How to Navigate Chronic Illness and Disability

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?

Jessie: Exactly.

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? 

Jessie: Absolutely.

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.

Kimberley: Sandy?

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.