How to Embrace Your Chronic Illness Journey with Cheryl Crow OTR/L
Cheryl Crow, OTR/L, is an occupational therapist who lives with Rheumatoid arthritis and runs a support group for others living with chronic illness. She also practices and applies Acceptance and Commitment Therapy into her own life and in her work.
In our chat, Cheryl shares about:
Her diagnosis story and experience with medical gaslighting
How she came to run a support group for people with rheumatoid arthritis and chronic illness
The mental health journey of living–and thriving–with chronic illness even when you are still in discomfort after trying all the things in your toolbox
And how acceptance is different from resignation
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Cheryl Crow is a fierce advocate for meeting the full picture of patients’ needs beyond joint pain. After living with rheumatoid arthritis for over a decade and becoming an occupational therapist, Cheryl founded Arthritis Life with the mission of educating, empowering and supporting people with arthritis.
Cheryl is known for her entertaining yet educational videos featuring arthritis life hacks, product demonstrations, and insights into the psychosocial aspects of life with invisible chronic illness. She created and hosts the Arthritis Life Podcast and runs the online self-management course and support group Rheum to THRIVE, where she helps people adjust to their conditions and live full and meaningful lives.
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Title: How to Embrace Your Chronic Illness Journey with Cheryl Crow OTR/L
Episode number: 23
Date: 10/04/24
Interview:
Diane DeJesus (host)
Cheryl Crow, OTR/L, Rheum to Thrive
EXCERPT (00:00)
Like, my whole orientation towards problems in my life was that I would figure it out. And you think this is a good thing, right, to be like, I'm optimistic. I'm positive. I'm going to solve this. And he kind of said, Cheryl, you're really a good problem solver, and that is fantastic for problems that are solvable. But do you think all of your problems in life are solvable? And I was like, yeah, they have to be. Because I wasn't really willing to confront the fact that, like, you know, that he's like, but you kind of know, we know that they aren't, right? We know that, you know, shit happens.
So it's funny how we know it on one hand, but we don't want to. It's like it's an elephant in the room. So that was the first kind of prodding. He kind of changed or opened my mind to the possibility of acceptance and commitment therapy.
INTRO (00:48)
If you want to learn how you can live better with PMDD, this podcast was created for you. This is Mindfulness for PMDD with Diane. I'm Diane and I'm a registered dietitian and lactation consultant. I'm also a mom, a PMDD warrior, and a trauma-informed mindfulness teacher. And this is where I discuss topics related to PMDD through the lens of mindfulness and meditation and where I share all about how mindfulness has gotten me to a place of greater peace and acceptance with my PMDD.
I also chat with people who have helped and inspired me along the way so they can share their wisdom with you too. So let's get started.
SAFETY NOTE / DISCLAIMER (01:40)
This podcast is not a substitute for psychological therapy or medical advice. Please take care when listening to this podcast, as some may find certain words or subjects triggering or difficult to hear. Take only what serves you and leave the rest behind.
MEETING CHERYL AND THE LONG ROAD TO A DIAGNOSIS (01:56)
Diane: So I am so happy to have Cheryl Crow here with me today. Welcome, Cheryl.
Cheryl: Thanks so much for having me. I'm happy to be here.
Diane: Thank you for being here. I'm so glad this worked out because I'm super excited to chat with you today.
Cheryl: Yeah, me too.
Diane: So, Cheryl, let's jump right in, if that's okay with you.
Cheryl: Yes!
Diane: I would love if you could start us off just sharing a little bit about yourself and especially your own chronic illness journey and what it is you do.
Cheryl: Yeah. So I am 42 years old and I have officially, this year, been living with rheumatoid arthritis exactly half of my life because I was diagnosed at age 21. So like many people with autoimmune conditions, it's very hard for me to condense my diagnosis journey because it was so - I call it like a saga. I actually have a YouTube video that's 40 minutes long just talking about my diagnosis experience, because it involved medical gaslighting and being shuffled between different doctors and all this stuff.
Cheryl: But just to synopsize, to attend to, you know, I was a very healthy, active child and teen. I was playing as a captain of my college soccer team. Division III, but I weighed 130 pounds and a lot of that was muscle. The reason I mention my weight - it wasn't that big of a deal to me at the time - is that I started, what I said is, I feel like I'm wasting away. Like something was off, completely off in my body, starting in my sophomore year of college. And I started losing weight, losing my appetite. And then I had this one joint that hurt.
Cheryl: And that is not a typical presentation for rheumatoid arthritis. Usually, a hallmark sign is that you have multiple joints hurting on both sides of the body that are the small joints of your fingers or toes, wrists, ankles. But I just had this one, I call it my sprained finger.
Cheryl: Okay, this is too long. So I went through doctor to doctor to doctor, but I was mostly looking at my GI issues. I was looking at gastrointestinal, you know, a gastroenterologist, because of the unintended weight loss.
Diane: Yeah. Yeah. Yeah.
Cheryl: And of course the gaslighting came in when they kept - they actually called my parents and said, we think she's hiding an eating disorder. Like, we don't know why she should be losing weight. Well, it turns out that unintended weight loss can be a symptom of what's called rheumatoid cachexia, which is the muscle wasting. And you lose weight through your muscles wasting away, which is exactly what I was saying. I felt like I'm wasting away. Long story short, that was a very, you know, I would say traumatic experience with, like, a small T. It wasn't, you know, it was really difficult for me.
WHEN MEDICAL GASLIGHTING BECOMES PART OF THE CHRONIC ILLNESS STORY (04:34)
Diane: Can I ask you? Because now the dietitian brain part of me is very intrigued. Why, or do we know why, the cachexia happens related to the rheumatoid arthritis?
Cheryl: I don't know all the science of it other than when I've tried to read a little more about it. Because I am an occupational therapist, which is a health provider, but we don't always have to know the same degree of what's going on at the cellular level as, like, a registered dietitian or a rheumatologist.
Cheryl: But it's something to do with the kinds of inflammatory cells that are released when their immune systems are attacking the lining of your synovial joints. That inflammation doesn't stay in the joints. It can travel throughout the body. And for some reason, it tends to destroy the muscle tissue. So, yeah. It's complicated. Autoimmune diseases, they're complicated. Tagline.
Cheryl: So I ended up getting diagnosed - actually, before my RA diagnosis, I was also diagnosed with gastroparesis. Sorry if I told you that earlier, but that's a disorder that goes under the umbrella of dysautonomia, disorders of the autonomic nervous system. At the time, in my head, I wrapped that up with a tidy bow because that actually resolved once I got treatment for my rheumatoid arthritis.
Cheryl: So my explanation for that at the time was my body was just super off because I had this uncontrolled rheumatoid arthritis inflammation, and it somehow sparked my GI system to shut down. But once I got the treatment for rheumatoid arthritis, my GI system was like, woohoo. I gained back the weight. I was feeling robust again. And my treatment journey was initially very linear. I went on medications, and the medications are very effective for rheumatoid arthritis for the majority of people. And so I went into what's called medicated remission.
Cheryl: So I had, for the first six years after my diagnosis, I didn't have a lot of any signs, quote unquote, of active disease. I was able to resume my prior level of activities. I was dancing. I was playing soccer. I was running around. I finished college.
Diane: Cheryl, can we back up real quick?
Cheryl: Yeah. Yeah.
Diane: Because just for the listener, I want to clarify. So gastroparesis is a slowing of the digestive system. So you were experiencing gastrointestinal issues before your diagnosis.
Cheryl: Yes. Yeah.
Diane: You've got muscle wasting. You've got, well, in your case, you said one quote unquote strained finger. Your strained finger, which really was an ongoing joint pain caused by, I guess, inflammation.
Cheryl: Yeah. It was in my knuckle, my right knuckle. And that's typically - they're called the MCP, the metacarpophalangeal joints. That's what rheumatoid arthritis tends to attack the most, followed by the PIPs, the proximal interphalangeals. The very last joint in your finger, the tip near the tip, that's called the distal interphalangeal, the DIPs. And those tend to actually not be affected in rheumatoid, but are affected in osteoarthritis. So that's one of the things doctors look at for the quote unquote differential diagnosis. What's going on here?
Cheryl: So if I had seen a rheumatologist earlier on, they probably would have seen, oh, this might be the early stages of rheumatoid arthritis. Because it's not typical for somebody at my age at that time to have swelling and pain in the knuckle joint that's ongoing for months and months. But again, as an athlete, I was used to pushing through pain.
Diane: And so once you got your diagnosis and you began treatment, the GI stuff and the weight and muscle wasting seemed to reverse?
Cheryl: Everything. I want to say just for the record, again, I don't know how many people care, but a week before my diagnosis, I woke up with every single joint in my body hurting. Like, I couldn't open my hand out of a fist. And that was the canary in the coal mine for my doctors to figure out it was rheumatoid arthritis.
Cheryl: They had initially said - again, they kept harping on this idea that I had an eating disorder. It was so frustrating. Sorry, I'm still mental. I've gone to therapy and processed this. My heart goes out to anyone listening who's been medically gaslit like that. The analogy I use is, it's like my house was on fire and I called the fire department and they're like, we're going to diagnose you with something called your house is not on fire, but you think it is. Like, you know, thinking I'm a hypochondriac. So it's both things. They thought I was a hypochondriac and concurrently hiding an eating disorder.
Diane: Right.
Cheryl: I was like, I need help.
Diane: No, no, no, no. This is so important because so many people go through this. And we're not just talking RA or PMDD. So many people go through this medical gaslighting and it's just, I can't even put into words all the emotions that you go through, because these are the people you are looking to for the answers. These are the people you feel like you should be able to trust, who you feel like should be able to see the full picture and listen to you and take everything into account and give you some kind of answer you can work with. And then you get, in some cases, the exact opposite. And where do you turn from there?
Cheryl: Where, exactly? And I had absolutely, like, if you look at any history of trauma or anything else like that, I had nothing that could explain what was going on. I had extremely good family support, extremely good friend support, no strong family history. So, you know, a lot of times doctors will look at what could be, if we hear hoofbeats, think horses, not zebras. What's the most logical explanation? And for me, it was so frustrating because I was like, look, literally, there is no other reason. Something is wrong in my body.
Cheryl: I actually thought that maybe I have stomach cancer or something. But then, of course, you start saying, well, I'm worried I might have cancer, and the doctors already decided you're a hypochondriac. Then you just continue being labeled as a hypochondriac. It's really, really hard.
Diane: So you put it perfectly. Where do you turn to?
Cheryl: Right. Fortunately, my parents believed me the whole time. Unfortunately, just for the record, my extended family has a history of eating disorders. I don't really want to go into all the specifics on that. It's not my story to tell. But I think objectively, the doctors were correct to consider that as a possibility. But I think it's very unethical to say that your only possibility that you're going to consider is that someone's lying to you.
Cheryl: I remember I went and did my study abroad because I'm very stubborn. So in junior year, I was feeling really crappy, but I just decided I'm going to feel crappy in Seattle, or New York where I was going to school - I'm from Seattle - or I'm going to feel bad in Australia. I might as well go to Australia. That's my dream.
Cheryl: I remember we were in this Little Italy neighborhood of Melbourne, and this really sticks in my head really strongly, so I'm sorry if this offends anyone, but I saw this couple that were pretty clearly overweight and eating gelato. And I remember staring at them and just being like, I would give anything to just be able to eat gelato. Like, I enjoy food. I don't enjoy restricting my diet. I'm not into it, really. I just like to eat healthy. But it felt like, yeah, I felt very misunderstood.
Cheryl: So anyway, eventually that led me to learn about how to accept the things out of my control and learning how to cope with all that, because whether it's medical gaslighting or something else, there are things that are going to be out of our control in our lives.
Diane: And we are 100 percent going to get to talking about acceptance. But I want to bring you back because you were taking us through your chronic illness journey. And you were saying that you got into, I think you called it like treatment-mediated remission or medicated remission.
Cheryl: You can basically either be in medicated or unmedicated remission. It just means I didn't have any joint inflammation. My blood work all looked good. But I still have the disease. It's not like cancer, where you don't have cancer anymore, you're in remission. You still have rheumatoid arthritis, but it is like dormant.
Diane: Yes. And what happened between that point in time and ultimately where you're doing what you're doing today, which is supporting other people with RA?
FROM PERSONAL TOOLS TO SUPPORTING OTHERS WITH ARTHRITIS (13:20)
Cheryl: Yeah. Chapter one of my story was straightforward. It was like, I thought this was like the hero's journey. Like, I climbed the mountain of rheumatoid arthritis, took my medicine, figured out the solution, went back down.
Cheryl: The second part was, it's complicated. Most autoimmune diseases are not so linear. You flare up and then you go through remissions. You get worse and better and worse and better. And so that characterized my treatment journey the next 15 years.
Cheryl: For me, I ended up deciding, career-wise, to become an occupational therapist. I always wanted to be a teacher, but I actually was really interested in helping children with what used to be called special needs, you know, developmental disabilities and such. And so if you don't know what occupational therapy is, I would rename us life-skills therapists. We really are like the original life coaches, or like if a physical therapist and a psychologist had a baby, because we actually have mental health training and we directly can work in exclusively mental health settings. Like I did an internship in inpatient psychiatry, which PTs do not do and cannot do under their license. Or we can work in physical rehab.
Cheryl: So we really work on the ability of the person to function better in their daily life, given their illness, injury, or disability. So it's a very creative problem-solving field.
Cheryl: When I was going through school from the years 2010 to 2012, I learned so much about how to manage my rheumatoid arthritis that I had never been taught before. And I thought to myself, why are patients only just given these 15-minute appointments with their rheumatologist once every three months?
Cheryl: There were things I was taught, right? I was taught joint-protection techniques - in layman's terms, life hacks - adaptations and compensatory strategies, or life hacks, to protect my joints, to function better in daily life. And I call mental life hacks coping tools. Coping with uncertainty, coping also with or also managing fatigue. Fatigue is something that really distinguishes rheumatoid arthritis from the kind of mechanical osteoarthritis, and it's a systemic full-body condition.
Cheryl: So I kept saying, someone has to - I went to OT school, I had my blinders on, I'm going to help kids with developmental disabilities - but someone needs to figure out how to help people with arthritis. Someone needs to do it. And in the 2000s, I got tired of hearing myself say that.
Cheryl: So I eventually formed my own solution. They say an entrepreneur is somebody who discovers a problem and decides to make a solution. So in November 2019, I registered my website, registered my organization, thinking I'm going to do this on the side while I still work as a pediatric occupational therapist in the school system. I still had my blinders on for that, which was great for the time being.
Cheryl: And I was like, my mission with Arthritis Life is to educate, empower, and support people with inflammatory forms of arthritis, the autoimmune types. So when the pandemic hit, I was like, okay, well, I'm not going back to the schools because I'm immunosuppressed with my medications and I needed to take care of him. And I had a six-year-old kindergartener at the time. I think your son's a little younger, but it was hard to figure out how you're going to balance everything.
Cheryl: So then I developed my own comprehensive self-management program. It's really an empowerment program, a self-paced course called Rheum to THRIVE. And then there's also a support group option for that, where I do online support groups for four months. And it's been really great. So, yeah, I love talking about that. I'm happy to talk more about that.
Diane: That's so cool. That's how it all happened. So, okay, the way that I discovered or found out about you is I heard you talking on another podcast about acceptance. And this is where I got so excited and was like, I need to talk to this person.
Diane: Because over time, I have been putting more and more acceptance and commitment principles into my own program for people with PMDD, and I get so excited about it, but I feel like I haven't quite yet hit the nail on the head of how I want to talk about it. And what I found with you was, I just got so excited hearing you talk about it, hearing you talk about some of the things that I've experienced and just the way you wrap it up and put it into words. And I said, I need to chat with this person and nerd out with this person over ACT.
Cheryl: That's like my favorite thing to do. So when you emailed me, you're like, I don't know if you would want to do this. I'm like, yes. Yes, I would. This is my favorite thing to do.
Diane: Yeah. So obviously I could do this too, but I would love if you could maybe usher us into this topic with your own way that you like to explain what ACT is. And also because I think the first thing people think when they hear acceptance is like -
Cheryl: There's really a PR problem. Every important thing I've ever been involved with has a PR problem. Like occupational therapy: it's not just about getting people jobs. Rheumatoid arthritis: it's not actually just arthritis. It's not just joints. It's a systemic autoimmune condition. ACT, acceptance and commitment therapy: ew, I don't want to accept things. That's actually not really what you think acceptance means.
Diane: Because I think that our first response when we hear acceptance is like, oh, so just giving up, rolling over, not trying anymore. Right?
Cheryl: Yes.
Diane: So for you, what does acceptance and commitment therapy mean?
WHY ACCEPTANCE IS NOT GIVING UP (19:16)
Cheryl: Yeah. When we say ACT, it stands for acceptance and commitment therapy. I first learned about this through my own therapist. When I started therapy, my son was about one year old, and I thought, oh, again, because I had this stubbornness and optimism - the two things that get you the furthest in life and also can really get you to some bad places - because you're stubborn enough and optimistic enough to think that I'm going to solve this problem that's unsolvable.
Cheryl: So long story short, I was like, I'm just going to go for a few months to therapy to figure out, this is probably just postpartum anxiety. Flash forward four years later, still going to therapy at the time. So now I do check-ins. But the therapist basically explained - well, he made me confront the fact that not all problems in life are solvable. And I know it sounds so simple when you put it that way, but I'm like, no, no, no, no, no, no, I just need to solve it.
Cheryl: My whole orientation towards problems in my life was that I would figure it out. And you think this is a good thing, right, to be like, I'm optimistic. I'm positive. I'm going to solve this. And he kind of said, Cheryl, you're really a good problem solver, and that is fantastic for problems that are solvable. But do you think all of your problems in life are solvable? And I was like, yeah, they have to be. Because I wasn't really willing to confront the fact that, you know, he's like, but you kind of know, we know that they aren't, right? We know that babies get cancer. We know that, you know, shit happens.
Cheryl: So it's funny how we know it on one hand, but we don't want to. It's like it's an elephant in the room, right? It's like death. So that was the first kind of prodding. He kind of changed or opened my mind to the possibility of acceptance and commitment therapy.
Cheryl: And then he recommended that I read The Happiness Trap by a psychologist named Dr. Russ Harris, who is the nicest person. I feel like he's my friend. He's not. He doesn't know I exist. But he does have a free Facebook group called The Happiness Trap Discussion Group. If you're not on that, he will answer questions.
Cheryl: Anyway, that's not the point. The point is that he explains ACT in a way that really made sense to me. So you asked the question, what is ACT and what is the difference between acceptance and resignation?
Cheryl: The definition that he said that really stuck with me is, it doesn't mean liking what's happening in the present moment. It means taking what's offered. So in the present moment, life is offering you pain right now, if you have arthritis - joint inflammation, joint pain. Life is offering me uncertainty. Life is also offering me a lot of beautiful things. And so from the mindfulness standpoint, it's taking what's offered, making space for it, and then actively making space for it, allowing.
Cheryl: And that word, allowing, was even harder for me than accepting. Allow this? No, I'm going to beat it back with a stick.
Cheryl: One of the analogies they use is, let's say all your problems or the things that are making you uncomfortable are like a beach ball and you're in the water and you keep trying to stuff it under the water and it just keeps coming back on you. You end up wasting all this energy trying to submerge it, trying to make it go away. What if you just let the beach ball be beside you in the water and keep going toward what's important in your life?
Cheryl: So that's the commitment part. The A part of ACT is accepting, allowing, making space for your thoughts, feelings, sensations, exactly as they are in the present. Not that you think that they're always going to be that way or thinking that there's no hope for the future being better, but you say, I'm going to take a moment to allow the present moment to be just what it is and make space for that.
Cheryl: Then you connect with your values and you commit to taking effective action towards your values. And I'll say just one more quote from the book where he says, first you make room for your thoughts and feelings, allow them to be exactly as they are, then you ask, what can I do right now that is meaningful or important? This is very different from asking, how can I feel better? And once you've identified an activity you truly value, go ahead and take action.
Cheryl: And that was the paradigm shift for me, because when you're sick, when you're chronically ill, a lot of your life becomes about how to feel better. Or if you have anxiety - which it turns out I do actually have clinical generalized anxiety disorder - I've learned that ACT is really helpful for coping with that as well. Instead of saying, well, how can I make my anxiety go away? How do I make these uncomfortable thoughts go away? You say, how can I proceed forward in life alongside these thoughts? These anxious thoughts are just along for the ride now.
Cheryl: It frees up your energy. If all your energy is spent trying to fix and solve everything - I think with your experience as a registered dietitian, that's where I see it happen a lot in the autoimmune community. People make their whole lives about, like, I have to control my inflammation through my diet. I have to have the perfect diet. And they're so stressed, first of all. They're just trading one inflammation for another. Maybe you're eating anti-inflammatory, but now you're so stressed about what you're eating, your stress is inflammatory, so you're still inflamed. And your whole life becomes about food. It doesn't become about what is the purpose?
Cheryl: The purpose of your health-promoting behaviors, in the case of food, is to enable a quality of life. Well, what if you can have a good quality of life without everything that you eat being perfect? What if you could have a quality of life that is good for you, and take effective action, and have a vibrant existence with pain?
EMAIL LIST NOTE (25:35)
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LIVING ALONGSIDE PAIN INSTEAD OF MAKING LIFE WAIT (26:02)
Diane: Yes. Yes. Oh my God, there's so much I want to jump into here. One of my favorite mindfulness teachers says that the aim of mindfulness and the aim of ACT is not to feel better, but to get better at feeling. Meaning, how can we, just as you said, take what's offered and allow it in? And as you said, we don't have to like it. We don't always have to be happy and going, oh, this is great. I love what life is offering right now. But kind of bring it into the fold, work with it, bring it along for the ride. And in doing so, we are, as you said, expending less energy, and now we can see more clearly those things that are most important to us in life and bring those to the forefront. Those are the priority as opposed to all the fighting.
Cheryl: Yeah. It was a really transformative experience to say, instead of predicating my happiness on, oh, I have to achieve this perfect state of health before I can be happy or have a good life, to say, oh, well, people - and everything intersects, right? It's also about ableism and counteracting your own internalized ableism in the case of people with a chronic illness. Because part of the messaging we get through our culture is that the only way to have a good life is to be inspirational and overcome your challenge, right? You have to be the inspirational person who, she has arthritis, but she didn't let it hold her back. And it's like, no, it holds me back from certain things. And I'm okay with that. Or maybe I don't like it, but I'm going to have an awesome life despite that, instead of conforming to an able-bodied standard.
Diane: I was thinking about that the other day. We have so many hero stories about people who just got through and did it. And do you know what? Actually, maybe they didn't do what we think they did, but that's the story that we hold up, the person who overcame and did all these huge, wonderful things and they just got through it. And it is also a hero story to be able to say, this is what life gave me. I'm going to bring it along for the ride and I'm going to find the way to have that and still live a rich and meaningful life that aligns with the things that are most important to me.
Cheryl: Yes. I think it really comes down to understanding or having a balance between the fixing mindset and the adapting and compensating and accepting mindset. Because my therapist said, if you have a problem - let's say I wake up with really bad hand pain - and there is a technique I have tried in the past that's in my pain management toolbox, like taking a warm shower, putting a warm compress on my hands, or using compression gloves, the goal is not to be like, I'm just going to accept what life is offering right now and not do anything.
Cheryl: Elements of what you're experiencing, if they're solvable, it is worthwhile to put your energy towards that. But what I find in my work with the support groups of people with rheumatoid arthritis and similar is that most people, the world around them, has given them this message that it's all about the fixing. It's all about, you know, get the anti-inflammatory diet. Do exercise so that you manage your condition.
Cheryl: And it's hilarious as an occupational therapist. Again, we definitely want people to be able to achieve the best state of health that they can. But part of that, in your mental health journey, entails being able to say, okay, sometimes I'm going to do everything I can and still have a flare-up. What do I do then?
Cheryl: And so we have to have both tools. Again, in OT, we call them remedial strategies versus compensatory. So remediation is, you fix the problem. Like your hand hurts, you do the hot compress. It doesn't hurt anymore. Though the hot compress is actually technically compensatory because you're not actually fixing it. But the medications are remedial. They take away the disease in some ways. They suppress the disease. Disease-modifying antirheumatic drugs make the disease not progress.
Cheryl: But the compensatory strategies are, okay, I've done the tools in my toolbox and I'm still experiencing discomfort or something that I don't like, whether it's pain, whether it's fatigue. It doesn't mean, okay, oh well. We say, okay, there are tools we can use to cope with that. And then there's the benefit to practicing that commitment therapy part of ACT, where you say, okay, now what can I still do with this?
Cheryl: I had an occupational therapist from New Zealand, Dr. Bronnie Lennox Thompson. She was on one of my first podcast episodes ever in 2020. She's an expert in self-management for chronic pain in general, not just arthritis-related pain. And she said, when I run my chronic pain groups, I ask people, what would you do if pain wasn't a problem for you?
Cheryl: It's an interesting question. I love it, but it kind of hurts my brain. I'm like, but pain is a problem intrinsically, right? As human beings, our evolution has prepared us to think the whole purpose of pain is to tell you there is a problem here. Tissue is being damaged. You need to take action, get away, take your hand off the hot stove. But chronic pain, there's a lot of complexity to chronic pain. There are different kinds of chronic pain. There's neuropathic pain from nerves, pain from inflammation, and then there's central sensitization, which is like in the case of fibromyalgia, where your brain is legitimately giving you the sensation of pain, but the tissues are not damaged at all.
Cheryl: And so you have to learn how to say, okay, well, what can I still do with this pain? There's physical pain and there's psychological pain, and I think the beauty of ACT is that it helps with both kinds of things.
Diane: I love that. So I know you mentioned that you learned about ACT through your therapist and Dr. Russ Harris and Dr. Russ Harris's professional development courses as well.
Cheryl: Okay.
Diane: What I'm curious is how you started to fold ACT into your life. And then I'm making the assumption, but what benefits did ACT have, if any, in your life beyond RA?
WHEN ACT REACHES BEYOND CHRONIC ILLNESS (33:21)
Cheryl: When you sent me this question ahead of time - first of all, you're very organized. You're an amazing podcast host. And I can say, I'm a podcast host too, so I know how it takes a lot of work. It's like a duck gliding over the water. It takes a lot of work to make it look natural and effortless.
Cheryl: But you sent me this question ahead of time. I really liked it because it made me reflect and remember something I hadn't thought about for a while. I started learning ACT when my son was like two years old. Sorry, I'm going to answer it in the opposite order.
Cheryl: It helped me so much as a parent, actually. And I think ACT along with direct, explicit self-compassion exercises is like a dream team, right? Because there is kind of an implied compassion in ACT, but if you do - I forget how, to be honest, maybe my therapist actually told me - but Kristin Neff, you know, self-compassion guru, spoke at one of the chronic pain conferences about self-compassion, giving ourselves the same kindness and care we would give to a good friend.
Cheryl: And realizing how often in my life I, as a parent, would have these really negative judgments about myself, kind of like the shoulder angel versus the shoulder devil, saying, gosh, why can't you just get it together? Or why aren't you more patient?
Cheryl: And it was a real mind shift for me because I'm really good at working with challenging children, actually, like children who are behaviorally challenging, kids who can't tolerate or who aren't appropriate for a public school setting. I've always felt competent at taking care of challenging children. But here's my own child, who's not challenging at all. I've had kids that have been biting, throwing chairs, and I'm able to know what to do in that situation. And first of all, anyone who works with kids and has their own kids will tell you that it's a totally different skill set. It's one thing to work with a child knowing that there's an end date. Another thing if you're that child's parent. Not a transferable skill set.
Cheryl: But still, I felt like I should be better at it. I had all these shoulds. So ACT helped me be like, oh, these are just thoughts. These are stories my brain's telling myself. Learning how to look at those judgments that my brain was making as little clouds in the sky and having that metacognition element. Saying, okay, yeah, that's one interpretation of reality, that I'm not a good mom.
Cheryl: And I never had guilt about my health condition really affecting my parenting. It was more that I was getting - my therapist taught me that anxiety can present as irritability, which I was like, oh, that's helpful to know. Because I thought I was just becoming a bad person. And the anxiety that I was experiencing was manifesting through irritability towards my husband, towards my child. It was such a weird experience to be like, the one thing about myself that I've never doubted is my ability to be a loving person. I work so well with children and adults and people that other people found it hard to connect to. But then why am I feeling like a complete bitch towards my own husband and my son?
Cheryl: I didn't even realize how much I was struggling until I started feeling better. So ACT helped me be like, oh, these are thoughts. These are interpretations our brain is having. And then the commitment piece, the self-compassion came in to help me not feel like a terrible person, and then normalizing that suffering and normalizing that these thoughts are part of the human experience.
Cheryl: And then committing to, okay, what's still important in my life? Again, saying, hey, well, I can actually proceed alongside these thoughts, these irritable thoughts or anxious thoughts, and they can become like passengers on the bus of my life. And it is important to me to connect to my spouse, to my child. I don't have to eliminate all these bad thoughts. That's what I thought before. I thought I had to eliminate all the bad thoughts and sensations, and then I would be happy because that's kind of how my life was before. It was almost like a strategy that was working before it wasn't working anymore. And I had to change.
Diane: So many good things. And I do want to get to my notes, but you were just saying how we can't get rid of those thoughts anyway. And that's what the creator of ACT, Steven C. Hayes, talks about a lot, which is no matter what we do, even if we find some temporary fix, some band-aid that can make us feel good in a moment, we cannot stop our brains from generating all these negative thoughts time and time again. That's how our brains work. That's being human. That's life. It's going to happen. So knowing that, how do we work with that as opposed to saying, we're going to shut this down. We have to cut these thoughts off?
Cheryl: Yeah. It's a deceptively deep paradigm shift. I really think the traditional cognitive behavior therapy tool of making a list of what's the evidence for your thought and distortion really doesn't work for a lot of chronic pain-related things, like catastrophizing. It gets you into what Dr. Harris would call - and maybe that's what Dr. Hayes would also call it - the struggle switch.
Cheryl: The struggle switch is the switch that you turn on when you start struggling with or trying to fight your thoughts. So instead of saying, I'm anxious, I've got to do something to fix it, I've got to change it now, but I'm not, I'm failing, oh no, I'm failing - it's like how we treat children who are having a tantrum. We're like, calm down. We know it doesn't actually work unless the child's only at the beginning stage of escalation. Once they're completely emotionally flooded, it's not going to work to take a breath. It's too late.
Cheryl: So this radical acceptance is so freeing because you say, yep. There's a great visual that Dr. Harris had in The Happiness Trap illustrated edition where someone says they have anxiety and then they have a swirling tornado above their head and it says anxiety. And then underneath it is anxiety about anxiety, sadness, anger, frustration, guilt. So that's when you're not accepting your thoughts. You're just saying, oh, I'm anxious. I've got to do something to fix it. I've got to change it now. But I'm failing, oh no, I'm failing.
Cheryl: Instead of the tornado of thoughts that you have when the struggle switch is on, where the tornado is like, I'm mad, I'm mad about being mad, I'm sad about being mad, I'm guilty, I'm frustrated. You just say, okay, here's the feeling. It's anxiety. I don't like it. I don't want it, but I'm not going to struggle with it. And that's like turning the struggle switch off. I imagine myself doing that.
Cheryl: Or there's the Chinese finger trap toy. For those of you who are just listening to the audio, it's the little plastic, or actually, what is it made out of? Wood?
Diane: I don't know what this is. It looks like something on paper.
Cheryl: Wood, right? Paper. Wood. You put your finger on one side and the first side that you put your finger in is like the present moment thoughts, sensations, feelings. With the other finger, if you try to fight against those, struggle with them, you just get more stuck and have more tension. But when you allow it and accept it, then you're actually free to get unstuck. So I keep this on my desk, to be honest.
Diane: I love that. Yeah. I've heard you say that before. So you picked up the little toy and I was like, yes. I was going to say, can I highlight something that you said before? Because I think it's so huge for our PMDD listeners. Firstly, everything, this is why I love finding people from all different areas and professions, because anyone living with any kind of chronic illness, I think, can relate to so much of this.
Diane: And for PMDDers, as we're talking about these negative thoughts and feelings and the catastrophizing and the ruminating, it's all going to keep coming back. So I think in general, what we're talking about with ACT is so huge. But you briefly mentioned how ACT helped you in motherhood and feeling like, I should be able to deal with this. Why can't I? Why am I having these crazy reactions at home? PMDD is something that happens to people who are of reproductive age and do have a cycle. So I'm sure many of us are dealing with the same sort of parenting challenges. And so I just want to highlight that and thank you for bringing that up, because I'm sure so many of us deal with the same challenges. And I found the same thing in my life, that the benefits to bringing ACT into my life stretched far and wide, way beyond what I was expecting it to.
Cheryl: Totally, totally.
Diane: I'm mindful of time and I know you have your little one at home. I want to get to a question and also let you share with the listeners how they can connect with you. I'm very curious, because you are an OT professional and then you have this amazing support and empowerment group for people with RA, how you have found yourself actually implementing those ACT principles with your patients and clients?
BRINGING ACT INTO CHRONIC ILLNESS SUPPORT (43:40)
Cheryl: Yeah. So in the Rheum to THRIVE program, I do direct education on what is acceptance and commitment therapy. So overtly talking about it the same way my therapist did with me. You kind of have to start with a foundation of just what we're talking about. I talk about the finger trap toy. I literally brought out my slides that I present in the educational part of my program and in our live group. So I talk about the exact things we just talked about with the struggle switch and acceptance versus resignation.
Cheryl: And I built this tool called the Chronic Illness Stress Decision Helper. I really like to make things very wordy. It's like a chart, a choose-your-own-adventure chart, where I tried to synthesize in one spot to say, okay, when is it appropriate to use different tools?
Cheryl: So I say, are you having what I call a thinking problem, which is, I'm thinking about this in a way that, if I think differently about this, it will change my relationship to the problem. An example of that would be, my thought that's causing me discomfort is, it'll never get better. Or, I can't handle this. That's actually a thinking problem where you can employ traditional cognitive behavior therapy, where you say, okay, we actually don't have evidence that it's never going to get better. We don't know. I'm not saying this to delude yourself, to say it will get better, but it's unknowable. The future is unknowable. So we can help ourselves get out of that stuck state by saying, okay, could I think differently about this problem? That's a thinking problem.
Cheryl: And if it's not a thinking problem, then it's either a solvable problem or a perpetual problem. This is actually borrowing the language from John Gottman, marriage and family therapist. Turns out this is how lucky of a soul I am. My first therapist that I ever went to - I have a male therapist and a female therapist. The female therapist is actually the first one I went to when my son was really little, and she is a psychologist. She's a second author on John Gottman. She got her PhD under him.
Cheryl: I went to her because I thought she was a two-for-one deal, because I was having issues with, again, I knew something was wrong in my brain. It felt like, why am I feeling rage towards my husband, this person who I know that I love? I didn't realize anxiety can manifest as irritability. So I was like, this is just weird. This isn't me. I'm not myself.
Cheryl: She recommended I read The Seven Principles for Making Marriage Work by John Gottman. And in that book, he talks about marriages. The marriages that are most successful are not the ones where there's the least conflict. It's the ones where people accept that some of the problems in their marriage are unsolvable, are perpetual, and some are solvable. And they only focus on solving the solvable problems, and they accept the perpetual. And I was like, that really changed my mind. It kind of blew my mind at first. I'm like, this sounds like settling. Like, I'm not so sure about this. But over time, I realized what a helpful perspective that is.
Cheryl: So I implemented that in my program. In your rheumatoid arthritis journey, your chronic health journey, or maybe your PMDD journey, some of your problems are going to be solvable and some of them are not. And so when you have a perpetual problem, we have to learn how to work around it and cope with it. And that's when we employ the ACT strategies and self-compassion. And then if it is a solvable problem, then we give you the tools. In the case of arthritis, pain management and fatigue management tools. Let's use those tools if they help, but they don't always help.
Cheryl: Then we deal with that uncertainty. So that's kind of the framework. Rheum to THRIVE - THRIVE is an acronym. The T is tools for pain and fatigue. H is the healthy habits, like nutrition, exercise, sleep. R is relationships and social life. I is inner world; that's where we talk about this part. V is values and valued activities, which is the values part of ACT. And then E is executive functions, like the adulting skills or the CEO skills of being a chronic illness patient, like symptom tracking and stuff like that.
Cheryl: That's how it all kind of weaves together. And we help each other. We help to point out, wow, it sounds like you're in the struggle switch when we're in the live group. Like, it sounds like the struggle switch might be turned on. What would it look like to not turn it on? Like, yeah, your friends and family won't get it sometimes. I could teach you different ways to try to get someone else to get it, but if someone doesn't want to get something, they're not going to get it. We have to accept that, you know? Things like that.
Diane: I love this so much. Okay. So Cheryl, first, is there anything I haven't asked you that you would like to share?
Cheryl: No, not reasonably. My doctor's like, what else is bothering you? And I'm like, how much do you need?
Diane: I love that so much.
Cheryl: No, just kidding.
Diane: No, I have had so much fun chatting with you. And I'm sure, if you'd like to, we can do this another time because I'm serious that I love talking about this.
Cheryl: Totally.
Diane: So then where can listeners connect with you if they want to learn more and listen to your podcast and hook up with your group and stuff?
CONNECTING WITH CHERYL (49:45)
Cheryl: Yeah. So my website is arthritis.theenthusiasticlife.com. That's the full URL. All of my social media handles are different, so little free business advice: don't recommend that. I started them at different times. But the one I'm most active on is Instagram, and that's arthritis_life_cheryl, with a C-H.
Cheryl: And then I do share a name with a famous singer. So if you're trying to Google something with me, I recommend putting it in quotations, Cheryl Crow with a C-H, and then whatever it is you're trying to look for, like arthritis. And on TikTok, it's just arthritislife. But the website is the best way to get ahold of me, or my email is info@myarthritislife.net. So myarthritislife.net redirects to my longer website title.
Cheryl: I love chatting with people. I struggle sometimes with my executive functions with regards to responding to messages and stuff. So please don't feel bad if I don't respond to you. Just, I'm happy for you to ping me again because I'm still working on developing systems. And I know our friend Nikita is a good inspiration. I know I need to delegate more. I'm working on it. I'm working on delegating. Right now I am very multi-passionate, as you can tell, but I tend to burn myself out and say yes to too many things. So I'm working on that. That's how you can get ahold of me.
Diane: I'm sure that I can relate. I totally relate to the follow-up thing. People are like, oh, I'm so sorry to bother you about... And I'm like, no, bother me. I love it. Follow up. Harass me.
Cheryl: Yeah, please help me. Help me remember to help you.
Diane: Help me help you. That's just hard. And I will make sure to get all your key links and put them in the show notes to make it easy for the listeners as well.
Cheryl: That's nice. And my podcast is just called Arthritis Life Podcast, by the way. So if you put Arthritis Life into your podcast platform, it will show up. Otherwise, if you're just Googling, I do Cheryl with a C, Crow, arthritis. And then I find you.
Diane: Yeah.
Cheryl: And it helps if you put it into quotation marks, and you're less likely to have the famous singer or, yeah, actually, if you do Cheryl Crow in quotations, arthritis, the first thing that comes up is my bio on my own website. The second thing is Instagram. That's so interesting. I didn't even Google myself.
Diane: Okay. Thank you.
Cheryl: But if you don't put it in quotations, it's going to just show up a lot of people spelling the famous singer's name wrong.
Diane: Right. Yeah. All right. Well, Cheryl, thank you so much for being here with me today.
Cheryl: So fun. I loved chatting with you.
Diane: Thank you. I really did too.
Cheryl: I would love to have you on my podcast too sometime and talk about PMDD, because it's not something that I've covered, but I know people have lots of questions about it. So that'd be awesome.
Diane: Yeah. Yeah. Okay. Bye bye for now.
Cheryl: Bye.
OUTRO (53:12)
Thank you so much for listening. If you liked the show, please subscribe wherever you get your podcasts. For links to everything mentioned in this episode, you can check out the show notes and you can find me, Diane DeJesus, on Instagram @mindfulnessforpmdd. Now, I invite you to pause, take a breath, and look around.
