Kimberley: Welcome. This conversation is actually so near and close to my heart. I am so honored to have Jessie Birnbaum and Sandy Robinson here talking about Managing the anxiety of chronic illness and disability. Welcome and thank you both for being here.
Sandy: Thank you for having us.
Kimberley: For those of you who are listening on audio, we are three here today. We’re going to be talking back and forth. I’ll do my best to let you know who’s talking, but if anything, you can look at the transcripts of the show if you’re wondering who’s saying what. But I am so happy to have you guys here. You’re obviously doing some amazing work bringing awareness to those who have an anxiety disorder, specifically health anxiety OCD, panic disorder. These are all very common disorders to have alongside a chronic illness and disability. Jessie, will you go first in just telling us a little bit about your experience of managing these things?
Jessie: Yeah, of course. I’ve had OCD since I was a little kid but wasn’t diagnosed until around age 14, so it took a little while to get that diagnosis. And then was totally fine, didn’t have any physical limitations, played a lot of sports. And then in 2020, which seems like it would coincide with the pandemic (I don’t think it did), I started getting really physically sick. I started out with these severe headaches and has continued on and morphed into new symptoms, and has been identified as a general chronic illness. I’m still searching for an overall diagnosis, but I’ve seen a lot of different ways in which my OCD has made my chronic illness worse. And then my chronic illness has made my OCD worse, which is really why Sandy and I are so passionate about this topic.
Kimberley: Thank you. Sandy, can you share a little about your experience?
Sandy: Yeah. Just briefly, I was born really prematurely at about 14 weeks early, which was a lot. And then I was born chronically ill with a bowel condition and I also have a physical disability called [02:31 inaudible] palsy. And then I wasn’t diagnosed with OCD until I was 24, but looking back now, knowing what I do about OCD, I think I would say my OCD probably started around age three or something. So, quite young as well.
Kimberley: You guys are talking about illnesses or medical conditions that create a lot of uncertainty in your life, which is so much of the work of managing OCD. Let’s start with you Jessie again. How do you manage the uncertainty of not having a diagnosis or trying to figure that out? Has that been a difficult process for you, or how have you managed that?
Jessie: It has been such a difficult process because that’s what OCD latches onto, the uncertainty of things. That’s been really challenging with not having a specific diagnosis. I can’t say, “Oh, I have Crohn’s disease or Lyme disease,” or something that gives it a name and validates the experience. I feel like I have a lot of intrusive thoughts and my OCD will latch onto not having that diagnosis. So, I’ll have a lot of intrusive thoughts that maybe I’m making it up because if the blood work is coming back normal, then what is it? I’ll have to often fight off those intrusive thoughts and really practice mindfulness and do a lot of ERP surrounding that to really validate my experience and not let those get in the way.
Kimberley: Sandy—I can only imagine, for both of you, that is the case as well—how has your anxiety impacted your ability to manage the medical side of your symptoms?
Sandy: I think that’s an interesting question because I think both my OCD and my medical symptoms are linked. I think when I get really stressed and have prolonged periods of stress, my bowel condition especially gets a lot worse, so that’s tricky. But I think as I’ve gone through ERP, and I’m now in OCD recovery, that a lot of the skills I’ve learned from being chronically ill and disabled my whole life, like planning, being a good self-advocate at the doctors or at the hospital and that flexibility, I think those tools really helped me to cope with the challenges of having additional anxiety on top of those medical challenges.
Kimberley: Right. Of course, and I believe this to be from my own experience of having a chronic illness, the condition itself creates anxiety even for people who don’t have an anxiety disorder. How have you managed that additional anxiety that you’re experiencing? Is there a specific tool or skill that you want to share with people? And then I’ll let Jessie chime in as well.
Sandy: Yeah. I think the biggest thing is, it was realizing that my journey is my journey and it might be a little slower than other people’s because of all the complicating factors, but it’s still a good journey. It’s my journey, so I can’t really wish myself into someone else’s shoes. I’m in my own shoes. I guess the biggest thing is realizing like my OCD isn’t special because I have these complicating factors, even though I myself am special. My OCD is just run-of-the-mill OCD and can still be treated by ERP despite those medical issues as well.
Kimberley: Right. How about you Jessie? What’s your experience of that?
Jessie: I’d like to add to what Sandy had said too about the skills from ERP really helping. One of the things I feel like I’ve gone through is there’s so much waiting in chronic illness. You’re waiting for the doctors to get back to you, you’re waiting for test results, you’re waiting for the phone schedulers to answer the phone. I feel like I’ve memorized the music for the waiting of all the different doctors. But there’s a lot of waiting, and that’s really frustrating because the waiting is uncertain. You’re just waiting to get an answer, which typically in my case and probably Sandy’s and yours as well, then just adds more uncertainty anyways.
But I remember one of the tools that’s really helped me is staying in the present, which I’m not great at. But I remember I had to get an MRI where you literally can’t move. There’s only the present. You’re there with your thoughts, your arms are in, you can’t move at all. It was really long. It was like 45 minutes long. I remember just thinking the colors. What do I see? I see blue, I see red. I thought I had to think of things because then my eyes were closed and I was thinking of different shapes of like, “Oh, in the room before, I saw there was a cylinder shape and there was a cube.” That’s really helped me to stay in the present, especially with those really long waiting periods
Kimberley: For sure. The dreaded MRI machine, I can totally resonate with what you’re saying. It’s all mindfulness. It’s either mindfulness or you go down a spiral, right?
Kimberley: You guys are talking about skills. Because I think there’s the anxiety of having this chronic illness or a disability or a medical condition. What about how you manage the emotions of it and what kind of emotions show up for you in living with these difficult things that you experience? Sandy, do you want to share a little about the emotional side of having a chronic illness or a disability?
Sandy: Yeah. I think the first thing that shows up for me emotion-wise, or did at least when I started to process the idea that I have a disability and I have these chronic illnesses and it’s going to be a lifelong thing, was I was in my undergraduate university and I really hadn’t thought much about what it’s like to-- I had thought about having a disability, but I hadn’t thought about the fact that I needed to process that this is a lifelong thing and it’s going to be challenging my whole life. I think when I started to process that, the grief really showed up because I had to grieve this life that I thought I should have of being able-bodied or medically healthy or mentally well, I guess. I had to really grieve that. But I think that grief shows up sometimes unexpectedly for me too because sometimes I feel like I moved past this thing that happened. But then because it’s an ongoing process to navigate chronic illness and disability, the grief shows up again at unexpected times.
I think the other thing too I’ve navigated was a lot of shame around the idea that I should be “normal.” But of course, I can’t really control how I was born and the difficulties I’ve had. I think something that really helps me there is bringing in the self-compassion. I do think that compassion really is an antidote to shame because when you bring something out to the forefront and say, “This is something that I’ve experienced, it was challenging,” but I can still move forward, I think that really helps or at least it helps me.
Kimberley: Yeah, I agree. Jessie, what are your experiences?
Jessie: I would say the first two words I thought of were frustration and loneliness. I think there’s a lot of frustration in two different ways. The first way being like, why is this happening? First, I had OCD, and then now I have this other thing that I have to deal with. As Sandy was saying before, there’s a lot of self-advocacy that has to happen when you’re chronically ill, or at least that I’ve experienced, where you have to stand up for yourself, you have to finagle your way into doctor’s appointments to get the treatment that you deserve. But there’s also the frustration that both OCD and my chronic illness, I guess, are invisible. I look totally fine. I look like someone else walking down the street who might be completely healthy. I often feel frustrated that as a 23-year-old, a person who is a young adult, I’m having to constantly go to these doctor’s appointments and advocate for myself and practice ERP, which is not always the most fun thing to do. It’s frustrating to constantly have to explain it because you don’t see it. And then that goes together with the loneliness of being a young adult and being pretty much the only person in the doctor’s offices and waiting rooms who isn’t an older adult or who isn’t elderly. And then they get confused and then I get confused. My OCD will then attack that like, “Everyone else is older. What are you doing here?” I would definitely say loneliness, and I just forgot the other thing. Loneliness and frustration.
Kimberley: I resonate with what you’re saying. I agree with everything both of you are saying. For me too, I had to really get used to feeling judged. I had to get good at feeling judged, even though I didn’t even know if they were judging me. But that feeling that I was being judged, maybe it’s more magical thinking and so forth. But that someone will say like I have to explain to someone why I can’t do something. As I’m explaining it, I have a whole story of what they’re thinking about me, and that was a really difficult part to get through at the beginning of like, “You’re going to have to let them have their opinions about you. Who knows what they’re thinking?” That was a really hard piece for me as well. I love that you both brought in the frustration and the loneliness because I think that’s there. I love that we also bring in the grief, and I agree, Sandy. Jessie, do you agree in terms of that grief wave just comes at the most random times?
Kimberley: It can be so, so painful. Let’s keep moving forward. Let’s go back to talking about how this interlocking web of how anxiety causes the chronic illness to get worse sometimes, the chronic illness causes anxiety to get worse sometimes. Sandy, have you found any way that you’ve been able to have a better awareness of what’s happening? How do you work to pull them apart or do you not worry about pulling them apart?
Sandy: Oh, that’s an interesting question. I think I have a few strategies. I do try to write everything down. I make notes upon notes upon notes of, this day I had these symptoms. I do automate a lot of tasks in the fact that I have a medication reminder on my phone, so it reminds me to take my pills instead of just having to remember it off the top of my head. Something that really helps is trying to remember that things that work for other people might actually also work for me too, because it’s like, yeah sure, maybe me as a person, I’m unique and my medical situation is interesting or different or whatever. But a lot of good advice for other people, especially for mental health works for me too, like getting outside. Even if I feel really not great and I’m really tired or in a lot of pain, just like getting outside. Anytime I have my shoes on and I’m just outside even for five minutes, I count that as a win. Drinking a lot of water, for me, helps us too. Of course, I’m wary of saying all this because a lot of people might just say, “Oh well, Jessie and Sandy, they just need to do more yoga and that’ll just cure them.” Of course, it’s not that simple. It’s not a cure at all. But at the same time, I try to remember that at least for me, I have common medical issues that a lot of different people have so I can pull on literature and different things that I’ve worked for other people with my conditions. Maybe other people haven’t had this exact constellation that I do, but I can still pull on the support and resources from other people too.
Kimberley: How about you, Jessie?
Jessie: If I could add there, I’m not as good as differentiating. I can tell, like I know when things are starting to get compulsive, which I actually appreciate that I had had so much ERP training before I got sick because I really know what’s a compulsion, what’s an obsession and I can tease that out. But a lot of my treatment has also been really understanding, like maybe I don’t need to know if this is my chronic illness or if this is my OCD because then that gets compulsive. I’ve had to sit in that uncertainty of maybe it is one, maybe it is the other, but I’m not going to figure it out.
Kimberley: You read my mind because as you were both talking, I was thinking the most difficult part for many people that I see in my practice is trying to figure out and balance between advocating going to the doctor when you need, but also not doing it from a place of being compulsive because health anxiety and OCD can have you into the doctor surgery every second day or every second hour. How are you guys navigating that of advocating, but at the same time, keeping an eye on that compulsivity that can show up? Sandy, do you want to go first?
Sandy: Yeah. I honestly haven’t figured out the perfect formula between trying to figure out like, is this anxiety around the potential that I might be getting sick again and compulsively trying to get things checked out, and the idea that I might have something actually medically going wrong that needs to be addressed. I find it still challenging to tease those things apart. But I think something that does help is trying to remind myself like, not what is normal, because I don’t think normal really exists but what is in the service of my recovery. I can’t have recovery from my disability or my chronic illnesses, but I can’t have OCD recovery. I’m always still trying to think to myself, how can I move forward in a way that both aligns with my values and allows me to move forwards towards my recovery?
Kimberley: How about you, Jessie?
Jessie: It’s so hard to follow that, Sandy. I love that. I would say, I think it’s tough because a symptom that I have is like, I was never really a big compulsive Googler. But I know in OCD world, it’s like, “Don’t go to Google for medical issues. Google is not your friend.” But for my chronic illness recovery or chronic illness journey, Google’s been important. I’ve had to do a lot of research on what is it that I possibly have. And that really helps me advocate my case to the doctors because I’ve had some great doctors, but they’re not spending hours reading medical journals and trying to figure it out to the extent that I care about it because it’s my situation and I want to figure stuff out. Googling has actually helped me a lot in that regard and joining different Facebook groups and actually hearing from other people what their experiences have been.
I know Sandy and I started a special interest group, which hopefully we’ll talk about a little later, but someone in the group had mentioned that something that really helps them is the community of their doctors and their therapists working together of, oh, I’m going to wait two days if I have this symptom and if it’s still a symptom that’s really bothering me and my therapist thinks it should be checked out, then I’m going to go to the doctor. Having those people who are experts guiding you and helping you with making sure, no, this isn’t compulsive, this is a real medical thing that needs to be checked out—I thought that was really smart and seemed to work for her, so I’d imagine it would work for other people as well.
Sandy: I guess if I can add--
Kimberley: I have a question about that. Yes, please.
Sandy: Oh, sorry. If I can add one more thing, it would just be that, while there’s so many experts on OCD and ERP and your chronic medical issues or your disability or whatever it is for you, you are the only frontline expert in your own experience of your mind and your body and you are the only one who knows what it’s like to exactly be in that, I guess, space. While I 100% think therapy is important, evidence-based treatments are important, I do also think like remembering when you think like, “Oh, this is really hard,” or “I can’t cope,” actually, you can cope, you’re capable and you know yourself best. I think that’s challenging because I know sometimes in ERP, for people who maybe don’t have other complicated medical challenges, they would say, “Don’t Google.” But I think, as just Jessie has explained, sometimes because we have other chronic stuff going on, we do need to do things to help ourself holistically too.
Kimberley: I love that. I’ll speak from my own experience and if you guys want to weigh in, please do. I had to always do a little intention check before I went down into Google like, okay, am I doing this because anxiety wants me to do it, or am I doing it because this will actually move me towards being more informed, or will this actually allow me to ask better questions to the doctor and so forth? It is a tricky line because Google is the algorithm and the websites are set to sometimes freak you out. There’s always that piece at the bottom that says, “It could be this, this, or this,” or “It could be cancer.” That always used to freak me out because that was something that the doctors were concerned about as well. This might be beyond just Googling, but in terms of many areas, how did you make the decision on whether it was compulsive or not? Jessie?
Jessie: It’s tough too because then you’re down the rabbit hole. You’ve already been Googling it and it’s like, “Or this,” and I’m like, “Well, I have to figure out what that is.” Sometimes it does get a little compulsive and then the self-compassion, and also realizing it like, okay, now it’s getting compulsive and I’m going to stop and go about my day. But another thing that I’ve struggled with is the relationship with doctors. Sandy and I have talked about this before with wanting to be the “perfect” patient. I worry that I’m messaging them too much or I’ll often now avoid messaging them because then I don’t want to be too annoying of a patient. I can’t be the perfect patient if I’m messaging them all the time. It really is, like you said, the intention. Am I messaging them because I want to move forward with this and I want an answer, or am I messaging them because there’s a reason to message them and I need their medical advice? There’s just so much gray in it. Again, not necessarily having that specific answer, it can be very tricky.
Kimberley: It truly can. How about you, Sandy?
Sandy: I think the biggest thing for me, and I’m still trying to figure out the right balance for this, is weighing how urgent is this medical symptom. Am I-- I don’t know, I don’t want to say something that would put someone into a tailspin, but do I have a medical symptom going on right now that needs urgent attention? If so, maybe I should go to my doctors or the ER. Or is the urgency more mental health related, feeling like an OCD need to get that reassurance or need to know, and just separating the urgency of the medical issue that’s going on right this second versus the urgency in my head.
Kimberley: Amazing. You guys have created a special interest group and I’d like to know a little more about that. I know you have more wisdom to tell and I want to get into that here a little bit more. But before you do, share with us how important that part of creating this special interest group is, how has that benefited, what’s your goals with that? Tell us a little bit about it, whoever wants to go first.
Jessie: Sandy and I actually met in an online OCD support group, and I found those online groups to be really helpful for my OCD recovery and mostly with feeling less shame and stigma. Met some amazing people clearly. And then I remember Sandy had mentioned in one of the different groups that she had a chronic illness. When I was going through my chronic illness journey, I felt really alone. As I was saying before, the loneliness is one of the biggest emotions that I had to deal with. I looked online, and now online support groups are my thing. Let’s just Google chronic illness support groups. I thought it would be as easy as OCD support groups, and it wasn’t. It was very challenging and it was really hard to find one.
I found one that was state-based. For my state, it was me and three women. I think one was in their eighties, the other two were in their nineties, and they were very sweet. But we were at very different lifestyle changes. We were going through very different experiences. I remember I reached out to Sandy and I said, “Do you have any chronic illness support groups that you’ve been attending?” Even in that group with the elderly women, there were so many things that they were saying that helped them with their chronic illness and my OCD would totally have latched onto all of it. I was like, “I can’t do that with my OCD.” There’s so much overlap that it just seemed like there needed to be this dual chronic illness and OCD. Sandy had said she had the same issue, like it was really hard to find these groups.
I think we’re really lucky that the International OCD Foundation was such a good partner for us and they were so kind in helping us get this special interest group started. I’m interested to hear what Sandy says, but it’s been so helpful for me to see that there are other people who deal with a lot of these challenges. Of course, I wouldn’t want anyone else to have these experiences, but being able to talk about it, being able to share has just been so helpful. I was really quite amazed to see the outreach we had and how many people struggled with this and that there really weren’t any resources. It’s been pretty amazing for me and I’m really lucky that we’ve been able to have this experience.
Kimberley: Amazing. Sandy?
Sandy: Similar to Jessie, I had found some resources for OCD support groups both locally to me in Ontario and online, and that was great. The sense of community really helped my OCD recovery. But then when it came to the chronic illness disability part, there was just a gap. As Jessie said, we started this special interest group and I think it’s called—Jessie, correct me if I’m wrong—Chronic Illness/Disability Plus OCD is our official title. Basically, it’s for anyone who has a chronic illness or disability and OCD, or is a clinician who’s interested in learning more. Our goals really are to create a community, but also create resources for the wider OCD community to help people who are struggling with chronic illness or disability and OCD or clinicians.
The sense of community has been great. I think for my own recovery OCD-wise, it’s been really motivating to be able to help found and facilitate this group because it’s showed me that I really don’t have to be in this perfect state of recovery to have something valuable to contribute. I just have to show up in an imperfect way and do my best and that is enough in itself, and that the fact that I don’t have to get an A+ in recovery because that’s not even a thing you can get. I just have to keep trying every single day and try to live my values. I think this SIG’s been a great opportunity to embody those values as well of community and advocacy. It’s just been great.
Kimberley: Oh, I love it so much and it is such an important piece. I actually find the more I felt like I was in community, that in and of itself managed my anxiety. It was very interesting how just being like, “Oh, I’m not alone.” For some reason, my anxiety hated this idea that I was alone in this struggle. I totally just love that you’re getting this group and I’ll make sure that all of the links are in the show notes so people can actually access you guys and get connected.
I have one extra question before I want to round this out. How do you guys manage the—I’m going to use the word “ridiculous”— “ridiculous” advice you get from people who haven’t been what you’ve been going through? Because I’ve found it actually in some cases to be quite even hilarious, the suggestions I get offered. Again, I know patients and clients have had a really difficult time because they might have been suggested an option, and then their anxiety attaches to like, “Well, you should do that,” and so forth. Sandy, do you want to go first in sharing your experience with “ridiculous” advice?
Sandy: I guess to give a brief example, a practitioner who I’ve worked with for quite a while, who I think is great and a wonderful person and wonderful practitioner, had in the last couple months suggested that maybe I should just try essential oils to manage my bowel condition. What actually was needed was hospitalization and surgery. It’s that kind of advice from both well-meaning practitioners or just people in my life that can be not what you need to hear and maybe not as supportive as they’re hoping it would be. I guess for me, I manage it mostly by saying, “Thank you, that’s a great idea,” even when it’s not really a great idea. I just say to myself or maybe to a support person later, “That was not the best advice.” Just debriefing it with someone I think is really helpful, someone that I trust.
Jessie: Kimberley, I love this. I think, Sandy, our next SIG, we should ask this and hear all the ridiculous advice that people have been given because it’s true. There’s so many things that are so ridiculous. I’m going to shout out my mom here who I love more than anything in the world, but even my mom who lives with me some of the time and sees what I go through, one time she called me (she’s going to kill me) and she said, “I heard there’s a half-moon at 10:30 AM your time and if you stand outside, it will heal some of your rear rash.” I was like, “What? That’s absurd.” She was like, “I know, I think it’s absurd too, but you need to do this for me.” With that, you see she just wants me to get better. As Sandy was saying, people really want to help and this is a way they think they can help. I’ve also been told like, “Oh, if you mash up garlic and then you put--” it was like this weird recipe, then you want to had it. Just ridiculous things. But people are really well-meaning and they want to help. Unfortunately, those often don’t really help. But now I can laugh about it and now text my mom and be like, “You’ll never guess what so-and-so said,” or text Sandy and we could have a good laugh about it. But that’s what’s nice about community. You’re like, “Wait, should I do this essential oil thing?” And then you realize from others, “No, that’s probably not the best route to go.”
Kimberley: For me, with anxiety, self-doubt is a big piece of the puzzle. Self-doubt is one of the loudest voices. When someone would suggest that, I would have a voice that would say, “It’s not going to hurt you to try.” And then I would feel this immense degree of self-doubt like, “Should I? Should I not? What do you think?” “You could try. You should try.” I’m like, “But I literally don’t have time to go and stand in the sun and do the thing,” or in your example. I would get in my head back and forth on decision-making like, “Should I or shouldn’t I?” “It wouldn’t hurt.” “It sounds ridiculous, but maybe I should.” And that was such a compulsive piece of it that would get me stuck for quite a while. It’s often when it would be from a medical professional because it really would make you question yourself, so I fully resonate with that. Sometimes I wish I could do a hilarious Instagram post on all of the amazing advice I’ve been given throughout the time of having POTS. Some of it’s been ridiculous.
Let me ask you finally, what advice would you give somebody who has an anxiety disorder and is at first in the beginning stages of not having these symptoms and not knowing what they are? Jessie, will you go first?
Jessie: Yeah. I would say a big thing, as we’ve been talking about, is finding that community whether that be reaching out to us with the SIG or whether that be finding a Facebook group or online group or whatever it may be, because it has helped me so much to reach out and be in a community with others who really understand. There’s nothing like people who truly get it. And then I would say to validate like, this is really tough. Having OCD is tough. Having a chronic illness or disability is tough, and having both is very, very tough. Validate those symptoms too because I think there’s a lot of people that will say, “Oh, you have an anxiety disorder, you’re probably making that up,” and that comes up a lot. Just validating that and really trying to find other people who are going through it because I think that’s just irreplaceable.
Sandy: I think the biggest thing to echo Jessie would be try to find community. I think for me, for my OCD recovery journey, Instagram has particularly been great because there’s so many wonderful OCD advocates or clinicians on Instagram. It’s really a hub for the OCD community. I would say check out Instagram and once you follow a couple of people from the OCD community, the algorithm will show you more so it’s nice that way. I think the other thing is that being disabled or having a chronic illness can really chip away your confidence. Just reminding yourself that you’re doing the best you can in a really hard situation, and it may be a long-term situation, but just because your life is different than other people doesn’t mean that it’s not going to be a great life.
Kimberley: I’m actually going to shift because I wanted to round it out then, but I actually have another question. Recently, we had Dr. Ashley Smith on talking about how to be happy during adversity. I’m curious, I’ll go with you, Sandy, first because you just said, how do you create a wonderful, joyful life while managing not only an anxiety disorder, but also chronic illness or disability? What have you found to be helpful in that concoction per se?
Sandy: I listened to that episode with Dr. Smith and that was a wonderful episode. If people haven’t listened to it, I recommend it. I listened to it twice because I just wanted to go back and pick out the really interesting parts. But I think for me, the combination of finding things that are both meaningful from a values and an acceptance and commitment therapy (ACT) perspective, meaningfulness, finding those things that matter to me, but also finding the things that challenge me. If I’m having a really bad pain day or fatigue day, the things that challenge me might just be getting out of bed, or maybe I’m really depressed and that’s why I can’t get out of bed. Either or, your experience is valid, and just validating your own experience and bringing in that self-compassion and saying, what is something that can challenge me today and bring me a little closer to recovery? Even if it’s going to be a long journey, what’s this one small thing I can do, and break it down for yourself.
Kimberley: Amazing. I love that. What about you, Jessie?
Jessie: I would say I’ve been able to find new hobbies. I’m still the same person. I’m still doing other things that I found meaningful and this doesn’t. Well, it is a big part of my life. It’s not my entire life. I’m still working and hanging out with friends and doing things that regularly bring me happiness. But just a small example, I said before, I used to play sports and love being really active and that gets a little harder now. But something I found that I really love is paint by numbers because they’re so easy. They’re fun, they’re easy, you don’t have to be super artistic, which is great for me. I’m able to just sit down and do the paint by numbers. Even recently I had friends over and it was like a rainy day and we all did a craft. Even though it was a really high-pain day for me, I was in a flare of medical symptoms, I was still able to engage with things that I find meaningful and live my life.
Kimberley: I love that. Thank you. That’s so important, isn’t it? To round your life out around the disability or the chronic illness or your anxiety. I love that. We talked about those early stages of diagnosis, any other thing that you feel we absolutely have to mention before we finish up? Sandy?
Sandy: I guess to quote someone you’ve had on the podcast before, Rev. Katie, I find her content amazing and she’s just a lovely person. But she always says, you are a special person, but your OCD is not special. Your OCD isn’t fundamentally different or it’s never going to get better. You got to remember that you are the special person and your OCD doesn’t want you to recognize that you are the thing that’s special, not it. Just be able to separate yourself from your anxiety disorder or your chronic illness or your disability, saying, “I’m still me and I’m still awesome, and these things are just one part of me.”
Kimberley: So true. I’m such a massive Katie fan. That’s excellent advice. Jessie?
Jessie: To go the other route, I think you said right with people who are first going through this. I would say we recently did a survey of our SIG, so people who have chronic illness and OCD. We haven’t done all the data yet, but the thing that really stood out was we asked the question like, have you ever felt invalidated by a medical professional or mental health professional, and every single person said yes and then explained. Some people had a lot to say too. I think I’ve really learned in this process that you have to be a self-advocate. It’s very challenging to be an advocate when you’re going through a mental disorder, a physical disability, and/or both. It’s required. Really standing up for yourself because it’s going to be a tough journey and there’s so much light in the journey too. There’s so many positive things and so much “happiness” from the episode before, but there’s also a lot of difficulties that can come from being in the medical world as well as the mental health world and really trying to navigate both of them and putting them together. Really try to advocate for yourself or find someone who could help you advocate for yourself and your case because I think that’ll be really helpful.
Kimberley: So true. You guys are so amazing. Jessie, why don’t you go first, tell us where people can get resources or get in touch with you or the SIG, and then Sandy if you would follow.
Jessie: We have an Instagram account where we’ll post-- we’re experiencing with Canva. We’re really working on Canva and getting some graphics out there about the different things that come up when you have both of these conditions. And then that’s where we post our updates for the special interest group. Sandy, correct me if I’m wrong. @chronically.courageous is our Instagram handle. And then in there, the link is in our bio to sign up for the special interest group. You get put on our email list and then you’ll get all the emails we send with the Zoom links and everything. And then you could also go to the International OCD Foundation’s website and look at the special interest groups there and you’d find ours there.
Sandy: The other thing is we meet twice a month. We meet quite frequently and we’d love to have you. So, please check out our Instagram or get at our email list and we would love you to join.
Kimberley: You guys, you make me so happy. Thank you for coming on the show. I’m so grateful we’re having this conversation. I feel like it’s way overdue, but thank you for doing the work that you’re doing. Thank you so much.
Jessie: Thank you. Sandy: Thanks for having us.
Kimberley: My tummy already hurts from laughing too much. I’m so excited to have you guys on. Today, we are talking about thriving in relationships with OCD and we have Rev. Katie O’Dunne and Ethan Smith. I’d love for you both to do a quick intro. Katie, will you go first?
Katie: Yeah, absolutely. My name is Reverend Katie O’Dunne. I always like to tell folks that I always have Reverend in my title because I want individuals to know that ordained ministers and chaplains can in fact have OCD. But I am super informal and really just go by Katie. I am an individual who works at the intersection between faith and OCD, helping folks navigate what’s religious scrupulosity versus what is true authentic faith. I’m also an OCD advocate on my own journey, helping individuals try to figure out what it looks like for them to move towards their values when things are really, really tough. Outside of being a chaplain and faith in OCD specialist and advocate, I’m also an ultramarathon runner, tackling 50 ultramarathons in 50 states for OCD. As we get into stuff with Ethan today, Ethan is my biggest cheerleader throughout all of those races. I’m sure we’ll talk all about that too, running towards our values together.
Ethan: My name is Ethan Smith. Katie is my fiancé. I’m a national advocate for the International OCD Foundation, a filmmaker by trade, and a staunch advocate of all things OCD-related disorders. Definitely, my most important role is loving Katie and being her biggest cheerleader.
Katie: Since you said that, one of my things too, I am the fiancé of Ethan Smith. Sorry.
Ethan: Please note that this is an afterthought. It’s totally fine.
Kimberley: No, she knew you were coming in with it. She knew.
Ethan: Yeah, I was coming in hot. Yup, all good.
Kimberley: Thank you both for being on. I think that you are going to offer an opportunity for people to, number one, thriving in Relationships with OCD, but you may also bring some insight on how we can help educate our partners even if they don’t have OCD and how they may be able to manage and navigate having a partner with OCD. I’m so excited to have you guys here. Thank you for being on. Can you first share, is it easier or harder to be in a relationship with someone with OCD? For you having OCD?
Ethan: I’ll let Katie start and then I’ll end.
Katie: Yes. No, I think it’s both. I think there are pros and cons where I think for so long being in relationships with individuals who didn’t have OCD, I desperately wanted someone to understand the things that I was going through, the things that I was experiencing, the intensity of my intrusive thoughts. I was in so many relationships where individuals felt like, well, you can just stop thinking about this, or you can just stop engaging in compulsions. That’s not how it works. It has been so helpful to have a partner through my journey who understands what I’m going through that can really say, “I actually get it and I’m here with you in the midst of that.” But I always like to be honest that that can also be really, really challenging where there are sometimes points, at least for me, having OCD with a partner with OCD, where if we are having a tough point at the same time, that can be really tough. It can also be really tough on a different level when I see Ethan struggling, not reassuring him even more so because I know how painful it is and I want so badly to take that away. There are times that that can feed into my own journey with OCD when I see him struggling, that my OCD latches onto his content, vice versa. There’s this amazing supportive aspect, but then there’s also this piece I think that we have to really be mindful of OCD feeding off of each other.
Ethan: I was just making notes as you were-- no, go ahead.
Kimberley: No, go ahead, Ethan. I’m curious to know your thoughts.
Ethan: Katie made all great points, and I agree. I mean, on the surface, it makes a lot of sense and it seems like it’s fantastic that we both can understand each other and support each other in really meaningful and value-driven ways. I always like to say that we met because of OCD, but it by no means defines our relationship or is at the heart of our relationship. It’s not why we work. It’s not what holds us together. I think Katie brings up two good points. First of all, when I would speak and advocate with parents and significant others and things like that, and they would say, “I’m having a really hard time not reassuring and not enabling,” I’d be like, “Just don’t, you’re making them sicker. Just say what you got to say and be tough about it.” Then I got in a serious relationship with Katie and she was suffering and hurting, and I was like, “Oh my God, I can’t say hard things to her.” I became that person. I suddenly understood how hard it is to not engage OCD and to say things that aren’t going to make her comfortable. I struggle with that. I struggle with standing my ground after a certain amount of time and wanting to desperately give in and just make her feel better. I just want her to feel better.
For me personally, I lived alone for 10 years prior to meeting Katie, and those 10 years followed my successful treatment and recovery from OCD. For me, my mother was my safe person. I learned during treatment and therapy that you don’t talk about your OCD around your parents anymore. You just don’t. That’s not a conversation you have. I found myself, other than within therapy, not ever talking about my OCD. I mean, advocacy, yes, but my own thoughts, I never talked about it.
Starting to start a relationship with Katie, I suddenly had someone that understood, which was wonderful, but it also opened up an opportunity for OCD to seek reassurance. I’m an indirect reassurance seeker. I don’t ask for it as a question; I simply state what’s on my mind, and just putting it out there is reassuring enough for me. For instance, like, “Oh, this food tastes funny.” Whether she says it does or it doesn’t, I really don’t care. I just want her to know that I think that it does, and it could be bad. I think this is bad. I’m not saying, “Do you think it’s bad?” I’m like, “I think it’s bad. I think there’s something wrong with this.” I’ve had to really work and catch myself vocalizing my OCD symptoms because having a partner that understands has given my OCD permission to vocalize and want to talk about it. That honestly has been the biggest challenge for me in this relationship.
Kimberley: So interesting how OCD can work its way in, isn’t it? And it is true. I mean, I think about in my own marriage, at the end of the day, you do want to share with someone like, “This was hard for me today.” You know what I mean? That makes it very complicated in that if you’re unable to do that. That’s really interesting. Let’s jump straight to that reassurance seeking piece. How do you guys navigate, or do you guys create rules for the relationship? How are you thriving in Relationships with OCD related to reassurance seeking or any compulsion for that matter?
Katie: A couple different things. I think part of it for us, and we by no means do this perfectly, I’d have to have conversations about it even-- yes, Ethan, you might do it perfectly, but even in the last week, we’ve had conversations about this where what Ethan responds well to is very different from what I respond well to. I think that is really important to note, especially when there’s two partners with OCD, that it’s not one size fits all. It’s not because I understand OCD that I know exactly how to respond to him. It’s still a conversation. For me, I respond really well if I’m seeking reassurance or I’m struggling to a lot of compassion where he doesn’t respond to the content, but tells me, “I know that this is really hard. This sounds a lot like OCD right now, but let’s sit with it together. I know that it sucks, but we can be in the midst of this. We aren’t going to talk about it anymore, but I love you. We’re going to watch a show. We’re going to do whatever it is we’re going to do, we’re going to be in it together.” I respond really well to that.
Ethan, on the other hand, does not respond quite as well to that and actually responds better to me being like, “Hey, stop talking about that. We are not going to talk about this right now. I have heard this from you so many times today. No, no, no, no.” He responds in a harsher tone. That’s really hard for me because that is not naturally what comes out of me, nor what is helpful for me. Sometimes the compassion that I offer to Ethan becomes inherently reassuring and is just not something that’s helpful for him, so we have to have these conversations. Vice versa, sometimes when I’m really struggling, he’ll forget the compassion piece works for me and is like, “Hey, Katie, no. Stop doing that.” I’m like, “Seriously? This is really hard.” Being able to have those conversations.
Kimberley: How do those conversations look, Ethan? Can you share whatever you’re comfortable sharing?
Ethan: Yeah. Katie hit over the head, first of all. We are definitely products of our therapists when we’re struggling. For those of you that may or may not know, Katia Moritz, she is hardcore, like here’s what it is, and I’m a product of that. There’s like, “Nope, we’re not going to do it. We’re not going to have it. OCD is black and white, don’t compulse, period. End of story.” Katie is like, “Let’s take a moment.” My natural instinct on how I respond to her is very different to what she needs and vice versa. We’ve learned that. I would say that the rule in our household is we’re a no-content household. I’m not saying we succeed at that all the time, but the general rule is we’re not a content household. We don’t want a no content. You can say that you’re struggling. You can say that you’re having a hard day. You can say that OCD is really loud today. Those are all okay things. But I don’t want to hear, and Katie doesn’t want to hear the details because that inevitably is reassuring and compulsy and all of those things. That’s our general rule. I’ll talk for me, and I don’t know, Katie, I’ll ask you ahead of time if it’s okay to share an example of our conversation, but my stuff, like I said, it’s covert reassurance seeking and she does it too. We’re both very covert. We’re like well-therapized and we know how to--
Katie: It’s really funny because I can tell when he’s sneaky OCD reassurance-seeking. Nobody else in my life has ever been able to tell when I’m secretly seeking reassurance. It’s actually frustrating because he can call me on it because he’s really good at it too. There’s some level of accountability with that.
Ethan: For sure. For me, I’ll get stuck on something and I’ll just start verbalizing it. That’s really the biggest thing I think, unless Katie has some other insight, and she may. But for me, verbalization of my thoughts, not specifically asking for a specific answer and simply saying, “Oh, my chest feels weird. I’m sure I’m dying. My heart is about to give out.” How are you going to respond to that? What are you going to say right now? And that’s my system. She’ll be like, “Okay, yup. You may.” To be honest, I’ll call Katie out, she really struggles with giving me-- she’s like, “Ethan, I’m sure you’re fine.” I’m like, “Why did you say that?” She does. She really struggles with--
Katie: It’s interesting because I work with folks with OCD all the time and I don’t reassure them, but it’s so interesting because it feels so different with my partner knowing how much he’s struggling and I just want to be like, “You know what this is, it’s fine.” But yeah, working on that
Kimberley: If he’s struggling, then you said sometimes you will struggle, it makes sense that in that moment you’re like, “You’re fine, you’re fine.” You don’t want them to have a struggle because you know it might even impact you, I’m guessing.
Katie: Well, yeah. It’s funny, all of Ethan’s stuff is around bad things happening to him. All of my stuff is around bad things happening to other people. If Ethan’s worried something bad’s going to happen to him, I’m like, “No. I can’t handle that. I don’t want to worry that you’re going to die. Let’s not put that on the table.”
Ethan: We discovered it was true love when my OCD was worried about her. She’s like, “Baby, it’s about me. It’s not about you.” It’s true love. No question.
Katie: He had never had obsessions about someone else before. I was so excited. He was like, “Am I going to kill you in your sleep? Is that going to happen?” I was like, “Oh my gosh, you do love me. So sweet.”
Ethan: But to answer your question, conversely, when Katie is struggling, she gets loopy and she directly asks for reassurance. I can definitely get frustrated at it at a certain point. I always feel like one time is appropriate. “Do you have a question or concern? Do you think blah, blah, blah?” “No, I don’t think so. I think that’s totally appropriate.” And then the second time, “Yeah, but do you...” I was like, okay, now we’re starting to move into OCD land and I stay compassionate up to a certain point and then I’ll get frustrated because it will be so obvious to me. As she said, myself is so obvious to her. I just want to be like, “Katie, can you see this makes no sense at all?” But when she’s really struggling, not just the superficial high-level or low-level OCD hierarchy stuff, when she’s really, really deeply struggling, it’s challenging. I really struggle with not giving her the reassurance that her OCD craves because I can’t stand to see her suffer. Sometimes I wish that I didn’t know as much about OCD as I do because I actively know that I’m helping OCD, but giving her that instant relief in the moment, it just pains me.
We’ve definitely changed our relationship style as we’ve gotten to know each other and been able to say things like, “I know this doesn’t feel good. I don’t want to say these things to you, but I really, really don’t want to help OCD and hurt you. I really, really want to help you get better in this moment and hurt OCD and just put it to bed, so I’m not going to answer that.” We’ve had to have those communicative conversations to be able to address it when it does cross the line.
I will say we’re pretty well., we do pretty good, but that’s not to say that there aren’t times where we can both get in a rabbit hole. To Katie’s point and to your point, it gets sticky sometimes. I literally never checked an oven in my entire life till I moved in with Katie. And then now she’ll mention it or I’ll be closing up the lights and I’ll be like, I’ve never looked and thought about it. But Katie talks about it and that’s one of her things, and like, “It latched on. I’ll take it,” and like, “No, no, no. Ethan. Everything’s going to burn down.” Yes, moving on.
Katie: Likewise, I’ve never checked my pills multiple times to make sure that I didn’t take too many or worried that there was glass inside of my glass from hitting it. I mean, there’s things that were Ethan’s that I now think about. It’s really interesting because I think we actively work to not give into those things, but that’s definitely a process to you where they were things that I never would’ve gotten stuck on before. We have these conversations too of being able to call each other out. Well, actually, comedy is a really big thing in our house too, so we also like to call it out in a way of like, “Hey, you’re stealing my themes. Stop it. That’s mine. Come on, let me have that stomach bug thing.”
Kimberley: Isn’t that so interesting, though? We constantly get asked what causes OCD, and we never can really answer the question. We say it’s a combo of nature and nurture and you guys are touching on the nurture piece in that, yes, we are genetically predisposed to it, but that other people’s anxiety around things can create anxiety for us. I actually feel the same way. There are so many things my husband is anxious about, or my kids. Now I’m hyper-vigilant about it. That’s so interesting that you guys are seeing that in real life.
Ethan: Yeah, for sure. And then Katie brought up a great point, which is, I think the most challenging times, and they don’t happen often, is when we’re both struggling simultaneously. How do you support each other in that moment? First of all, what’s very funny is we like to joke we both have OCD and we’re both only children. It’s one of those households. Literally, we’ll cook a frozen pizza and we’ll sit there and size up the half to figure out which one’s bigger and then be like, “Are you sure you want that one? I want that.” It’s a thing.
When we’re both struggling, it’s like, “No, you need to listen to me.” “No, no, no, no. You need to listen. It’s my thing. It’s my thing.” It’s been few and far between where we’ve both really been significantly struggling simultaneously, but we’ve managed it. We learn how to be able to struggle and listen and support. It’s no different than advocating when you’re not feeling your best. You can still be compassionate and sympathetic and offer advice that is rooted in modalities of treatment and still be struggling at the same time. We may not get the empathy that we want because maybe we’re just not in a place or we’re pouring from an empty cup or whatever, but fortunately, those times aren’t that frequent. But when they do happen, we’ve navigated and managed really well, I think.
Katie: And even just-- oh, sorry.
Kimberley: No, please, Katie. Go ahead.
Katie: I was going to say, even with that, having conversations around it, I think, has been really helpful. We’ve had moments of being really honest. Particularly earlier this year, I had some tough stuff that happened and I was in a place of grief and then also OCD was coming into that. Ethan, it lined up at some points with some difficult points that you had. There were some times that you were honest about saying, “I am just not in a place to respond to this right now in this moment in a healthy way.” I think that’s actually one of the best things that we can do too. Of course, OCD sometimes gets frustrated at that, “Hey, why can’t you talk about it right now?” But I think having those honest conversations as a couple too so that we can both offer care to ourselves and to one another in the midst of those times that we’re struggling is really, really important.
Kimberley: You answered actually exactly what I was going to say. There are times when we can’t be there for our partner. When that is the case, do you guys then go to your own therapist or to a loved one? Not to get reassurance or do compulsions, but just have a sense of containment and safety. Or are you more working towards just working through that on your own? How do you guys navigate thriving in Relationships with OCD when your partner is tapped out?
Katie: We both have our own therapist and that’s really, really helpful. We both actually have conversations together with the other person’s therapist. Ethan will meet with his therapist and we’ve had times when he’s struggling where I’ll come in for a half session to talk about, hey, what’s the best way to respond to him and vice versa. I’ll meet with my therapist separately, but we might bring him in for 20 or 30 minutes for him to learn, hey, what’s the best way to respond to Katie right now? We both have those separate spaces to go and talk about both what we’re navigating and what we need, but also how to respond to our partner and then collaborate with one another’s therapist. I mean, that has been so helpful for me because there have been points where I don’t know how to respond to what Ethan’s navigating. To hear directly from his provider as opposed to feeling like I have to take on that role is so crucial. And then, Ethan, you meeting with my therapist earlier this year, oh my goodness, was so helpful because she had given me all this insight that I just wasn’t in a place to be able to share because I was struggling. For you to hear that directly from her and what she thought that I needed I think was a huge step forward for us.
Ethan: Yeah. It’s nuanced. It’s not a one size fits all. Yes, it’s all ERP or ACT or DBT or whatever. But it’s all specific to what we’re all going through. I will say it’s funny because as we’re talking, I’m like, “I didn’t ask Katie if these things I could say or not.”
Katie: I’m afraid to say that. You can literally say anything. I pretty much talk all the time about all this.
Ethan: For sure. I think one of the things that really, really helped our relationship in terms of navigating this is, when I first met Katie and we started dating, she wasn’t seeing a therapist actively. It was challenging because as someone that is well-versed in OCD, we would constantly talk about things and she would divulge a lot of information to me. I started to feel like I didn’t want to take on an advocate or therapist’s role with her. I wanted to be her boyfriend. I was really struggling because I really wanted to support her and I really wanted to be. That was never a question, it was not supporting her. But for the same reason that we tell parents like, “Don’t police your kids, be their parents,” and hear how that can backfire, it was really challenging to navigate being a significant other and also supporting her, but not becoming that person that her OCD goes to.
I think her finally landing on a therapist that was right for her and good for her where she can get that objectivity that she needs and I can too learn what she needs from me as a partner, not that there was anything wrong with our relationship, but really allowed our relationship to grow and really allowed us to focus on what we should be focusing on, which is each other and who we are to each other and what’s important to our lives and our family. Our therapists can handle our OCD. That doesn’t mean that OCD doesn’t get involved. It does. But for the most part, that was really where our relationship really got to level up. We both were able to turn to our therapists, but also include each other in treatment so we can have open and honest conversations about what’s going on.
The other thing I’ll say is, we have no secrets. We literally have no secrets. As a first timer to a long-term relationship, because my OCD Obsessions wouldn’t let me have a long-term relationship any longer than four or five months, as a first-timer in the three-year club on May 9th, I really feel like that is such a crucial piece to our relationship. We watch reality shows and it’s like, “You went through my phone,” and it’s like, “Well, I don’t care. She knows my passwords. I have nothing to hide.”
I always say that individuals with OCD would make the worst thieves. Could you imagine? I put myself in a position of robbing a house. There’s no way I wouldn’t worry that one piece of DNA was not left in that house. I find hair on my pillow all the time. There’s no possible way I could ever burglarize anyone and not think I would be caught. We’re not transparent because we know that that will alleviate our OCD. We’re transparent because I think honesty is really important in a relationship and so is communication. We always advocate that having therapy and having access to treatment shouldn’t be an exception at all. That should be the standard. It should be accessible, should be affordable, should be effective. Absolutely, no question there. But with that being said, Katie and I were both fortunate enough to have really good treatment and I think our relationship reflects that. Not to say that we’re perfect all the time, but I think we’re too highly therapized individuals that began our relationship with honesty and communication and have continued that through and through. I think that has enabled us to not only grow as a couple but also helped us manage our own OCD and the OCD of each other and how we interrelate.
Kimberley: Right. I think that is so true. As you’re talking, I’m thinking of people who are at the very beginning stages. They didn’t have any idea about OCD and they’ve been giving reassurance, they’ve been asking for reassurance, and there’s tantrums because the person isn’t giving the right reassurance. What would you encourage couples to do if they’re newly to treatment, newly to their diagnosis, and their goal is to be thriving in Relationships with OCD?
Katie: There’s so many different things, and I know this is different for every person, but even if they’re new to that process, getting their partner involved in therapy, meeting with their therapist, having them learn about OCD, again, Ethan talked about, not from a space of the partner becoming the therapist, but having an understanding of what the person is going through so that they’re not reassuring, so that they’re not accommodating. But I say this to folks all the time, again, so that you’re not also being so hard and so rigid so that you can still be the person’s partner in the midst of that. I think being able to understand what their triggers are, what their symptoms are, what’s coming up, so that you can say, “Hey, I’m your partner. I love you. I can’t answer that, but I’m here.”
I think figuring out what that looks like with the provider, but also with the partner is just so beyond important to have an effective relationship, one, so that you’re not just closing it off so that you can’t talk about it, but two, so that, as Ethan said, you don’t become the therapist because that’s not healthy either. I think we have in our relationship almost tried both extremes at different points of, “Hey, we’re not going to talk about it at all,” or “Oh, we’re going to talk about everything and we’re going to totally support each other through every aspect.” I think with each person, it’s finding that balance of how we can be a couple with open and honest communication, but we’re actually still each other’s partners and not each other’s therapists.
Kimberley: Yeah. Do you have any thoughts, Ethan?
Ethan: I was just thinking. I mean, she nailed it. I don’t know that I have anything to add to that, whether you both have OCD or one of you has OCD. I was actually thinking earlier on in the relationship, and about divulging your OCD and when it’s appropriate. We get so many questions from so many people about, when I’m dating, when am I supposed to let them know? When am I supposed to talk about it? I have very aggressive feelings about OCD and dating, and as amazing as somebody may look and be like, “Oh my God, I would love to be in a relationship with a partner that has OCD because then I don’t have to explain anything.” I did not date to specifically find somebody with OCD. When I met Katie, we were friends long before we were together.
Katie: We always say that, like he was my best friend that I happened to meet through the OCD community, that we fell in love during COVID because he was my best friend, and because we had so much that connected us beyond OCD. I know you said this earlier, Ethan, but we get the question all the time, “Oh, if I just had a partner with OCD...” and that is not. If all we had in common was our OCD, this would not work out because it actually can make it even more challenging. But it’s what’s beyond that. I always think we shouldn’t be in a relationship or not in a relationship based on our diagnosis. It’s about who the person is and how we can support them for who they are.
Ethan: Yeah, for sure. You actually raised a good point. I was going to talk about, and we can maybe come back to it, when to talk about your OCD to your partner, when it’s appropriate, when you feel it’s appropriate, this difference between wanting to confess about your own OCD and feeling like they need to know right now that I have OCD so I’m not dishonest with them and I don’t hit them with the big secret down the road. We can talk about that. But you raised-- wow, it was a really interesting point that I totally forgot. Katie, what did you just say? Go ahead.
Katie: No, I was just talking about not being in a relationship because of the OCD and really having--
Ethan: I remember.
Katie: Okay, go ahead. You got it.
Ethan: Yeah. I’d be curious to Kim’s thoughts. But I think with OCD individuals, whether it’s a significant other or family and friends, and I’ve been talking about this a lot lately, we’ve talked about, okay, how do I get someone to understand what OCD is? How do I help them understand what I’m going through? We did a town hall on family dynamics last week for the IOCDF and we’ve had multiple conversations about this. I’d be curious to Kim’s thoughts. I think there’s a difference between having a partner or a family member, whatever, being able to support you in an effective, healthy, communicative way, and fully understanding what you’re going through. I think those are two different things. I don’t think that an individual needs to know and feel exactly what you’re experiencing going through to be able to understand and support you. I think as individuals with OCD, we have this inherent need for our partners or people that we care about to know exactly how we feel and exactly what we’re going through. “You need to know my pain to understand me.” I think that is a big misnomer.
I think honestly, that’s a potential impossible trap for a relationship when you’re dating someone or with someone that doesn’t have OCD. The likelihood of that individual, while you can give them examples, the likelihood of them actually truly understanding your own OCD experience is unlikely. Just like if Katie had had cancer and went through treatment, I’ll never know what that’s like. But that doesn’t mean that I can’t be sympathetic and empathetic and support her and learn about the disease state and be able to be a really, really wonderful partner to her. I think for individuals that are in relationships with individuals that don’t have OCD, if you resonate with this, being able to release this idea of like, they need to know exactly what I’ve gone through. Really the real thing they need to know is, how can I be a supportive partner? How can I support you in a meaningful, healthy, value-driven way so we can have the best possible relationship? I don’t know if I ever said that, but Kim, I’d be open to your thoughts.
Kimberley: No, I agree. Because the facts are, they won’t get it. No matter how much you want them to get it, they will get it, but they won’t have experienced something similar to you. But I think like anything, there’s a degree of common humanity in that they can relate without completely having to go through it. They can relate in that I too know what it’s like to be uncertain or I too know what it’s like to have high levels of anxiety. Or even if they don’t, I too can understand your need for certainty in this moment or whatever it may be.
I think the other thing to know too is often when someone needs to be understood and they insist on it, that’s usually a shame response. There’s a degree of shame that by being understood, that may actually resolve some of that shame. If that’s the case, they can take that shame to therapy and work through that and get some skills to manage that, because shame does come with mental illness. Often I find some of the biggest fights between couples were triggered by a shame emotion. They felt shame or they felt embarrassed or humiliated, or they felt less than in some way, or the boxing gloves are on. How do you handle, in this case, conflict around-- I don’t know whether you have any conflict, but has conflict came up around this and how do you handle it?
Katie: One piece with the last component, and then I’ll shift into this. I think as you were talking, the shame piece resonates with me so much. I’m definitely someone that even through the OCD experience, guilt and shame are much heavier for me than anxiety or fear or anything else, that feeling really challenging. I think that the biggest piece that helped to combat that actually had to do with my relationship with Ethan, not specifically because he knew every ounce of my themes or what I was going through, but simply because of the empathy that he showed me. I talk often about how because of shame in my OCD journey, one of the reasons I struggled to get better for a long time was I didn’t feel like I deserved it. I didn’t feel like I was good enough because of my intrusive thoughts. I didn’t like myself very much. I hated myself actually. Ethan, by loving me, gave me (I’m going to get emotional) permission to love myself for the first time. It wasn’t because he specifically knew the ins and outs of my themes, but simply because he offered empathy and loved me as a human being, and showed me that I could do that for myself. That was a huge step forward for me. I think every partner can do that.
I used to talk with my students when I was in education about empathy, and I would always say you don’t have to experience the exact same thing that your friend experienced to say, “Oh, I can put myself in your shoes.” To your point, Kim, I know what sadness feels like. I know what this feels like. I know what that feels like. I think just showing empathy to your partner, but also showing them that they truly do deserve love in the midst of whatever they’re experiencing with their OCD can be such a healing component. I just wanted to say that, and now I’ve forgotten the other part of your question.
Ethan: Well, wait, before she asks it, can I piggyback?
Ethan: I’m going to just offer to Katie. Katie’s shared that story before and it’s really special. Always, I was just being me and seeing something beautiful in her and wanting it to shine. But something that I don’t think I’ve ever talked about ever is what she did for me in that same context. I always saw myself as a really shiny car, and if you saw me surface, I was really desirable. I knew my first impressions were really solid. But if you got in me and started driving, I got a little less shiny as the deeper you went. It was really hard to get close to Katie and let her in. Katie and I haven’t talked about this in a while, but when we started getting intimate, I would never take my shirt off with the light on. I would hold my shirt over my stomach because I was embarrassed about my body. She’s an athlete. I’m not an athlete. When we would walk and I would get out of breath, the level of embarrassment and shame, I would feel like, how could this person love me? Now I’m going to get emotional, but it took me a long time to be able to-- this morning, I was downstairs making breakfast without a shirt. I didn’t think about it. She taught me that the parts of myself that I thought were the ugliest could actually be loved. I had never experienced that beyond my parents. But even beyond that, I don’t know that they had seen pieces of my OCD, pieces of me as a human being, as an individual. Katie taught me about unconditional pure love and that even what I deemed the most disgusting, grossest parts of myself, even seeing those.
My biggest fear with Katie was her seeing me. I don’t panic often, like have major panic freakouts, but there are a few things that I do. My biggest fear was her seeing me. I kept saying, “Just wait. Wait till you see this, Ethan.” It comes out every now and again. “You won’t love that person.” Early on, I had a thing that I panicked and she was nothing but love and didn’t change anything. For weeks, I was like, “How can you still love me?”
It doesn’t necessarily relate to your question, but I wanted to share that because I think that for so many that really see themselves as broken or cracked, I think it’s real easy to look really good on the surface. But I think that being willing to be vulnerable and honest and truthful-- and Katie’s the first woman I’ve ever done that with, where I was literally willing to go there despite what my OCD told me, despite what my head told me and my brain told me. I just think that’s also created a really solid foundation for our relationship. I just wanted to share that.
Kimberley: That full vulnerability is like the exposure of all exposures. To actually really let your partner see you in your perceived ugliness, not that there’s ever any ugliness, but that perceived, that’s the exposure of all exposures in my mind. You have to really use your skills and be willing to ride that wave, and that can be really painful. I love that you guys shared that. Thank you for sharing that, because I think that that’s true for even any relationship. That is truly thriving in Relationships with OCD!
Ethan: Yeah, for sure. OCD can definitely get sticky even with that. It’ll start to question, well, does she still love me because of that? She says she does, but does she really-- even my brain now goes, “She can’t possibly love my body. That doesn’t make sense. That doesn’t make sense.” So funny thing about Katie, we were early on in our dating, we were struggling. She’s laying on me. She’s like, “You’re the most comfortable boyfriend I’ve ever had.” I was like, “Yeah.” And then I started thinking like all she’d ever dated before me were triathletes, like washboard dudes. I was like, “Huh, thank you?” She’s like, “No, no, it’s a good thing. It’s a good thing.” I’m like, “Okay. Yeah.” It’s very funny, but I also loved it.
Katie: I do the same thing with you. I mean, all the time, everything’s still. Three years in, we’re getting married in September, stuff will come up and it’s like, “Wait, you saw this, this part of myself that I think is really ugly. You still love me?” Like, what? It gives me permission every time to love myself.
Ethan: That’s such an interesting relationship dichotomy between the two of us. I don’t mean to venture away from your question, Kim, but it’s so interesting. I don’t see any of the things that she sees in herself. She could freak out for a week and I would still see her as this perfect individual who I couldn’t love more. She feels the same about me. It’s so weird because we see each other in the same light, but we don’t see ourselves in that light. It is amazing and I feel a little selfish here to have a partner to be able to remind me of how I should see myself. I hope that I give Katie that same reminder and reassurance, but it really is amazing to be able to see that within our partner because I’ll do something and I’ll be like, “Wow.” She’s like, “Yeah, that didn’t change anything for me.” I’m like, “Really?” Because that’s how I feel like, “Oh, okay.” Because that’s how I feel when you do. “Okay, we’re on the same page.”
Kimberley: Let’s just delete the last question because I want to follow this. I love this so much. It actually makes me a bit teary too, so we might as well just cry together. What would you say to do for those who don’t understand OCD and maybe perceive it as “ugliness”? I’m sure there are those listening who are thinking, “I wish my partner could see beyond my anxiety and how I cope.” What advice would you give to them?
Katie: Ethan, you go first.
Ethan: It’s a hard question. It’s a hard question to answer. It’s thundering and you get it twice since we’re in the same house. I think one thing I was going to say before, and maybe this will get tight, and this doesn’t answer your question directly, Kim, but I’m hoping we can get to it, is when somebody asks me like, “I have OCD and I want to date and get in a relationship, well, how do I do that?” I have very strong feelings about that particular question because I don’t want to dive into acceptance and commitment therapy and this whole concept of being able to do both things simultaneously, which is very value driven and we’re going to feel the feels and have the ick and we don’t have to wait for the perfect moment. But I’ve always believed that if your OCD at that time is so severe that it’s going to heavily impact your relationship, and the reason that you have to tell the person that you’re interested in all about your OCD is because you have expectations of that person to reassure and enable, and you’re going to need that from that person, I would always say, you might not want to get in a relationship right now. That may not be the best timing for you to get in a relationship.
I always would want somebody to ask themselves like, if you’re in therapy and you’re in treatment or wherever you are in your process and you know that you shouldn’t be seeking things from somebody and reassurance, enabling and so forth and so on, then that’s a different conversation. But I think at first, being honest and true to ourselves about why we’re divulging, why we want them to know about our OCD, and what we’re going to get out of this relationship—doing that from the beginning, I think, then trickles over into your question, Kim, about like, what if they don’t understand? What if they don’t get it? Because going into a relationship with this idea of, “Well, they need to know so they can keep my OCD comfortable,” is very different than my OCD doesn’t necessarily play a prominent role in my life, or maybe it does, but I’m in treatment and I need them to know and then they may not understand. I think that that’s like a different path and trajectory. Katie? Yeah, go ahead.
Katie: I think that’s such an important component. It’s interesting. I heard a very different side of the question. I was thinking about maybe someone who is already in, whether it’s a romantic relationship or--
Ethan: No, that was the question. I didn’t know what to say yet, so I was being like, “Well...” Yeah, no, that was the question. You heard that right.
Katie: It was really important too. This might sound really simplistic, but I think it’s so important. Just based on, oh my goodness, my experiences with feeling for such a long time, I was defined by my OCD or defined by my intrusive thoughts, or, oh, how could anybody love me in the midst of all of this? I want everybody to hear that regardless of how your OCD is making you feel right now, or how you’re feeling, you are not defined by your OCD. You are not defined by your intrusive thoughts. You are not defined by your disorder. You are an amazing human being that is worthy of love in all of its forms, and you’re worthy of love from yourself. You’re also worthy of love from a partner. I think sometimes there’s this feeling of, well, I don’t deserve love because of my OCD, or I don’t deserve someone to be nice to me or to treat me well. I’ve also seen folks fall into that trap. I’ve been in relationships that weren’t particularly healthy because I felt like I didn’t deserve someone to be kind to me because of my OCD, or like, oh, well, I’m just too much of a pain because of my obsessions or my compulsions, so of course, I don’t deserve anything good in this sense.
I want you to hear that wherever you are in your journey, you do deserve love and respect in all of its forms, and that the people that are around you, that truly love you, yes, there are moments that are hard just like they are for me and Ethan, where sometimes there might be frustrations. But those people that truly love you authentically, I really believe will be with you in the midst of all of those highs and lows, and continue to offer you love and respect and help you to offer yourself that same love and respect that you so deeply deserve.
Kimberley: I love that. I think that that speaks to relationships in general in that they’re bumpy and they’re hard. I think sometimes OCD and anxiety can make us think they’re supposed to be perfect too, and we forget that it’s hard work. Relationships are work and it takes a lot of diligence and value-based actions. I think that that is a huge piece of what you’re bringing to the table. I want to be respectful of your time. Closing out, is there anything that you feel like you want the listeners to hear in regards to relationships and yourself in a relationship? Do you want to go first, Ethan?
Ethan: Sure. Yeah, I agree. Let Katie close out. She’s amazing. I just want to echo, honestly, the last thing that Katie said was perfect, and I wholeheartedly agree. What would I want to bring into a relationship? I want to bring in my OCD or myself, what is going to be my contribution to a relationship, a romantic relationship. I definitely would want to bring me into it. I want to bring Ethan and not Ethan’s OCD. That doesn’t mean that Ethan’s OCD won’t tag along for the ride, but I definitely don’t want Katie to be initially dating my OCD. I wanted her to date Ethan.
I think what Katie said about that directly relates in the sense that love yourself, value yourself, realize your worth, know your worth. It’s so hard with OCD, the shame and the stigma and just feeling like your brain is broken and you don’t deserve these things, and you don’t deserve love. What’s wrong? It’s so hard. I mean, I say it humbly. When I say go into a relationship with these things, I know it’s not that simple. But I think that if you can find that place where you know what you have to offer as a human being and you know who you are and what you have to give, and it doesn’t have to be specific. You don’t have to figure yourself out of your life out, simply just who your heart is and what you have to give like, I don’t know who I am entirely; I just know that I have a lot of love to give and I want to give it to as many people as possible—own that and don’t be afraid to leave crappy relationships that are good, that because it’s feels safe or comfortable, it’s the devil you know in terms of how it relates to your OCD. You’re not broken. You’re not bad. You shouldn’t feel shame. OCD is a disorder. It’s a disease, and you deserve, as Katie said, a meaningful, beautiful love relationship with whomever you want that with. You deserve that for yourself. Stay true to who you are. Stay true to your values. If that’s where you are now, or if it isn’t where you are now, be willing to take a risk to be able to find that big, as Katie says, beautiful life that you deserve. It’s out there and it’s there.
To Kim’s point, I’m sorry, this is a very long last statement, so I apologize. But to Kim’s point, relationships are hard and life is hard. I really believed when I got better from OCD that in six months, I was going to meet my soulmate, make a million dollars, and everything would be perfect. Life did not happen like that at all. It’s 15 years later. But at a certain point, I was like, “I’m never meeting my person. OCD is not even in the way right now, and I’m never meeting my person. I’m never going to fall in love. I’m never going to get married.” Now we’re four months away from my wedding to being married to the most amazing human being. I truly believe that that exists for everyone out there in this community. Living a life that is doing things that I never would imagine in a million years. Please know that it’s there and it’s out there. If you put in the work, whether it happens the next day, the next year, or the next decade, it’s possible and it’s beautiful. Embrace it and run towards it.
Kimberley: Beautiful. Katie?
Katie: I feel like there isn’t much I can add to that. I’m going to get teary listening to that. I think I’ll just close similar to what I was sharing before for anyone listening, whether it is someone with OCD or a partner or a family member, whomever that is, that you deserve love and compassion from yourself and from every single person around you. You are not defined by your OCD. It is okay, especially if you’re a partner, if you don’t respond perfectly around OCD all the time, because you know what, we are in the midst of a perfectly imperfect journey, especially when it comes to romantic relationships. But if you continue to lead with love, with empathy, and with compassion, and with trusting who you are, not who the OCD says you are, I truly believe that you’ll be able to continue to move towards your personal values, but also towards your relationship values, and that you so deeply deserve that.
Kimberley: Oh, I feel like I got a big hug right now. Thank you, guys, for being here. I’m so grateful for you both taking the time to talk with me about this. Most of the time when someone comes to see me and we talk about like, why would you ever face your fear? Why would you ever do these scary hard things? They always say, “Because I’ve got this person I love,” or “I want this relationship to work,” or “I want to be there for my child.” I do think that is what Thriving in Relationships with OCD is all about. Thank you so much for coming on the show.
Katie: Thank you for having us.Ethan: Thank you for having us.
Welcome back, everybody.
Alright, alright, alright. You may already notice the sound of my voice has shifted, the tone has shifted, and that is on purpose. Actually, I’ve never thought of this, but it’s true. I often show up when I’m ready to do a podcast. I sit in front of my microphone, I’m in front of my desk, I take a deep breath and I just talk to you from a place of centeredness and calm, gathering as much wisdom as I can. That is a part of what I’m bringing today. But my other hope is I want to shift the tone a little bit because that’s what you have to do when you’re addressing this particular topic, which is motivation during depression. We’re talking about how to get things done during depression. That’s what we’re here for today.
Thank you for being here. My name is Kimberley Quinlan. I’m a marriage and family therapist. I’m an OCD and anxiety specialist, and a lot of what I do is manage depression. That is because nearly 85% of cases of an anxiety disorder also have depression. That’s because anxiety is hard and it creates these feelings of depression inside us.
Today, I wanted to talk about how to cultivate motivation during depression because so often when we’re talking about either just managing depression or managing another mental health condition, you’re usually required to do a lot of homework, use a lot of skills, and also go about daily functioning. That is really hard when you’re experiencing depression.
One thing I wanted to talk about first is just to get you guys familiar with what we call the depression motivation cycle. This is something that I talk to my clients about. I wouldn’t say it’s a science-based theory, but definitely, I think a lot of us will resonate with this. What I mean by the depression motivation cycle is when you have depression, you experience symptoms of depression, which I’ll share here in just a few minutes. But you experience these symptoms that cause you to then have lower motivation. But when you have lower motivation, you tend to not get to your daily functioning activities and you tend to maybe avoid some of the hard things in your life, which then causes more depression. And then once you have more depression, that often ends up leading you back into the cycle of having even less motivation because you’re feeling so hopeless, and the cycle continues and continues and widens and widens and spreads throughout your life.
My hope today is that we can work towards breaking that cycle. I’m not going to overpromise that we will break it today because I’m always going to be as honest and realistic as I can with you guys. I don’t want to oversell that this is going to be a simple snap of the fingers, I have the solution for you. No, there’s a slow, gradual breaking of this cycle.
Number one, do I believe you can do this work? Absolutely. I want to heavy-load you with confidence at the front end, but also very much validating that it’s a process, it’s a practice. I want you to be as gentle with yourself as you can as we talk about this today.
Let’s take a breath, but let’s also stay in our mindset.
In understanding motivation during depression, we must consider, like I just said, common depression symptoms. We must understand them. One of the common depressive symptoms is hopelessness. Hopelessness is feeling like there is no hope for you. You might be having a lot of depressive thoughts such as, “What’s the point? There’s no hope. It’s not getting better.” These are symptoms of hopelessness.
In addition to hopelessness, or maybe instead of hopelessness, if you have depression, you may experience the depression symptom of helplessness. Helplessness is where you feel like no one can help you. That your problem is different or separate to other people’s or too big than everybody else’s, and that there’s no one out there that can help you. That’s important to notice because one of the lies depression tells us is you are the only one that has this particular type of depression and you are the only one that can’t be helped, and that that means something about you. There’s some innate flaw about you that makes your life hopeless. It’s all lies. I just want you to know that.
Another common depression symptom is worthlessness—feeling like you’re not enough, you’re not worthy. You don’t deserve to be here, to be loved, to be in connection with. Maybe you feel like you don’t deserve kind, wonderful, loving things or even pleasure. Worthlessness isn’t a very common piece of depression. As you can imagine, just hearing these words that I’m saying, it’s a horrible feeling. It’s a very deep, dark, gray place to be, and it’s not your fault.
Another common depression symptom is sleepless nights. You’re unable to sleep or oversleeping, sleeping day and night, hitting the alarm over and over again, turning it off, going back to bed, not getting to your daily functioning.
Another huge one is exhaustion. People with depression will often go from many, many medical tests because they’re so exhausted and they think it must be a medical condition. You definitely should seek medical care and have an assessment always. But often it’s not a medical condition; it’s a common symptom of depression.
In depression, no motivation to do anything is common. In depression, no motivation to eat, to exercise, to engage in daily activities is also very, very common. Often daily functioning will be depleted completely if it’s a severe case of depression.
My hope today, first of all, to acknowledge this for you and validate this for you and hopefully bring a ton of hope, is to also talk about concepts that can help boost your motivation during depression because it’s not your fault. But there are ways we can slowly climb out of this deep, dark hole that we often can get into when we have depression.
BOOSTING MOTIVATION WHEN DEPRESSED
Okay, let’s do it. We’re going to talk about how you can increase your motivation during depression. The first thing I want to encourage you to do is to embody this idea of becoming a kind coach. Now, for those of you who have read The Self-Compassion Workbook for OCD—that’s a book I wrote in 2021—it talks a lot about the kind coach. Maybe you’re already familiar with it. Or recently in Episode 343, we did a whole episode about talking back to anxiety, and that was all about using the kind coach voice to help get you through these difficult times. We also talked that you could also use that skill with depression.
What I mean by the kind coach is that when things are hard, when you are suffering, you tend to yourself in a way that is kind and you coach yourself forward. Often what we do is we criticize ourselves forward. Meaning we say, “Get up, you lazy thing, and just get your teeth brushed,” or “You’re such a loser if you don’t brush your teeth,” and we use self-criticism to motivate. I’m here to tell you, the science shows us that self-criticism, while it does get people to do things for the short term, it actually for the long term makes people more depressed. It reduces motivation, it increases procrastination, it lowers a person’s self-esteem and their sense of wellbeing. We want to take the pedal off of using self-criticism and move our pedal and accelerator towards talking to ourselves and coaching ourselves in a way that is kind.
What I’m not saying is that’s saying, “You’re the best, you’re wonderful.” That’s fine. If you want to try that, you can. But the kind coach from my perspective doesn’t usually talk like that. It’s usually encouraging like, “Just do one thing at a time. You can do it. One more minute,” and really focusing in on what are your strengths and how can we highlight those, and also what are your challenges and how can we not use those against you. We all have challenges. Let’s say you’re someone who has a challenge with time management. Maybe in that area, we really lean on, “What strengths do I have that I can rely on when it comes to time management,” instead of just saying, “You suck at time management, there’s no point.” I want you to practice being a kind coach. If you want more information about that, go back to listening to Episode 343.
Another way to boost motivation when depressed is what we call activity scheduling. Now this is a science-based skill that we use when we are practicing cognitive behavioral therapy, which is an evidence-based treatment for depression. Now for those of you who have taken Overcoming Depression, which is our online course for depression, if you’re interested, you can go to CBTSchool.com and you can enroll in that course. It’s an on-demand course where you can learn exactly the same skills that I would give my clients, but you’ll be using them on your own. It’s a self-led course and you have unlimited access to all of those strategies and skills. But we talk a lot about this behavioral skill of activity scheduling.
What I mean by that is, one of the biggest things that takes motivation away is a lack of routine, a lack of structure in our day. What we do when we first start treating someone with depression, or we’re starting to target depression, is we break the day up into sections. It might be two sections in the morning and two sections in the afternoon and one in the evening, and we’ll say, “Okay, you just have to do one thing in each of those sections.” You get to pick. It could be as simple as brushing your teeth, but you’ll put it in your schedule and you’re going to give yourself permission that that’s the only thing you have to do in that section if you’re unable to do that at the present.
Let’s say that you’re more in a high functioning area and you’re already doing a lot, but you’re also engaging in a lot of depressive rumination. We might actually keep your schedule the same, but schedule in times during your schedule to check in, use some skills, maybe do some journaling, maybe using some mindfulness activities and so forth. But we can actually use the scheduling to reduce problematic behaviors.
Now, one of my go-to depression meditation tips for everybody is to set realistic goals and expectations for yourself. One of the things I notice about people with depression, and I’m also including myself here because I too have struggled with depression during different seasons of my life, is that we really want to achieve a lot with our lives. We have this idea of what life should look like. We have this idea of how great it can be, which is such a wonderful quality. But the flip side of that wonderful quality is that we have such rigid expectations for ourselves, and when we don’t meet them, we beat ourselves up.
Often what we can do is we can check in with these expectations and these unrealistic goals. We can check and say, “Okay, is this helping me be motivated?” Almost always, it’s no. Let’s say I’m sitting across from a patient in my office, I might say to them, “What would be a goal that you actually feel like you can achieve this week or today or this month?” When they set the bar a little lower, all of a sudden, a tiny inkling of motivation comes into them. From that place, they start to move forward. Whereas if they set these really high goals, they can’t access motivation. It’s so huge, it just feels hopeless. Again, it feels helpless. They feel worthless, those themes of depression. The motivation doesn’t light up inside them and they don’t do any of it. They don’t take even a baby step. If that’s you, I don’t want you to feel called out; I want you to feel understood. I want you to feel validated. I’m hoping that you can give yourself permission to set a goal that’s realistic, and it’s just for now. I know what you’re thinking. You’re thinking, “Well, geez, I’m never going to amount to anything if I set this low bar.” But the truth is, we start small and then we increase it over time.
Another thing to consider when addressing motivation during depression using your activity scheduling is incorporate self-care and healthy habits and whatever that means for you. If you’re someone who has depression and you’re not eating because of it, you’re going to have a low energy. When you have low energy, you don’t have any motivation to do anything. Incorporating scheduled meals, even if they’re not even that healthy to start with. It could be just whatever you can tolerate for the time being. But getting that nutrition into your body may be also what helps with motivation.
If you’re someone who is so depressed, unable to be out in nature and exercise, which we know based on science helps with depression, maybe you could schedule three minutes where you look out the window if that’s all you can do, or take a hike with a friend, or maybe just sit outside on a chair. Whatever it may be. I really don’t want to put expectations on you guys. I think it’s very personal, so you’ll have to think for yourself, “What is one thing I could do today that would really cultivate self-care?”
A really important thing when you’re depressed is, it’s so important. I really want to emphasize this: Finding a support group, a team of support—a loved one, a family member, a friend, a therapist—support groups, actual structured groups is so important to help with that cycle of depression too. Remember we talked about that cycle of depression and motivation? Sometimes just feeling like you’re not alone in and of itself can create a little motivation, or feeling like you’re not alone can reduce that depression just a little bit, which can then help with that motivation piece.
One other thing to consider here, and I myself do this with my best friend, is I use her not only as support, but as an accountability buddy. I’ll tell you, actually, something I’ve struggled with recently is, as many of you know, we’ve gotten a puppy and out the window went my exercise plan. My exercise plan is so important for me in managing my medical condition, but it went out the window. I messaged her and I said, “Listen, I don’t want you to feel any responsibility about this, but I am just telling you, this is what I’m committing to. You don’t have to do anything. I’m just telling you so that you’re my accountability buddy. Every day that I do the thing I said I’m going to do, I’m going to send you a thumbs up emoji.” I said, “You don’t even have to do anything. I just need you to be there so I can be my sounding board.”
There have been other seasons in my life where I’ve had things that I needed to get done, and I would say to her, “Can you be my accountability? Do you have the capacity?” She’s like, “Yes, of course. What do you need?” I’ll say, “I need you to text me on Monday, Wednesday, and Friday to remind me to do such and such.” That’s fine too. Again, that doesn’t make you a loser. It doesn’t mean that you’re weak. It doesn’t mean anything. It just means we’re using effective skills to get you back on the bandwagon.
Now, that being said, there are some key components of getting motivated during depression and these key components, also what I would call a mindset, is leaning towards your values, getting really clear about what is it that you want out of your life. Again, let’s go realistic, but let’s look at the long term. Sometimes when we are depressed, the whole future looks like it’s hopeless. What we want to do is kindly get in touch with your why. Like what can you bring to the table? Why are you here? What do you want? What can you bring to the table for others or for yourself? I want to slow down here a little. I get that you might have no answers to that right now, and that’s okay. It might be as simple as just going, “Okay, what’s one value of mine that I want to lean on during this difficult time?” Values can help us make decisions about what’s best for us.
Another mindset shift that I want you to move towards is, don’t live your life according to what depression is telling you to do. Make choices based on the direction of your life you’re wanting to go. If you used to love swimming, try swimming again. If you used to love drawing, try doing more drawing, even if you’re depressed. Because what we know is that those hobbies, personal interests, more creative expression using your body, can actually create spaces for you where you’re opening your mind up to other things, not just putting your attention on your depression. A lot of my patients have said that they don’t want to go out and be with people or go on a hike or something, but once they’re there, they deeply feel the benefit of it. Sometimes it’s a matter of putting our attention on how you’ll feel once you get that thing done. Try to find things that bring you some joy or some fulfillment. But again, for this first part, don’t put too much pressure on that either because you mightn’t feel a lot of that to start with. But over time and with repetition, you will.
Another really important piece, and you’re already hopefully doing it right now, is to lean on the people who are sources of inspiration for you. Hopefully, if it’s me, I’m honored. For me, it’s often like poetry, people who’ve been through it. I love Jeff Foster. He is a poet who has had depression and suicidal ideation and he’s just talks about it in such a beautiful, mindful way. I find it to be a very safe landing place when you’re feeling really down.
And then the last thing to consider when addressing motivation for depression is, actually, after you’ve done any activity that you had to muster up a lot of energy to do, you celebrate. If you miss the celebrating part, you miss an opportunity to generate more motivation to keep going. If you do something hard and you go, “Whatever, it’s no big deal. I should have been able to do it yesterday,” you’re missing an opportunity. What I want you to do is throw a mini party in your mind. Or if that’s impossible, just text someone and say, “I did a hard thing today and it was...” and tell them what it was, so that you are celebrating, you are rewarding, you are congratulating yourself for taking steps towards these small victories. It’s so important.
And then the last thing I’m going to offer to you, which is a catchall for all of this is, don’t do it alone. If you have access, like I said before, to a therapist, a support group, it doesn’t even have to be a paid one; it could be a Facebook group. But being in a community, being in a group of people who get what it’s like for you can be a game changer. If you do have access to professional help, absolutely go and get help because they often will bring your attention to things you weren’t noticing, thought patterns that you didn’t realize that you had, and that can be so incredibly beneficial.
Now, with all of that said, I want to also emphasize this idea of, again, my voice hopefully is a little different and I’m trying to cheer you on. Let’s go. You could totally do this. Baby steps. What I want to remind you of is, surround yourself with people who lift you up, who have a high vibe if you can. If you haven’t got access to those people in real life, lean on singers and celebrities and even social media platforms that are encouraging, that are inspirational. A lot of my clients have said that Pinterest has been even helpful for them in that they go onto Pinterest and they google inspiring quotes. That could actually be something so simple that gets them up to brush their teeth.
I hope that’s helpful. If you are interested in looking into Overcoming Depression, our online course, talking a lot about different skills you can use, go to CBTSchool.com or reach out to a therapist in your area. I really hope that this has sparked a little teeny tiny light inside you, and if so, I will be so happy.
Do not forget, it is a beautiful day to do the freaking hard things. Do not forget it. Write it on a piece of paper and read it off as many times as you need to remind yourself it’s okay that it’s hard, it’s not a bad thing that it’s hard, and that you can do those hard things.
Sending you love. Have success. I’m sending you every ounce of love that I have. Talk to you soon.
Welcome back, everybody. Today we are talking about a topic that I commonly get asked as a clinician, I commonly get asked as an advocate for anxiety online and so forth, which is how to let go of intrusive thoughts. I think that this is such an interesting question because words matter.
For those of you who know me, you’re going to know that words really do matter when it comes to managing anxiety and we have to get it “right.” When I say “right,” what I’m really saying is our mindset about anxiety and intrusive thoughts and any emotion really that is uncomfortable, we have to approach it with a degree of skill, effectiveness, and wisdom. My hope is to help you move in that direction. I know you’re already in that direction, but hopefully, this episode will be really powerful. I’m going to give you a metaphor that I hope really, really helps you. It really helps me. I’ve talked about it on the podcast before, but I feel like it’s important so I have to talk about it again.
When we talk about this idea of how to let go of intrusive thoughts, we have to ask, what do we mean by that? Often when people first start seeing me as a clinician or they start seeing my therapist—we have a private practice in Calabasas, California—we commonly will get, “Okay, just I’m here. I’m ready to do the work. Teach me how to let go of intrusive thoughts.” A lot of the beginning stages of treatment is educating on how letting go, meaning not having them anymore or quickly avoiding them or distracting against that, could actually be what’s making your anxiety worse.
For those of you who’ve taken ERP School, which is our online course for OCD. If you’re interested, you can go to CBTSchool.com to learn more about that course. That’s where you can learn how to manage your own OCD. It’s an on-demand course. But we talk a lot about understanding that trying to push thoughts away or suppress thoughts, not having them actually reinforces the problem. I also want to mention, it makes total sense that your goal is to be able to have the thoughts and have no discomfort related. Like I just want to have the thoughts and I don’t want them to bother me, and I just want them to create no suffering at all. I get that. That is a very normal desire to have. But what we want to do here is, when we’re talking about how to “let go” of intrusive thoughts, what we are really talking about is how we can be skillful in how we respond to them, because we know, based on science, that we can’t control our intrusive thoughts. Often there are mechanisms in the brain that’s making it very difficult for you to pump the brakes on thoughts, which is why you’re struggling with so many of them, and they’re happening so repetitively. We know this.
When I first learned about mindfulness, one of the most important metaphors that just shook me to the core—it really changed the way that I learned to deal with thoughts, feelings, sensations, emotions, urges, and all the things—was to think of my thoughts like water in a stream, and that my mind is this stream of water. As you’re thinking like these beautiful green banks, and there’s the river in the stream, and it’s flowing in one direction. What happens for us when we’re experiencing our mind is we hit a rock in the stream. When we hit that rock, we want to imagine that that rock is a metaphor for an intrusive thought. Here you are, you’re the water. You’re just rolling over all of the banks and commandeering back and forth, and then all of a sudden you hit this very sharp, jagged rock. Of course, your reaction is to get jolted and go, “Oh my goodness, what is this? Why is this here? I’m just trying to get from A to B.” Often what we do is when we hit the rock, we make a huge splash. The splash goes everywhere. We’re like, “Wait, what happened?” When we do this, we actually create a lot of pandemonium for ourselves.
Now, that’s what we do. But if we were to think about a stream, what does the stream water normally do when it hits a rock? It hits the rock, it notices the shape of the rock, and then it gently goes around them. It doesn’t stop to go, “Is this a good rock or a bad rock? How do I feel about this rock? What does this rock mean about me? Why is there a rock here? There shouldn’t be a rock here.” The water just notices the rock, observes that the rock’s here. It doesn’t make a huge splash. It doesn’t try to go under it. It doesn’t try to stay on the left side of the bank and avoid it. It just notices the rock and it goes around it and it moves on.
Mindfulness is just that. Mindfulness is observing what shows up from a place of non-judgment, from a place of non-attachment. What I mean by that is that the water’s not attached to what this rock means about them. It doesn’t assign value to the rock. It doesn’t say the river is bad now because we have a jagged rock, or it doesn’t say the river is good because it’s a small rock. It just says “rock” and it goes around it. Mindfulness is also very present. It notices it. It doesn’t stop there and go, “Okay, I’m going to spend a lot of time solving this and I’ll get to the end of the river in my own jolly time.” It is often being moved by gravity, so it just keeps moving. It doesn’t slow down too much for that rock.
That’s the way I want you to now practice approaching your intrusive thoughts or your emotions, if you’re having other emotions, like strong waves of guilt or shame or sadness and whatever it may be. You’re going to notice the obstacle or the object. Be non-judgmental, not get caught up in a story about what it means about you that there is a rock in your stream of water, and you’re going to go around it. I was going to say quickly, but that’s not actually the right word. You’re going to go around it from a place of not gripping. Not gripping to that rock and so forth.
Now, here is where the metaphor continues. For those of you who are listening, my guess is, in your stream, in your mind metaphorically, you hit one rock, you go around it, but very, very quickly comes another rock. And then you might practice that and go, “Okay, all right, I did one. I’m going to notice this rock as well. I’m not going to assign value to it. I’m just going to notice it, be aware of it, be non-judgmental of it, and do my best to go around it without making too big of a splash.” You do it the second time. But then what happens? Another rock comes.
Often what my patients say to me, or like I said to you at the beginning, followers on Instagram or you listeners of the podcast will say, “I get what you’re saying.” One of the most common questions we get in ERP School in the portal where people ask questions is, “I get what you’re saying, but what happens if they just keep coming and coming and they just don’t stop?” That’s where I would say, again, the stream doesn’t get involved in a conversation about what this mean. It just hits the rock and goes around the rock and moves to the next one and the next one and the next one, and it takes one rock at a time.
What we often do—and I’m the worst at this, I have to admit—is once we’ve hit 4, 5, 6 rocks, we then shift our gaze not on the present moment, but we look down the stream and we go, “Oh my goodness, I see nothing but rocks. This is going to be a bad day. All I could see is my future is going to contain a lot of rocks. I can see them on the horizon, I give up,” which is okay. I want to first really validate you, that is a normal human emotion, a normal human instinct to be like, “I give up, there’s too many rocks.” But our job isn’t to be looking into the future, trying to solve the many rocks that we are going to face. Because as soon as we do that, we lose our skills, we lose our cool, we lose our motivation, we lose our resilience. Just the same as if we looked up the stream where we’ve been and we go, “Oh my gosh, what a terrible day. Look how many rocks I hit today. It was nothing but rocks.” We could get in trouble that way as well. Mindfulness is only paying attention to one rock metaphorically at a time. Staying as present as you can.
Often people will say to me, “Well, how do I get rid of rocks? Isn’t there a way to get rid of rocks?” I love this. What they’re really asking, just in case you lost the metaphor, is they’re asking, how do I get rid of intrusive thoughts? How do I get rid of them? Here is where I think the metaphor is really clever, because when you think of a stream and you think of the rocks in a stream, like the actual stream—our family spends a lot of time rafting; my husband is an amazing raft, I guess you would say, and my kids love it too—what I always think that’s so interesting is when you’re in rapids or ripples, the rocks actually aren’t jagged anymore. Often when rocks have been hit by water enough times, the jaggedness of them gets washed away and the rocks become actually quite smooth. I think it’s such an amazing metaphor here for the work that we do, which is when we are mindful, when we are non-judgmental, when we are present, when we don’t attach it to what it means about us, the thoughts become less powerful, less painful, less jagged, less sharp, less of an ouch. That’s true in science with actual streams on water and for us in our minds too.
Now, it’s not uncommon for people to be curious about how long intrusive thoughts can last. Because often when we have them, before we’ve learned these skills and before we’ve learned mindfulness, we have them. And then because we are so averse to them and we’re so afraid of them and they’re so painful, it can feel like they last for a very, very long time, and that’s true. They can be so repetitive that it feels like you just don’t get a break.
But what I have found to be true, as a clinician who’s watched hundreds of clients practice this, is when you start to apply mindfulness, they can be quite fleeting, these intrusive thoughts. They can pass quite quickly. I want to be really honest with you. What I’m not saying is that they will stop returning. Again, I want to really keep reinforcing because that’s not our goal. Our goal isn’t to say, how can we get rid of them as fast as we can, or how can we get them to not be here. I’m not saying that, but I can vouch for this in that when you do practice treating intrusive thoughts like a rock in a stream, they do tend to be less prolonged. Not always. I want to keep saying not always. There will be days where you’ll have lots and lots, there’ll be days when you won’t. Again, we’re going to practice not attributing value or judgment to that. But I have found this to be very true, that when we are really present and we’re kind and we are non-judgmental, it can actually reduce the suffering so, so much
That’s the metaphor I want you to think about here in regards to how to let go of OCD intrusive thoughts. But I would even go as far as saying, this is the same metaphor I would use when talking with patients who have trauma, and they’re wanting to know how to let go of their PTSD intrusive thoughts because some people with PTSD have intrusive thoughts. I would even go as far as saying that, as I’ve said in the beginning, you can use this skill with any adversity.
You could use this skill with sadness, you could use this skill with shame, guilt, fear in general. It could be discomfort or some physical sensation of pain that you’re having. We can also let go of these intrusive thoughts related to depression. Noticing a depressive negative thought, seeing it like a rock in the stream, trying to practice non-judgment around that, and moving around it with a sense of kindness and compassion and radical support. That’s what I would love for you to practice.
I’ve had patients in the past say that they changed the computer screen to a stream just to remind them of that. Or they’ve left a little sticky note on the side of their desk saying thoughts are like a rock in a stream or a rock in a river. There are other ways you could imagine this metaphor as well, but this is the one that I really, really resonate with. If you want to get creative, you can maybe come up with some other forms. But I find it to be so incredible how nature can really teach us about how to be mindful and manage really, really hard things.
That’s it, guys. That’s what I wanted to share with you. I hope it was helpful. I know this is not easy, by the way. The whole reason I say it’s a beautiful day to do hard things is because this is not easy. This is like hardcore work and I want you to give yourself a lot of claps and hugs and celebrations and high fives for even trying this sometimes in the day.
I really do believe that one rock at a time, even though it mightn’t seem very significant, it accumulates. If you have hit tens or twenties or thirties or hundreds of these rocks, you are on your way. You are doing the work, you are walking the walk, and I really want to celebrate you and honor you for that.
All right, folks. I hope that was helpful. I am sending you so much love. Keep doing the work. I will see you in a week. Well, you’ll hear me in a week. I hope you’re having a wonderful summer if you’re in the northern hemisphere. I hope you’re having a wonderful winter if you’re in the southern hemisphere, and I will talk to you soon.