Finding Your Calm: Mindfulness and MS

Finding Your Calm: Mindfulness and MS

Episode 185 – Podcast Transcript

[(0:24)] 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 we’re joined by Dr. Robert Simpson, who’s a rehabilitation physician and mindfulness researcher who specializes in improving quality of life for people with MS. His work bridges clinical care and science, exploring how mindfulness and compassion can transform the way we experience stress and symptoms. Hi Robert, thanks so much for being here with us today.

[(0:51)] Robert Simpson: Thanks, Stephanie, it’s my pleasure.

[(0:53)] Stephanie: Could you briefly introduce yourself and what led you to focus on mindfulness in MS?

[(0:58)] Robert: Sure, I’m Robert Simpson. I’m a specialist physician in physical medicine and rehabilitation. I’m based in Toronto, Canada, originally from Glasgow, Scotland. And my clinical role primarily involves working with, uh, people with multiple sclerosis in the largest clinic for people with MS in Canada. My research role also aligns with that, and it is focused on the care of people with multiple sclerosis.

[(1:30)] Stephanie: That’s great. In your professional opinion and with all of your experience, why do you think mindfulness has been growing in popularity and relevance in MS care today?

[(1:40)] Robert: I think that mindfulness is growing in terms of popularity and relevance because there’s an increasing recognition that stress is a common issue that people with multiple sclerosis face and they-they face stress for multiple reasons which are complex and interconnected and span different areas of the disease itself, social functioning, emotional functioning, relationships, vocation. In short, there are multiple reasons why people with multiple sclerosis can experience stress. And actually, the research evidence suggests that compared to the general population, people with multiple sclerosis have higher baseline levels of stress. So stress is certainly a big issue and looking back through the research literature over the past 20 to 30 years it has become apparent that again, as I say, stress is an issue. But also by comparison, there was a-a-a lack of research which had identified treatment strategies or life-lifestyle strategies more broadly, uh, that can help people with multiple sclerosis when it comes to managing stress. And some of that aligns temporally with the growth of mindfulness as phenomenon in the public realm, uh, in that mindfulness was introduced in North America as a healthcare intervention around about the 1980s, but really started to gain traction exponentially from around the turn of the millennium. And the number of publications generally in that area are now enormous. We’ve seen the same phenomenon take place when it comes to evidence supporting this approach for people with multiple sclerosis.

[(3:36)] Stephanie: Yeah, I remember when I was diagnosed, everybody thought I had to avoid all stress, which of course is completely impossible in your practical everyday life. But what do we know about how stress impacts MS, both from a scientific perspective and just in your day-to-day interactions with people who live with MS?

[(3:57)] Robert: So the, first of all, as you say stress is ubiquitous, it’s part of life, and it’s not something that I think we should try to eliminate. More so, it’s something that we should try to interact with in an intelligent way that allows us to function in the way that we want to and the way that we need to. Um, in terms of what the research evidence suggests, uh, there have been several meta-analyses which have demonstrated a link between stress and relapse in multiple sclerosis. There have been systematic reviews which have drawn out the data a little bit further to suggest that the temporal link is around 4 to 6 weeks in relation to relapse. And the limitation that we have in knowledge is that a lot of that data comes from self-reports. So people are asked in studies to report stressful life events, and then that’s tied to confirmed relapses. And-and so we can’t really take that apart and say stress is causative of relapse or is stress related to disease activity in some way. The bottom line is we don’t know.

Looking at it another way, you can say that for any individual, but perhaps particularly so in multiple sclerosis, development of symptoms can herald a period of uncertainty. What is this that I’m experiencing? What does it mean? Does it relate to multiple sclerosis? Am I having a relapse? How should I respond to this? When should I contact a medical professional? Will I be able to contact a medical professional in time? Will I need to change treatment? So there’s all sorts of different questions, can start to feature there. So bottom line, stress is a factor around relapse for sure, but we don’t know what the exact underlying sort of physical basis for that is. And so it could understandably be reactive, and that people are reacting to what they’re experiencing. The-the bottom line is we don’t know. And there are, there are, there are also studies that characterize stress through the eyes of what it’s like to experience stress when you have multiple sclerosis. And people use fairly poignant descriptions. There’s one study that, a quote that stuck in my mind was, if you want to understand stress in view of our condition, stress is a poison for us. And I think that captures something quite aptly, which my patients commonly describe to me and the research literature supports. And-and that is that stress can impact adversely on a multitude of symptoms, including the most common symptoms that people with multiple sclerosis often face. So stress in that sense certainly can be an issue. And that I think is where people speak to it most in terms of their interactions with health care providers or-or even on a more fundamental level in terms of how they dialogue with their family members, their partners, their friends their employers even.

So I think it’s difficult for, it can be difficult for an individual to convey to another how stress is impacting, uh, on their ability to function well and to feel well by doing that. So that leads to a sort of interesting intersection where people have a distressing experience, but don’t necessarily know what to do with that experience, and can feel a little bit stuck at that point.

[(7:42)] Stephanie: Yeah, I think you’ve made a lot of really important points, especially around stress, no matter the source, right? Being at your MS or the outside world for sure has downstream effects, right? It affects your sleep, it affects your mood, uh, it makes you more fatigued, it can interfere with cognition. And I don’t think I’ve talked about my stress levels a lot with my health care team. Do you find that it’s dismissed in clinical care or what do people with MS need from their team to feel supported?

[(8:14)] Robert: Certainly in research studies, people describe it as being, um, less of a priority than other aspects of care which in a resource-constrained system, I think we can all understand to an extent. The other factor is that stress is less of a clinical term, if you like, than something like anxiety or depression or cognitive impairment and it’s also a fairly amorphous construct. And if it relates to relational factors, if it relates to social factors, then sometimes that might be seen in an environment that’s heavily focused on medical aspects of wellbeing and functioning. It may not receive the same priority that the person experiencing the stress would like it to. So I think that’s a barrier. Another barrier, which is very well described in the research literature, is that access to mental health care is challenging in general, and it’s particularly challenging for people with multiple sclerosis who face several health inequities around access to care. And that can be particularly so for people who have comorbid issues with cognitive function people who live rurally, people who have lower social means, people who are more physically disabled. That can be very challenging to access services and resources that can be helpful when it comes to managing stress.  I think healthcare providers, I cannot, I can speak from my own perspective. And I think this is probably true for many healthcare providers, is that we all generally get into the profession because we want to help. But if we’re faced with something that we feel we don’t really have the means to provide any tangible support or help, that can be difficult, and it can make it easier to focus on other things where we think we can help. For example, with regards to disease-modifying drug therapies, with regards to symptomatic treatments using medication with regards to some aspects of education around multiple sclerosis or management of other health conditions, these sorts of things.

[(10:42)] Stephanie: Yeah. I’ve never thought about it before, but being a healthcare provider and somebody with MS, you’re right. We do want to help and we tend to gravitate towards what we feel like we can address and improve in that short 45 minutes. But I guess that’s where mindfulness comes in, right? Because pretty much anybody can implement it into their lives. Can you explain to us what mindfulness actually is? What does it mean?

[(11:07)] Robert: Mindfulness is a-a term that, in general parlance, I think is used to describe being aware of something or to remain aware of something. And if we look to the, uh, origins within the English language, that’s where it started to feature in terms of in relation to memory going back to, I think, the 14th century in Old English. The concept is likely millennia old, but it starts to feature in written descriptions of philosophical systems for spiritual development deriving from, uh, uh, ancient India in terms of yogic and Buddhist systems of thought and in both instances again mindful is and it’s a, you know, this is a an English language approximation of terms that relate to being aware of one’s conscious state, uh, and being aware of one’s conscious state in relation to one’s values, which in those systems are tied to advice about how to deal with life, what behaviors are likely to be helpful and productive when an individual wants to follow that type of path in life, a Buddhist or a yogic approach to life.

[(12:34)] Stephanie: How does mindfulness support people in feeling more empowered, especially when so much about MS feels out of their control?

[(12:41)] Robert: So mindfulness-based interventions, as I mentioned, they were introduced by Professor John Kabat-Zinn in, uh, Massachusetts in the 19-, late 1970s, early 1980s. And-and they, again, are based on yogic and Buddhist practices. So, for example meditation practices yogic postures or asanas, and they’re also tied together with education around constructs such as what is mindfulness and what is stress and how do those two things interact. Uh, and mindfulness-based interventions, the-the index intervention, the first one that was developed, manualized, and has been most widely studied and demonstrated in terms of its effectiveness, is mindfulness-based stress reduction. Like the name suggests, the use of mindfulness as a means of reducing stress. And that’s a program that’s typically de-delivered over an eight-week period with weekly classes, which are around about 2 hours duration. Within those classes, and bearing in mind this all took place long before we used virtual care or Zoom or MS Teams or things like that. So it was characteristically done in a group setting where people came together. Nowadays, it’s likely more often done in a virtual setting, but nonetheless, it involves interacting with mindfulness instructors and also interacting with other people who are on the course. And Mindfulness-based stress reduction was introduced for people who had difficult-to-treat conditions, shall we say. This is, Professor John Kabat-Zinn has described this and that he approached, uh, I believe he approached the chief of medicine in UMass and said, I want to work with people who have difficulty to treat conditions like chronic pain and stress. So that’s important because the program was developed in such a way that people taking part and learning mindfulness were learning themselves about how to do the practices, but they were also spending time with other people who had similar experiences and that likely feeds into how these interventions work to some extent.

[(14:59)] Stephanie: Yeah, I can imagine the camaraderie and the ability to connect with others definitely has an impact on these mindfulness interventions. And I know you’ve carried that work forward and you’ve studied the effects of mindfulness on many different symptoms like anxiety, fatigue, cognition. Tell us what findings have stood out the most to you.

[(15:22)] Robert: Yeah, so we used an approach which is, uh, based in the Medical Research Council, uh, development and evaluation of complex interventions framework and that approach is mindfulness as a complex intervention, meaning that it doesn’t act in isolation. There are lots of contextual factors to consider. And that’s important because mindfulness-based interventions were developed primarily initially, as I say, for people with stress and chronic pain but subsequently most used developed an evidence for people with chronic mental health conditions and not necessarily for people with multiple sclerosis who can experience quite a wide range of symptoms, impairments and disabilities. So I’m laboring the point here really to explain that we first of all wanted to understand if these interventions were feasible for people with multiple sclerosis, if they were acceptable, if they were accessible and was it necessary to modify them in any way to improve those types of metrics. So we did that and we-we tested mindfulness-based stress reduction in a randomized trial. We collected qualitative feedback which gave participants and the instructors an opportunity to feedback on what worked well, what didn’t, what we could improve. And generally, the program was well received and perceived to be effective in some ways that we anticipated, in some ways that we didn’t. And perhaps the most interesting ways that we hadn’t anticipated were in relation to how it impacted people’s relationship with themselves and their relationship with other people both are really important factors in living well with multiple sclerosis because fundamentally we’re social beings.

In terms of the more quantitatively focused research, we’ve carried out a number of reviews. We’ve found, as you say, that these interventions are effective, particularly for stress, also though for anxiety, for depression, for fatigue and there’s emerging evidence that they may also be helpful for things like sleep and aspects of cognitive function too. I think the most striking finding for me is that although we can reduce mindfulness interventions to a package if you like and say here are the practices, do a bit of reading about this, do the practices and so forth. There’s an element of interaction that takes place in these group programs which builds on a sense of belonging, a sense of camaraderie a sense of shared experience, peer support, common humanity. And also fundamentally, the characteristics of the instructor are very important. People with MS have repeatedly said in the qualitative studies that we’ve reviewed, they highly value the opportunity to engage with an instructor who understands some of the common issues associated with multiple sclerosis, like disabling symptoms, and is able to tailor the mindfulness practices so that they’re not just generic stress reduction techniques, but they’re tailored in terms of their content to address common symptoms and impairments associated with multiple sclerosis. So the instructor and the training of the instructor are really, really important things to consider. And that’s-that’s really what stands out most to me.

[(18:52)] Stephanie: Many people with MS, myself included, struggle to feel compassion for themselves. How can mindfulness help shift that mindset?

[(19:00)] Robert: Well, first of all, it’s-it’s a great question, and it’s not surprising to hear that people with multiple sclerosis find it difficult to be compassionate to themselves because the population data for the general population is very similar in that most of us find it harder to be compassionate towards ourselves than we are, uh, towards other people. And there are many complex reasons for why-why that may be the case including people often perceive the idea of being compassionate towards themselves is perhaps a little bit like admitting weakness or pampering yourself in some way. Uh, and people also worry that if they adopt a-a kind and caring approach towards themselves, they’ll lose motivation and they’ll get weaker, so to speak. Actually, if anything, the research evidence suggests that the opposite is true in that the evidence to support giving yourself a hard time really doesn’t stack up. The evidence to support self-compassionism approach associated with better functioning across multiple domains, including physical and emotional and social is that self-compassion is an effective approach. However, it’s something that takes time to develop. And mindfulness-based interventions in their own right, so things like mindfulness-based stress reduction include self-compassion as part of the approach generally, but it’s not the explicit focus of the intervention.

There have been, however developments from… So-so first of all, mindfulness-based stress reduction was the original mindfulness-based intervention. It was subsequently optimized for people with recurrent depression incorporating more cognitive behavioral theory by a group of cognitive psychologist and that was packaged into mindfulness-based cognitive therapy, which is also now very well studied, very widely validated, has good-good quality evidence for effectiveness. Mindful self-compassion could be considered another derivative of mindfulness-based interventions generally, and that’s a program that’s been developed by Professor Kristin Neff and colleagues. And it has much more explicit emphasis on development of compassion for oneself. And it’s, as I say, it’s tied very closely to mindfulness practices. So a lot of the meditations that people would undertake are very similar to the meditations that are part of mindfulness-based stress reduction, but they are specifically aiming at addressing one’s relationship towards oneself by using self-compassion.

[(21:48)] Stephanie: Well, thank you. I really enjoyed learning a little bit more about how mindfulness has evolved over time and your work is really interesting. So I want you to help me put it into practice a little bit. Let’s walk through an example that has happened to me many times in the past. I might start my day with 20 things I wanna get done, and I make it through 10 of them, and I am either too fatigued or my mobility isn’t what I was hoping it would be that day. And then instead of focusing on the 10 things I did accomplish, I get angry and frustrated that I wasn’t able to do everything, and start beating myself up. How can mindfulness take that moment and help you reframe it in your mind?

[(22:35)] Robert: So first of all, I think it’s important to be aware to be self-aware, so to be paying attention to how-how you’re living your life and how you’re living your life is impacting on your sense of well-being because that gives you a first inroad when it comes to planning your activities, prioritizing your activities, and that could probably tie to the element of mindfulness. So that’s the kind of self-awareness piece. The self-compassion piece is perhaps a little bit more subtle, but it’s maybe recognizing again, as you see, if your response pattern is such that you give yourself a hard time for not managing those 20 tasks instead of only managing 10 then recognizing that there were reasons for that and also recognizing that if you’re critical of yourself, the response that’s likely to follow from that is not likely to help you function any better. If anything, it’s likely to make you function worse. Whereas if you take a break, allow yourself to reconstitute and start to deliberately cultivate positive affect, and then reset your goals following that, then that’s far more likely to be effective. And I try and encourage everybody that I work with to see managing your day-to-day expectations as an iterative task. Uh, with multiple sclerosis, what we see almost routinely is that symptoms are highly variable and they fluctuate enormously. So we have to try and avoid being rigid when it comes to our expectations, and we have to be able to modify our activities accordingly. And I think in the bigger picture of that, if you like, it’s also very important to care for yourself on a day-to-day basis and to think carefully about what you’re likely to be able to manage and also to think about what order might you do your activities in. Maybe you’ve got something that’s very demanding cognitively or energetically, probably makes more sense to do that earlier in the day when you’re less fatigued, because we all know when we’re more fatigued it’s harder to maintain that positive outlook.

[(24:44)] Stephanie: And I can imagine that everything we talked about regarding people with MS also equally applies to care partners or loved ones of people with MS?

[(24:54)] Robert: Definitely. I mean there’s a, there’s a fairly good-going literature that supports the caregivers generally, but also for care partners for people with multiple sclerosis often face a multitude of stresses which can go unseen in society. A lot of the care that care partners provide is informal unpaid, um, and very unpredictable. So it can be difficult for care partners to plan their activities. And we know that things like stress, anxiety, and depression are also very common among care partners. And like any human being they also have needs for emotional well-being, for a sense of safety, uh, to be able to rest and recuperate when necessary. So I think things like mindfulness-based interventions, mindful self-compassion, they also have fairly strong evidence that they can be important components of strategies to maintain emotional equilibrium. But again, in both circumstances, they have to be part of the bigger picture. So, mindfulness and self-compassion-based interventions aren’t going to address practical issues, which also feature prominently. But they can help in terms of, as you say, providing people with useful tools that they can implement as and when required on a more reactive basis, and then on a more intentional basis having them as part of a daily practice. So setting the tone, so to speak, for your emotional well-being on a day-to-day basis too, whether you’re a person with MS or whether you care for a person with MS, someone you love.

[(26:38)] Stephanie: So hopefully our listeners are excited to learn more about mindfulness, and they’re curious, but they might be unsure where they can start. So what’s one small step that they could do today?

[(26:49)] Robert: Yeah, it’s a great question. You know, I’m always a little bit cautious. I don’t, I don’t think mindfulness is for for everybody. So-some people don’t like the concept, and I definitely don’t see it as a panacea. What I do see mindfulness as is a useful set of tools for all of us. And I think that if and when the time feels right, if somebody wants to learn about mindfulness, the best evidence comes from participating in a structured training program, such as mindfulness-based stress reduction. Now, if you’re a person with multiple sclerosis, the ideal option, I would say, is for you to access one of those programs affiliated with a multiple sclerosis center, either, as I say, in person or through linked online resources. If that doesn’t feel right, if that feels a bit daunting, at this early stage, and it’s really just a toe in the water, so to speak, then, there’s a, there’s a wealth of literature out there introducing people to concepts around mindfulness. Probably, I would recommend going to, more source documents like, Professor John Kabat-Zinn. He’s written a book called Full Catastrophe Living,  which is a fairly acce-, fairly accessible book, and a book, and there is a similar book on mindfulness-based cognitive therapy for depression. You don’t necessarily have to have depression to benefit from that. They’re just two examples of good resources. I also really like the resources that Professor Kristin Neff has available on selfcompassion.org. She has a range of freely available, guided meditation practices, which can offer, again, a toe in the water, to get a little bit of experience of these interventions and see if it feels right for you.

Last thing I’ll say is, you know, sometimes when people start something new, especially something like meditation, which is associated with relaxation sometimes people can feel a little bit more discomfort initially as they start to come in contact, uh, with aspects of their experience that they may have been, uh, keeping in-in the background so to speak. That’s pretty pretty, uh, normal, and-and actually widely acknowledged, uh, in the literature around mindfulness-based interventions. There’s a nice qualitative literature that describes experiences of people with chronic health conditions learning mindfulness, and it’s very much seen as a, as a process of change. And initially, people may experience a little bit of discomfort, but over time and through practice and the support that that’s derived from compatriots in the group and from the group instructor, people start to adopt a new way of viewing their experience and start to feel better towards the end of the course. So, a cautionary note that, uh, it’s not necessarily a bad sign if it initially brings up a little bit of discomfort. The evidence is pretty strong over time that changes.

[(30:02)] Stephanie: Thank you for going through all of that with us. And we will link the resources you mentioned in the description of this podcast. Thank you so much for being here and for this fantastic conversation. I know I learned a lot, and we really appreciate your time.

[(30:17)] Robert: Likewise, thank you.

[(30:18)] Stephanie: Thank you for listening to this episode of the Can Do MS podcast. If you like this episode, please leave us a rating and review on Apple Podcasts or Spotify. We 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.

[END]

This podcast is possible thanks to the generous support of the following sponsors: