Multiple Sclerosis: Individual and Group Mood Interventions

Episode 9 Multiple Sclerosis: Individual and Group Mood Interventions [00:00:00] Jenn Powell: I have sought counseling, both for depression prior to having multiple sclerosis and afterwards being diagnosed with MS. Specifically, both as it pertains to myself and my relationship and with my spouse and. It's been almost, no, not almost. It's been as important as going to my neurologist. Because my mental health is as important as my physicality. Introduction [00:00:34] Meghan Beier, PhD: Welcome to the Find Empathy Podcast, where we discuss the interaction between health and emotions. My name is Dr. Meghan Beier, and I'm a clinical psychologist with training in Health Psychology, Rehabilitation Psychology, and Neuropsychology. In this first series we're going to focus on a population that I work with very closely individuals and families living with multiple sclerosis. This will be our second episode focused on mood and multiple sclerosis. However, this one's going to be a little bit different. We are going to focus on behavioral interventions that address not only diagnosable emotional challenges, like major depressive disorder or anxiety disorders, but also strategies for helping your patients through the normal grieving process that comes along with multiple sclerosis, the everyday ups and downs that are common for most people with MS, as well as the frustrations that accompany symptoms changing over time. Now, like in every other episode before this one, we are going to have an individual living with multiple sclerosis, a mental health clinician who specializes in MS and a researcher. But what's a little bit different, unique and exciting with this episode is that this is the first time that we're going to have two of these experts together at the same time. So in this first interview you have Jennifer or Jenn Powell and Dr. Amy Sullivan. Jenn Powell lives with multiple sclerosis and she also is an MS advocate and has her own podcast called The Multiple Sclerosis Podcast. Dr. Amy Sullivan is the Director of Behavioral Medicine at the Mellon Center for MS treatment and Research at the Cleveland clinic. In this interactive discussion, Jen, Amy and I discuss the emotional challenges that come along with living with multiple sclerosis. As well as very practical interventions and strategies for addressing those challenges over time. The second interview is with Dr. Vicky Leavitt. She's a neuro-psychological researcher specializing in multiple sclerosis at Columbia University in New York city. She has done research in both cognition and emotional interventions for people living with MS, but one thing we focus on in this interview, which is very interesting and helpful, is the company that she started a few years ago called eSupport Health. eSupport Health is backed by numerous research studies and is a group-based psychotherapy intervention for people with MS and their supportive family members. It's a unique and impactful intervention that anyone listening to this podcast can access immediately, today. So I hope that you enjoy these interviews. As much as I enjoyed getting to speak to these inspiring experts. Jenn Powell & Dr. Amy Sullivan [00:03:26] Meghan Beier, PhD: I'm really excited today to have both Jenn and Dr. Sullivan on the podcast today, we're going to be talking about mood and diving into different ways that we can address mood from a behavioral perspective. So first I'd like both of them to just introduce themselves and, give a little bit of background. So we'll start with you, Jenn. Um, can you. share a little bit about your experience living with multiple sclerosis? [00:03:52] Jenn Powell: Hi, Meghan. Thank you so much for, asking me to join you along with, Dr. Sullivan. I was diagnosed with MS in 2010, and it's been quite a ride. I have had, quite a journey from relapsing remitting to secondary progressive. And it has been, both the physiological and emotional transition. And I think it's important to understand and embrace both and doing so and having the opportunity to do so is why I am so happy to be here. So thank you for asking me to be here. [00:04:37] Meghan Beier, PhD: And Dr. Sullivan, can you share a little bit about your history, your career and how you got started working in multiple sclerosis? [00:04:46] Amy Sullivan, PhD: I would love to own first. I'd just like to thank you for inviting me to be on this show and to allow me to be on the show with Jenn. I think it's just going to be a fantastic show. With the ability to interact with each other. So my career started at the Mellon Center after [00:05:00] my fellowship, about 10 years ago. So I've been the Director of Behavioral Medicine and Research at the Mellon Center for 10 years. It is a population that I just kind of fell into, and. When I say that I am the luckiest person alive. I really truly mean that because, my job is, is literally something that is, so it brings so much value and happiness to me. And knowing that I get to help people manage their emotions as as to MS and help them to bring back some joy into their lives after a very difficult and scary diagnosis, is very, very special to me. So, I have the opportunity to treat patients and their family members who have multiple sclerosis. I also direct our research program and, um, we have a very strong fellowship program. Post-doctoral psychology fellowship that I developed about 10 years ago as well that I've now been able to pass on to my partner. My medical partner over here who has done a phenomenal job of growing, uh, the, the fellowship program. So we have just a very unique interdisciplinary program that interacts with our neurology team on a daily basis. And it's just a wonderful place to be and wonderful thing that I am able to, to help as many patients as we've been able to over the past decade. [00:06:21] Meghan Beier, PhD: Thank you so much. You know, one reason I was really excited to have you on Amy is that I have actually heard from patients or people who have visited the Mellon Center and just described what a wonderful multidisciplinary program you all have. And so I think it's really. It's going to be really exciting and great to hear about it. [00:06:39] Amy Sullivan, PhD: That makes my heart so happy, so much for sharing that. [00:06:43] Meghan Beier, PhD: The mission definitely goes beyond your four walls. [00:06:46] Amy Sullivan, PhD: Uh, so wonderful. [00:06:48] Meghan Beier, PhD: Jenn, You know, I wanted to start with you and then I'll have Amy jump in as we go along, but, you know, I think multiple sclerosis has kind of two types of emotional challenges. Right? We know that there are increased risks of things like a diagnosable, depression or anxiety, but there's also the challenge of grief over loss of function or change in function. And there's the frustrations that come along with everyday life of living with MS. When you are feeling more fatigued and you really wanted to go out and, and have that dinner with friends. Right. So I I'd love to hear from you about what has been your experience with I'll label them challenging emotions throughout your experience of living with multiple sclerosis. [00:07:38] Jenn Powell: You know, you're very, you're, I'm glad you brought that up because there is. There's so many things that people perceive that one endures with multiple sclerosis, which can be depression and having a history of depression. I was constantly kind of looking over my back shoulder to say, is it creeping back? Beyond depression. There's a myriad of other things like the continuum of grief and the continuum of anxieties. So we're increasing disability and for myself, having had depression, it has exacerbated some of those emotional pendulums that sometimes we can't grab a hold of and it's difficult to know what is MS? And, and what is my own perception of what I'm going through? Because as we know with multiple sclerosis, there are physiological reasons for having depression. You know, multiple sclerosis is known for being the cause of some depression beyond just the external causes. And as you say, with fatigue, I think with fatigue and expectations of what we go through, fear, frustration and all of the, all of the many feelings. And, and expectations we put on ourselves, they begin to stack up and then you're in the self-loathing and you work hard to try and get through that. But sometimes I find that we don't give ourselves enough time to do. Give ourself grace to just stay present with what's going on and, and hold the moment for what it is and not get too caught up in the emotional quagmire. [00:09:46] Meghan Beier, PhD: Absolutely. I thought you brought up a lot of really helpful points there, and I'd love Amy to jump in and hear maybe your thoughts more about the about those two ends of the spectrum. Just sort of those everyday ups and downs, [00:10:00] as well as the diagnosable kinds of mood conditions, but also any reactions you have to what Jenn was um, sharing. [00:10:08] Amy Sullivan, PhD: Yeah. So the first thing that pops into my mind as Jenn is talking is that when patients come into my office and what I'm also hearing from Jenn they're describing the invisible symptoms and oftentimes the invisible symptoms can be more bothersome than say a physical symptoms. So say somebody has a difficulty walking. It's more of a physical symptom that people can see versus these invisible symptoms. Um, as Jenn was describing fatigue some anxiety, so some mood symptoms, there's also cognitive symptoms, sexual dysfunction, and pain that we call the, you know, really the invisible symptoms of MS. And those oftentimes are so very, very difficult for our patients to manage because there are things that people would say to them. But you look so good. What could possibly be wrong with you so far? Have you heard that before? [00:10:56] Jenn Powell: Dr. Sullivan. I have heard that so often. And as you said on one point I'd like to bring up sexual function and, and, and those things they're very real and very valid. And it's hard when you look quote unquote. Okay. [00:11:15] Amy Sullivan, PhD: Yeah. And it's also that creates even more anxiety, depression, mood symptoms. When you hear somebody say, but you look so good, what could possibly be wrong with you? Right. You don't wear a cast. You, you don't have a brace, you don't have a, um, you know, cane. And so we did. Every day, all day, every day, with our patients' invisible symptoms. I think that when you talk about, the MS journey though, one of the things that I wanted to really focus on was the word grief that Jenn used. And I see grief at multiple points during the trajectory of the disease. So we typically meet the patient when they're newly diagnosed. So a patient will come to the Mellon Center. They will be diagnosed and their neurologist will either refer them for an individual session. Or we have a shared medical appointment. And the shared medical appointment is the second session that the person would join after their diagnosis. It's called Welcome to Mellon Center. And inside of that shared medical visit is a neurology specialist as well as a behavioral medicine specialist. So somebody from my team. So what we've set up here at Mellon center over the course of time trial and error of course, is a normalization of the mental health process. Because when we look at the prevalence statistics of depression in the multiple sclerosis population, they're high they're three to four times as likely as the general population to develop a depression. So, our statistics in the literature shows that about 54% of patients with MS will have a diagnosable depression at some point. During their disease trajectory. So it's really important that we catch them at the beginning. Then what happens is we see patients and they typically get better and about four sessions. And we have data that shows that our patients are getting better in about four sessions. And so we want them to go out and live their lives and be outside of our couches and our four walls. And then as they progressed, as Jenn was mentioning. Earlier, once you progress, they tend to go through a grief cycle again, because now they're grieving possibly the loss of function or the loss of a job or life changing life stressors. So they come back. So what we do here in Melon Center Behavioral Medicine is we call our relationship a long-term relationship, but we have short-term touch points so that they can then get out. And yeah. Live their lives and then come back to us over the course of time so that we're never really disconnected from our patients. [00:13:45] Meghan Beier, PhD: I'd love to ask a follow-up question. Well, first a comment and then a follow up question. I love that model. Earlier in the season, um, we had Dr. Kevin Alschuler from University of Washington. Is a former mentor of mine and a great psychologist there that works with MS. But one of the things that he talked about was how valuable it would be to meet with somebody in the very beginning of their diagnosis. And just talk through some basic skills so that when, and if these changes occur, People had a few skills, a few coping skills in their back pocket that they could pull on, or kind of know when to come back for mental health care before it became too challenging or it got too far down the line. So that model is fantastic. And I wish we all were able to do that. A follow up question, I guess, would be. You know, what are you teaching in those first four sessions that you think helps people get back into their lives? [00:14:44] Amy Sullivan, PhD: Yeah. Well, I guess one of the things I'd like to comment on before I go into that is I, I really believe in kind of the primary care model for mental health, which is those first four sessions. We, we teach them and we'll get into kind of some of the specifics of what we do, but [00:15:00] once we let somebody go, we're not saying. Don't ever come back. We want them to come back within a year so that we can still have our, we can still lay, lay our eyes on them, listen to them. And almost like a, like a primary care checkup. So they come back every year for primary care checkups so that there's still. Within our docket and they're still our patient and we still know who they are. And then when we need them, it's not such a drastic, like let's cover the past 10 years and you know, a 45 minute session, you know? So it is a short term delivery of care. But we, like I said, it's a, it's a longitudinal relationship. It's a long-term relationship that we want them to come back year after year. So, what you had asked was what are some of the things that I teach within the first four sessions? Well, I think first and foremost, it's important for me to develop rapport with the patient, because what we know about our field Meghan, right, is that therapy only works. If a person trusts you and has rapport with you, I don't know about you, but my own therapy experience with a provider that has been treated. I have, I will not be able to sit with somebody unless they're the right fit. So prior to finding the person that I work with, I think I fired three people because it just wasn't the right fit. And so therapy really is like shopping for a car. Right? It's you, you probably are going to test drive quite a few cars before you drive off with the one that fits you perfectly. And I don't take offense to that. If somebody doesn't come back to my practice and they want to see my partner or post-doc. Or if they say, Hey, it's a great fit and I want to stay with you. Really? The relationship is what's important once you wouldn't you say that in your practice too. [00:16:40] Meghan Beier, PhD: A hundred percent. And I usually tell people if you're not feeling connected by the, even the second session, it's time to start looking for somebody new. And I, I will tell people that they can ask me for referrals because I want them to get the help that they need. I don't want them just to sit in my office. [00:16:57] Amy Sullivan, PhD: Yeah, absolutely. So that relationship is really important. The second thing that's really important for me to understand with my patients is their worldview. So when we think about ourselves or anyone around us, you, me, Jenn, any one of us has a different worldview and a worldview basically is just Like a particular philosophy of how we see the world, but it's, it's shaped by our values, our belief systems, our culture backgrounds, things like that. And so it's going to be very different for each person. So when person, when the first person comes into my office and they have a different worldview than the second person that comes into my office, our treatment is not going to be the same. Some people have, they they don't trust health care. So we really have to understand their worldview and that trust and that building that rapport is really the central focus for the first several sessions. Some people trust healthcare, and then they say, I just need some coping skills because I want to get out of this place. I can't stand being in this place, uh, of the Mellon center because they see disability around them. Some people prefer telemedicine because they don't even want to come down to send Mellen Center. And of course that's shifted drastically since the pandemic. So there are a lot of different things that I have to go over in my own head and go over with the patient prior to even developing a treatment plan with them. [00:18:21] Meghan Beier, PhD: Wonderful. And so Jenn, I wanted you to share some of your thoughts as well, because I think that's the model that's at the Mellon center is pretty unique. It's wonderful, but it's pretty unique. And so would you mind sharing some of your experience with therapy, if you've ever sought counseling. [00:18:38] Jenn Powell: Not at all. I actually wanted to commend the Mellon center for that model. And as I speak, you can see I've got a dysarthria. It's something for self-described word nerd. It's very embarrassing. So I'm going through my own challenges with that, but I wanted to just commend the Mellon center and Dr. Sullivan, because that model is so crucial for people to understand that longitudinal self-care for ourselves as MS patients is the only way we are going to coexist with this disease, because as our disease changes over time, so do we and our perception to our disease and our relationships with others. I have sought counseling, both for depression prior to having multiple sclerosis and afterwards being diagnosed with MS. Specifically, both as it pertains to myself and my relationship and with my spouse and. It's been almost, no, not almost. It's been as important [00:20:00] as going to my neurologist. Because my mental health is as important as my physicality. Multiple sclerosis affects all of us. So my experiences I've. Let me tell you, I've test driven a few cars. I've. I have been able to advocate and go get a new one. My concern is with those who really have trouble self-advocating and feel stuck in the situation. What I love about the Mellon center, as it is a touchstone, people can feel safe yet go live their lives. I think people are often afraid of the so-called couch, or they don't know how to really integrate the relationship of therapy into their everyday lives. And with me, I think it's been helpful to have that touch point with a therapist I do now. And when I have stressful situations that come up, I can increase our contact and then decrease it a little bit. So I've been able to find that incredibly helpful. [00:21:10] Meghan Beier, PhD: Hmm. And did you have any of those kind of worries or trepidations before seeking the support of a therapist in terms of, you know, connecting with somebody or sharing some of your inner thoughts? And do you mind sharing any of those worries and, and how you overcame them or what was really helpful. about therapy for you? What keeps you coming back? Yeah, [00:21:32] Jenn Powell: I absolutely have those worries. It's difficult to. First of all, trust that something that the outer world gives so much stigma too, that you yourself can be free of that and seek help for something that seems so personal and something that I've struggled with shame, for example, and shame over increasing disability. Lack of sexual desire. Anxieties that keep me sometimes frozen and shame over how this disease has changed me. Not so much in the vanity point. How I have not been able to pursue some of the things I would have liked to, or how I would've liked to have a healthier sex life, how I would have liked to speak better, because I love speaking, write better cog fog. What has happened as a result of therapy as my, as my current model with my therapist is I've been able to tend to those issues by actually opening up with the help of a therapist, to my family and my spouse and inviting them in. And being able to share that purview because my narrative is different from my spouse's even though we live in the same house. I can't just assume that's his narrative. He has a completely different narrative and it's amazing when we're together in therapy. To see that. And that's very eyeopening because he's not ashamed of me. I am. [00:23:20] Meghan Beier, PhD: Mm. [00:23:22] Jenn Powell: That's a very, I don't like that word, but I'm being very honest. That's been a very big struggle for me. [00:23:28] Meghan Beier, PhD: Hmm. You know, I think that the you're being very vulnerable and sharing all of this. And I so appreciate that. And I I think you're right. That's a story that I hear from a lot of people and, and they may not put it in so eloquent of words, but there is this sense of ableism that permeates the world. Right. And, and, um, when you're diagnosed with something like MS, it's very hard not to fall into that or to have those kinds of thoughts. You know, I wanted to circle back around to Dr. Sullivan and. You know, Jenn brought up a lot of different pieces that I commonly hear with my patients, as well as, and I'm sure that you do. And there could be, you know, as, as Jenn, you were talking, I thought of different pathways that I, as a therapist might go down with you. Right. There's the relationship issues, there's sexual challenges. There's that sense of uh, worthiness, right. And. You know, just the daily frustrations and more right. And cognition and fatigue, and, you know, you could do all kinds of different strategies. Um, but I'd love to hear from Dr. Sullivan when you kind of hear all these different pieces, how do you decide where to start with somebody? And do you have any follow-up comments on what Jenn was sharing? [00:24:41] Amy Sullivan, PhD: Yeah, I agree with you. I think Jenn, thank you so much for being willing to be vulnerable and open. This is going to help so many people just by listening to you, because just you saying what you've said. I think frees people to also have these discussions [00:25:00] with their doctors or with their spouses or people that are important to them. First and foremost, just thank you for your vulnerability. It takes a lot to share what you're sharing. Um, and I so appreciate that. From my perspective, I will. I will always ask the patient what's the most important to them. So I can come up with all kinds of ways that I want to go, but that may not be the direction that they want to go into. So if somebody comes into my office and has concerns about, you know, um, anxiety or a fear that's in their head. One of the first things that we'll do is we'll assess that fear. So I I'm really like some of the tenants of cognitive behavioral therapy. So cognitive behavioral therapy is a therapy developed by Aaron Beck. And it's really just a way of looking at how our thoughts impact our mood and our behaviors. And. What the cognitive behavioral therapy teaches us is that some of our psychological problems are based in part by maybe unhelpful thoughts, learned behaviors, distorted thinking. We call those irrational thoughts as well. And then the worldview really fits in with there is as well. And so what I do with my patients is I help them to take a thought. So typically somebody just knows that they're feeling really, really anxious, and they don't know what thought is associated with that. So what we'll do is we'll sit down and it takes some time to discover what that thought is. That's predicting that. Mood or that behavior that they're acting upon. So let's take, for example, uh, one of the fears that I hear very often in my practice somebody may say I'm very afraid of going into a wheelchair. And so we will talk about. You know, worst case scenario is, and we'll talk about what the prognosis is that the neurologist has given them. And we'll also talk about how that thought is related directly to that high anxiety. At this point, and throughout the process, we do problem solving. We'll do some behavioral modification, we'll provide some coping skills and we're able to help the person to lower their anxiety. Just by way of addressing that thought. Does that make sense? [00:27:16] Meghan Beier, PhD: Absolutely. Yeah. [00:27:17] Amy Sullivan, PhD: Yeah. [00:27:18] Meghan Beier, PhD: I, I had a follow-up question that's sort of adjacent and you know, we've been talking a lot about the ways that MS. Itself or living with MS. Can result in increased emotional challenges. There's also times. I think when people come in and their emotional challenges really are not related to MS at all right. They ha they have a history of trauma or they are having interpersonal challenges that were there even prior to their diagnosis of MS. And so I'd love for you to talk a little bit about that as well, in terms of Do you treat everybody? When do you decide to refer out? When do you decide that maybe MS may be exacerbating these things, but the underlying challenge is really not related to MS. [00:28:06] Amy Sullivan, PhD: So we treat things that are related to MS. So we don't treat trauma. We will see a person and help to triage them and help them find, um, the best provider that treats that. But we focus on how one's life is affected by MS. And that also includes mood disorder due to MS. So our focus is specifically around MS. And that also includes relationship issues, sexual dysfunction, cognitive dysfunction, fatigue, depression, anxiety, et cetera, but it's not the long standing like personality disorders or psychotic disorders, things that you would really need more of a intensive outpatient program and, um, medication management involved. We do participate in medication management with our neurologist. We have a psychiatrist for the more difficult cases who's here, uh, the equivalent of about one day per week. So we're not real strong in psychiatry ever here. So I think it's for our, for what we do at best at Mellon center is treating the person with MS and their family members. And in terms of how the whole family's affected by MS. [00:29:10] Meghan Beier, PhD: I, I'm going to shift back to Jenn and then I have a few more follow-up questions for you, Amy. Jenn, I'd love to, for you to share, you've shared some of the challenges that you've experienced, you've shared that kind of psychotherapy has been helpful for you. Can you also share what are some of the ways that you do manage those daily ups and downs, or when you feel that depression creeping back in, what are some of the go-to coping mechanisms that have been really helpful for you? [00:29:38] Jenn Powell: Well, first of all, I think it's very important for people to give themselves grace. I have, I have learned over time and over the duration of this disease that. Taking care of myself, kind of like putting my oxygen mask on first is the only way to manage my life. And making [00:30:00] sure that that's not selfish, that self care. So just learning and adapting to what self care is. And, and changing my cognition about the perception of my disease. You know, we all, we all know that perception is everything. My perception is my reality. So changing my thought process has been enormously helpful. I do meditate daily and based on what I'm challenged by that day, I create that to be my mantra. So today I am extraordinarily fatigued and I'm having trouble with my voice and it's making me feel, I kind of find out that it's, you know, what does that make me feel? Well, it's making me feel. Sad. So I try and meditate and say, you are complete. You are. You are okay in your sadness and, and that mantra to just sit with and be okay with is very powerful for me. So I take time at time, out of my day to tend to the feeling that I'm feeling and create a mantra about being okay in that and just guided imagery and managing time for myself. Also, it's no secret that I'm a crazy dog lady. So now with the addition of a puppy, I enjoy doing things that have nothing to do with MS. And as hard as that is, I know there are people, myself included that used to think no way, MS is my life. No, it's not, it's a part of your life. And it's so important to make sure that you have things in your life that have nothing to do with multiple sclerosis. It's hard. It's not easy. And that gets harder over time. But make sure you have a touch point. So you can go to that and find your joy minus sitting outside on the grass with my dogs and just making sure I can tend to myself. I can't. I can't establish enough the need to tend to yourself, make sure you listen to how you feel and use some cognitive exercise. I mean, I used to think meditation, if I couldn't get in the zone where I was going to, you know, self elevate that I couldn't meditate now, meditation is different for everybody. And it's simply about putting yourself in a place that can be healing. [00:32:53] Meghan Beier, PhD: Amy, any reactions to was saying? [00:32:57] Amy Sullivan, PhD: Well first I'd say, Jenn, you have a good, good therapist because [00:33:03] Meghan Beier, PhD: I was thinking same thing. [00:33:04] Amy Sullivan, PhD: I'm like my goodness. She has a tool belt full of things as she can do. She talked about acceptance. Then you talked about meditation. You talked about that restructuring, you know, feeling out your emotions, guided imagery fatigue management. And I [00:33:18] Jenn Powell: This is me. This has also been a long journey that I didn't have at the beginning. And so the evolution has been a myriad of collections from therapy and education and, and working on myself. So I just want to say to anybody out there. It is a journey, but just be kind to yourself. [00:33:42] Amy Sullivan, PhD: Yeah, I love it. I just feel like what our goal is really as therapists is to give patients the tools so that they can feel that sense of joy and, um, they can lower their anxiety. They can lower their depression when they're outside of our office. So our goal really is to provide them. What they need inside of our office to take outside of these four walls to live their best life. One of the things that I do on a regular basis is called motivational interviewing. And that ends up being very important to people who are stuck in terms of moving forward on say a disease modifying therapy or let's say PT or OT recommendations and motivational interviewing is this really neat process. It was developed by Miller and Rolnick, and it's this style of communication that sits between being a good, empathetic listener and providing some direct feedback for people. But the goal really is to empower people to change by drawing out their worldview. By helping them understand their meanings behind their values and their history, and also giving them that capacity and that empowerment to change. So that's a technique that we use on a very regular basis. If somebody is really struggling with what their [00:35:00] next step is or what will they do next. Another technique that we use that it's very similar to what Jenn was describing. Is we, we provide some behavioral modifications and some stress management techniques. So I learned early on in my career that if I refer to my section of medicine is psychology, there's stigma attached to it. And I think Jenn was, Jenn was mentioning this earlier. There's stigma attached to the word psychology. So, what I started doing was we, we shifted to say we offer stress management because everyone has stress in their life. Right. But there's no stigma attached to stress because stress is almost seen as a positive thing. Like how busy can you be? How many things are you doing? And people end up really taking well to that. So we ended up switching kind of our wording and our narrative around psychology and instead call things, stress management. So in our stress management protocol, we do a lot of understanding the sympathetic nervous system. We actually hook people up to a little biofeedback tool so that they're able to see. The physiological response to stress and the physiological response to shutting down that sympathetic nervous system and turning on that parasympathetic nervous system or that rest and relax so that they have data in front of them. Um, So that's a big part of what we do. And then we teach skills just like Jenn was saying about mindfulness meditation. Meditation is a very scary word to many people. Um, it's like exactly what Jenn was describing. It's like this thing where people think you're supposed to be transcending, and if you're not, then you're doing it wrong and that's not true at all. So now we found ways that, you know, there are different apps that you can guide somebody to that's got guided meditation on it so that they understand that the way that they're doing it is okay. And then, you know, we, we do visualization guided imagery. We teach breathing skills and different types of muscle relaxation. So all of these are tools that people can use outside of our four offices, but they understand that not every tool is going to be good for every situation. So we teach them how to utilize these tools in specific situations. [00:37:17] Meghan Beier, PhD: Oh, Yeah. absolutely. And kind of a followup question. I know for me, a lot of times I start with telling people that our goal is not to erase. And of emotions because that would be totally unrealistic and none of us lives without um, challenging emotions. And quite frankly, it probably wouldn't be helpful if you didn't have some challenging emotions sometimes. And so I think, I, I guess my question there would be you know, CBT traditionally I think is all about, let me change the mindset and the one thing I don't like about CBT and, and I'd love your thoughts on this too, about Amy is. I think sometimes the thoughts that people are living with when they have MS are true. And so, yeah, we can argue about maybe can we modify them slightly or, but I think sometimes that acceptance that Jenn was talking about is just as important, um, that sort of concept in dialectical behavior therapy of radical acceptance with change. Can be very powerful because there are some times things that we can't change. And so then that acceptance piece is very helpful and that can look different for everybody. But I wondered if you had any followup thoughts about that. [00:38:29] Amy Sullivan, PhD: Yeah. Yeah. As I was starting in. You're going to feel to have multiple sclerosis. One of the things that I studied was the grief and acceptance model from Kubler Ross. So now hers was on accepting that somebody is dying, which is very different from what we do, because our patients don't typically die from MS. Um, So from, from that perspective, you know, you process through these different stages of grief and you eventually get to acceptance and I have learned to add adaptation on that. So acceptance is good. So we want people to be an acceptance of where they are and who they are and what their diseases. But I also don't want that to be, I don't want their disease to be them. There's still many things that they can do so they can still plan for the future. And so adaptation is just learning how to take, one direction and move it to the. Um, knowing that there are still things that somebody can do. And so from my perspective, yes, I agree with you. Cognitive behavioral therapy is helpful in some ways. It can become very robotic. Um, if you, If you follow it to a T. I would hope none of us are doing it to a T because we need to be able to be kind of eclectic in our thinking and, and, and the way that we treat our patients, because no one really falls into one to one theory or another, we have to, we have to mold our theories to fit each person's personality or behaviors or outcomes that are desired. But I think that this acceptance [00:40:00] and this adaptation is really important for our patients to, to really get to so that they accept where they are. But yet they're also no, we're also able to help them adapt their future so that it's not that MS cuts off their future. It's just that it's a change in their future. There are still many, many wonderful things that we can show. So one of the things that I always say to my patients as that, MS steals so much for, from them, I'm not going to let it steal their joy. And so my job is to help them to regain that joy and to have a path of joy going through. [00:40:33] Meghan Beier, PhD: Wonderful. I wanted to shift back to something that you had said earlier, Jenn. In one of the earlier conversations I had with, uh, Dr. Abby Hughes, who's a psychologist at Hopkins and also works with MS. One of the things that she shared was when family members are involved almost just as important to involve family as the person who's living with MS. Because MS impacts the whole family. And quite frankly, when one person is in a bad mood and that person's living with another person, doesn't matter if they have MS or not, that mood can impact the other person. And so I wondered if you could share a little bit more about how. MS showed up for not only you, but your family? How has it impacted the people in your life? [00:41:19] Jenn Powell: Absolutely. That's an excellent question. And having been married 25 years and had MS for roughly 13 years and it showed up immensely in my marriage. It's almost like a third person in our marriage because it's constantly there and it's, it's on my difficult days and it creates difficult days from my husband. And I often when we went to therapy together, which was. Incredibly necessary. And I say that because I needed to also free him and tell him that you have resentment and that's okay. You didn't want to deal with MS. And that's okay. I didn't want it either and that's okay. We resent each other and that's okay. We kinda know. I mean, it's, it's, it's so different for everyone, but um, I grew up in a family where you didn't show you were sick, you just did what you needed to do. And it was hard for me when I became ill to trust that my husband wasn't that same person, and he's not, he's incredibly kind and caring, but he's a human being. So of course he's going to get resentful and he's going to ping off me. And, and my having MS. Doesn't give me the right to be cruel or mean, but I can get very flustered easily and, and there's really. I mean, there's really going to be times where you're both just feeling off the kill. You're just not on even ground. So it's important to bring the person into therapy. So you can both address emotions that you have that are completely normal. And, and it's, it's crucial actul, actually, I don't see how our marriage could have survived unless we did that. [00:43:38] Meghan Beier, PhD: That's fantastic. Actually, everything that you're saying is reminding me of my own therapy experience, my husband and I both also go to therapy and have for many years, and I find it extremely valuable. And I think at one point our therapist said something to the effect of do you want to be completely open and honest with each other? And, you know, we both said Yes. And we said, well, sometimes that's going to be sharing things that don't feel good. And that sometimes by trying to protect the other person, you're almost creating a wall. And it sounds like that's what you're saying, right. That. It doesn't always feel good to say that you're feeling resentful of the other person, but when you can share that with each other, then you have increased intimacy with each other as well, and you can attack it together, right? You can partner together to overcome this rather than each person standing in their own corner, trying to fight off whatever it is. [00:44:35] Jenn Powell: Right. And it doesn't mean a perfect marriage or things are great. It just means having the tools in your tool belt to attack those things. And I have found, we have had to completely redefine intimacy. It is no longer the perceived intimacy that you think of that is just sexual. Our experiences together are the things we love to [00:45:00] do, watch sunsets play with our dogs talk. And those are the things that when those are fractured, I feel them worse than I would if we weren't having an intimate relationship in the bedroom. So redefining what intimacy is for us has been paramount to our ability to keep our marriage strong. [00:45:26] Meghan Beier, PhD: Oh, so powerful. Um, Amy, any thoughts there? Um, And also I'd love for you to share how you bring in family, but any reactions to what Jenn [00:45:34] Amy Sullivan, PhD: Yeah. Yeah. Well, I, I think that having, I mean, no matter what your relationship is, all relationships need some, some work, right? Marriage is hard, relationships are hard. And so for those of us who do utilize a couples therapist, I think it's important to note that this is a place where you can open up. And have somebody who is completely unbiased to help guide you in a situation. It's also a time where you devote an hour a month or whatever your cadences to just the two of you, which is very rare, especially for people who have children or jobs or care responsibilities outside of the relationship, which most of us do. Right. And so it's just a time where you have that opportunity to develop that intimacy just with your partner. And I think it's vital, no matter if your relationship is really struggling or if it's really good, it's just a really great place to come together. From the perspective of what I do with my patients. Yes. We bring the families in all of the time. So it could be from the initial visit of what does this look like? For the, the family. What does MS look like for the family? Many times, it's it revolves around role reversals. So role reversal is say somebody who was once a stay at home spouse is now back in the workforce because the person who was working is now at home. So you see that swapping and role reversal somebody who was a partner or a significant other is now in a care-taking role. These are roles that, you know, nobody signed up for, and this is not where we thought that their lives would go or where they thought that their lives would go, but it is where they are now. And so it's important to address that and for them to be able to talk about the challenges that are associated with that and the emotions that are associated with that. Another way that we bring family in is with children. So if MS is a disease that typically hits people when they're young and people who are of childbearing years. And oftentimes there are children who are impacted by this. And so, 6 7 8, 9, 10, 11, 12 year olds. Don't really understand what's happening to mommy or what's happening to daddy. Um, and so, they might bring their child and as a family session to just talk about any concerns that the person had that the child has with regards to their parent. And then finally, certainly there are ways that you know, we, one of our groups that we do is a caregiving support group. So caregiving tends to be a major thing that we addressed as well. So, um, we offer a group for caregivers because caregiving is its own responsibility and we could have a whole podcast on caregiving, Meghan, [00:48:17] Meghan Beier, PhD: Yeah. [00:48:18] Amy Sullivan, PhD: It comes with its own set of emotions and challenges and physiological responses. And so we started offering a caregiving support group to people who are caregivers of people with neurological condition about four years ago. And that's a really powerful group here. I think it helps to normalize what the caregiver is going through and provide suggestions to each other, to each of the group members who are in that caregiving support group. [00:48:44] Meghan Beier, PhD: I think we've covered a lot of different topics. I just wanted to open it up for one last question um, before we share sort of how people can follow the work that both of you are doing. Is there any other top thoughts, topics questions, things that we've left on answered in terms of managing emotions or seeking therapy or the types of therapy that could be effective for people living with an MS. Is there anything that either of you think we've left out of the conversation? [00:49:13] Jenn Powell: Amy first, go ahead. [00:49:15] Amy Sullivan, PhD: Oh, Meghan, I think you did a fantastic job of covering. There's so many different avenues that we could go down, but I think for today, we've done a great job of covering what is it is of importance at least to be today. [00:49:28] Meghan Beier, PhD: Great. [00:49:29] Jenn Powell: I agree. I agree. And I think it's been it's important. What you both do is such a gift to those of us with multiple sclerosis. I only wish I had found either of you at the beginning of my journey and I encourage people to seek out. Prior to coming into, uh, you know, the situation that's at mass capacity, do it, do it beforehand because there are tools that will [00:50:00] help you. [00:50:01] Meghan Beier, PhD: Yeah, absolutely. I think uh, Can Do MS hits exactly what you just said, where they encourage everybody to gather their team. Even if you don't need them now. You know who to call when you do need them. [00:50:13] Jenn Powell: Absolutely. [00:50:14] Meghan Beier, PhD: So Jenn, I'll start with you. You do such great MS advocacy work, you write, you have your own podcast. Um, Can you share if people want to follow the work that you're doing, uh, where they can find you on. [00:50:27] Jenn Powell: Sure. Thank you so much, Meghan. I am a columnist with Multiple Sclerosis News Today. My column is Silver Linings. However, I have been writing less frequently. Because I have a podcast as well. The Multiple Sclerosis Podcast can also be found at MultipleSclerosisNewsToday.com. And I am now the Director of Patient and Community Engagement for BioNews, which is the parent company of Multiple Sclerosis News Today. And in doing this. Things and in doing advocacy and outreach and being able to touch patients and physicians and care anyone in the greater MS community, it gives me a sense of purpose where I can give back and learn. And I think that's just important to keep that going. [00:51:28] Meghan Beier, PhD: And they're all really great resources, so I'll definitely link to them so people can find all the organizations that you just shared. Amy, how about you? [00:51:36] Amy Sullivan, PhD: So I'm realizing I'm not as technologically savvy and maybe as ambitious as the both of you. So I am on the Cleveland Clinic's website. I don't have my own website. I do frequently post on Twitter. So I'm @DrAmyBsullivan and I started the hashtag #NormalizedNotStigmatize and normalize, not stigmatize is as it relates to mental health and how it's important to just talk about it. That's there, I'm also on the MSAA board of health care professionals. And so that's really important to me too, to be able to give back and to provide a voice of behavioral medicine and psychology mental health to the neurology folks and make sure that we're, we're always talking about how mood is impacted by MS. [00:52:23] Meghan Beier, PhD: Absolutely. And I think the Mellon Center does some great education throughout the year. So I'll definitely link to the Mellon Center and all of that as well. [00:52:32] Amy Sullivan, PhD: Wonderful. [00:52:34] Meghan Beier, PhD: Thank you both for being so involved and taking the time to talk to me. I truly appreciate both of your time and I know we'll stay connected moving forward. [00:52:44] Jenn Powell: Absolutely. Thank you, Meghan. And thank you, Dr. Sullivan. [00:52:47] Amy Sullivan, PhD: And it was so great to talk to you guys both today. Thank you so much for having me. [00:52:51] Meghan Beier, PhD: Remember if you're a mental health provider and would like continuing education credits for listening to this episode, please head over to: FindEmpathy.com/Learn. As mentioned at the start of this podcast. This next interview is with Dr. Vicky Leavitt. She's a researcher and clinician at Columbia university. And she's also the owner and founder of eSupport Health. Vicky Leavitt, PhD [00:53:18] Meghan Beier, PhD: Thank you so much for joining the podcast today, Dr. Leavitt, I'm really excited to have you as part of this episode, especially the episode on intervening with mood symptoms. For a couple of reasons, in my experience, a lot of times neuropsychologists are really focused on the cognition side. We separate cognition and memory and attention from mood symptoms. But in my experience with MS they're so overlapping. And I'm really excited to talk about this opportunity that you have for patients and families, but we'll dive into the research first and then get to what eSupport is all about. So I just wanted you to start off by talking a little bit about how you got involved in neuro-psychological research, as well as how you see this overlap between mood and cognition. [00:54:08] Vicky Leavitt, PhD: Thanks, Meghan, I'm thrilled to be here with you and I love your first question. It's it's amazing actually, because I was invited to present somewhere this year um, today and I started mapping out my talk and I thought the first place I want to start is this big framework for how understanding the brain and cognition has led me to exploring psychological factors. So exactly what you're asking me is, is I think the perfect starting point for talking about my research work and my clinical work and what interests me. Neuropsychology, I think of as the juncture between the mind and the brain where the two intersect and to me, there's nothing more fascinating or important. It's what I dedicate my life to. And it's what I love. And it's central. And then, moving sort of those research interests into the [00:55:00] arena of multiple sclerosis and the clinical work I've done with people with MS has led me to think about the theoretical framework that I subscribed to, which is as a starting point, the mind, the brain as a limited capacity system, which is actually a very simple model, but I think it's useful. And it's useful, to talk to patients about it this way. Like there's only so much we can do with our brain. And in so far as anything is exacting a cost, there will be a consequence. And so of course, MS disease exacts a cost with consequences. And we talk about MS disease burden. When we talk about MS disease burden, we're talking about lesion load and atrophy, but I think we need to also be talking about the psychological burden of having MS. So I think that needs to be a part of it. And we need to look at all of these things together and take them all in and consider it as a whole. And then target for treatment, the various psychological aspects that cause stress and burden for people with MS. [00:56:06] Meghan Beier, PhD: That's really important. I, I, in many ways I see these two things interacting together, right? So when people have a cognitive burden that sometimes brings up some emotional stress for people, they notice that they're having these cognitive lapses and then they start to feel anxious. But then we also sometimes see this idea that when people are depressed or anxious or have other kinds of emotional symptoms that taxes the cognitive system. And so the two are very interactive. Would, would you agree or have any additional thoughts about that part? [00:56:38] Vicky Leavitt, PhD: Well, absolutely. Even to be making these distinctions is unfortunate at this point. It's all stuff that's taking place in our brain, which is a part of our body. And so it's all about brain health and body health, and it's all connected and dynamically related. And, mood issues are there. So they lead us as human beings to question what we've done to deserve it. And that's really unfortunate. Right. I, I often say to patients, if you have a headache, you don't stop to think about what you did to deserve it, or go back to your childhood and figure out what led you to this place. Let's take an aspirin. And I, and I think. That we tend to beat ourselves up when we're feeling down or depressed or anxious. These are physiological responses to something that's going on around us. And, and, you know, I think about, um, I take a very behaviorist approach when I think about how MS can in some cases cause or exacerbate the, the psychological issues like depression and anxiety. So if you look at like an animal model, if you take away an animals control and punish it at random intervals, right? Like these classic experiments by BF Skinner, where they put a mouse in a box and administered an electric shock to its feet. That animal becomes terrified and eventually just curls up and waits to die. So it's a perfect model of inducing anxiety. Taking away control and taking away the ability to anticipate when punishment will be exacted. In many ways. I just described what it's like to have MS. Yeah. So I think, losing your sense of control and losing your ability to anticipate when you'll be punished by, a flare or whatever it is can be really detrimental psychologically on a physiological level that it's really important to acknowledge that and validate that for people with MS. [00:58:35] Meghan Beier, PhD: Um, So now getting into some of the research that you've done, you've published on a few different studies, examining the impact of group interventions to reduce loneliness, increased physical activity, increased psychological wellbeing, improved cognition, improved motor functioning, even improve support partner relationships. Uh, So I know that these are a few different studies. They're not all one giant study, but can you tell me a little bit about these studies and what the interventions looked like? And then, ultimately what were some of the findings that you had? [00:59:10] Vicky Leavitt, PhD: Sure. Thanks, Meghan. So definitely I'm starting over five years ago, I became really, really interested in social support as one of the factors that contributes to brain health and overall health. I started to think about all of our interventions that we do looking at modifiable lifestyle behaviors, things like diet exercise. Where we bring people into a lab and we do something with them and send them home. And maybe they come one or two times a week for 12 weeks. What I realized is that all of these tend to involve human contact. Human contact makes people feel good. Right. And I just realized I think we need to isolate that component and look at whether just putting people together with other people goes a long way towards the benefits that we want to measure and study. And at the same time in my clinical work, I had a [01:00:00] group of patients who wanted a support group for people with MS who had cognitive issues. And I thought, well, that's pretty niche. I don't know if we're going to be able to pull that together and hold it in person here at our center. But I will definitely jump into a zoom link and do that with you. And this was 2017 people didn't know what zoom links were. But my patients were like super motivated and they're like, let's do this. So we started doing it together and I quickly saw that it, it seemed to be so beneficial and I wanted to measure those benefits. I wanted to quantify what I was seeing before my very eyes and through the support of a pilot grant from the MS Society, we ran a pilot trial and we showed reduced loneliness and depression in that very first trial, which we called eSupport. As a result of running that group. One of the groups members one day said I've been meaning to join the gym. And we said, well, why don't you do it? And report back to us next week. And when she came back the next week and she said, I did it, I joined the gym. We were like, oh, that's so cool. And you did it. Cause you knew we were going to check on you. And one of my group members said, that's a thing, Dr. Levitt, that's called accountability. And I was like, huh. And I got really interested in, how do we actually change human behavior? Behave. In ways that are meaningful and sustainable. Like, can we, I mean, it's an open question, I'm a psychologist. So I must believe that we could change human behavior, but what's the best evidence that we have for that. And when I look around the world, I really think perhaps some of the best evidence we have is a program like alcoholics anonymous, which is all about standing up in front of other people and being supported and being held accountable. So we ran our second trial, which was called eFit, where we had people getting together, people with MS. Who shared a goal of increasing their physical activity. And they got together in these groups once a week, a moderated groups, and we showed increases in their physical activity by the end of a 12 week program. At this point I formed my own company because I was like, I can't just be running these trials in my lab and looking at watching this stuff and being like, wow, this is amazing. I wanted it to be bigger and I wanted it to be something that more people could access. I felt like this is so compelling. Being able to bring people together in small groups that are professionally led allows us to be the best version of ourselves that we can be when we are with other people in a trusted, mutually, respectful environment. We just, we make really important and meaningful connections and I wanted to do more of that. So I formed my company, which is eSupport Health, and it's all about group-based behavioral interventions. [01:02:41] Meghan Beier, PhD: One thing I love about eSupport is that, a lot of times I read about these great studies that are done and many of them never actually make it to the real world, they don't make it to people who need the support that was studied. So how did you get eSupport off the ground and, and what is involved in eSupport Health now, if people wanted to join it? [01:03:02] Vicky Leavitt, PhD: Well, first of all, I want to say to your point of great things and thinking it's too bad that these will never see the light of day. I think that I, I took that sentiment very much to heart. So my laboratory at Columbia is called the translational cognitive neuroscience laboratory. And translational is one of those words that you hear a lot of people using. And I thought to myself, what is it? What it really means is bringing research from laboratory to life. And so I feel that I, by calling my little. The translational CNL. I have to stick by that. I have to do it. And we can really only do it if we're willing to push ourselves beyond our comfort zone. And my comfort zone is academic science. And at at a medical center, my comfort zone is not launching a tech, digital, mental health startup and everything that involves, and like getting a, a lawyer to protect my IP and all these things. That's been like this wildly steep learning curve of things that I arguably never really wanted to learn, but I pushed myself to do that because I felt compelled to actually bring this to the world, to people. And so what has it entailed? It's entailed. Well, it's so trite to say, but in truth now, as I think about the last two years, everybody said, it's going to be much more work than you imagine. And when they said it to me, I thought, oh no, no, no, no, no, I get it. I know. It's good. No. And now I'm sitting here and I'm thinking for the first time. Wow. Yeah, it was a really, a lot more work and it still is, but it's exciting. [01:04:37] Meghan Beier, PhD: And that, it's kind of two jobs in one, right? You're still running your lab full-time and continuing to conduct research studies and running this company as well. I know I recently saw that you got funding from the MS Society for another research study. And I wondered if you could talk a little bit about that, and whether you're still enrolling and what what's involved in that research grant. [01:04:59] Vicky Leavitt, PhD: Yes. Thank [01:05:00] you. So the MS Society generously gave us money to run a study, which we call the Connect Trial. And so this is the first time running a trial through my company, which has its own little world of challenges, but it's been exciting. And the trial is focused on underserved populations, people of color. And the reason we call them underserved is simply because in the MS literature, they're not as represented as white people. So we're selectively working to recruit black and brown individuals with MS into support groups for a 12 week course of eSupport. And. It's been amazing. I'm setting out to do it. I thought that it would be, yet another trial it's my fourth is my fourth of an eSupport type product offering service. And but it's been different to learn. Th the experience of these folks, like we've got one guy from Jamaica and one of our groups, and he was like, I've never talked to another person from Jamaica who has MS in my life. We have another black person who was like, I've never talked to another black person with MS in my life. And, and it matters, you know, and I think this is something like I'm learning as a psychologist feeling understood by others and feeling like we belong. It's really, really central to our health. And so, being a black person, living with MS, never having the experience of talking to another black person with MS. That's a little lonely, and so I think that's something that's been really interesting for me to learn. We are still enrolling until I'm looking at the date right now. We're enrolling until February 1st, because our recruitment has actually been astonishing. Right now, our, our target recruitment was 80 and we have 170 people who've been consented for the study. And so some of them will have to unfortunately turn away, but hopefully we'll find a way to, get additional funding. We're looking to partner with health insurance companies so that we can, make this a service that will not represent another burden for people with MS. Because the last thing that people with MS need is another challenge. Another burden. The whole reason I created this was to lower the bar to availability of a resource that we think is very, very valuable. [01:07:19] Meghan Beier, PhD: And to follow up points to everything that you just said was in episode three of this podcast, we talked to Dr. Mitzi Williams and Dr. Jackie Bhattarai and Tyler Campbell about you know what it's like to live with MS and be an ethnic minority. And one of the things that stuck out uh, stood out to me was that Tyler Campbell mentioned that when he was diagnosed, he didn't even know of another black man that was diagnosed with MS. And he was looking for somebody that he could talk to about his experience and how lonely and scary that was. And so having a group like eSupport Health could be really amazing. Another piece that I wanted to follow up on. You know, you mentioned loneliness. And one thing that I hear a lot about is family members of individuals with MS. Often feel very isolated and lonely and maybe left out or not seen by the medical community. Even if they're going to the visit every time with their partner. And I think that you also support family members. Is that right? [01:08:24] Vicky Leavitt, PhD: Yeah, we do. And thanks for mentioning that. So we have eFamily and it's for loved ones and family members. We say loved ones because sometimes it's the sister of somebody with MS or the daughter, or sometimes it's partners. But we, we formed these groups exactly. As you said, because they're a little bit forgotten and also in my clinical practice at Columbia, I've had family members say to me, could I make an appointment just to talk to you? And the answer is, no, you can't. I mean, you're not the patient, our medical system is not set up to provide services to people who are not the patient themselves. So, it's a weird thing thing to, to have somebody saying, can you help me and having to say, well, not within this framework. I can't. So we created that at eSupport Health, a framework where we can help these folks. And it's very, very interesting. I'm learning all the time. Uh, that's a group that, that I actually run myself because I haven't had the opportunity to learn a lot about the experience of the, of the support partners of people with MS. And so it's a, it's a very different journey. It's fascinating. [01:09:30] Meghan Beier, PhD: Yeah, absolutely. It's a great service. Um, I know Dr. Hughes who works with me at Johns Hopkins just wrapped up a study looking at DBT in partners. So family members of people with MS. So DBT skills, not traditional DBT therapy but she found it to be hugely helpful and that people learned how to regulate their own emotions, even when they're not living with MS, because it impacts the whole family. Again, another great service. I'm really excited that you offer that. This may not [01:10:00] exactly fit into eSupport, but I think that there is a connection. You just put a paper out a couple of days ago on diagnosis concealment. And I hear about this a lot with my patients. Not only in their everyday lives, not sharing. I had somebody who hadn't shared with their kids, that they had diagnosis and their kids had, they had lived with MS for over 10 years. They haven't told their family members and it comes up a lot with employment, where people are really struggling, whether or not they disclose their diagnosis to their employer. So I wondered if you could talk a little bit about that and maybe where do you see the connections with social support and diagnosis concealment? [01:10:42] Vicky Leavitt, PhD: Yeah. Thanks for this question. It's an area that's become really fascinating to me in large part, because I had a patient just like you, who was, she'd had MS for, I think, 12 years and her college age children didn't know. And I thought that's crazy, right? Like she's kept something that is so fundamentally a part of who she is hidden. And again, going back to the brain as a limited capacity, I was thinking, what's the burden of that. What's the toll that, that takes on you when you hide from the people closest to you, who you are. And so I actually have a postdoctoral fellow right now. Her name is Dr. Anne Keever and she and I together developed a survey to study this. We went into the literature and we realized there really only been a couple of papers. Nice work by a fellow named Jonathan Cook at Penn State University. And, but he's, he's looked at it. He's framed it as stigma. So from the get-go we thought, well, you know, stigma is negative, right? It's um, it means that people see you as, as bad, or, you know, your condition is bad. And we want to look at the good side and the bad side of having MS. And so we created a scale that would look at behaviors of people around disclosure decisions and beliefs it's divided into two sections. The first part is, is the behaviors, do you conceal your diagnosis? You know, do the people closest to, you know, to your in professional circles, do you tell people in personal circles? So, a handful of different questions, really getting at the extent to which people disclose and then the beliefs, the anticipated consequences of disclosing, right? We wanted to know. Whether people think that there'll be met with negative repercussions or whether they think that there'll be welcomed into a community and potentially will have advantages conferred if they, if they disclose. So we wanted to really look at it. Yeah. Sort of multifaceted way because it's a very complex and multifaceted issue. And we published, we validated the scale and a couple of hundred people from across the United States, Canada and the UK. And then we found out that we, we wanted to go even deeper. So we started looking at how it relates to psychosocial outcomes, how it relates to things like depression and anxiety; social support. So again, like coming back to - does the very act of keeping something secret actually lead to loneliness is one thing and social isolation, which is another, right? These are two different things. One is a sense of being alone and one is actually being alone and that's something that we're, we're starting to see. We are seeing relationships with those things. And then we took it one final step, which is maybe, hopefully not the final step, but for now we created we're creating an intervention. The questionnaire is called the DISCO disclosure and concealment. And the intervention we created is called DISCO Talk. So now we're bringing together groups of 10 people once a week for three weeks. It's a three week program. And we're talking about, we're presenting them with some of the information that we've learned through deploying the survey and what we know. And then we're just, we're opening it up for a discussion. And we're learning and we're beginning to understand, and actually this was published today, a letter that we wrote about our initial findings from these groups about the DISCO Talk and, um, and what I think what I'm most struck by is. It's not a one and done thing. It's an ongoing thing. So even for this one patient, for example, who shares it with everyone and he's very open and he's very, very comfortable sharing. He recently got divorced and now for the first time in his life, he's on dates. And he's trying to figure out when do I disclose? And again, like he's very comfortable disclosing, but that's a different kind of a thing. And so I'm sort of surprised to learn. But it never really ends. There's always different iterations of these disclosure decisions that the folks with MS themselves have to deal with. And that's the thing I think that's so heartbreaking is like, ultimately it all comes back to yet another burden that the person with MS has to deal with. And I don't know the answer to how we deal with that other than we get together and we support each other and we talk [01:15:00] about it. That's my go-to. I don't know the, I don't know how to help, but let's, let's talk about it together because things are always better if we're in it together with each other. [01:15:10] Meghan Beier, PhD: Absolutely. I often see a light come into people's eyes or faces in support groups that I've been a part of when they're able to connect and realize, oh, other people have to manage this as well, you know? And, and so sometimes just being able to connect on that point, even if there isn't a great answer is a great starting point. You've done a lot of research. You've worked with people clinically. You know, this podcast is really geared towards community mental health providers who may be just learning about MS for the first time. Do you have any sort of general recommendations or things that you think are important for those mental health providers to take home and implement into their clinical practice? You know, if they haven't been working in MS or chronic illness for a long time? [01:15:57] Vicky Leavitt, PhD: That's a tricky one. I mean, yeah, there's something I do believe that there's something special and unique about people with MS. People with MS talk about that a lot. It's its own unique animal as a, as a chronic illness. And I, this is the population that I've devoted, all of my research work and all of my clinical work to. But we recently brought a new coach on at eSupport Health, and she didn't have experience with MS. And, I, I did some training with her and I, I wondered whether it would be like very unique or different and, and what I've seen happen is she's just seamlessly, folded herself into this community and she's just like, she just gets it. So in one sense, I don't want to say like, oh, there's so much to know about MS. And it's so special and unique. It is, but people are people at the end of the day. And this is in some ways I think about the journey with MS as. Similar to the journey that we all face in life, where the scariest thing is the unknown and the unpredictable, but we take that and we've turned it way up for people with MS. So the unpredictable and the unknown is just that much scarier. But as human beings, I think we can all understand and empathize with how scary that journey is. We understand something about. [01:17:21] Meghan Beier, PhD: Absolutely. That's great. Well, thank you so much. You know, my final question is about how do people find you? So if, if they are interested in referring their patients to eSupport Health, or if people are listening here who are medical providers, or even people living with MS themselves, how do they find eSupport Health? [01:17:41] Vicky Leavitt, PhD: Great. Thank you. So, first of all, our link is eSupportHealth.com and anybody is welcome to come and visit and look around. We have videos, we have testimonials lots of information. We do a free open house. The first and third, Tuesday of the month at noon. And you do have to sign up for it and you can do that through the website, but that's usually a small group. It tends to range from like four to eight people. And there's a coach there and we run it just like a group so that you can come in and you can feel what it's like. And you can see if you like it before you decide to sign up. So I would encourage people to take advantage of that. And finally, we work with a handful of neurologists across the country. Who say to their patients, I can give your name and number to the folks at eSupport Health, and they can contact you if you'd like. And we found that to work really well. If the patient gives permission, we will do the work. Because again, like the last thing I want is to place yet another burden on folks with MS. And I know that when you leave your doctor's office, you might have a bunch of scraps of paper with different things jotted down. I mean, I don't know. It sounds like I haven't been to the doctor's office since 1985, but you know, there's a lot, you've got to set up your MRI, you've got to do this, you've got to do this, you know, so you don't need another thing on your to-do list. So I would welcome practitioners. If, if they're comfortable saying to a patient, can I go ahead and give your contact information to the folks at eSupport Health? We also have something I want to, I want practitioners to know when we onboard. Patients, at eSupport Health, we ask them, can we let your referring neurologist know or, you know, can you tell, do you want to share with us the name of your neurologist or your healthcare practitioners? Can we share with them that you're here and this we did at the suggestion of one of our neurologist partners who said, you know, sometimes I refer my patients for various mental health supports. And I never know if they go, I never know if they do it. And I would really like to close the loop on their care and have feedback and know. And so we're all about that. We incorporated this into our process. Once we got that feedback, because we also want to have communication with your doctor and it should be coordinated care. And we worked with. [01:19:56] Meghan Beier, PhD: That's wonderful. That's, that's really exciting that you, you [01:20:00] do close that loop because you know, it is, I do similar things. I refer people to lots of different resources and many times they'll come back to me and say, I had this list of 10 things to do, and I just didn't get to that one. So being able to take the burden off is amazing. Thank you so much for being willing to talk to me today and talk about the research as well as the clinical opportunities here with eSupport Health. Any final thoughts, or is there any other kind of social media places that people can follow your work? [01:20:29] Vicky Leavitt, PhD: Everything is at our website with regards to all of the, ongoing research that comes out related to the, the things we do. We're very much empirically minded. We want. We want to be transparent about the evidence that supports the services we provide and it's all on our website. So we hope that you'll visit there and, and thank you for this opportunity to talk about it, Meghan. [01:20:49] Meghan Beier, PhD: Well, thank you so much. Conclusion [01:20:51] Meghan Beier, PhD: Thank you for listening to the Find Empathy podcast! If you would like continuing education credits for listening to this episode, go to: findempathy.com/learn. Our goal is to help people living with challenging medical conditions find the mental health providers who understand their diagnosis. Our education, and this podcast, is focused on increasing the number of mental health providers who can help. If you are a psychologist or a mental health provider that specializes in health populations, please consider signing up on the free Find Empathy directory. Go to findempathy.com and select "Get Listed." We would love to connect with you on social media. Look for us on Facebook, LinkedIn, Twitter, and Instagram. If you have suggestions for topics you would like covered by this podcast, let us know. Our email is [email protected]. Finally, please know that the opinions expressed by the experts today are their own. We are not financially supported by any of the businesses or resources described in today's podcast. Also remember that the content provided today is for educational purposes only. 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