And it took me some time after having gotten diagnosed to parse out or to at least remember the parts of me that weren't OCD. And when we first started this journey, I I felt like it was more like the largest carry on. or piece of luggage that you could check in on an airplane that we were carrying. Yeah, absolutely. And now we've gotten to the point to where it's more just like a little handbag that you get to carry around with you. That's such a good analogy. I love handbags. You know, just to... That's fun. Okay. You know, get it to that point, you know, and you you look at like social media and stuff and all you see is the great parts about people's lives. never, they never taken... you know, post, you know, the negative pieces that's happening in their life, you know, is post the vacations and post the birthdays and post that. But they don't post the fighting. They don't post, you know, the. The nights. Yeah. Yeah. You know, the issues they might be having with their kids or this or that they they only post the happy things. And this podcast, I think, kind of maybe puts more of the negative light on you, which is not the case. You are not OCD. It is not defining who you are per se. Right. ⁓ But it is what you have. Yes. And it has driven a lot of my life and a lot of my decisions. And it has been present with me through decades of my own trying to navigate life and growth, ⁓ trying to have relationships with people. And so I do have to acknowledge that. But there are other aspects of who I am and what I've accomplished in my life that don't have anything to do. with my OCD. And I think that there's aspects of who I am that can get kind of confusing and other people who have OCD perhaps have that same thing going on. so again, podcast is designed to be as authentic as possible and as raw as possible and to highlight not only the exhaustion and the negative days and the hardships that we've had, but also to really highlight the progress we've made and the the joy that we've brought back into our life with the therapy and the ERP and what that has meant to us. And so today's episode is kind of just that. It's yes, there's still a lot that's going on that we need to overcome and we need to acknowledge, but at the same time, let's not forget that we've done a lot of growth. We've done a lot of healing, but also I'm still Stacey and he's still Mark and We've still had a marriage of over 20 years that was built on a lot of love and trust early on that didn't have anything to do with my OCD really because I didn't even realize that that was what I had been dealing with all of this time. But one of the things that I thought would be good to highlight is that, for example, I shared in previous episodes that I have some tendencies for cleanliness and organization and sometimes I take that too far and that becomes more OCD driven and it becomes where there's compulsions involved in the organizing and the cleaning because of the anxiety that I feel and the the absolute need to engage in a compulsion to Get rid of that anxiety as quick as possible or to get back some control or to get back some certainty in my life and so yes there have been there are times when That is a factor, but my whole life I've been more organized. I've been tidier. I like a clean home, a clean room, ⁓ an organized desk space, et cetera. I do like that. I thrive in that kind of environment better than the alternative. But I think most people would feel that way too. I agree. But I think it's hard for a lot of people to get their lives in order that way. I'll take myself for example at work. My desk is usually a mess. Yeah. But like today I had enough time after work that before I went into my next meeting that I had time to take and organize and clean up my piles of paper and move things around. shred things that I didn't need anymore. And now I feel like tomorrow when I walk in to work. kind of a fresh start, right? I have a fresh start. It's going to be clean. It's going to hopefully try. And my goal is to make sure that I try to keep it that way. But that doesn't mean that I have necessarily OCD. It's just what I like to Exactly. And I think that's a big part of what we wanted to highlight tonight is that So much of OCD is misunderstood. And so much of OCD, and I've heard it said and written across different sources that I've looked at over the time that I've been researching OCD now as well, that OCD is one of the most misunderstood mental health disorders that is out there, because it has such a quote unquote cliched definition, and people only go to that definition and don't recognize The absolute. hook that it can take in someone's life. can actually, it can hook you and keep you so captive in looping thoughts and anxiety and uncertainty that require compulsions. And people do not understand how completely debilitating that can be in a person's life. So again, I've gone through a lot of it feeling misunderstood. I like to be organized. I've had the most well-meaning intentioned people in my life say, ⁓ well, I don't want to put my cup down on your desk before I have a coaster because I know you're just so OCD. Like I've heard that. I've heard people call me OCD, even in years past. And I thought, that's not even a thing that I have. I just like to be neat and tidy. Or because I like to keep my desk space organized or my bookshelves in my previous office so organized. Again, the most well-intentioned people would say, ⁓ look, it's just your OCD is coming out again. Or they would want to relate to me because maybe they're neat and tidy too. And it's, ⁓ my OCD can't take this. And you don't want to say anything to them because they're well-intentioned. They don't mean anything by it. They're not trying to offend. But no, you don't have OCD. And you don't know what it means to live with actual true OCD that now I know I have and I live with because I know the mental compulsions I have. do every day. I know the physical compulsions I've had to do to get through a day, a week, a month. And it becomes very isolating when you don't feel like you're truly understood. And then people just casually throw around the diagnosis of OCD or the label of OCD like it's no big deal. Or they want to say, ⁓ well, this person, I know someone who has OCD because they love their exercise routine or their morning ritual and, and it I won't say it's hurtful because that's going too far for me. I don't think it's hurtful. But again, it makes me feel misunderstood and isolated because they have no idea what it has taken for me to embrace the exposures that I've had to go through to embrace the exhaustion at home that I have put my husband, my children through now even. This wasn't an easy just, ⁓ the exposures and now we're good to go. This was a hard battle. that we fought last year, especially to overcome even to get as far as we've come. I know this one, I feel like I could go on a little bit of a a soapbox because. I feel like there's so many ways that that that OCD can be mislabeled or misunderstood, and just because you like things in a certain spot or you enjoy your morning ritual does not make you have OCD. And I'll say somebody that as the spouse. of somebody that has OCD. I'm an educator myself. So, you know, one of the things like when I'm talking with people and they're asking how we are, you know, we're now to that place that it's like, you know, both you and I feel comfortable sharing. Absolutely. Or sorry. Otherwise we would not be sharing this across the world. Right. You know, so I feel very, very. comfortable and confident to share the struggles that we've had in the past year to now. a lot of it is about, I feel it's about education. Yes. Educating people what OCD is. mean, just last week I got together with a group of people and one guy I had told a couple months prior that what you were going through and it's like, ⁓ my goodness. You know, he then asked me again, how you've been doing. And I said, ⁓ my goodness, it's like night and day. He's like, ⁓ I'm so glad to hear that. He's like, when you told me about it, I started thinking about what OCD could be. He's like, I even went and started doing a little bit of research on it just to have a little bit more knowledge about it. Because it is not something that is necessarily thrown out there. You don't see commercials necessarily about it. You don't see, you know. It might be played in movies, but not maybe appropriately depicted. Well, that's the whole idea, right? Is that it's so it really truly is one of the most misunderstood mental health disorders out there because there are so many layers of it and it can take on so many forms. I mean, we've addressed these topics in previous podcasts. It can have moving targets. can you really have to watch out for your intention behind while you're engaging in compulsions. mean, there's so much. And I always tell people, know, OCD, you know, it's more than just the washing of the hands or anything. It's it's whatever your brain can come up with. It is. could be an OCD. It is because the piece for me, the crux of OCD for me was the. Uncertainty of it all, of the I can't control this and. desperately fighting to get that control back and not feeling like I could sit with discomfort, not feeling like I could be okay without engaging in the compulsions. And again, like I've disclosed many times before, a lot of my compulsions tend to be mental compulsions where I'm having to talk to myself, give myself pep talks. I have a little ritualized story, if you will, that I tell myself when I have an uncomfortable moment. And it loops in my head until it feels just right. And so that can be very challenging, especially as again, we've shared, I was, we owned a business. was trying to run the business and I got caught up in so much of my, that's where my OCD really came out and got to the point where I did end up needing help because I couldn't control it any longer because it was taking over everything I was doing in the business. and creating an environment that I couldn't I couldn't successfully run the business any longer. But even today, you called me around noon and I didn't pick up and I sent ⁓ confessions of someone with OCD again. A text message. yes. And you said, ⁓ it's OCD 030. It's OCD O'clock, I think I said. Yeah, OCD O'clock. You've recognized that when it's coming out. be more of that OCD piece. ⁓ And that's a big part too. My awareness of it is so much greater than it used to be. So now I know I can acknowledge it, stop the thoughts or get or expose myself to the discomfort enough to bring down my anxiety naturally without engaging in the compulsions. ⁓ But yeah, I think I mean, this kind of speaks to the whole idea of today's episode too is that I liken myself to having a pretty good sense of humor. So ⁓ as does Mark and we have a lot of fun together and can make each other laugh. And I really enjoy that and have always thought that I had a good sense of humor. And so I do like to make jokes out of it. You know, it's OCD o'clock now. And so in those ways, I want to be able to let people who are listening know too that if you have OCD, Goodness knows you are more than just that diagnosis because goodness knows that I am. And I don't want every action, every word, every moment of my life now to be measured by an OCD standard. I want to acknowledge that I have it. I want to acknowledge how I've managed with it this long. I want to acknowledge what it's taken from me. But I also want to acknowledge that I live a much different life now than I used to. And that's what I have to tell people too. When we're talking about what's happened with us over the past year and half and I'm sharing some of those stories. But I have to tell them, people want to basically feel sorry for you is how I kind of feel when I'm sharing our stories. I have to tell them, hey, We're good. You don't need to feel sorry. know, when they say, ⁓ my goodness, I'm so sorry for that. I'm like, don't need to feel, you don't need to be sorry for this. It's like, this has been the best transformational piece of our life that we've ever gone through. You don't need to feel sorry. And I tell them, it's being cured of cancer almost. know, when somebody like, my dad went through cancer, you know? So, you know, I know that fairly closely too. when somebody does go in remission with cancer, it's a glorious time. It's kind of what's happened with your OCD. You've worked through treatment to kind of come into remission. It's going to come out every now and then, but people should feel happy, not, I'm sorry. Yeah. No, I understand. I understand that perspective and I agree with it because it really is, we're just so pleased to be on this side of it now where we can. have this podcast to share our story, to share our story with friends and family who are, you know, keeping up on how we're doing, et cetera. And to know and to see us now is exciting. Yeah. And yes, it's something that I've gone through, but... or... and something I still have to work on. But it isn't all of who I am. I have a very loving relationship with Mark. We have two amazing kids. I'm so proud to be their mom. I have a master's degree. I have a good sense of humor. I have a great way of remembering people's birthdays and names. I love to read and write. There's just a lot that goes into who Stacey is. And I've always been ⁓ a warmer, fuzzier. kind of person I dedicated my professional life so far to pediatrics and kids in need. And I've always felt. a pull to do that kind of work and. I've always looked at the brighter side of things. I've always, you know, had more of a sunshine personality because that's who I am. I do realize that part of that was my OCD speaking. And so I've had to parse that out. What part was my OCD and what part was truly me. ⁓ But I think since I've healed on this journey, I've had a better idea of who I am and who I'm not and who I want to be in this next chapter of my life and our life. I do not see that your personality has changed. That's good. From going through this, you you still have the same great sense of humor and you you're just able to speak up more. Yeah, definitely found my voice in this process. Yep. You know, you're not just a quiet person in the room anymore. You do speak up and share your opinion more. Sure. Because before it was if I shared my opinion and you know, it wasn't didn't hit right with that person or they didn't react the way I maybe wanted them to or that was too overwhelming for me. So my didn't share your opinion in that way. Now it's actually better because you are sharing your opinion. know, and you're not afraid to I feel lit up by it now in terms of just I feel excited by what life is going to bring on, even though I know I'm going to have more challenges with OCD to. Even parenting our kids, you're speaking up and sharing more of your thoughts on that side too. And our kids are wonderful kids. We both have done that. We have. And they're going to be very successful in life when they move forward. that's the hope of every parent. It is. So there are other types of OCD out there. And I think we've touched on those two through our time in these episodes in the podcast and just the different types of OCD and what it can be. And there is a very, there is one that is kind of called a pure OCD or a pure O and that is that very typical, stereotypical definition of it. ⁓ And there are some people who do have pure O and there are others that that don't and then they have different other forms of OCD, but the contamination, the cleaning, the checking, the harm, symmetry, ordering, hoarding, these are all different types and different symptoms that can come up with people who have OCD. a lot of people might suffer from scrupulosity OCD, which is moral or religious OCD, relationship OCD, perinatal and postnatal, postpartum OCD can often occur in people, in women. Symmetry and ordering, that's the one that requires things to feel just right. Intrusive thoughts ⁓ can be more related to pure O, which are unwanted or disturbing thoughts. And those are the hard ones. to have a piece of that as well because a lot of my compulsions then are mental, which does relate to when you start to have those intrusive thoughts, then you use mental compulsions to overcome those. ⁓ So yeah, I know that I've shared in my journey that my OCD kind of ticks a few of these boxes and I'm sure that's not uncommon for other people who truly, truly have OCD and know what it takes to fight through the need to compulse. And I think that when people share that they have OCD, think sometimes that maybe it gets frustrating. when people want to try to relate to them or they think that they know what it is, but they really don't. And that's hard. And for me, that's kind of that educational piece. And I wish people that didn't have OCD would listen to to understand a little bit more about what OCD is that educational piece. But that's one reason why we're doing this is to give back to the community and to educate people about what OCD is or is not. And truly that's what the initial stage of our therapy was too, is we went through a lot of the psycho education as to what OCD is and what it isn't and to really have those light bulb moments of, wow, this is what I've been dealing with all of these years. I my story, like I've shared before, it goes back to when I was a teenager. That's when I first started feeling the need to engage in compulsions, mostly mental. That's when I started to feel the intrusive thoughts coming along, ⁓ interfering in my everyday life. That's when I started to feel the need for things to be just right. The need to check in with people. Those are just a few of the ways that mine presented early on. And then as I got older, they just became. part of my life, but then also became unmanageable once I got to a certain point. And that point was our business. I do know like this last week in therapy, you know, now that you've gotten to that better space, you know, we did talk about me a little bit more. hmm. You know, I love those nights in therapy, y'all, when we talk about Mark, because that's doesn't happen very often. No, it should happen more often. Those are the fun ones for me. Yeah. Let's talk. But we. We talked a little bit more about my feeling towards it too, and that I might have a little bit of an unconscious worry that you might slip back into that. Yes, we did talk a lot about that. And you know what? Until that was brought up in our session, I never really thought about it like that. Because we've just been championing how much progress we've made. But I didn't think about you. having some residual feelings of, man, what if this goes wrong now? What if this goes backwards? Because we have it really good right now, I feel. I don't want to slip back to our old ways. Nor do I. I don't want that either. But it's a fight that we have to keep fighting. Yeah. But it's a worry that I have, you know, deep down. And, you know, I've got to acknowledge that I have that fear too. And sometimes your reactions to things at home are based on that worry and that fear. And I would be surprised if you're alone in that as a spouse or as a loved one who kind of a caregiver in that sense. I am kind of your OCD caregiver. that's a... think, wow, we have just coined a new term tonight, ladies and gentlemen, the OCD caregiver. I dig it. And that's a hard place sometimes to be, to make sure that we continue ⁓ to provide opportunities to practice the ERP. Definitely. while still maintaining a busy life with two kids. mean, we've talked about our son, he's about to graduate from high school and we've got a lot of things going on. And so we're trying to involve ourselves in life as much as possible. Yeah, it can be difficult, though. Yeah, yeah. You know, I know the next two weeks are going to be, you know, probably more difficult because there's a lot of things that are coming up. And you can almost gauge when There's gonna be days or weeks that will be challenging to my OCD, because they're gonna challenge my need for certainty and control and for things to be just right. And so I know too that I'm gonna have to sit in that more often. And I'm gonna have to be brave enough and bold enough and strong enough to do that. And I'll give you an example of a scenario that I struggle probably with more now than you do. It is, you know, like this weekend, you know, he's talking about, you know, going to some grad parties. Yes, our son, yes. Yeah, you know, because it's that time of year with grad parties and this and that. your previous life, you would be a ball of stress. A ball of mess. Yes, 100%. When he would be gone because you would be compulsive about something's going to happen to all of them. checking in with me 25 times and checking in with him 25 times and having text 28 times. Yes, absolutely. know, and so when he is out in those scenarios, I find myself kind of trying to, I check a little bit more. I don't have him text me anything like that, but I might check 360 a little bit more, that type of thing to try to anticipate your potential fault. I can see that and I can completely understand and respect that that is how you must be feeling. But I'm working through that myself to not have to do that piece. And then that means that I need to be strong enough to keep working on my piece. You know, it's like, OK, that's Saturday night. If he's not home by a certain time and I'm tired, I'm going to go to sleep. You know, but you might go like, ⁓ I'm going to stay awake until he gets home. But, you know. But I need to be strong enough not to let the anxiety overcomes that the panic and the intrusive thoughts set in, because it's so easy for me and it has been so easy for me to fall into a. Checking nature. With Mark. And so now. Because I know. what this has taken, the toll it's taken on him, I don't want us to fall backwards either. And I don't want to put any more undue stress or pressure on you. So I need to do my part as well. And that's just, that's just the plain truth of it, of it all is that I need to do my part in this because without that, I'm just causing more issues for everyone. marriage, family for me. And I don't want that. So I have to be. But we're both learning this too as well. ⁓ yeah. I'm learning to have to retrain ⁓ my habits. Yeah. You know, with what I used to do. Well, because that's the other part too. Our spouse, our spouses, just as we are more than our OCD, they're more than just the OCD caregiver. I like that. That's gonna stick, babe. That's good. In that, Mark has always been kind of a fix-it guy. He's always been ⁓ a real... Problem solver. Problem solver, yes, thank you. But very in tune with how I'm feeling and wanting to help and not just with me, with our children, with other people he's worked with, et cetera. Like, that's just who he is. That's his innate personality. He's more than just the caregiver trying to look for... opportunities for ERP and trying to make sure that I don't completely fall off the rails again. And so once again, this is what OCD is and what it isn't. And the more that we can work together, he and I and other other married couples who might be in the same position to recognize what it is and what it isn't. is a really important process in the healing as well, I think. And the education of it all. that speaks true to educating others as well. And being willing to educate others. know, like we have license plate holders now that say living uncertain. We do. Podcasts living uncertain. And so that brings on questions. know, and you have to be ready to answer those questions even with people that you might work with or not work with. to be an open book, you know, both you and I are, you know, introverts by trade, I think. Yes. But we live, we work in very extroverted industries. We do. And we're around people every day, all day long. and have to be on stage, I feel like, 24-7 when we're at work. But when we come home, we like to be more private. But this is putting that piece out there a little bit more. And I think we're proud of that. And I'm proud of all the episodes we've done. And this one as well is no exception to that. Really learning what OCD is and what it isn't. is a huge part of the process. And the most well-meaning people in your life can still misunderstand you, and it can feel isolating, but it doesn't have to. And I just, you know, once again, I want everybody to know that you are so much more than the OCD that you've lived with. Thanks, babe. You've grown. You know, out of that, just like I said, it's in a handbag now, a little clutch maybe, and it comes out a little bit more. All your purses that you like to have. but it's... pulled out clutch out of that? That's so true. I like that. But it's not a 200 pound rolling suitcase that it used to be. No, it isn't. And it's manageable now. you are so much more than that. And I want people to know that, ⁓ you know, and as we continue through our stories and, through more episodes, you know, it might feel like it's focusing on the negative aspect of who you are, but it's not even negative. It's a part of you. is. You know, it's something I know you wish you didn't have, but you do. Yep. You know, but we all have something. We do. I don't know if there's one perfect person out there in the world. and those of us who have so but no, but even even those of us who have OCD, we know as much as we try, we just cannot establish perfectionism. And that's something that we have to kind of learn to let go of, too. Yeah. So when you do run across somebody that has OCD, just just know they are so much more than just That OCD that they're struggling with. I know that their OCD most likely has layers. And unless you really know that person well. They have layers that you may have not seen. And it's important to at least think about that or acknowledge that in some way. Have some compassion. maybe try to gain some understanding of how it's impacting them. You know, asking them questions versus ⁓ saying, well, I know somebody that has OCD or, you know, I have OCD. And I think that's what a lot of people like to do. I think people get uncomfortable, too, when you're talking about it, too. Oh my goodness, you this is something negative with that person. So let's let's turn it around to me or whatever. So they'll take in, say, well, I've got OCD, too, because I like to, you know, keep my house clean and all that type of thing. Maybe they do. Maybe they don't. But just maybe ask if I could say it in this way. And it's because we watch this show and we love this show so much. But I think that the character of Ted Lasso says it really well when he says, be curious. Like if it's something you don't understand, be curious about it. Ask questions. Make sure that that person feels heard as well, because it takes a lot for those of us who have OCD to even disclose it at first. Or even have it be something we want to share. and to feel heard, to feel understood goes a long way in everyone's healing. So anyway, thank you all so much for listening again today. We so appreciate it. And if you want to join our show, please, ⁓ you know, the description of the episode, there's a link in there, you know, fill it out and join it. Even if your spouse isn't a part of it and you just want to share your story and you know, how maybe somebody supported you through your OCD journey. You know, we would love to hear your story as well. And we definitely would, you know, start to build those experiences that people have had and really looking forward to building this community and continuing to share our stories and other stories as we go along, you know, and down the road here, too. You know, I know we've talked with our kids to the, you know, they will want to they do want to join us to see you get their perspective to. you know, maybe in the near future, since we do have one going off to college and the other one starting high school. you know, they have their, their start of the stories too, with, with your OCD and how it's impacted them. And, you know, so I know we want to bring them on, but if you know anybody or if you want to come on, please fill out the interest form in the description. Yeah. Again, thank you all so much for always living uncertain with us every day. Absolutely. Thank you.