Transforming Your Mental Health Journey with MS

Transforming Your Mental Health Journey with MS

Episode 179 – Podcast Transcript

[(00:25)] Stephanie Buxhoeveden: Welcome to the Can Do MS podcast. I’m your host Stephanie Buxhoeveden. I live with MS, and I’m also a clinician and MS researcher. Today I’m excited to welcome our guest neuropsychologist, Megan Beyer, who’s giving us explanations of different therapies and practical tools to help you better understand how these therapeutic approaches can transform your mental health journey. Welcome, Megan.

[(00:46)] Megan Beyer: I’m so excited to be here. Thank you for having me.

[(00:48)] Stephanie: Absolutely. Let’s kick off the conversation by talking about something called acceptance and commitment therapy and how it’s different from cognitive behavioral therapy, which people might be a little bit more familiar with.

[(01:02)] Megan: Right. You know, cognitive behavioral therapy has been around for a while, and I think most people have probably heard about it. Actually. I’ll often get referrals that say, Megan, do CBT with this person. Right? Because, um, many of the physicians that I work with have heard of and learned about cognitive behavioral therapy. It’s been around for many decades. Really, what we’re doing with CBT is we’re looking at our thoughts, our behaviors, and how our body feels, and how those things impact our emotions. Acceptance and commitment therapy is what we call a third wave psychotherapy, um, or, you know, maybe CBT plus, if you will. Um, so I kind of think about it this way. With cognitive behavioral therapy, a lot of times we’re thinking about what our thoughts are, what our behaviorals are, and how they’re impacting our emotions. And many times in CBT, you know, for example, if you had panic disorder, you’re really trying to, um, convince yourself or talk to yourself and, and tell yourself, you know, these thoughts that you’re having aren’t necessarily true.

But with something like MS or other chronic illnesses, chronic pain, you know, things like that, some of the thoughts that we have are actually true. And, um, even if we can modify them a little bit to make them maybe less extreme or less catastrophic, um, acceptance and commitment therapy really says, you know, we’re not really gonna try and change your thoughts. We’re not really gonna try and change the emotions. What we’re going to do is really identify what’s important to you, what your values are, and then really focus your time and your attention on committed action towards your values so that you aren’t necessarily fighting with those thoughts and those emotions. Those emotions and thoughts are going along for the ride. And, um, we’re not putting as much time and energy into them. So, um, for example, if you spill a glass of milk, um, in the morning, you know, you’re getting your, your cereal together and you spill a glass of milk, um, you might have lots of different thoughts depending on your history and who you are as a person and your personality about that.

One person might say, oh, that’s annoying, but I guess I’ll just clean it up. And so they’re probably not gonna have a really big emotional reaction. Another person might go, oh my gosh, this is the worst thing ever. I was already 20 minutes behind and now this is, and it’s gonna cause ants to come in the house. And, you know, you have all those kinds of thoughts, and then you’re gonna have a much bigger emotional reaction, right? Um, another person might think, gosh, I’m so clumsy. How can, you know, I, I’m always spilling things. And so they might have kind of a demoralized response. Another person who has MS might say something like, oh my gosh, is my hand’s not working right? Maybe there’s something going on with my hand, and that’s why I spilled the milk. And so you might have a fear response.

So that same event you can be thought of in lots of different ways. And depending on how we think of it, we can have different reactions to it anywhere from being depressed or demoralized to being anxious to kind of just feeling, you know, semi neutral about the experience. Um, so in CBT, what we’re trying to do is gain more awareness of what those thoughts are and try to modify them in the moment. Um, so you might try to change from, oh my gosh, I’m gonna be so late to, this is only gonna take me a second to clean up. And it’s frustrating, but, you know, I, I can clean it up and I can call my boss and tell them I’m gonna be two minutes late. Right. So you, the idea is to try and shift your thoughts in order to create a less intense reaction.

Um, the behavioral side of it is our physical response to emotions and thoughts. So that might be that you clench your fists because you’re so angry about spilling the milk, or it might be that you throw the rag, um, that you’re trying to clean up with, or you yell at your kids, right? Like, um, because they’re starting to walk through the, the milk or, you know, but, and so our behaviors also can intensify or reduce our emotional response. If we take a deep breath and calmly clean up the milk, we’re probably going to reduce the intensity of the emotion. So what we’re trying to do is both change our behaviors and our thoughts in order to change, um, our emotional response. And the last part of that cycle is our, be our, our, um, physiology. So our heart might start beating really fast. Um, we might feel a little sick to our stomach. Um, we might start sweating, and those sensations can also intensify the experience. And so we also wanna do some things that calm our body down and modify those sensations. So that’s kind of what CBT is in a, in a nutshell. I know I, I went on for quite a while, but, uh, really it’s teaching people how to be aware of those things and then how to modify them.

[(06:09)] Stephanie: I know when I was first diagnosed, my symptoms caused me a lot of anxiety, right? So things I used to do very easily were very difficult, like walking, um, bowel bladder symptoms, vision problems. And I went to my primary care doctor, I said, I think I have an anxiety disorder. I feel anxious all the time. And he said, well, anxiety means that the worry isn’t real, and you’re worried about very valid and true things. And he didn’t give me any advice after that other than to say, uh, it’s not anxiety. And so I sort of felt like stuck as though, um, therapy and cognitive behavioral therapy would be of absolutely no use to me. And I sort of gave up um, because it’s, it’s a lot to deal with, but can you help me understand and, and our listeners understand how ECT could be helpful for people like me in that situation?

[(07:06)] Megan: Sure. So I think generally, um, acceptance and commitment therapy also has this premise that we’re all gonna experience pain in our life. And that pain can come from a lot of different sources. It might be your history, um, a history of trauma. It could be a history of alcohol use in your case, or in the case of the people that I see regularly. A lot of that pain comes from living with a chronic illness, um, either physical or emotional pain. And, um, so we want to kind of recognize that it’s normal to have emotions in response to difficult life events. So if you’re experiencing a new symptom that you never had before, it’s natural and normal to feel uncertain and a little bit worried about that. What we don’t wanna do, and what we often do is that we add a layer of suffering on top of the pain that we’re already experiencing.

So we’re feeling like, if I don’t fix this now, I won’t be able to live my life. You know, those kinds of thoughts. And so with acceptance and commitment therapy, what we’re saying is we’re trying to peel off that layer of suffering and, um, provide some acceptance. And acceptance is a loaded word, but provide some acceptance for that normal reaction to extraordinary life experiences. Um, but again, kind of focus our time and our attention and our behavior towards things that are gonna bring meaning and purpose into your life. And that might look different after you’re diagnosed than it did before, but some of the exploration of act is what is gonna bring meaning and purpose into your life so that you can direct your attention in that way and spend less time directing your attention towards that suffering and, and those frustrating thoughts and emotions.

[(08:50)] Stephanie: Yeah. And that’s such an important point. And I know I had to refrain from thinking, oh, if I go, it’s gonna be miserable, I’m gonna be uncomfortable, I might not be able to do the activity. And then I sort of had to think about what’s more important, accommodating, staying home, avoiding discomfort, or is it more important for me to go on trips with my family and friends, to go to sporting events, to go to concerts, realizing there may be a certain level of discomfort, but the experience and the relationships and the things in life that I want to achieve are worth battling through those uncomfortable times.

[(09:31)] Megan: Exactly. And I, I would just highlight too, that just because you do those things doesn’t mean that there aren’t gonna be times when you wish you had stayed home or that it wasn’t that great of an experience. Um, but when you’re looking at it from like the global perspective, what you’re really saying is that the reason I engaged in that activity is because there was something meaningful behind it. And so if you can kind of give yourself that comfort that, you know, I did this even if it wasn’t, you know, that great of an experience, or I wish I had stayed home, I did it because it was important to me in some way.

[(10:11)] Stephanie: Yeah. I’ve had terrible experiences, right? Like, I have fallen flat on my face in front of lots of people, but I also realize that that one time that the bad thing happened, there were at least 10 other times where it was not as bad as I thought it could have been.

[(10:29)] Megan: Yeah.

[(10:29)] Stephanie: So that’s one example. How else might somebody with MS like implement this acceptance into managing their daily life with MS?

[(10:39)] Megan: You know, I sometimes give an example, uh, around bladder incontinence. Um, I see a lot of people bowel and bladder incontinence is a, a big area of stress and worry for people. Um, and many years ago I met with somebody who, um, had an episode of bladder incontinence in a session with me. And, um, you know, we talked about it afterwards and, you know, he said something that really stuck in my mind, which was, if I worried about the, um, having an episode of bladder incontinence or having an accident in public, I would never go anywhere. And so what I would say is, you know, really, you’re really trying to find values. You’re really trying to find, um, what’s driving you, um, and, and kind of implement that part of it. So kind of what you said already that it’s important for you to have relationships or that you wanted, you know, to focus on those and that that’s one of the reasons that drove you towards that.

Um, you know, I mentioned values, but I think that’s a also a big part of acceptance and commitment therapy, which is, you know, what is important to you and what’s important to you might be different than somebody else. And so doing some exploration of that can be helpful for modifying what you expected in your life. So for example, if you had a vocation that you wanted to go up the ladder in, in that corporate world, and all of a sudden MS is showing up and you’re not quite sure what the future is, doing an exploration of values might help you to think about five other options that you might be able to do with those values attached. Um, that being said, I wanna recognize that even if you come up with those five other solutions, it doesn’t mean there won’t be some grief around the loss of the thing that you hoped for or the future that you had hoped for.

[(12:34)] Stephanie: Yeah. That’s something I still to this day struggle with. And I, I think of it as push or pivot. Do I push myself and do this or do I really truly need to pivot in order to accommodate my disability? And I’m sure you help people work through that all the time.

[(12:51)] Megan: I try. I love that though. That phrase push or pivot is so good. It’s awesome. I might steal that.

[(12:56)] Stephanie: Totally fine. Please do. The other thing I’ve noticed is the more anxious I am, and you brought up bowel and bladder, and I think this is probably the number one thing that makes me anxious, especially if I’m like traveling or away from home or in an environment I don’t know and can’t anticipate, uh, the fear of bound bladder symptoms coming up is so hard to deal with. But then of course, the more you worry about having a episode of bladder incontinence, the more anxious you feel your heart rate goes up, you start getting that like stress response, the more you have to pee. And then, so it’s like this compounding effect. And so how do you deal with it?

[(13:38)] Megan: Yeah. So I think there’s a number of different ways, but I might start with trying to calm your body down, right? Um, so, um, both in CBT and acceptance and commitment therapy, there’s this idea of relaxation strategies or mindfulness meditation. And, um, really what we’re trying to say is like, we, you need to calm your body down so that you can bring your brain and your, your thinking cap back on, right? Um, online. And so anything that you can do to calm yourself down and then start to problem solve to me is a really good starting place.

[(14:15)] Stephanie: Yeah. And to steal one of your phrases, turn the volume down.

[(14:20)] Megan: Yes. Yeah. Turn the volume down on the distress. Yeah, exactly.

[(14:24)] Stephanie: Yeah. Um, the, the truth is we have symptoms and it’s not realistic for everyone with MS to expect to be symptom free day to day, but you can for sure manage your response to the symptoms, manage the anxiety and the catastrophizing that comes along with it to think more logically through that push or pivot decision.

[(14:49)] Megan: Yeah. Right. And I, I think it, it’s really hard because I, I don’t think that there is any magic wand that’s going to make these challenges go away. Um, and that’s one of the hardest things that I come across when I’m working with people is that there’s this sort of idea that, you know, people just want to make it all go away so that life can get easy again. And I totally respect and understand that. And at the same time, I think, um, we wanna figure out how can I problem solve this so that you can live as, as much of a full life as is possible.

[(15:27)] Stephanie: Yeah. I, I think it’s important to have tools to help you feel confident and feel like you can gain back some of that control over the uncontrollable.

[(15:38)] Megan: Absolutely. Right.

[(15:40)] Stephanie: So for MS Care partners, what aspects of ACT can they apply in their own lives, both to support their loved one with MS, but also to manage their own wellbeing?

[(15:50)] Megan: So again, I think, you know, some of those same concepts that we talked about earlier apply to support partners and care partners as well. Um, it’s really important for somebody to understand their values and what’s important to them. And some of that might be helping to care for or support the individual who they’re living with who has MS. And that’s great. And there’s probably other values and things that are important to them outside of that relationship. And so I think a lot of times, um, you know, there’s, either somebody gets really consumed or involved and, um, lets a lot of the other important parts of their life go and there can be some grief in that. And so it’s important for each partner to have their own independence, you know, have their own values that they’re driving towards. And I would say even sometimes identify where there’s shared values and, and shared things to work towards.

Um, so what’s individual, what can we do as a couple that helps us connected, um, or as a family that, or as a friendship that keeps us connected. And then I would also say, you know, look for where is there that layer of suffering? Where is that, you know, sometimes we, in act, we talk about these metaphors, and one of them I really like is this idea of a monster that’s standing on one side of an abyss and you’re holding onto a rope on the other side and you’re just trying and pulling and pulling and pulling on this monster to try it to get it to fall into the abyss so that you don’t have to see it or deal with it anymore. So I often will talk to the people that I’m working with and say like, where do you find yourself continuously fighting with something that seems like it’s not going away? And when that’s showing up as a person with MS or as a care partner, um, that’s, that’s maybe a flag or an indication that this is something where you need to drop the rope and even if the monster is still in the background, like turn around and see the landscape in front of you and where else can you move towards so that, you know, even if that monster is still there, it’s not, you’re not sitting there fighting with it and spending all of your time and energy on that.

[(18:09)] Stephanie: I love that. I think that’s so well put and really helps me see exactly like what ACT is trying to accomplish. So are there any tools or, or things people can use, because I know that one metaphor alone was super helpful to me, so where can I find more information?

[(18:29)] Megan: Yeah, there’s lots of books, there’s apps, um, there’s websites that have some really great tools. Um, one just if metaphors are and imagery is helpful to you, there’s actually something called the Big Book of metaphors, or I think it’s the act big book of metaphors. Um, and it’s all of those kinds, you know, it’s sort of images that help you to think about different things that come up in life and figure out how you might move around them. Um, and I think sometimes those are really helpful ’cause they’re not dark moment. You just want the image to pop up and not necessarily have to come up with a script to tell yourself. Right. There’s a couple other books that I really like for people who just want to apply some of these strategies at home. One is called Get Out Of Your Mind and Into Your Life.

Um, there’s, um, some others by, uh, someone named Russ Harris, who, uh, has some books called, you know, When Life Hits Hard. One’s called the Reality Slap. And the other one is The Happiness Trap. And all of them really kind of talk, some talk about really hard life events like being diagnosed with a chronic illness or the death of a loved one. Um, and one is really just focusing on, you know, the, our expectation that life, we, we sometimes feel like if we’re not happy, then there’s something wrong. And, um, just really identifying that that goal towards being a hundred percent happy all the time may actually be a trap. And so, um, how to sort of get around that. Um, I also like, uh, there’s some websites, uh, called, uh, one is called DBT Skills, um, and it’s, uh, dialectical behavior therapy.com. And they’re little videos, um, that I know this is, we’ve been talking about act [?] , but, um, DBT is kind of another form of third wave psychotherapy.

And this skills website has lots of different, um, strategies that you can use when you are having interpersonal challenges or, um, getting into arguments with people or when you’re feeling really distressed and you need something to calm yourself down so that that website has little five minute videos of things you can try. And I would say, you know, some of the ones that we all know, like Headspace and Calm, um, there’s another one called Insight Timer. Um, those kinds of apps can really help with that physiologic arousal that we might need to use, um, those apps to calm down and until we can get our problem solving skills back in line.

[(20:59)] Stephanie: Yes, I use, uh, mindfulness apps when I feel my volume going too high and I bring it down a little bit. Um, yeah. And have found that that is incredibly effective for me.

[(21:10)] Megan: Yeah. And I, you know, I, I find that even for myself, you know, if I’m feeling stressed and I’m having trouble sleeping sometimes, like popping on one of those apps and listening to something can help distract me enough to help me fall asleep. And it can be helpful with pain and things like that too.

[(21:27)] Stephanie: Yeah. It’s amazing how I’ll go from being stressed and anxious to actually falling asleep.

[(21:35)] Megan: Yeah. I, I was talking to somebody recently who said, you know, they, that no matter how stressed they are when they use this one particular strategy, um, within 10 to 15 minutes, they’re relaxed and they never think it’s gonna work, and then it always does. Yeah. So, you know, if you haven’t tried it, you know, it’s, it’s worth trying.

[(21:54)] Stephanie: Yeah. I think I made every excuse in the book to not try it, and then one day I was just, you know what, maybe I’ll give it a go. And even when it starts, it seems a little ridiculous when you’re listening to it, but if you just hang in there, it really does help. So we will link all of those resources and tools that you just talked about in the description. So if people are listening and want to learn more or want to check out any of the things you just talked about, they’ll be there.

[(22:20)] Megan: Yeah. I’ll add one more thing about relaxation. There are, sometimes when people, I, I will talk to people and they’ll say something like, breathing makes me feel more anxious. You know, so like doing deep breathing, um, or, you know, even if people have a history of long covid or other things that impact their lungs, that that deep breathing, uh, kind of sensation can be uncomfortable. So in those cases, I would look for, in, in any of those apps, you’ll find them, um, strategies that are, have body relaxation. So it might be progressive muscle relaxation or just a body scan, and you can take out the part that is about deep breathing if that’s something that makes you feel more uncomfortable. So, you know, you can really modify those different exercises to be what’s most helpful for you.

[(23:12)] Stephanie: That’s great. Thank you. So Megan, thank you so much. I know I learned from you today. Uh, thank you for being here and for sharing your expertise.

[(23:20)] Megan: It was really lovely to be here. Thank you so much for having me.

[(23:24)] Stephanie: Thank you for listening to this episode of the Can Do MS podcast. If you liked this episode, please leave us a rating and review on Apple Podcasts or Spotify. We really appreciate your feedback. We’d also like to thank all of our generous sponsors for their support of this episode of the Can Do MS podcast. Until next time, be well and have a great day.

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