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Podcast

Three Ways I Manage Stress With Chronic Illness: Arthritis Life Podcast Episode 43

September 1, 2021
49 min read
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In this episode, Arthritis Life founder Cheryl Crow shares her framework for managing stress while living with chronic illness.  She explains why it’s crucial to differentiate between “solvable versus perpetual problems,” and “thinking versus non-thinking problems.” 

Cheryl explores how acceptance of unsolvable problems can paradoxically lead to greater happiness while managing a chronically painful condition like rheumatoid arthritis.  After this episode, you will walk away with tools to thrive *despite* rheumatic disease and challenges such as pain, fatigue, social stress and more. 

Audio from this episode is taken from a free webinar Cheryl presented in March 2021. A full episode transcript is found at the bottom of this page.

Episode at a glance

  • Introduction & definition of terms: 
    • What is stress, pain versus suffering, statistics on mental health and arthritis, common causes of stress with chronic illness (1:30 – 12:00)
  • Cognitive behavior therapy for “thinking problems”: 
    • How “Catching ANTs” is a helpful tool for “thinking problems” (when your stress is caused by maladaptive thinking patterns) (12:30 – 20:45 )
  • Mindfulness & “perpetual problems”
    • Cheryl explains how true mindfulness of the present moment (even uncomfortable parts of the present) can help cope with perpetual problems from chronic illness  (21:45 – 27:10).
  • Acceptance and Commitment Therapy (ACT)  
    • Cheryl explains how acceptance and commitment therapy helps her devote energy towards present possibilities rather than wasting time trying to solve unsolvable problems (which can lead to unnecessary stress). (27:10 -43:00)
  • Concluding thoughts: 43:00-end

Sometimes there is not a clear way to make your pain go away, no effective tool to “heal” your condition, and no way to convince someone else that  your invisible illness is real. 

While that might sound depressing at first, Cheryl explains that accepting this reality helped set her free (“The truth will set you free, but first it will piss you off” – Gloria Steinem). 

She explains how she learned this technique from #acceptanceandcommitmenttherapy. 

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Speaker Bios:

Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen years. She’s passionate about helping others with rheumatoid arthritis live a full life, by using effective tools to manage 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 she say) FUN patient education and self-management resources.

Episode Sponsor

This episode is brought to you by Rheum to THRIVE, a 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.  Join the waitlist today for the next group which starts in early October, 2021!

Episode links:

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.

Full Episode Transcript

[Introductory note]

Hi, everyone! I have two quick announcements before this episode. The first is that on September 14, I’m going to be speaking at a really exciting free webinar called Reproductive Health and Rheumatic Disease. This is sponsored by the American College of Rheumatology, which is a professional association for rheumatology doctors, as well as allied health providers. And this webinar is going to focus on the latest evidence and advice for family planning, pregnancy, and postpartum with rheumatic disease. So, that is really exciting. And also, today’s episode, the audio is taken from a free webinar that I gave through Arthritis Life in March of 2021, and if you would like to access a video of the recording, see the link in the show notes. Also, for the Reproductive Health and Rheumatic Disease free training, the link to sign up for that for September 14 is www.rheum4you.org, or you can get to it from simpletasks.org.

[Introductory music]

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: 

The topic of today is ‘Three Ways to Manage Stress with Chronic Illness’. And even though I love doing public speaking and webinars like this, I do always get a little bit stressed right before, just because I think, like anyone, you wonder, you know, “Is the technology gonna work?” you know, you just have a lot of last-minute worries. So, I was like, okay, this is good practice. I got to practice what I preach, getting ready for this webinar here. And just a little bit of a check in, so, you’re in the right place if you have a chronic illness, or maybe you’re a loved one of someone with a chronic illness, and you have felt stressed. I think that’s kind of like everyone with a chronic illness because it’s a stressful situation for many of us, you know, wondering what does it mean for your future, can I handle this, how can I handle this; or maybe you’ve been overwhelmed, like found yourself sitting in front of a computer with 37 tabs open. These are not things I’ve personally been through of course… No, I’m just kidding. These are definitely from my own life, you know, collapsing into a pile of exhaustion trying to figure out on your own how to navigate this new situation you’re in with your condition. 

Usually, you know, that’s the first thing we do, right? You get home from the doctor’s office, and you look up all these things. And that’s good to try to find good information, but it can be overwhelming because often there’s a lot of conflicting information. Also, you’re in the right place if you’ve ever just kind of felt alone in trying to figure out how to navigate this all on your own. So, hopefully even just in one hour, I can provide some support. Some of what I’m going to talk about today is probably a little more what would be considered like advanced concepts. Very kind of not intuitive things that might be hard to totally come to terms with in an hour. I certainly took a long time to learn some of these, but it’s like planting seeds in your mind, hopefully. 

[Introduction & definition of terms: What is stress, pain versus suffering, statistics on mental health and arthritis, common causes of stress with chronic illness]

But we’re going to define the terms, talk about the relationship between stress and chronic illness, and then talk about the three strategies that I find the most helpful. It’s important to manage stress so that we can actually decrease inflammation. Stress drives more inflammation. So, if you have an inflammatory condition like rheumatoid arthritis, which is what I have, or any autoimmune disease, or many chronic illnesses get worse with inflammation, so it’s good to manage stress so that we can decrease inflammation because it’s kind of a vicious cycle. You get stressed, you get more inflammation, feel worse physically, then you’re more stressed. It also frees up your mental energy to do other things that are important to you. So, also, when you have better stress management, hopefully, your relationships, and wellbeing, and quality of life improve. And then, you know, my ultimate goal, at least in my life, is trying to live a life I love despite my chronic illnesses. I don’t know whether it’s going to be cured in my lifetime. So, I want to do the best I can to persevere, you know, despite it. 

And so, quick, quick overview because you guys can find on YouTube or Instagram my story, I share it all the time. But I’ve had rheumatoid arthritis for 18 years since I was 21 years old, and I’ve been an occupational therapist for eight years. I like to call us kind of life skills experts or life hack experts. So, we’re often confused with physical therapists, but we really focus on the minutiae of day-to-day life, how can you function in your unique environment and context, which I find really, really fascinating. And we also are trained in the mental, you know, mental health and physical disabilities, that’s actually in our scope of practice. So, that really separates us from similar professionals like physical therapists. With that said, we work very closely with physical therapists. And I love, you know, I love my physical therapists. And I’m also a mom. I was going to say, mom? Was I going to talk about my mom? Oh, wait, no, I’m a mom. So, I have a seven-year-old child. And that’s something that people ask me about sometimes, you know, what’s it like being a mom with chronic illness. So, that’s not really what the topic of today is, but I’m happy to expand on that if people have questions. And then, again, as I mentioned earlier, I founded Arthritis Life to kind of fill some gaps I saw in just general patient education opportunities. It just seemed to be that people were just kind of left on their own, you know. “Here’s this diagnosis, go figure it out.” And there are some great non-profits. You know, I’m a big volunteer with the Arthritis Foundation and CreakyJoints. There’s a lot of people that are trying to fill this gap, and I just started wanting to get, you know, make my own little unique stamp on the world. And then I created the Rheumatoid Arthritis Roadmap, which is an online course for people to learn how to navigate life with rheumatoid arthritis. And then I’ve just debuted Rheum to THRIVE, which is an ongoing membership program. The Roadmap is a self-paced course at this point, and then the Rheum to THRIVE is like an ongoing monthly membership, where we can have access to like continuing education, like little trainings like this, but more customized in a small group to the people’s needs. So, I’m really excited. Camille is here, she’s in the group. 

So, let’s move on, though, ’cause you guys are like, okay, tell me about stress. So, really quickly, what is stress? We tend to think kind of like, “Oh, stress is only a bad thing.” But technically, stress is kind of a neutral thing, because it is our response to a perceived threat. And we need to respond to threats for our survival, right? So, when we feel stress, it enacts our fight or flight nervous system, so we get ready to literally fight the threat. And our brain kind of thinks of it as like a tiger, or a mastodon, or whatever, from our survival instincts. So, that’s good if we have a real threat. In the short term, it helps us adapt. But in the long term, if you have chronic stress, and it’s actually from kind of additional mental worries you have that are not actually from a true threat to your survival, chronic stress is bad for our health, particularly the immune system. 

And if knowing that feels more stressful to you, I’m sorry. It is kind of a conundrum. You’re like, you have to confront the fact that stress is not good for you. And then you’re like, okay, but now I’m stressed about my stress. But it’s okay. It’s a cycle we all go through, you know, your mind is an alarm, it keeps trying to keep you safe. Your brain has heart is wired towards paying more attention to negative things because those are the things that are most likely to threaten your survival. And again, if it’s a tiger, you want your brain to warn you, you don’t want your brain to be like, “I am at peace and at one with the Universe,” when there’s like a tiger about to, you know, attack you. You do need that alarm system to get you stressed and moving. But the downside is if we are chronically in that nervous system — oh, we have one nervous system — but if we’re chronically in that fight or flight it is, again, not good for our body. 

So, we also have the separate part of the nervous system, the rest and digest parasympathetic nervous system that helps us to literally get ready to — it’s the opposite of fight or flight — get ready to rest and digest your food. And so, yeah, our brains just can’t sustain fight or flight all the time. So, things like mindfulness and relaxation strategies can help us enact that rest and digest. Yeah, so now there’s more awareness of there’s fight, flight, freeze, and fawn. So, that’s true. The freeze is definitely one that I felt with overwhelm. You’re kind of like, “Ahh, there’s all these things I need to do and I’m stressed,” but I’m like, I’m frozen, I can’t do anything. So, this is definitely just a very brief overview. There’s a lot more to it. 

But before we move on to the techniques, I also wanted to differentiate pain from suffering. It’s interesting that, you know, many people — at the least in the world that I inhabit with occupational therapists — separate physical sensation of pain from suffering. Suffering is kind of like our mental response to the pain and pain is the physical sensation. So, if my shoulder’s sore, that’s the pain, but the suffering is from all my thoughts around that. Like, “Does this mean my medications aren’t working?”, “I can’t handle it”, “I’m so disappointed”, “What am I going to do?” So, I think it’s helpful to separate pain from suffering. And just know that, you know, if you’re struggling, you’re not alone. This is just for arthritis, but these are similar statistics across chronic illnesses. You know, 66% of people with arthritis felt anxious in the last seven days, 32% have a history of depression — and those are higher than average population — 19% have frequent mental distress, 92% say that pain interferes with our day-to-day activities, and people who have depression or anxiety have poor outcomes. Now, chicken or egg, right? If you’re having poor outcomes, you probably will be stressed or anxious about that, or depressed about that. So, I don’t know where the causality lays in that, but realizing that, just know that these are statistics that I put here at the bottom. And if you want a copy of this, you can email me, info@myarthritislife.net, and I’m happy to give you a copy so you can have it. I don’t need to probably explain too much examples, because many of you are living this right now. 

But just some of the ones that stood out to me when talking to people over the last few years, you know, ‘Grieving the life I thought I would have’, ‘Staying organized with providers’, ‘Feeling guilty about your medications’, and, you know, ‘Feeling isolated from others in your life’. They may — or, you know, sometimes it feels like people don’t understand, but it can also feel like people misunderstand. And that’s also stressful, right? You’re like, well, you tried to understand, but you actually didn’t understand correctly. And you’re just thinking that this is actually less serious than it actually is, you know. ‘Paying attention to your own needs’ and ‘Balancing your needs with the needs of the loved ones in your life’. And this one really resonates with me; I feel like I could have written this one. It kind of can threaten your identity, right? Because it’s like, you go from ‘I’m a person who takes care of others’ or ‘I’m the high energy person’ to now, I’m fatigued. And Camille says, “Yeah, my body hurts too.” People say like, “Oh, yeah, I hurt my leg the other day.” And it’s like, this is not the same.

So, um, you know, for me, the biggest ones are the unknowns, like what’s going to happen, especially when I became of like, childbearing age, and I want to have a baby and it was like, oh, like, am I gonna be able to do this? Before I say anything else about how I’ve learned how to manage my stress, please know that I have gone to therapy with a psychologist and a psychiatrist. And so, I’m a huge proponent of therapy. There’s no shame in getting one-on-one individualized therapy. That is super, super helpful and I wish that I had not waited so long. So, that’s my little spiel. I remember like — normalize therapy! — last time someone said, “Stop talking about therapy so much,” after the webinar. And I was like, “Well, I need to help normalize this, so others don’t do—” I kept thinking, “Oh, it’s not that bad. It’s not that bad.” I mean, even when I went to therapy, I was like, “It’s not that bad.” And I remember that one of the most powerful points of therapy was when my therapist said, “You’ve been through a lot,” and I was like, “Oh. Well, she’s a professional. And she thinks I’ve been through a lot. So, I guess officially, I have been through a lot,” but I kept minimizing it to myself. So, yeah, it’s very validating. Okay, here are just some tools. Again, I wish that, you know, we had like nine hours to go through everything, I could tell you everything I learned in therapy. No, the thing about therapy is it’s individualized to you. So, the therapy that worked for me may not work for you.

[Cognitive behavior therapy for “thinking problems”: How “Catching ANTs” is a helpful tool for “thinking problems” (when your stress is caused by maladaptive thinking patterns)]

Here, I have lots of acronyms here today. So, ANTs stands — for those of you who’ve been through cognitive behavior therapy, you might have heard of ANTs. They’re Automatic Negative Thoughts. And I made this little chart that I find helpful. I showed it to one of my friends and she was like, “That’s a lot. That’s a big chart.” So, when I’m stressed about something, this is what I do. I think to myself, “Is this a thinking problem?” in the sense like, is this arising — is it possible that I’m thinking about this in a way that could be changed? Like, could I alter how I think about it, and that would make the problem better? So, the ANTs — catching ANTs, Automatic Negative Thoughts — is a thinking problem. It’s when my thoughts are too negative. And so, I need to change how I think about them. And so, that’s what we’re going to talk about now; whereas the others two strategies are going to be about when it’s not a thinking problem, when it’s like, “No, I’m accurately thinking about this situation. And it’s really stressful.” 

So, again, Cognitive Behavioral Therapy, also known as CBT, is very evidence-based for anxiety and depression. And I’m not giving you therapy today, I’m just explaining what I’ve learned a little bit from it as an occupational — I’ve also have done training in this as an occupational therapist, too. So, it just teaches you how your thoughts and your behavior and your feelings slash emotions influence each other so you learn how to be like a detective about your thoughts and figure out, “Is this thought I’m having a true representation of reality or is it a distortion?” If you determine it’s a distortion, then you learn how to reframe it. So, again, they’re — basically ANTs are Automatic Negative Thoughts. They’re inaccurate ways of thinking and, you know, when I started paying attention to the little Automatic Negative Thoughts that came up in my mind, I was surprised because I don’t tend to think of myself as like a really mean or harsh person. But I had realized throughout the day, I have all these little negative thoughts about myself. Like, “Oh, my gosh, you’re so stupid. You forgot that.” 

So, there are actually categories that psychologists have determined four different kinds of negative thoughts or distortions. Filtering is like a distorted filter, so you only pay attention to what’s bad. I think of it as like you have binoculars, and it’s like your whole life is this big picture. And you’re only putting your binoculars or like a flashlight on to the mistakes. So, let’s say, you know, you get a 90% on a test. You’re thinking, “Oh, my gosh, I’m only gonna pay attention to that 10% that I got wrong,” versus the 90% that you got right. Labelling is another similar one, where you kind of label people in a black or white way or label yourself, “I’m stupid,” you know, “All the doctors are mean. The doctors don’t care,” you know. And these are things that it can be comforting to go into that black or white thinking. And when we’re anxious or stressed, we tend to adopt that black or white thinking. 

So, what we’re talking about is, to reiterate, ANTs are Automatic Negative Thoughts. And a couple examples of them are the filtering, only filtering towards things that are a certain way. Like your brain is thinking, “Everything is this way,” when, really, you’re actually only looking at the negative; and then labelling people on a black or white way. Another one is catastrophizing, but I’m not going to talk about that, because it’s really, really complicated with respect to chronic pain, and a lot of people don’t believe it’s appropriate to apply to chronic pain. So, here’s an example, a very classic cognitive behavior therapy exercise. Where what you do is you look at your situation, what was the situation, what were the thoughts you had, what were the feelings you had about that, what’s the behavior you took, and then what is an alternative. So, let’s say the example — this is a kind of classic chronic illness one — is, “Oh, I forgot to take my meds.” And then the thought is, “I’m stupid,” — that’s a labelling. “I always forget,” — that’s filtering, where you’re only filtering to remember the situations that you did forget, versus the ones where, you know, let’s say, for the last 30 days, you took your medicine 29 days, but you forgot one day, and then you’re only paying attention to the day you forgot. Your feelings would be frustration, anger, disappointment, and then your behavior is irritability. I’m saying this is an example from my life. You know, getting in a bad mood, and then behaving more short or irritable towards your family.

And then what’s an alternative is you could actually have compassion for yourself. And also, you could reframe. So, reframing would be, the situation is the same. We don’t change the situation, right? In this case, it happened already. You can’t not have forgotten your meds. It’s in the past. So, what you can change is your thoughts and your feelings about that. So, you can say, “You know, I’m human. It happens. People make mistakes, people forget things.” And, you know, I allow myself on that moment to acknowledge that this is just one day, just one time, you know, tomorrow I can do better. And then, when I look at it that way, when I reframe it, I feel more at peace and more compassionate about myself, and then my behavior actually reflects my values. That’s the person I want to be, right? I want to be a compassionate person, not only to others, but also to myself. Self-forgiveness is very important. And we tend to get really hard on ourselves, many of us with these chronic illnesses. I don’t know why, but a lot of us are perfectionists. I find it easier to be compassionate to others than my own self. I don’t know if anyone else is the same way. But, you know, if you’ve ever heard that phrase, “Talk to yourself like you would talk to a close friend,” that is good advice. 

So, again, this is something that you can go through, you know, slower and more carefully with a therapist. This is just introducing you to the idea today. And if this resonates, you can try to kind of take it and run with it. And I, again — so, when is this helpful? This is helpful when I’m jumping to conclusions. You know, if one friend invalidates my illness, and I jumped to the conclusion, “No one is ever going to understand me. No one ever is going to get this,” you know, that is when you might want to say, “Wait a minute, let’s take a detective moment here. Let’s see, is that actually accurate? Or is that an Automatic Negative Thought?” You know, is it really — what proof do I have? That’s another thing that you do with Cognitive Behavioral Therapy, is you learn to gather evidence. And they do this with children too. It’s a really great exercise. 

There’s some studies at a University of Pennsylvania where they study positive psychology and resilience, which is so cool, right? For years, psychologists just studied, you know, all the ways that the human mind could have problems or issues, and then all of a sudden, this Martin Seligman in the University of Pennsylvania is like, well, what about resilience? What about people who go through terrible things and actually come out the other end of it, what are they doing? And they found out that there’s this thing called explanatory style — which I didn’t even put in here, now I’m adding even more — which is, do you tend to think of positive things as permanent and pervasive, or do you tend to think of negative things as permanent and pervasive. And people with an optimistic explanatory style are the ones that are least likely to get depressed, and they’re the ones that think if it’s a mistake, “Oh, it’s just temporary, just one time.” Whereas the people with depressive explanatory style, if they make one mistake, they perseverate on that. And it’s like, “Oh, my gosh, this mistake is lasting, it’s going to have a big impact.” 

And so, you can learn how to reframe, using an understanding of explanatory style. But, you know, if I’m saying something, “Nothing I do will ever make a difference in how my disease affects my life,” you know, I’m doomed. The key is that when you have these statements that are permanent, like ‘nothing’, ‘everything’, or that are really, really global and black and white, that’s usually a sign that you’re maybe over exaggerating your thoughts. So, you know, it might be a distortion, so this probably is a thinking problem. And you could really use your reframing to say — to validate yourself to say, “It feels like nothing I’m doing is affecting how my disease affects my life, but the future is unknown. I could still try to learn tools to live better with this.” Okay, the thing that I want to caution people about with CBT and why I think you need more tools in your toolbox is that sometimes people become — again, the perfectionistic tendencies of some of us, myself included, it can get you into this kind of thought loop where you’re constantly second guessing your judgments like, “Oh, is it accurate? Is it not?” And then you just end up kind of getting into this struggle cycle. 

And sometimes it’s not a thinking problem. That’s where catastrophizing has become very controversial in the pain community. Because if you’re saying that your pain is a big deal in your life, it is a big deal in your life. You’re not thinking about it wrong, you know. So, who is — if a doctor tells you, “You’re catastrophizing because you’re thinking too much,” so that’s why I think ACT is helpful; what I’m going to say next, these next two tools, mindfulness and ACT, Acceptance and Commitment Therapy, has been really helpful. But I think, again, all of these pieces are useful. I do think that sometimes we have inaccurate thoughts, you know, and distortions, and it’s very helpful to reframe them. But I think that that’s only one piece of the picture here. 

So, okay, if it’s not a thinking problem with the question — so, thinking problems, go over here to the CBT stuff. If it’s not a thinking problem, we say, “Is it a solvable problem or a persistent problem?” And weirdly enough, this technique is part of — it’s consistent with Acceptance and Commitment Therapy, what am I talking about, but it actually also comes out of marriage research from Dr. John Gottman in Seattle. I don’t know if you’ve ever heard of him, he can predict, by watching a couple talk for 10 minutes, he can predict with like 90% accuracy whether they’re going to be divorced in the next 10 years because of how they relate to each other. But anyway, so, one of the things that couples in resilient and happy marriages do is that they separate solvable from persistent or perpetual problems. 

So, solvable problems are ones we can actually do something about. Let’s say, you know, you woke up in the morning and your hand is just throbbing. That can be partially a solvable problem. You take a hot shower just to release the stiffness, or you take a pain medication, or take your regular medications, put on a compression glove. But sometimes we have problems that are persistent, that we’ve done everything we can and they still persist. So, what can we do? That’s what we’re going to talk about next.

[Mindfulness & “perpetual problems” Cheryl explains how true mindfulness of the present moment (even uncomfortable parts of the present) can help cope with perpetual problems from chronic illness]

So, mindfulness. Okay, mindfulness was hard for me to learn, but it is about keeping your attention in the present moment without judging it. And, you know, learning to be where you are without trying to change. And so, why is this so hard? The very basic answer is that this can be hard if the present moment is uncomfortable, why would you want to connect deeply with the present moment, right? I don’t know if any of you have been like, “Why would I want to be present right now? I don’t like the present moment. I want to change it and fix it.” And I think, again, it’s because pain is telling us to find a solution. I know when my therapist first started trying to tell me this, I’m like, “Eh, that’s like for able-bodied people. That is not for people who are living in pain.” However, the fact is, this can be very helpful if you have already done everything in your control, what can you do now? It actually can help us basically accept that sometimes this is the moment that we have, and it relieves some of the some of the pressure we can put on ourselves to fix an unsolvable problem. 

So, okay, so there’s two choices to where you can put your energy in general. If you have a problem, let’s say it’s pain, you have two choices. You can try to make the problem go away, or you can work around it and try to function despite the problem. Now, I think in most of our daily lives, we’re doing a mixture of both, right? You’re not like — it’s not a black or white, again, like earlier, we don’t need to be totally black or white. But, you know, when we have pain, we try, we have methods to reduce it the best we can. And we can attempt to cure it, or heal it, or make it go away. But, again, the thing is that those are what our brains usually are biased towards looking at, but at a certain point for some of us — and it’s kind of like, it’s like the elephant in the room — but at a certain point, there is nothing more that can be done. And so, what’s available then? What can we do then? We can still do something. We can work around it using life hacks for pain or activity pacing for fatigue, to work around it and function despite it. So, what can I still do now, despite my condition? That can be actually an empowering thing long term, because it means that you can still do something, even if you can’t make the pain go away. 

Okay, so, if the problem is not pain itself, but the stress that we’re having around how our health and illness affects our life, I like connecting to the present moment because it’s a little bit of a workaround, because it’s saying, “Well, my stress is all about the future.” Because that’s — because a lot of that uncertainty, all of you who said uncertainty, uncertainty is really about the future. It’s like, I don’t have certainty of what’s going to happen, is this next medication going to work. And I have that stress myself, personally. I’m on my third biologic, and I don’t know the next one, and when it’s going to work. The first one worked great, the second one worked great until it didn’t. And then the third — also, the first one worked great till it didn’t. The third one works okay. And then it’s eventually not going to work, like most of them. So, in my lifetime, I mean, statistically, it most likely won’t work. 

So, I think the part one is being present with that thought, and validating it in my mind, and saying, “That is — that’s a thought,” like that is — is that something that that I need to rush and stress to fix it right now? Or can I actually learn how to tolerate that thought, because it’s probably — it’s not solvable. It’s not a solvable problem, because the future is unknown. So, it also reduces the stress, again, because it says, “Okay, well, I’m not trying to — I’m not trying to go into this like cycle of solving an unsolvable problem.” So, again, stress, you know, and anxiety make us seek control, because we get this illusion that if we just can get control, we can get out of the — we can solve the problem. But mindfulness is like, what is actually going on right now and what is possible right now. 

Another thing that I’m not even talking about, but it’s a big, major part of mindfulness practice for a lot of people with chronic illness is not just focusing on the present like cognitively, but taking a moment to center yourself and taking a deep, slow breath. That can be really effective in helping calm your nervous system, get it into that rest and digest mode so you’re out of that kind of fight or flight. Because, again, unfortunately, it just might not be a solvable problem. So, the fighter or flight, it’s like, you’re not too useful here. Someone else made a Star Wars reference. Okay, so that’s partially helpful, right? At least for me it is. But sometimes just the mindfulness is not enough when I’m really, really struggling. So, this is saying, “Okay, is it solvable or persistent? It’s a persistent problem,” and then you, you know, you try to use your tools, and you’re still stressed. Okay.

[Acceptance and Commitment Therapy (ACT) Cheryl explains how acceptance and commitment therapy helps her devote energy towards present possibilities rather than wasting time trying to solve unsolvable problems (which can lead to unnecessary stress).]

Now, we need to do our coping with ACT, which is Acceptance and Commitment Therapy. So, ACT has been really, really helpful. Those of you who listen to my podcast are like, “Oh my gosh, is she ever gonna stop talking about ACT?” It stands for Acceptance and Commitment Therapy. So, it’s accepting your thoughts and feelings and your present state exactly as it is. Then, not just sitting there and being like, “I accept it. Okay. Like, what do I do now?” You accept it, then you connect with your values, and then you take effective action. Okay, so I’m gonna let Russ Harris here, say it himself. Or, well, I’ll say in his words, “First, you make room for your feelings. Allow them to be exactly as they are. Then you ask, ‘What can I do right now that is truly meaningful and important?’ And this is different from asking, ‘How can I feel better?’ Once you’ve identified an activity you truly value, you go ahead and take action.” 

I think this is the kind — it’s like a very — it’s a pivot from how we tend to think about it, right? Because those of us who live in a culture like the United States that’s constantly like, “Be happy. Be happy. All you need to do is do this and you’re going to be happy,” it makes you think that the goal is or that a realistic idea is to be able to be happy all the time, or feel better. “I have a bad feeling and I need to feel better.” And this is a very normal — it’s not just a cultural thing. This is a very, again, when we talked about with pain, pain makes you want to solve the problem and feel better. But for me, additionally, that adds an element of stress, because now you’re like, “Now I have to feel better. I have to feel better, before I can live a good life.” And what ACT has taught me is that I can still live a good life while feeling physically not great. And that’s actually, to me, that’s actually more empowering. Now, again, if I had this solution that would like cure everyone’s illness, if all we had to do was like, do a certain diet or do a certain supplement, I would choose that, right. Like, I would choose to eliminate my rheumatoid arthritis if I could. But that’s not possible for everyone right now. Some people do believe that they have that solution, and it’s like, more power to you. And if you find one that works for you, that’s amazing. Do that. But for some of us, we’ve done everything we can, and what can we do now? We still have some control. We actually still have some power to take action. 

So, that’s what I’m going to hopefully — it’s very hard to explain this in like 20 minutes. But what happens is earlier, we were talking about stressing about stressing, right? So, one of the things I’ve learned about in ACT is you can’t change your feelings, but you can change how you feel about your feelings. If I feel this person’s feeling anxiety, and then all of a sudden, they feel anxiety about anxiety, they feel sad that they’re anxious, they feel angry and frustrated and guilty. Oh, my gosh — and this is a thought I’ve totally had — “I’ve gone to therapy, I teach these people how to do this, and I still can’t figure it out. Why is this so hard? What’s wrong with me? Why can’t I figure out my anxiety?” That’s all these thoughts that are swirling around. “I need to make this go away. I need to just — let me just go, let me just try to be mindful and meditate for 10 minutes and see if it goes away.” 

The problem is when meditation and mindfulness are used as a strategy to feel better, it’s counter-productive. Because the point is to connect with exactly what you’re feeling, and learn that that you can survive that, you can tolerate that. And that’s part of being human. You know, if you’re going to be a human being, and in life, you’re going to be feeling feelings, and they’re not all going to be happy, perfect feelings all the time. Relieving yourself of the burden of always feeling only good, only happy feelings, it actually makes you happier. But you can’t get there if I tried to be happy.

It’s a very, very interesting, intriguing process. It’s very paradoxical. So, instead of saying, “I’m anxious. I’m anxious about being anxious, bla, bla,” I’m cycling here in this tornado of secondary feelings, you just say, “Here’s anxiety. There it is. I don’t like it. But I’m not necessarily going to struggle with it.” 

And the metaphor that I really liked that I learned from ACT is called, your feelings and emotions are like passengers on a bus. So, you’re the driver, and you’re driving, let’s say, where you want to go. You know, where I’m trying to go is a full and meaningful life despite my health condition, the best I can possibly do, right? So, I’m going to have all these different passengers’ thoughts and emotions on the bus. There’s the freaking out one that’s like, “You can’t do this, you’re going too fast. Pull over. We need to take a break,” or there’s the there’s the mad one that’s like, “Who are you to think you can do that?” So, the negative one, and then there’s the — there’s so many different ones that are shouting things to you. They’re shouting, “Speed up, slow down,” and a lot of times we are at the whim of our emotions, where we think, “Oh, my gosh, I have to listen to that. Like, that’s — it’s telling me what to do.” 

When, really, we can just acknowledge them. We don’t have to — I think with the way meditation and mindfulness are kind of packaged a lot of times, it’s like, if you just are mindful, if you just, you know, breathe 10 times, all your negative thoughts are gonna go away. No. The way that this works, for me at least, is you say, “I acknowledge you. Like, you’re on this bus. I could exist alongside you, and allow you to be there, and you can all freak out but I know where I’m going. I don’t need to pay a lot of attention to you. I don’t need to struggle with you. You’re there.” And it’s a really, really freeing feeling. 

Tell is saying, “I set myself up for failure.” Yes, you set yourself up for failure by having the goal of feeling better. “A lot of times, though, doing something important or meaningful does help me feel better.” Exactly. Yeah. So, I’m talking about like the thinking strategy part of this. But the doing — the doing is where we often get a lot of impact from this strategy. Where you say, “What can I do? What can I still do that’s meaningful?” you know, and we can still grieve alongside that, you know. Like, I still have dreams of playing soccer. Right now, I can’t play soccer anymore, or it’s not wise for me to because I hurt my neck in a car accident, in addition to the rheumatoid arthritis. And so, but I still have dreams of playing it and when I watch people playing, you know, going about and doing things I can’t do, it’s okay to have feelings. At least, I allow myself to have feelings like, “Man, I wish I could do that.” Yeah, like, I’m sad. I’m sad that I can’t do that anymore. But instead of struggling with that, like, “Oh, I need to make — sadness is bad. I need to make my sadness go away,” I just say, “Oh, yeah. I’m a human being having a human emotion. That’s okay.” 

Krista did a great TikTok video where everyone — you know, she’s dancing. She’s been doing dancing videos, you know, prolifically, and she has rheumatoid arthritis. And people were saying, “Oh, my gosh, you know, I can’t do what you’re doing.” And she showed a video where she showed all the things she still can’t do. The people didn’t even realize like she can’t — she can’t, at the time couldn’t completely unbend her elbows or jump. But she was still doing everything she still can do. She can move her core, she can move her shoulders, you know. So, doing what you still can. Feelings often are like beach — a beach ball. So, if you imagine that you’re in the water, and this beach ball pops up. And you’re like, “I want to make this go away.” You can keep pushing it and struggling with it, pushing it down under the water. And guess what, it keeps popping back up. We don’t have to like them, but we can allow them to be there so we can get on with what truly matters in our life, okay. 

I think that the acceptance helps me separate sometimes the solvable from the persistent problems, right. So, the solvable problem I kind of mentioned earlier could be like, my joints are stiff. And, okay, there is a solution to that. Take a shower, you know, warmth, feels better. Persistent arthritis problems are going to be the unknowns, you know, how is this going to progress in the future? When will I find a medication that works? Can I trust that people around me will always understand, you know, that those are perpetual problems? And I don’t want to spend a lot of time solving them because they’re not solvable. So, I free myself from the burden of trying to solve unsolvable problems. Again, it’s this weird — I know some of you guys are saying you love it, so I guess I’m explaining it okay. Those of you who maybe — or maybe there’s a silent majority who’s like, “What is wrong with her?” But, um, you know, again, if we approach all the problems in our lives like they’re solvable, we’re gonna waste a lot of time. 

And, you know, I actually think parenting can be a good analogy here, right? Like a two-year-old. If you watch a two-year-old, you know, you’re not gonna make a goal for them to like, feel 100% self-regulated, and have no tantrums, and feel peaceful and happy all the time. Like we accept, right? We accept that toddlers are going to have emotions, and we do the best we can to support them, to function through them. But I think when we become adults, we have this very unrealistic idea that we’re just, if we just do the right things, we’re going to avoid all suffering and all negative things. And that’s just, yeah, it reinforces this idea that we have to have a perfect life to be happy. And that’s not true. What would what could you do with that mental energy if you could accept that some problems are unsolvable? So, I forgot to say earlier, acceptance is very different from giving up or resignation. So, in this, in the case of ACT, acceptance literally means taking what’s offered in the present moment. I still have hope for a better future. I still — I don’t say that, “Okay, because my pain is bad today, it’s always gonna be bad. I give up.” It just means that you are able to connect with and function during the present.

Okay, so here’s a couple more uncertainty — I mean, you all had — you all already gave some good examples, you know. But, you know, what are your limits for the week? How do you gauge your own pain and fatigue levels, worrying about what you’re gonna be able to do in the future? Now, with these pain and fatigue levels, there is some work you can do about like symptom tracking and figuring out your own patterns. So, again, it’s a — there’s a balancing act between that solving parts of the problem and then accepting the problem. Because I can say from my own experience, you know, I have a huge amount of tools in my toolbox for pain and fatigue, but sometimes I joke, like, a butterfly flapped its wings in Africa and all of a sudden I’m having like a huge fatigue day. Like, we don’t always know. We can learn as much as we can. Like my old soccer coach used to say, “Control the controllable,” right. We can control our actions on the soccer field or football field. We can’t control what the referee is going to say, what they’re going to do. I always find it funny watching soccer, football. You know, when people are like arguing with the referee, when has that ever worked, you know? So, when you’re trying to invalidate your own emotions, it’s kind of like you’re trying to argue with the referee. It’s just not gonna work. 

So, you know, being able to plan for the future, having uncertainty. This is a huge one, which route to take, especially when you’re first diagnosed. Should I do AIP, autoimmune protocol, should I do this? Should I do that? Everyone’s telling me different things. I’m supposed to go vegan. No, you’re supposed to go keto and eat a bunch of meat, but also plants. But then people are like, no, you need to do Mediterranean. You’re like, ahh, this is so overwhelming! So, okay, I guess I’ve already given it away. But yeah, all we know for sure is it’s unpredictable. So, do you think uncertainty is a solvable or perpetual problem? Uncertainty is going to be a perpetual problem, right? That’s why I think the mindfulness and connecting to the present is helpful because that’s — on this like philosophical level and interestingly, Acceptance and Commitment Therapy, it’s actually a Cognitive Behavioral Therapy plus mindfulness. So, some people think of it as like an arm of CBT, because you are examining your thoughts, and you’re examining the fact that you’re having thoughts. So, that’s the cognitive part. And then you’re having behavior, you know, consistent with your values. And that’s like behavior from Cognitive Behavioral Therapy. But it’s different because I feel like with CBT, I just struggle with my thoughts sometimes, if I’m trying to apply CBT, Cognitive Behavioral Therapy, to a perpetual problem that’s not caused by my maladaptive thought patterns. 

So, I said this in my last webinar, but, you know, I try to think about like these three different doors. Door Three — and hey, we all have gone through most of these, okay — so, Door Three is Doom and Gloom, “It’s never going to get better. There’s no hope. I shouldn’t try.” The problem with that is that it doesn’t help you engage in your life. And it’s not — it’s not knowable, whether the future is going to be bad. Positive Thinking is Door Number One. It’s the one I want to go in. It’s like, “It will get better. I will be able to control my future if I just figure out how.” It is comforting, but it ultimately is an illusion for many of us, there are exceptions. But Number Two is the Accepting Uncertainty. This is the one I’ve done a lot of work on, again, in one hour. It’s hard to get there, but, “It might get better, it might get worse. I don’t know. I can still have a meaningful life despite that,” and that’s the way that I’ve learned. So, again, it’s okay, if your brain — my brain is biased towards this door. Like, I’m always gonna want sunshine and rainbows and that’s just my personality. Some of you might be wired more towards like, this is kind of — I’m more anxious and anxious people tend to kind of like hyper-fixate sometimes on like making things better. And sometimes people who have a depressive kind of wiring in their brain are much more wired towards looking at the doom and gloom side. But accepting uncertainty, it’s very freeing if you can get there. 

So, you know, again, one of my goals — yeah, it feels like Goldilocks. Moderation is key. You know, and this is — I included this because someone recently told me it was a really powerful quote for them. You know, I kept waiting after Charlie was born, when I was having a massive flare up, you know, “We’ll just figure it out. When I get back to 100%, we’re going to figure it out.” And then, you know, I realized I missed — I’m focused so much on figuring it out my disease and making myself feel better, that I was missing out on my chance. This was my chance to be his mom, you know. I spent the whole first year on this kind of waiting pattern and just kind of focusing so much in the future, I wasn’t really very present with him. So, what can I gain from accepting it really as it is, right, rather than anxiously trying to tweak things and control them to achieve this elusive concept of feeling better in the future? What’s possible now? We don’t know what’s going to happen in the future. We literally don’t. No one can tell you. I mean, past performance predicts future performance. But it’s just still a prediction. There’s no knowns, right, for the future. 

[Concluding thoughts]

So, again, thriving despite my symptoms, that has been the missing ingredient for me, and in really getting to the core of what stresses us out, because I think the stress comes — like people talked about earlier — it comes from these unknowns. And this is really almost like an ableist idea that you have to be healthy to have a good life. You have to be able-bodied, and make your disease go away, before you can have a good life. Well, what if you can have a good life and try the best you can with what is actually possibly possible to you right now? This is the only reality that’s for sure, is the present, right. So, you know, what I like about this is, I’m not wasting energy on trying to solve unsolvable problems anymore. Internalized ableism, it is real. And I really think it’s really beneficial to free yourself from that. It doesn’t mean like — my life would be easier without a doubt. If I didn’t have RA, my life would be easier looking back, you know, but doesn’t mean that I have no possibilities right now. Unless you’re in a coma, you have choices, you have possibilities. That’s not to shame yourself to say, “Oh, my gosh, yeah, it could be so much worse. Why am I having such a hard time?” No, it’s hard, you know. Validate that to yourself. But know that there — is you can gain so much from focusing on what’s still possible. 

I don’t want to make it seem easy. It’s not easy. It’s taken me many hours. So, if you’re confused, that’s okay. But just to recap, so we have the catching ANTs; that’s when it’s a thinking problem. Catching your Automatic Negative Thoughts and reframing them, being present, which is an ACT-ing and adapting, which are the ones that help with the perpetual or persistent problem. What I’ve just been talking about is all these inner world parts of my overall toolbox for managing my life with rheumatoid arthritis, but I’m, you know, the overall toolbox includes all these other things as well that really, really helped me live this full life despite rheumatoid arthritis. And so, again, these are things like focusing on what I still can do, what activities and hobbies are possible, how can I manage the CEO side, you know, being the CEO of my care team, my relationship, having healthy habits, and knowing I have a bunch of tools for pain and fatigue. 

So, I’ve been using this word ‘thrive’ a lot, because it’s like kind of my mantra right now, is can I thrive despite. Can I thrive despite what’s going on? Again, it’s harder, right? It’s harder, but it helps when there’s perpetual problems. So, I am going to transition to talking a little bit more about what this — and some of you already know because you’ve already joined, because I couldn’t wait. But um, you know, you can do this on your own, you could put together your own toolbox with the resources that are out there. Or, you could do it with support. So, I think that the support way is the more streamlined, and efficient, and fun way. I actually just started this membership program called Rheum to THRIVE, get it? Because we’re thriving, and we have rheumatic disease. It’s open to anyone with any chronic illness though. And every month, we’re going to focus on a different letter of THRIVE, like tools for pain and fatigue, or those executive functioning in the different month, and I’ll do three trainings, either by me or a guest speaker, a guest expert. And then we’ll also have support and connection during our live calls, and then a private online community. And this is just for people who want that extra support. And the people who do, you know, end up being able to thrive, they’re usually are the people that are devoting time to managing their conditions. I think it’s very helpful and the testimonials have been really amazing from the, you know, Stephanie had a great testimonial. You know, she said my guidance helped her get insight into the new way of living and, you know, non-judgmental. I’m very open to whatever path people are taking, you know, with their health. I’m just really focusing on the practical everyday tools and strategies. And, you know, even people who’ve had it for a long time; Christina had had rheumatoid arthritis for 17 years when she took that support program. She said that it was very helpful even for a seasoned patient. So, it’s hard for people to understand there really is a value in just being surrounded with like a community of people who just understand.

[Ending music]

Thank you so much for listening to another episode of the Arthritis Life podcast. This episode is brought to you by the Rheumatoid Arthritis Roadmap, an online course that I created from scratch to help people live a full life with rheumatoid arthritis, from social and emotional aspects of coping with rheumatoid arthritis, to simple physical strategies you can use every day to manage things like pain and fatigue. You can find out more on my website, myarthritislife.net, where I also have lots of free educational resources, videos, and more.