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General Education, Podcast

How to Cope with Uncertainty During a Pandemic? Episode 56 of the Arthritis Life Podcast

February 1, 2022
74 min read
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Summary:

Arthritis Life Podcast host Cheryl Crow is no stranger to uncertainty, after living with rheumatoid arthritis (a disease characterized by at times unpredictable flare-ups and remissions) for nineteen years.  

But the pandemic has brought a whole new level of uncertainty to the lives of those who are vulnerable, including Cheryl.

On episode 56, mental health occupational therapist Carlyn Neek and Cheryl focus discuss ways that Acceptance and Commitment Therapy can help people cope with uncertainty and continue moving towards a full and meaningful life despite so many things being out of their control.

Cheryl & Carlyn also delve into specific ways that being immunocompromised and vulnerable to other’s actions has emotionally affected people, and ways to cope with difficult emotions like anger, jealousy and anxiety.

Medical disclaimer: 

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Video of episode?

You can also find a video of this episode below!

Episode Sponsors

Rheumatoid Arthritis Roadmap, a self-paced online course Cheryl created that teaches you how to confidently manage your physical, social and emotional life with rheumatoid arthritis. 

Rheum to THRIVE, a community support & education program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. The next group starts in Spring 2022!

Speaker Bios:

Carlyn Neek

Carlyn is an occupational therapist in Calgary, Alberta, Canada. She owns Balance Works OT which includes a mental health private practice and an online group coaching program called ACTivate Vitality – Rise & Live Fully. Carlyn uses Acceptance and Commitment Therapy in all areas of her work and life and she teaches other occupational therapists how to do so as well.

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.

  • Links to things mentioned in episode or additional listening

Rheum to THRIVE, 6-month education and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. The next group starts in Spring 2022!

Rheumatoid Arthritis Roadmap, a self-paced online course Cheryl created that teaches you how to confidently manage your physical, social and emotional life with rheumatoid arthritis. 

Full Episode Transcript:

Hi! My name is Cheryl Crow, and I am passionate about helping people navigate real life with arthritis. I’ve lived with rheumatoid arthritis for 17 years and I’m also a mom, teacher, and occupational therapist. I’m so excited to share my tricks for managing the ups and downs of life with arthritis. Everything from kitchen life hacks, and how to respond when people say, “You don’t look sick”, stress, work, sex, anxiety, fatigue, pregnancy, and parenting with chronic illness — no topic will be off limits here. I’ll also talk to other patients and share their stories and advice. Think of this as your chance to sit down and chat with a friend who’s been there. Ready to figure out how to manage your arthritis life? Let’s get started.

Cheryl Crow:

I’m so happy to have Carlyn Neek on the Arthritis Life podcast today. Welcome Carlyn!

Carlyn Neek:

Thank you. I’m super excited to be here.

Cheryl Crow:

Yay. Can you tell the audience just a little about yourself, your work and, and how you discovered acceptance and commitment therapy?

Carlyn Neek:

You bet. So I’m an occupational therapist in Canada. I live in Western Canada and Calgary, and I’ve had a mental health, private practice for a long time. And a lot of my clients were coming to me from a third party payer an insurance company who was supporting them in their medical leave from work work, sort of replaying, replacing income. And they would often leave them for a year to work through sort of with their doctor and maybe their own psychologist. And then if they were kind of stuck, then they would send them to me to help them get back to meaningful activities so that so that the, yeah, they’re feeling more empowered in return to work comes more easily when like you’re able to do the other things in your life too.

Carlyn Neek:

And so technically as return to work preparation, but it was return to life really the way I looked at it. And I, I was now I do a lot of coaching with OTs using acceptance and commitment therapy, but back to, to that work I discovered act because in doing this work, a lot of my, my job was to set goals with people, help them gradually increase, manage the obstacles. Sometimes there were chronic conditions sometimes very, almost, always it was depression and anxiety, but often it was related to an illness or pain or something like that. And when I would be working with P able to move toward those meaningful activities or occupations as we OTs like to call them the tools that we had for the thought obstacles were C B T right? Like traditional C B T. So let’s try and reframe that.

Carlyn Neek:

Let’s try and think of a more positive way to look at that. And CBT, sorry, just real quick. CBT stands for cognitive behavior therapy, behavioral therapy. Yeah. And act technically is in that kind of umbrella of cognitive behavioral therapies, except I like it better <laugh> for this exact reason. So when somebody’s saying, you know what, I’m afraid to do that thing, ’cause what if I have a pain flare up? What if I have an anxiety attack? What if, you know, I move an inch and then the insurance company says, well, great, you’re ready to return to work. And those are really valid thoughts. And for me to say, oh well let’s reframe that. Sometimes that was useful and other times, or let’s kind of come up with a more positive version. Well, I, I felt like I was invalidating them because wow, if you’re living with a lot of pain or trauma or fear or anxiety, it’s, it’s super invalidating for someone to tell you to just, you know, and it wasn’t just think positive CBTS deeper than that, but it, it read me the wrong way.

Carlyn Neek:

So often I’d help them with the feelings and validate name and all of those things. And then when it came to the thoughts, I’d say, have you talked to the psychologist about that? <Laugh> cause I didn’t wanna do what, what sort of my guide book or sort of best practice at that point was. So I was looking for alternatives and I was finding myself really drawn to things that were a lot more my based and sort of that turning toward, creating awareness, having compassion. I want to give, I was giving these people compassion for these difficult thoughts and feelings that would come up. And that when I found that’s how I kind of happened upon act, I was looking for resources to support a more compassionate way of supporting these people, continuing to move toward doing the things that are meaningful to them without being like, well, let’s buck up and just do it.

Carlyn Neek:

Yeah. So act came up in my world that way and I fell in love.

Cheryl Crow:

Yeah. I mean, and I think anyone who’s listened to any further or previous episodes knows I brin- pretty much bring it up like every single episode. And again I, the thing that the, that I find so helpful about it personally is that you were talking about, you know, learning how to reframe with C, B T and see, see your situation in a different light. And that can be really helpful. But at a certain point, if, if what you’re stuck on is uncertainty, which is what we’re gonna talk about today, uncertainty and the pandemic. And then it’s like, okay, a therapist can sit there and tell me, like, if I say, what, if it ever gets better? Like what if my condition ever gets better? And the therapist’s like, well, let’s reframe that.

Cheryl Crow:

What if it does? It’s like philosophically, like whether first of all, yes, it’s definitely invalidating, but it’s also philosophically, like I know in my gut, like the reality is that it might not ever get better. It might get better. It might not, like there’s this giant range. So like, how C, B T to me did not really teach me how to cope with that uncertainty. And again, maybe I just wasn’t learning it the right way or whatever, but yeah. That’s where the mindfulness and the ACT and, like actually, instead of just arguing with the present moment, like actually learning how to connect to it. It’s so intuitive when you live in pain, especially ‘Cause you’re like, I don’t like the present moment. I’m trying to get to a better one.

Carlyn Neek:

Which is human nature. It’s survival. Right. We experience a threat, whether it be pain or fear or something like that.

Carlyn Neek:

And our, our nervous system is like, yep, you don’t want that. Like, let’s get the heck outta here. Why on earth would we sit it and turn toward it? It’s not our nature to do so, but quite often that’s where we’re trying to manage because if we avoid everything, like if you avoid everything that is painful for you, your life becomes very small. Right? And that’s that you want to be doing things you don’t wanna be like taking giant risks and creating flare ups every day. But you know, it’s, it’s that ability to kind of go, okay. Yep. My, my, I, I do want to kind of run, but I’m learning that I can actually sit with it. It’s less threatening than my nervous system is telling me. Cuz my nervous system says get outta here and we can, we can actually be with this.

Carlyn Neek:

Where, where is that safer zone and how can we make room for that?

Cheryl Crow:

Yeah, yeah. It’s so it was so different when I first, you know, learned it. I was like, why? Cause I was so focused on making things better, you know? And I think that a lot of people who get diagnosed with like a chronic condition, like rheumatoid arthritis or Ankylosing spondylitis, you know, it’s, it’s a problem and your brain is, you know, you’ve –

Carlyn Neek:

Solve, it’s, let’s get rid of this!

Cheryl Crow:

And yet we can do a “both and,” right? Of course we go to the doctor and like, you know, I’ve talked numerous times about how important, you know, getting your disease under control, like with medication and lifestyle, you know, whatever works for you. But at the same time, like understanding at a certain point that there are going to be like aspects of my rheumatoid arthritis are solvable and and aspects are perpetual.

Carlyn Neek:

<Laugh> yes.

Carlyn Neek:

You know, to borrow from the John Gottman, like marriage research. Yeah. So, but, and so uncertainty is a perpetual problem. You know, we’re gonna talk about uncertainty during the pandemic ’cause that’s something that like everyone is having to cope with whether they have arthritis or not. But I, I wanted to first talk a little bit about uncertainty as, as a difficulty, just at baseline with living with a chronic condition, particularly one that’s characterized by flare ups and remissions. Cause I think that’s the part like I coped really well with rheumatoid arthritis initially, or I shouldn’t say really well like judgment, but like I felt initially like, okay, I got this diagnosis and then I had this very simplistic idea because my first medication worked really well. I was like, okay, well I just take my medication and it’s just gonna work forever and I’m gonna feel good line forever.

Cheryl Crow:

And like, this is an obstacle and like I’m on the hero’s journey. And like I overcame it, like this was the mountain. I climbed it. I’m on the other side, you know?

Carlyn Neek:

<Laugh> yeah.

Cheryl Crow:

And then the first time my arthritis really flared up seven years after my initial diagnosis, I was extremely confused. Cause I was like, well wait, I’m taking my medicine. Like I’m doing thing. I have this I exactly. And that people say, oh, is it really hard when you got diagnosed? And anyway, this is my whole long story, but no, it wasn’t hard at all. When I got diagnosed, cause I had been so traumatized by being accused of faking told I was, you know not sick, just anxious. You were. Then my parents were told that they thought I was having an eating disorder cause I was losing weight. It was just awful, awful, awful.

Cheryl Crow:

So the, the diagnosis was like this giant moment of validation, like yeah, my suffering is real. It has a diagnosis. But then so then when I got my first flare up seven years later, that was when I really had a difficulty accepting that this is, this is not so simple anymore. So the point is that I realized it’s not the symptoms that were difficult for me to cope with. It’s the not knowing like, well, okay, if this medication didn’t work, it worked, then it didn’t. It’s like, okay. So then if the next one works, will it also not work at some point? Like you get caught in this spiral of…

Carlyn Neek:

And almost this black and white, like I thought I had all the control and now I have no control. I see that I have no control. And when there’s actually like the truth is somewhere in the middle and it probably fluctuates, but you’re not at either end.

Cheryl Crow:

Exactly, exactly. And I know that like some people or a lot of people connect with the, these funny little memes that are like in, in, in the, you know, chronic pain community in rheumatoid rice community, it’s like, are my pains not, are my pain medicines not working? Or are they working? And the pain would be unbearable if I didn’t take them. And like that, it sounds like a funny question. Like when you look at it on a meme. Yeah. But it’s actually, that is a fundamental question.

Cheryl Crow:

Like I, like I was telling even my rheumatologist, the other day it’s been 19 years. So it’s like what – I don’t even know what my baseline is supposed to be. Like, I don’t know what 40 year old Cheryl is supposed to – was, let’s say in an alternative timeline of my life –

Carlyn Neek:

Choose your own adventure Cheryl!

Cheryl Crow:

I don’t know what it’s supposed to, I don’t know what life is supposed to like, am I supposed to feel no pain ever? Like I don’t even know what normal is. Right. And so anyway, there’s a lot of thoughts in there, but yeah. I know that when, what are some things that, you know, that, that you found helpful with people who are kind of getting stuck in the uncertainty loop? Because uncertainty for me makes me wanna just, oh, I’ll just find the answer. Right? A lot of people that’s like you search uncertainty is a problem. So you search for certainty. So it’s the vegan diet that’s gonna make my RA go. It’s the keto diet. It’s it’s exercise. It’s a certain kind of exercise. It’s a Zumba. No, it’s not. It’s high intensity aerobic exercise. Oh. Or high intensity interval training. Oh no, it’s taking this med.

Carlyn Neek:

Oh no. It’s, you know, it’s like you search for the certainty and it’s like a trap cuz or yeah. What, what do you recommend from that?

Carlyn Neek:

And you know what the trap in that is control.

Cheryl Crow:

I love control though. I know I’ve learned.

Carlyn Neek:

I know you do.

Cheryl Crow:

I’ve learned. So that has been the, yeah, <laugh>, it’s been the most helpful thing is to learn how to like stop cling to control so much and accepting the control as an illusion. But man, it’s hard.

Carlyn Neek:

It is hard. Cause why on earth, if you could solve this problem, you would. Right. Like, and so let’s find the solution because I’d like to solve this problem. And I think about a D B T dialectical behavioral therapy concept here where there’s this wise mind or this logical mind and this emotional mind. And if there are like two circles on a ven diagram sometimes we go into this logical problem solving, let’s fix this.

Carlyn Neek:

What are the answers? As the research, tell me, let’s see more experts. What do I need to learn? And turn away from like, cuz the emotions are a lot they’re really overwhelming. So let- emotional meltdown, jump over to logic and problem solving. And uit’s an effort to control cuz guess what? When you’re in problem solving mode, you’re, you’re not connected to those emotions as much. Uand so you’re thinking, thinking, thinking, and, but you’ve turned away on these emotions that are actually really important.

Carlyn Neek:

And so in D B T they talk about kind of coming to that wise mind, which is where the overlap is, where you can be present with the emotions. You can be present with the thoughts. We’re not, we’re, we’re trying to kind of come back to that middle rather than one extreme or the other and dialectical behavioral therapy, like we’re getting technical.

Carlyn Neek:

I is kind, I look at like act as D B T and C B T cognitive behavioral therapy had a baby and it was act cuz D B T has a lot of mindfulness in it. And the, so I like how it, that kind of comes into act. Cause a lot of mindfulness is about going okay. Like I can’t control all the things I’m gonna be present in this moment with what’s here in this moment. What am I experiencing? I’m feeling some fear. I I’m actually not feeling that much pain in this moment. I’m was kind of, kind of had a lot pain this morning and maybe that’s kind of sent me into this where I gotta find the answers, this isn’t workable or maybe I’m feeling less anxious in this moment actually. Can I actually be okay and expand into what’s here? Or am I really overwhelmed that I’m gonna sit and be kind to myself in it rather than go, this is terrible.

Carlyn Neek:

I need to find all the answers. And that’s not to say, don’t go looking for answers. Of course you, you, you learn, you need to learn that’s empowering, but not having that response that emotional or physical or thought response determine all of our actions. So being able to kind of make intentional choices about what we do kind of, there’s a res there’s a stimulus. Maybe it’s one of those things, right? Fear, threat pain. And then there’s room in here to pause before we react and act. And we want to in there kind of be able to have a little bit of wiggle room, which means we’re not running away immediately. We’re kind of turning toward and being curious and present and self-compassion with that threat before we then choose an action, that’s aligned with our intentions and our values. So where do we, how do we want to be showing up in this moment?

Carlyn Neek:

How do we want to be responding? How do we want to be living our life? And what’s actually possible in this moment, right? You might, if you are having a flare or something that maybe you can’t go do that at thing that you really wanted to do, but what can you do that aligns with your values? And in, in that pause, we have a little bit more control of our actions and intentional not control of trying to get rid of the threat.

Cheryl Crow:

Oh my gosh, that’s such an important distinction. And I think the thing that I, I always say that ACT was un-intuitive for me at first. And I think it’s, it’s like if we drill down to like a really, really specific example, let’s say like, I’m coming back home from my like second rheumatologist appointment. Let’s say they’ve started me on a medication and I’m not sure if it’s working well or not.

Cheryl Crow:

You know, it’s been a couple months and I’m feeling a little bit better, but again, I’m not having that like maybe perfect response to medicine that I was hoping I was have. And I’m like sitting at the computer and I’m like have 20 tabs open, you know, trying to like think, okay again, like, you know, what’s, should I do ice? Should I do heat for my pain? Like, should I do this one special diet versus the other? And I’m doing all these groups and everyone says different things.

Cheryl Crow:

And like the, the impulse for me in that moment is to like open more tabs, like to keep like, okay, just the next one, like the next one is gonna find is gonna have me, you know, give me the answers. Like I’m looking for the –

Carlyn Neek:

And, you’re you’re very intelligent. Right? So intelligence is your superpower. You have have the, you have the resources, you have the awareness, you have your background as an OT.

Carlyn Neek:

That’s like, okay, how do we fix this? Like let’s let’s research. Right. Let’s go to my strength.

Cheryl Crow:

And so like when I’m trying, I’m trying to think about someone listening right now. Who’s like, in that, what’s the word, like the the devil’s advocate or like the kind of cri- not, not understanding the point of this. Like yeah. So if someone’s like, okay, so you want me to, you don’t want me to open another tab? So I, so what can you walk me through?

Cheryl Crow:

Like, what would it look like for me to say, okay, is it kind of like step away from the computer <laugh> and just sit for a moment and sit and connect to yourself, right?

Carlyn Neek:

Yeah, it – it – so, in ACT language, when you jumped into problem solving, you were hooked, right? So you’re gonna turn away from the experience of, you know, I’m, I’m feeling like there was this shift with my doctor.

Carlyn Neek:

I I’ve lost control. I don’t know what to expect with the new medication. I need to then, and so there’s discomfort, right? I’m, I’m, I’m afraid, I’m nervous, I’m uncertain and that’s uncomfortable and there’s that jump. Okay. I’m gonna go all in on research mode. So not to say, like, if it’s workable for you, whatever, like <laugh>, if that’s kinda part of your process and it’s not going to leave you in this kind of oh my goodness. Oh my goodness. And I’m researching and I’m, I’m thinking and thinking and thinking, and I’m not making supper and I’m not hugging my kids and I’m whatever. That’s not workable probably for a lot of people, but if it’s workable for you, it’s okay. Like, you’ll come back. Just the ideas. Like if, if it’s not workable, you’re hooked. Right. And so if you’re hooked into unworkable action, you can kind of go, okay, first you have to notice that you’re hooked.

Carlyn Neek:

That’s, that’s a tricky part. Right? Like actually noticing that, is this working for me or not? Right? Like your husband’s like, are, are you, are you going to bed tonight? Like, <laugh> you still on your computer? And you look really stressed. Oh, right. I’m like –

Cheryl Crow:

Like, is it actually, like when we say, is it workable? Another word, I think, let me know if this is correct in your terms, but like, it – would just be, is it helpful? Like, is all this working right now? Is it helping me to open another tab? Like, and that’s why I think it’s hard to, yeah. It’s hard to say, like, it’s wrong to open a bunch of internet tabs.

Carlyn Neek:

No, that’s not what I’m saying at all or not what you’re saying. It’s the actions aren’t right or wrong. It’s are they, how helpful in your life are they helping you lead you towards connecting a full life?

Cheryl Crow:

A full, yeah. A full life. And I think the thing that was, that really struck me when I was reading the happiness chat by Dr. Russ Harris, and I’m sure my therapist had said this to me before, but it really hit home. Maybe it’s one of those things that, to hear it like seven times, but you know, a full life includes the full range of human emotions. Like we can’t run from them.

Cheryl Crow:

And I think in, in a, I’ve been through exposure therapy for claustrophobia, which I know I’ve talked about in the podcast just a tiny bit before, but when you talked about sitting down and in, just taking a moment to connect with what, you know, what is happening in the present moment? How am I, how am I physically feeling? How am I emotionally feeling? And you mentioned discomfort. Like it’s so intuitive for me to, to run away from discomfort.

Cheryl Crow:

I’m like, I don’t even wanna feel it for one millisecond, you know, but this practice has become so helpful to me to say, it’s like an exposure to your own emotion. You know what I mean? Like exposure therapy is like, you know, you could, the traditional thing, people imagine when they hear exposure therapy is you’re afraid of spiders. And so you learn how to like, look at a picture of a spider and be in a room with a spider and then touch a spider, you know, in this case, it’s like, you literally have to get exposed to your own discomfort, your own emotional, mental discomfort.

Carlyn Neek:

And there’s a parallel there because it it’s the same. It’s, it’s a similar strategy to getting sitting with your physical discomfort so, or pain.

Cheryl Crow:

Yes.

Carlyn Neek:

Right. So I, in my work, I tend to use very parallel strategies for pain and for anxiety, because these are both things that tell our nervous system we are, are in danger.

Carlyn Neek:

And so they’re harder to unhook from because I’m trying to escape physical pain, I’m trying to escape emotional pain. And and both of those things would feel very, very threatening. And so learning to retrain and go, okay, like I assume, I don’t know exactly about your day to day experience show, but I imagine you it’s pain every day.

Carlyn Neek:

And if you spent all day trying to get rid of it not to say getting reducing pain is a bad thing, but if all of your actions in a day were oriented to eliminating pain, you wouldn’t be doing all the things that you need to be doing. You wouldn’t be working, you wouldn’t be parenting. You wouldn’t be, you know, taking care of the house and the dog and all of the, those things doing this podcast. And so it’s the same for emotional pain discomfort, right?

Carlyn Neek:

Anxiety. if it’s controlling, if the symptom, whatever that symptom is and discomfort sounds like I’m like reducing it. But if we can kind of lump all sizes of discomfort and pain into and physical into the same, if they are controlling all of our actions, we are not living a fully meaningful life. And so being able to find ways to sit with what is, and be curious about it it helps us feel a sense of control actually. Like if we can then choose our actions, we’d like to control our actions and what we’re doing with our life rather than control the symptom.

Cheryl Crow:

That’s so, yeah. And that’s one thing you always have, well, not always, but you, you have some control in any moment on what you DO, versus you don’t always have control over how much pain you’re in. And I, the, what you’re talking about with holding onto things tightly, I remember this book, “Even Cowgirls Get the Blues” by Tom Robbins.

Cheryl Crow:

One of my favorite fiction books, he’s just a great writer. And he’s, you know, in the book, there’s this kind of repeating theme of like that, which you hold, holds you.

Carlyn Neek:

Mm-hmm, <affirmative>.

Cheryl Crow:

You know, the holding the tighter you hold onto this idea that, I have to have perfect symptom control and I have to fix this problem. You know, my I’m a, I’m a warrior and I’m battling against my condition.

Carlyn Neek:

Yes.

Cheryl Crow:

A lot of people find the warrior like W A warrior like metaphor really helpful and empowering. So again, if it’s helpful to, to you do it, but what I’m saying is that, like, this is a chronic lifelong illness. Like there are, there, there are people who are able to find like something that works for a while, but no one at the end of the day is, is guaranteed to have conquered all suffering in human life.

Cheryl Crow:

Like whether it’s rheumatoid arthritis, multiple sclerosis or just life like, life is going to, and that’s the thing that I think is like, it’s like the elephant in the room that like no one ever really said until I started reading into ACT and kind of realizing that like, like no one is guaranteed a life without suffering, you know, <laugh>. And So –

Carlyn Neek:

In fact, the only way to avoid suffering is to not do anything, not love people, not take a risks, not go on a date, not go swimming or, you know, like there’s what, what life is that? So I love what you’re saying about yeah, about that kind of that urge to, to get away and be the warrior and fight this thing. And because, and similarly like there’s no one right way to do it. And if it’s workable for you, if it’s working and effective for you, great.

Carlyn Neek:

But it’s good to have other tools in the toolbox for the times when that doesn’t work for you. And so, and I’ve heard this similarly with cancer too, that some people are like, we’re gonna fight this and da, da, da, and essentially you’re become making your body an enemy. You’re making your human experience and enemy. And that’s not very compassionate, right. That’s being in fight mode all the time. And that doesn’t work all the time.

Carlyn Neek:

It, it, it, you know, cuz there are moments where you have to be kind to it and treat it like a small child or or a loved one and yeah, you, that doesn’t mean you’re gonna love your pain. You’re gonna be like you great. I love rheumatoid arthritis. It’s awesome. But if you’re at odds with your day to day experience as the enemy it, it it’s really, it’s more hooky like it, it kind of keeps you in that fight mode.

Carlyn Neek:

How do I get away from this? And fight flight freeze is not good experience to be in our nervous system all the time. Right. And so being able to turn with self-compassion and I love Kristen Neff’s work for this and, and ACT is full of self-compassion. So it’s, it’s, it’s all aligned, but Kristen Neff talks a lot about actually she’s sent a lot of research. I pulled up an article, she’s got a cool book called fear- Fierce Self-Compasion that I read recently. And in it she talks about many things that the research has shown a practice of self compassion actually improves and it’s happiness. People are more hopeful and optimistic, more satisfied with life, more gratitude, less anxious, less depressed, stressed, less fearful, less likely to compete, complete a suicide, less likely to abuse drugs and alcohol wise or more imp- emotionally intelligent.

Carlyn Neek:

And I’m not even halfway through the list. I’m not gonna read it all to you, but ultimately having self-compassion and turn toward all of our experiences. And all of us with compassion is more empowering than fighting ourselves because ultimately you’re living with this and you know, you’re likely to always experience some level of pain. And if that’s always the enemy, you’re always at odds with yourself and being able to turn to it with compass and kindness.

Carlyn Neek:

Udoes, have you heard, do you know the,ubook and I know you said warrior w a and so I was thinking about that reference to the book, Hey, “Hey Warrior?” Uno, it’s a, it’s an anxiety book for kids and there’s this fuzzy friend who’s really protective. And he’s like twice the size of, of the kid and the kid, when the kid gets scared, the, the, this kind of this it can, and it refers to warrior kind of thing, warrior warrior mm-hmm <affirmative>.

Carlyn Neek:

But the, the, this fuzzy guy jumps in and he’s gonna protect him from all the things. Nope. Let’s just stay here. Let’s just stay closing in our tent. Let’s not go do those things. And it turns out that the big fuzzy guys amygdala <laugh>, oh, that’s there he’s and our amygdala jumps in and says, Hey, no, we’re not gonna do this. And instead he makes friends with the, a amygdala and says, Hey, you know what, I, I, I really wanna do this though. And I know you wanna protect me from any risk, but it’s really important for me to get out of the, the blanket Fort and go out and something.

Carlyn Neek:

And, and so befriending, the part of you that puts you into fight mode is, is the moral of that story. I love that. And.

Cheryl Crow:

I remember my therapist once told me the analogy of like, you know, when, when your child is like maybe two years old and they’re learning like to go kind of play on the playground, them more independently. And they’re sitting at the top of the slide, like, and they’re saying, I don’t wanna go, but you know, they really, they wanna go down the slide by themselves, but they’re scared. Like you have to allow that child, that moment of discomfort and fear. And then because, you know, if you keep holding their hand and, and, you know, pushing them down and being with them every single time, they’re they never have that sense of like, you know, accomplishment.

Cheryl Crow:

And they have to just experience it themselves of, of going that, that, okay, there was this discomfort. And I, and I, I don’t wanna say pushed through it, but like, you know, I survived and, and I think it’s like, this, it is again, I feel like it’s like very paradoxical. Like I sometimes I almost name one of the episodes of this podcast, like the paradoxical power of acceptance, because it really is paradoxical.

Cheryl Crow:

Cause you think a lot of people equate acceptance, we haven’t even used the word acceptance very much yet. We have episodes.

Carlyn Neek:

I avoid it on purpose.

Cheryl Crow:

I was gonna say a lot of people avoid it. I guess I’m weird. Cause I don’t, I mean, I guess I’ve like, I’ve like, totally like I’ve gone full circle of like, I love acceptance now. Kidding. Sorry. But.

Carlyn Neek:

Radical acceptance even, right, Which is empowering.

Cheryl Crow:

And it does again, acceptance doesn’t mean resignation that things will never change, but it’s accepting that like…I clung so long, you know, so hard for so long to, you know, control and you know and it’s like, that is a burden to yourself to get to, you know, it’s like, don’t flatter yourself to think that you can control the universe. Like you can’t. And like, it’s like at first it’s like, whoa, that’s tough love, but then it’s like, it’s a, you you’re unburdened.

Cheryl Crow:

You’re like, yeah, like I’m gonna do everything I can today. It like, again, like my old soccer coach used to say, you know, control the controllable. Like I’m not gonna be like, who can control whether food comes in my body today, who knows, like I’m not gonna eat. I’m just gonna let the food cut. Like obviously you have to make like choices, you know, and like be a human. But but sorry, that was a long tangent.

Carlyn Neek:

No, but that, that kind of feeds nicely, ’cause I know you wanted to talk about like the uncontrollable situation of the pandemic uncertainty, so that’s excellent transition.

Cheryl Crow:

<laugh> Yeah, s. And I know like, so right now everyone in the world is living through a worldwide pandemic and there is, I have found,uthat, you know, these struggles with the uncertainties of the pandemic, they’re not different than the struggles of uncertainty in general, right?

Cheryl Crow:

It’s just that it’s on a much bigger scale. Yeah. But you know, like people who, let’s talk about though, people who are immunocompromised specifically, cuz that we are having those of us who are immunocompromised are having a unique experience within the global pandemic because we know we are more at risk than the general public is in, in general.

Cheryl Crow:

So, and there’s been a lot I mean we could talk forever about this, but you know, I, I think one of the hardest things that I’ve found myself and the members of my Rheum to THRIVE support group that I facilitate is just on the very practical level, like assessing risk on a daily basis, you know? Okay. Is it worth it to go to a friend’s house if they’re vaccinated and they test negative, but what if they actually are about to test positive in two more days and they’re in their incubation period and what if you know, but if I don’t ever see anyone ever again, that’s not good for my mental health.

Carlyn Neek:

And so like you go again going on these uncertainty…

Carlyn Neek:

And what if they judge me for being too overly cautious?

Cheryl Crow:

Oh they, yeah. And they will, and they are. Yeah. And people, you know, it’s like, you can’t win, you know, to some people you’re like, oh, you’re just a sheep. And you’re, you know yeah, there’s a lot, there’s a lot help, help us help me. No. Yeah. <Laugh> what, what do you say to this?

Carlyn Neek:

Oh, so many things, so many things. So I think what’s coming to mind first is perspective taking we are all living a perpetual trauma and we’re all bonding differently. And so when I try to step outside of like, when we’re, when we’re really hurting, it’s hard to see other people’s perspectives. Right? I’m this is me. And why on earth are you putting me at risk? And why on earth are you judging me for taking care of my health?

Carlyn Neek:

And why on earth would you, you know, all of those things, it’s actually probably if we kind of step and go, okay, let’s look at it as a curious observer, which is an ACT thing to notice myself having those kind of self-oriented perceptions of the situation. But if I can kind of step out and be curious about, well, what that what’s, that other person’s experience? Right? And how are they responding to the pandemic?

Carlyn Neek:

Cause there are a lot of people responding to the, I mean, in so many, so many ways, <laugh> I not even think in my own family, there’s a huge perspective, her huge variety of ways. And I’ve had to, because these are people I really love. I’ve had to kind of go, okay, like to me, like why on earth? Would you say it that way? But I have to, I have to try and help myself see it compassionately because I love you as my sibling or you know, friend or what have you.

Carlyn Neek:

And still I have to keep myself safe. And so if I can kind of go, okay, like not everybody has a, a scientific health background. So I might not see things the way I see them. Other people kind of have just like thrown up their hands and go, oh, I like, you know what? I’m just gonna get on with my life. Like everything we’re trying to do to control this. Isn’t working. So I’m gonna get on with my life and look at that. Now everybody’s getting COVID. I don’t like every time I have a conversation it’s like almost 50 50. Do you have COVID now? Or do you not? Right. Which is very scary for people who are immune compromise. And, and then kind of going well, some people take that same information and go see like we’ve been controlling our lives and avoiding all these things.

Carlyn Neek:

And it’s not that big a deal. Which I don’t think that’s very useful perspective because of variants and whatever, but not everybody can look at it that way. And so people respond in different ways and I’m noticing a lot of people who have earlier trauma of some sort related to control being controlled, being abused, being in the military, being, you know, all of these things are really responding to this sense of being restricted as abusive that they’re responding in that way. And so that’s how they’re handling and trying to survive this pandemic. And while I disagree with them, I can try to see it from their perspective and go, okay, I can see why maybe this person’s responding that way. That doesn’t work for me in my life here. <Laugh> and, but maybe that isn’t about me. Yeah, no, that, that totally, that totally makes sense.

Cheryl Crow:

I, I didn’t think about how it would feel to have a tra trauma, like you said, trauma related to control. And how being restricted. I mean, cuz I, I have, I, I have struggled when I talked about claustrophobia earlier that it was actually claustrophobia, which is fear of being trapped. And I was so I both claustrophobia and claustrophobia and I kind, still struggle with them. But it’s –

Carlyn Neek:

I didn’t know. There’s a difference. I think I have the latter, Oh interesting.

Cheryl Crow:

I think a lot of people just use claustrophobia as a as it’s catchall, but yeah, Lytro obvious is spelled like C L E I T H R O. So I don’t even know if I’m pronouncing it right. Yeah. But but I have had that with the fear of being trapped in my body. Like when I honestly, not even my RA as much, but I’ve had some really bad stomach bloating before where I just feel like I just wanna like remove my stomach and my entire GI system and just like put them, you know, take it off.

Carlyn Neek:

And I’m like, it’s like, it’s like.

Carlyn Neek:

It’s the enemy.

Cheryl Crow:

Yeah. Something’s on me. It’s like, get it out. I need to get out. I need to get out. I’m like, I’m trapped in a room. It feels like that. But it’s a mental, it’s not, I’m not in a small space. Right. But but the point is that like, yeah, so people telling you, if, if you have that kind of challenge around control, then being told that you can’t leave your house or you need to be yeah. Locked down is, is really difficult.

Cheryl Crow:

And I think, you know, yeah. I I’ll say for, for me, you know, there’s been a couple times when others in the, in the immunocompromised community, like I’ve, I’ve just done little cute videos of like, I got my vaccines today or like trying to help normalize it and also just totally share my experience.

Cheryl Crow:

That’s part of being like a, you know, quasi influencer type person, you know, and also being like, Hey, you know, I trying to help amplify the importance of vaccination, all this stuff. But I, but like at a certain point I have to say like, I have a limited – so, when I get all these comments, you know, the anti-vax and, and other things like, again, I can, I always do try to operate from the assumption of like seek first to understand, you know, like everyone has a logic to their point of view, unless they’re like very, very mentally, you know, unwell. But so, but then I also am like, I also need to…I have X amount of like energy in a day or X amount of spoons and I wanna spend them like, where, what do I value connecting to what I value and what also is the best of return on investment?

Cheryl Crow:

Like I can spend the next hour engaging in debates about vaccines that are not gonna be productive for anyone.

Carlyn Neek:

It’s not workable for you.

Cheryl Crow:

It’s not workable. And it’s not, it’s, it’s actually just perpetuate, it’s making me more anxious and not to say that I have to avoid anxiety at all costs, but it’s having a negative effect.

Carlyn Neek:

Why create it? <Laugh>.

Cheryl Crow:

Yeah, exactly. Or I can spend that hour, like supporting the people in my support group and like creating more, you know, educational videos and like things that I know are gonna bring value to the world. And, and, and so I think that that’s where a lot of people are getting stuck, cuz they feel this like it, when let’s say I comment on a video and I do sometimes respond to the comments that are, you know and there’s a lot of, there’s a gray area with, with, you know, with people who have autoimmune diseases and for sure and who, you know I have friends who have had, you know who have severe allergies who can’t take certain vaccinations and, and and, oh shoot, I, I forgot my train of thought. Butthey were, it’s like, oh, when you make a comment, it can feel like, okay, I’m helping, like I’m helping the situation because I’m like, I’m maybe sharing some information, but then you can get stuck in this, like this, this little cycle of like I have to, I have to like come on everyone’s thing and like someone’s wrong on the internet, and then that…

Carlyn Neek:

I know I get hooked. I get hooked by that too sometimes. Exactly. And then it’s kind of helpful too, to remember that when we get in total opposition from some, with someone we’re never gonna actually change their perspective like that, the kind of better negotiating point is somewhere gently in the middle. Right. And so I like you as a healthcare professional, I feel a responsibility to share a perspective because opposition is loud.

Carlyn Neek:

And so if people are only hearing that and I mean, social media is notorious for only putting in front of us, what aligns with what we wanna see. Right. But sometimes the, the, the things get through and anyways, I feel a responsibility to share perspective, but I’ve chosen not to get loud about it. There was a time where I think I was as loud about it, but I need to be kind of more empathetic and make room and, and kind of acknowledge that, you know, like not everybody can even get the vaccine because of their, their immunocompromised status for instance, or that’s not the same for everybody.

Carlyn Neek:

Who’s immunocompromised, there’s ways that you need. And I’ve been watching your stuff, it’s very educational. And I think education versus conflict is, is more effective and it’s less draining for you. And, and thinking back to ACT in all of this too. ACT is like, the main goal,I mean, the main goal is to live a rich, full and meaningful life, but the skills themselves are building in psychological flexibility.

Carlyn Neek:

And so if we can create a little bit of curiosity and seek first to understand, right, like try to understand, be curious, be open. We’re less likely to be in this. Like we need to fight and we need to argue. And our nervous system is overwhelmed and has us in fight mode. If we can leave room for question and leave room for curiosity, there’s this I think it comes from another kind of approach that I’m not so sure about, but the, this idea of “IF-firmations,” so like there’s a lot of people like affirmations and I did a YouTube video about that.

Carlyn Neek:

That there’s actually like, if you actually don’t believe the affirmation that you are reminding yourself, it only serves to highlight the gap and people tend to feel worse, but if you actually believe it and need it as a reminder, cool. Um something that is an alternative is what if, and so if you were to say I am pain free, or I, you know, or something like that, well, what if like – is that, is there a possibility we don’t know that there’s a possibility or what if this day to day is gonna go okay, or what if I have a great day or what if, and, and what it’s doing is just that kind of similar, that slight perspective shift of, of possibility. We don’t have to convince ourself the opposite of our assumption or our fear. We have to be open to curiously exploring alternate possibilities.

Carlyn Neek:

And when we’re open to possibilities, we’re more wiggly and flexible and we can more easily choose something that’s meaningful. Choose our actions, choose our behaviors rather than being controlled by control. Yeah.

Cheryl Crow:

Controlled by control. Yes. So meta, so I, I just bought a, I bought a shirt from, I love this website and it’s a nonprofit called, I think it’s a nonprofit Self-Care is For Everyone. And this shirt just says, what if it all works out? You know? Cause my anxiety brain tries to tell me all the possibilities of things, not working out come constantly. You know?

Cheryl Crow:

And it’s actually, I dunno if you’ve heard of positive pessimism or defensive pessimism.

Carlyn Neek:

No, but it’s actually, that’s cool though.

Cheryl Crow:

. It’s it’s weird cuz I it’s a, it’s a phrase that I came across like years ago in my undergrad, but it’s basically saying, so it’s a style of always thinking that the worst will happen in, in actually in an effort to be chronically, pleasantly surprised <laugh> so you’re chronic, you’re actually like, oh this is great.

Cheryl Crow:

Life is great because like the worst case didn’t happen. Right? Yeah. But what I was also okay, when you were talking about oh shoot, sorry I lost it. I lost it. But you were talking about okay. Nevermind.

Cheryl Crow:

The other thing, the thing that I think keeps coming up in, in my kind of social group is there was a point in the pandemic where we were at least in the, in the us and, and in some parts of Canada, you know, we’re locked down. Like lockdown was very black and white, right? Like I can, the way I can socialize is virtual, that’s it. And with the people in my home and then there’s, quote unquote, regular life pre pandemic life.

Cheryl Crow:

But now we’re in the messy middle, right? We’re we’re not in lockdown.

Carlyn Neek:

I think it keeps changing too.

Cheryl Crow:

And it keeps changing. Yeah. So like, if we, again, maybe I’m doing too specific, but like drilling down into like a specific of someone trying to figure out like how, like let’s say I wanna go, is it, is it safe?

Cheryl Crow:

This is the thing I’ve heard. A lot of people say, is it safe for me to go have coffee with a friend? What if we sit outside? What if we go to the person’s garage? What if we go to a restaurant? Like what? And, and it’s, we’re seeking the, the challenge is that, okay, we’re seeking like this answer and no one can actually give you the answer, like it’s safe or it’s not safe.

Cheryl Crow:

They can give you an overall idea of risk. Like I was actually back in like that weird period, like before Delta and like after vaccinations, you know, where we were like, we were kind of pretty be good. Yeah. Like I remember asking my rheumatologist, like how bad would it be to go on a flight right now? Like yeah. You know, trying to think about like planning the future and like having somebody to look forward to.

Cheryl Crow:

And then she was like, actually, you know, you’d be worse off going – this is just what my rheumatologist said, I’m not giving anyone medical advice. But at that point she said, the, you know, if you went into a restaurant and ate a meal unmasked, that would be worse than going on an airplane and keeping your mask on the whole time. She’s kind of saying like, it’s about kind of eating and breathing unmasked.

Cheryl Crow:

And that was so there’s, there’s ways you can kind of have a, a hierarchy in general. Like yeah. If I’m sitting in like a ventilated space with a friend having coffee on their deck, that is gonna be less risky than unmasked in their home with maybe their of eight people or whatever. But like we get, do you know what I’m saying? Like, I’m, I totally do what are some tools for people to like ride those waves of uncertainty instead of seeking certainty? Cause I just, I just want the answer, just tell me what I can do and I’ll do it, you know?

Carlyn Neek:

Yes. And the, a stressed, human seeks like thinks in black and white. Yeah. And so like, and thinking too, like when I learned about cognitive behavioral therapy, there’s a list of cognitive distortions and it’s all or non-thinking or black and white thinking. And that is the default for a lot of stressed individuals. Like, have you ever been in an argument with your spouse or somebody you always do that? We never do this and those infuriating cuz you’re like, nothing is always a no always do that. I do sometimes do that. And and so thinking about that in terms of, are we safe or are we not safe? Right. Like I mean, are we ever a hundred percent safe? No. Like you could be walking down the sidewalk and get run over.

Carlyn Neek:

Like you, there’s sort an amount of risk that you are making room for. I used to be a flight attendant when I was in university and people, people, lots of people are terrified of flying yet. They’re not terrified to get in a car. Were there a million times, not a million, but many, many, many times more likely to become injured or paralyzed or die. But there wasn’t fear there. And the difference often is control. I have no control about what this plane does. Well driving. I feel like I have control. However, you don’t have control over the other drivers or, you know, in walking down the street, you don’t have control over whether somebody is driving drunk on the road. So calculated risk, measurable risk. So my family, we love, love, love to travel and the pandemic has been hard in that way.

Carlyn Neek:

Right? And like first world problems, but still, this is a really meaningful occupation for us. And our kids are teenagers and they’re growing and you know, they’re wanting to be around us less and less. And we’re feeling like we’re missing on some really cool memory making time and we’ve done the best we can with everything around. We’ve gotten really good at being tourists in our own area. We live in a beautiful area that people travel to close to the Rockies and BA and such. So we’ve spent more time cuz normally we would fly away. My husband works for an airline and kids have a few days off for where are we flying to or off school. So our level of risk for engaging in that meaningful activity, nobody’s immune compromised in our family. You know, and yet we didn’t get on planes.

Carlyn Neek:

Like we went, we flew somewhere last summer and then we flew somewhere last fall. So Delta happened in between those and I might not have gone to the conference in the fall. Had I committed to it, like had it come up in the middle of Delta. And I like, I got to be a keynote speaker at the conference. This is the OT entrepreneurs of it. Live in Florida and you couldn’t go to that, right? ‘Cause That was for your own health. That was too much of a risk. And for my health, it was a lower risk because I I’m less likely to have complications and my family’s less likely to have complications and the payoff had high potential. And so for me, the risk was different than for you on the same, very same decision. And so I think that nothing’s black and white, if we can encourage ourselves to think in the messy middle and make calculated choices and ultimately intentional choices.

Carlyn Neek:

So what, what are my values? What do I care about? What’s really important to me, what are my own risks and how do those weigh on the scale? Like, and I think those vary from time to time too. Like there have been times where people are so fed up with all of it that they, they feel trapped in this and they’re like, screw, I’m getting on a plane and going to Mexico. And how many people have we been seeing messages? Like I’m stuck in Mexico. I tested negative <laugh> or tested positive. I can’t come home. And here I’m at the resort texting with other people and, and some people judge, cuz they’re like, why on earth would you have taken that risk? Whereas I look at it and go, yeah, I could see <laugh> I kinda wanted to go to Mexico too. And in Omicron, for most people, the consequences are relatively low.

Carlyn Neek:

We don’t know what the long term consequences are as a person who, who works with people with autoimmune disorders and things like that. I’m definitely worried about long COVID.

Cheryl Crow:

Mm-hmm <affirmative>.

Carlyn Neek:

But so many factors, so many factors embrace the messy middle and be as flexible and take as many perspectives and, and reevaluate where you can.

Cheryl Crow:

Right. And well, and I think where it gets difficult is that it’s not, it’s not just a matter of individual people making their own individual risks. It that our actions affect each other. And I think where a lot of people who are immunocompromised struggling, are struggling with like anger and jealousy and emotions that, you know, they, they can, they can come up even before the pandemic, right? Jealous of friends who, you know, like I remember thinking, I’ll just be totally honest. You know, I got diagnosed when I was like 21 and I, I had been, so I was health conscious, not in an obsessive way, but I was like, I didn’t drink, I didn’t do drugs.

Cheryl Crow:

Like yeah. And I didn’t smoke. And you know, I quote unquote, did I, I mean, I ate like sugar and stuff again. I wasn’t like perfect, but you know, to watch these people around me, you know, like I, I went to school, it was a lot of people were partying, you know, and I was on the soccer team, but I was always like the one drinking water and stuff. And like, why am I the one that got sick? Like what did I do? You know? And so it’s, there’s already anger or jealousy, you know?

Cheryl Crow:

And I wanna say, I’m not like angry at the people, but now I wasn’t angry back at the time of anyone who didn’t have rheumatoid arthritis, but I was angry at the situation, of like the unfairness of it. Yeah. And then also jealous of other people who, you know who didn’t have to deal with what I was dealing with.

Cheryl Crow:

And, and then right now in the pandemic, it’s, there’s another layer to it cuz it’s like, I can, yeah. I can take a moment to take your perspective and like understand why you might not want to like, you know, again, I don’t, I don’t want this to become about vaccination ’cause it’s just such a difficult topic to talk about.

Carlyn Neek:

For sure.

Cheryl Crow:

Let’s say, you know you know, that, that I can understand why you are making your choice, but when someone refuses to acknowledge that their choice affect others, like that’s where it gets really hard for me to just cope with like the anger or frustration I feel at those people. And so what, in that moment would the goal, like would ACT, an ACT kind of approach be to just connect to that anger and like sit with it or what would I do?

Carlyn Neek:

<Laugh> I know it’s a tricky one. I I learn a lot from TikTok and-

Cheryl Crow:

I’m sorry I’m I don’t I’m I was gonna say, I don’t mean to be like asking you for like a free therapy session. I’m just trying to general tips and tricks. Sorry.

Carlyn Neek:

I have trouble not putting on my therapist hat <laugh>.

Cheryl Crow:

I just realized that sounded like I was like, yeah.

Carlyn Neek:

So, I was watching a TikTok yesterday cuz that’s one of my avoidance escapes these days.

Cheryl Crow:

You’re connecting to something entertaining and educational. That’s what I say.

Carlyn Neek:

Absolutely. And so I follow a lot of epidemiologists on TikTok and so there’s this one who I, I should find her name, but she posted something yesterday. She’s an epidemiologist who moved to a small town in my province where the post office is in the gas station. And a lot of our province is it anyways in the small towns, there’s not people, a lot of people buying this COVID stuff.

Carlyn Neek:

Like they’re just kind of like, Nope, you can’t control me. And this is affecting my livelihood and I’m not having it. So the people who own the gas station and run the post office out of it are not wearing masks. And so everybody needs to use the post office, right. You can’t be like, well, I’m gonna choose not to go use that gas station. I’ll use the one in the next town. That’s their post office. Right. And so that’s a, that’s not cool, right?

Carlyn Neek:

And so my immediate thought was like, you need to call Canada post and you need to inform them and they need to do something. And da, da, da, like I felt like I was in fight mode. Like I was like, that is infuriating. UI, I can appreciate if, you know, there’s another place where you’re not requiring, but people don’t have to go there.

Carlyn Neek:

Okay. Make your own choices. But that is affecting people. There’s gonna be people who could have complications who have to go in the post office and what can we, so as I kind of process that, I’m thinking, well, what’s in my control in my control, I could call Canada post. And this woman very educated woman, right? She, it was a ranch that she, she normally post very educational about the studies and the research. And she was mad, mad, and I was mad with her. And.

Cheryl Crow:

It feels good sometimes is cathartic.

Carlyn Neek:

Absolutely. Absolutely. It’s it’s injustice, right? And when there’s an injustice, I jump into like, we need to fix this and that’s not fair, even if it’s not fair to me, even like, I’ll be fine, but that’s not cool. Cuz you’re taking away choice from other people. And so yeah, I, I know then went, I don’t live in this small town. <Laugh>

Carlyn Neek:

I don’t need to, I don’t know what small town it is, but I don’t need to call Canada post. She should probably call Canada post. It’s also not, not my fight. Right? Like I didn’t need to be angry all evening about it. Mm-Hmm <affirmative> uI needed to unhook a little bit and if it, if I was a person who needed to use the post off, they, that post office was putting me at risk. Then, then I might look at what I can control and what I can’t control. So first can you say, Hey, just so you know, I have this medical condition, not that you have to tell them, but COVID is actually quite dangerous for me. Mm-hmm so I would really appreciate it if you followed the guidelines,ucuz I have to come here and so that might not land well, and then what’s your next control?

Carlyn Neek:

What’s your next control, but sort of having a, you’re trying to kill me response, that we kind of feel inside is, is frustrating, right? And so like sort of that, that threat, the injustice, jealousy, those are big hooky emotions that it’s hard or two unhook from then, huh? I’m pretty nervous, right. Or I’m upset or I’m sad or I’m a little ticked, but like big, big hooky emotions where people seem to be really behaving unfairly or you’re feeling jealousy. Those are stronger ones.

Carlyn Neek:

And so the act tools for unhooking from difficult emotional experiences and difficult thoughts a lot of them surround sort of just trying to create a, just a little wiggle room between them. So in ACT, um Russ Harris, he talks about like if you’re kind of (gestures to hands over her face), thoughts, feelings are in your face here and you know, you’re not able to engage in the things that are important to you.

Carlyn Neek:

And if you’re working really hard to push them away, I’m gonna find the answer. I’m gonna fight it. I’m gonna da, da, da. You’re also not able to engage in the things that are important to you. And so being able to find a way to essentially like take the experience off your face mm-hmm, <affirmative> maybe put in your lap and you’re more likely to then engage in what’s meaningful to you.

Carlyn Neek:

And so the way that we’re trying to not get into opposition or not be entirely overwhelmed by it is there are lots of strategies, but one is, is kind of, if it’s feeling naming it, naming the emotion, how I’m feeling like this is like, it’s like strong feelings of injustice or unfairness feeling really like hooked by the unfairness. And, and being able to then go, yeah, like, can I be curious about that?

Carlyn Neek:

You know, it kind of makes sense. Like, kind of, I do tend to get really caught up when things are unfair. That’s, that’s actually really normal for me because I really care a lot about other people. I really care about things. And when, when things something’s unfair, I do tend to get kind of hooked and just that we didn’t change it. We didn’t say it’s fair. We didn’t make it all. Okay. We didn’t fix the situation, but we kind of of turn toward that feeling. I went, oh yeah. Okay. I can be curious and it’s enough to maybe take it off your face or take it outta the fight and put it down and then choose your action. What’s something small I can do. Yeah, that’s unfair. Maybe I’m gonna send an email to my grandmother instead of a letter today that’s meaningful to, to me, or can I phone somebody?

Carlyn Neek:

Can I do a small thing that’s aligned? Can I give my kid a hug or bake some cookies or something? It doesn’t get rid of it, but we’re intentionally choosing our action by just creating a little bit of wiggle room through it, through curiosity. And, and just to unhook enough to do something and the doing is actually the thing that’s gonna shift our experience of thinking and feeling.

Cheryl Crow:

Yeah. Yeah. It’s, it’s just, it’s hard. I think it’s hard for a lot of people right now because it’s one thing to be like, oh yeah, like I can see with my anxiety, like prior again, prior to the pandemic, like, you know, my brain is telling me that I’m in fight or flight, that my survival is threatened and I can kind of learn that like to unhook from that be like, oh yeah, I’m not actually in a life threatening situation right now, like maybe in like claustrophobia or claustrophobia.

Carlyn Neek:

Yeah.

Cheryl Crow:

Ubut it, it IS threatening when other people are, you know, breathing air that could kill you. It’s kind of like, yeah, this is like… Connecting, taking a moment to be – Or, or I think it’s, it’s hard for people right now to cope with all that. And I, and I just wanna acknowledge and validate to people that like, you know, it’s, it’s not to say that, oh yeah, like I need to get out of fight or fight ’cause you, I mean you, or maybe tell me if I’m wrong, but it’s like, you know, you your surviv- You could die. Like that is what’s at stake here. This is, this is life or death for many people with who are immunocompromised. And so how –

Carlyn Neek:

So that does, that looks like I’m storming out of the post office. I’m mad.

Cheryl Crow:

Yeah. Yeah.

Carlyn Neek:

But do I need to spend my whole evening and the rest of my week in that state, right?

Cheryl Crow:

Because this is a life that we get and this is what’s happening. Like that’s what I come back to a lot of times is like, you know, I could, I’m 40 years old now I could spend the next, you know, 80 years like, or sorry, next 40 years, like, I always tell myself I’m gonna live to like at least 80, I mean, like that’s my kind of baseline. Like I have three outta four grandparents lived to 94. So I’m like, okay, but having an immune autoimmune disease gotta cuts it down a little bit. But point being it’s like, you know, I could spend the rest of my years, yeah, railing against a bunch of stuff.

Cheryl Crow:

Or I could, like you said, connect to, to the present and what am I gonna wish, you know, I had done later. But just, I still, I don’t know. I don’t have any answers. I think it’s just really, it’s really hard to feel like, you know, wow, nice for you that you could be like, I wanna go to, you know, Mexico and like LA, LA LA, like, I don’t wanna be, you can’t control me. It’s like, well, <laugh>, it’s a little bit privileged, you know?

Carlyn Neek:

It is.

Cheryl Crow:

So we just have to kind of say, that’s, that’s the world I live in. Like we don’t, you know, you can go try to live by yourself on an island. But you know, there’s prob- if you have a health condition, there’s problems with that, right. Cause then you don’t have access to healthcare. So we kind of have to accept that we live in like a society with other people and we can’t control their actions.

Carlyn Neek:

And pther people who are not at their best, like nobody’s at their best, right. So yeah, I think that, I think that this common experience of living through a persistent trauma, like we’re, we’re our nervous systems are designed to like go through acute trauma, recover, go through acute. Yeah. And we’re not designed for this like that. We’re kind of at this baseline of like in this moment, you or I are not at a lot of risk, but we are actually like, we have to think through, oh, did I, do we have enough masks? They’re out of tests, I’ve got a sniffle. Should I da da the like, like we’re perpetually thinking about all of these risks and who we’re putting, maybe not everybody is, but, um, we’re at this level of stress that we’re not meant to be at. And so many people are not coping well and it’s coming out in different ways. And we almost think of it like it cancels out because well, we’re all living in this.

Carlyn Neek:

And so that doesn’t even count, you’re being a jerk or <laugh> yeah. You know, whatever. And, but, but people are not behaving at their best. So people are not experiencing, they’re not coping at their best. And so that looks to different for different things, different for different people. And so having that sense of compassion radical acceptance, you don’t have to like it, that person’s behavior is not okay.

Cheryl Crow:

Mm-hmm <affirmative>.

Carlyn Neek:

And that situation is not okay. And don’t you see that this is so much worse for me than for you, you privileged jerk? <Laugh> Right? Llike, but, but nobody’s coping. Well, very few people are coping well, and I hope that like, there’s a lot of positives. I think people have had to learn to live with more flexibility. Like people kind of last week, people were asking me like, what, what are, what are your weekend plans?

Carlyn Neek:

And I honestly thought we would have COVID by the end of last week because everybody was getting it. And my kids were both in a hockey tournament. That was the citywide tournament where I think a lot of people were pushing the limits of when they should or shouldn’t play because the stakes were high. We need to the championship. Wow. Right. Yeah. And so I kind of thought that, you know, the only people left, were they gonna be the ones who didn’t have all their players off with COVID because it’s just, the numbers are so high here right now. Mm-Hmm <affirmative>. And so then I was like, oh, weird. Like, I wasn’t even like making weekend plans because I’ve given up on making plans like, oh, are you gonna go, you know, what are you gonna to do this summer? I don’t know, like spring break, I, no idea.

Carlyn Neek:

Like I’ve, I’ve learned to stop trying to control things. But then that also leads to me transitioning –

Cheryl Crow:

– I used to pack my weekends, you know? And now I’m like, when I have one commitment, I’m like, Ooh, this is a tiring weekend, you know? <Laugh>.

Carlyn Neek:

I feel like I retiree in that, like <laugh> yeah.

Cheryl Crow:

Yeah. Oh my gosh. Well, this, I hope this is helpful to the audience. I think it’s helpful. Again, I’m, I’m uncertain, I’m just, I’m living in the uncertainty. If it’s helpful, good, If it’s not that’s okay, too. And is there anything else you would want the audience to know about ACT or about anything we’ve talked about before we have to wrap it up?

Carlyn Neek:

You know, what a practice that helps us in moments of stress or uncertainty something that we can be practicing in advance of that so that we can be a little bit more resilient in those moments is practicing mindfulness. And so a lot of act is based in mindfulness. And a lot of people think about mindfulness as a stress management strategy, but it’s actually a way of repro reprogramming our brain to be more flexible and adaptable.

Carlyn Neek:

And so if we could engage, if somebody could, if people could engage in a mindfulness practice every day, you know, or certain touch points in your day where you are intent being mindful that will help you be able to be respond a little bit more with a little bit more of that wiggle room between the stimulus and your action or your response, kind of that it, it builds that, that, that space.

Carlyn Neek:

And so mindfulness practice doesn’t mean necessarily meditation. Some people it can be, but you can to meditate mindfully, but you can do the dishes mindfully. And so doing the dishes mindfully is maybe you’re not listening to a podcast at the same time other than this one. <Laugh> <laugh> or maybe you’re, you know, trying to catch up on that thing. Maybe you’re actually just experiencing doing the dishes and noticing the sensations and noticing the tinkling of the glass and noticing that it’s actually feeling really satisfied buying to sort things noticing that you’re kind of liking how it’s like, I got all these size glasses together that size glasses together, or how it’s nice to like see the counter shining at the end or how, how we’re, we’re noticing that we’re feeling frustrated that nobody put their dishes in the dishwasher or <crosstalk> or whatever, right.

Carlyn Neek:

Yes. Or another way to. And so if I, I, when I did my training with Russ Harris for ACT, um he had suggested like that you pick a mindfulness activity to practice. That’s actually something irritates you a little bit. It’s kind of, I was like, oh yeah, the dish is for sure irritate me. So I turned it into a touch point in my day where I got really present. And just in the experience, not in the, like not kind of going to the on earth, did nobody do this? And it’s not my turn. And I do all the things mm-hmm <affirmative> in this moment, I have a cut up and the cup is going the dishwasher. And, you know, and just being present in that, having a touch point, it could be while you’re brushing your teeth, it could be something that’s routine in your day.

Carlyn Neek:

I often teach mindfulness out on a walk, cuz it’s really easy to engage in our five senses. So intentionally noticing what we see, noticing what we hear, noticing what we smell all noticing, what things feel like, or the sensation of the wind on your face or the cold or the warmth of the sun when you come around the corner. Even just noticing the taste in your mouth. Are you, are you noticing your gum or your coffee from earlier or.

Cheryl Crow:

That’s so funny. Yeah. Sorry. I just interviewed a dentist for the podcast, so that’s perfect. Yeah. I’m noticing I didn’t brush as well this morning, is that good? Yeah. <laugh> exactly.

Carlyn Neek:

And so if people can practice mindfulness in everyday moments then things like that are that, that flexibility is a little bit more available in times of difficulty or stress.

Cheryl Crow:

Yeah. I, I really like the definition of mindfulness is simply nonjudgmental awareness of the present moment. And, and so like you mentioned, there’s so many little micro moments throughout the day. Like I actually will say I don’t have like a formal mindfulness or meditation practice, but I do try to have points for the day where I just say, okay. And my mind’s always going a thousand miles an hour hour, you know, unless I’m like really, really tired. And then it’s like, it’s all or nothing, you know?

Cheryl Crow:

So now I’ll just say like, okay, can I just take one sip of my coffee and just really feel what it feels like to take one sip of coffee instead of trying to multitask seven different things while I’m, you know, gulping down the coffee. And so I think you know, that is definitely something that can, it can definitely help you like in general, get out of that, you know, fight or flight and get into that rest and digest neurological state.

Carlyn Neek:

<Laugh> Totally, totally. I, I know I sent you one of these a long time, when it came out. And so this is Activate Vitality,Ppersonal Development Planner. And in there, I, on the there’s a on the front page, I guess people aren’t necessarily watching this on video, but I have like sort of starting a mindfulness practice and a gratitude practice as sort of a first stage, a first layer of building into your routine and then encouraging people to kind of move forward and reflect and notice the things that they really value and notice that what things really make them tick and what things really tick them off. And having that reflection so that they can be building into their days more intentional intentionality in alignment with those values. And there are some mindfulness practices in there and sort of values exercises, practices, and practices for unhooking committed action.

Carlyn Neek:

All of the ACT stuff is built into this activate vitality planner, which is available on Amazon.

Cheryl Crow:

I was gonna say, I’ll make sure to link to that. Yes. Thank you so much. And where can people find you online? I’ll put your links in the show notes.

Carlyn Neek:

Sure. Yeah. So a lot of my online content is oriented toward other occupational therapists because I coach occupational therapists using act to support their wellbeing. So to support stuck OTs in pursuing the, that meaningful way of living or working, maybe they wanna start a business. Maybe they wanna make changes in their life, but they’re really stuck in not making the action. So if there are any OTs out there who are interested in that, they can totally reach out to me on Facebook or Instagram or on my website. But a lot of the content I put out is based in act and it, it, even if I’m talking to OTs, I think it’s really helpful for everybody.

Carlyn Neek:

So maybe a really useful place to look is YouTube, a YouTube channel. That’s Carlyn Neek, and there’ll be a link I guess, for that, but yeah, I’m also on Instagram and Facebook at Balance Works OT.

Cheryl Crow:

And it’s interesting. I actually sometimes find with ACT and, or any kind of coping tool or, you know, psychological concept sometimes it’s actually easier to apply it to yourself when it’s not about something so close to you.

Carlyn Neek:

Yeah, it’s true.

Cheryl Crow:

You know, like I tend to be anxious and not depressed. So sometimes if I learn it in terms of like, cause what, so my anxiety makes so much sense to me that I’m always being defensive about it, right? I’m like, well, that’s not gonna work for me because, you know, whereas if it’s like a, if like, oh, I’m learning it for like people with depression, it’s like, since my mind, doesn’t kind of wire that way towards that.

Cheryl Crow:

I’m like, oh, okay. Yeah, that makes sense. And then I can kind of, so yeah, I think –

Cheryl Crow:

And isn’t that powerful in, like, I know you run a group and I run a group. Yeah. And I find that like one of the most powerful parts about a group is that a person is like learning it empathetically for someone else. And then they go, oh, now I see it. <Laugh>.

Cheryl Crow:

Yes, totally. It’s like when you try to teach something, you realize it yourself deeper too. So yeah, this is so great. Thank you so much. You’ve really helped kind of bring these concepts to life. And, and again, it’s, this is this, you know, pan, I haven’t even really had a whole episode focused on like anything to do with the pandemic, just because it, it, it’s so hard to kind of know how to approach it.

Cheryl Crow:

And so I really appreciate you being the first guest I’ve had on to talk really in depth about kind of how to ways people can cope or kinda see situations differently. So I really appreciate it.

Carlyn Neek:

Thank you. <Laugh> thank you for having me. I really enjoyed it and I, I enjoy time you and I get together and collaborate or learn together. And so I appreciate being here.

Cheryl Crow:

Thank you. I know I was just talking to, so I know a lot of people who are in the, in the chronic illness community have like made friendships virtually, you know, and it’s the same, you know, with you, me and you or Ushma or other friends I’ve made in the last two years in the occupational therapy world. It’s like so weird that I haven’t actually met you in, in real life. I know, I know that they thank you. Thank you.

Thank you so much for listening to today’s episode. This episode is brought to you by Rheum to THRIVE, a membership and support community where you’ll learn how to develop your own THRIVE toolbox so you can live a full life despite your rheumatic disease or chronic illness. Learn more in the show notes, or by going to www.myarthritislife.net. You can also connect with me on my social media accounts on Instagram, Facebook, Twitter, and even TikTok. Check out the links in the show notes.