Hosted by Dr. Brian G.M. Durie, world-renowned myeloma expert and Chairman of the Board of the International Myeloma Foundation, the "Conversations with Dr. Durie" podcast focuses on inspirational and educational topics that are relevant to the myeloma community and beyond.

In this episode, Dr. Brian Durie is joined by Dr. Sue Dunnett, a Senior Lecturer at the University of Edinburgh, in Scotland. Listen as they discuss Sue's work with myeloma support group members in an effort to understand what role resilience plays in a patients recover, and how to build personal resilience. 

Transcription:  

Dr. Brian Durie: Hello, I’m Dr. Brian G.M. Durie. Welcome to our podcast, aptly named “Conversations with Dr. Durie.” This podcast is brought to by the International Myeloma Foundation. Today, I will be speaking with Sue Dunnett, who is a Senior Lecturer in the business school at the University of Edinburgh, and she is going to talk about what it means to be resilient. 

So, I’m very pleased to welcome everyone to this discussion about resilience. Right now, I’m pleased to welcome Sue Dunnett who is Senior Lecturer in the business school at the University of Edinburgh, in Scotland. And, I’m very pleased to welcome Sue, so welcome.    

Sue Dunnett: Thank you. Thank you for having me.  

Dr. Brian Durie: And so, it’s interesting to ponder why Sue Dunnett in a business school is interested in resilience, and how might resilience be important for patients with myeloma. And so, perhaps, Sue, you could start by harking back a little bit in history on how you came to be connected with myeloma and subsequently, the importance of resilience.  

Sue Dunnett: Sure. Working for the International Myeloma Foundation here in the UK was actually my first job out of university and it was one that I loved. So, I loved working with myeloma patients and support groups, and I helped set up some support groups here in the UK. And, then I went back into university to further my kind of academic side of my career. And then, I knew that actually what I wanted to do was keep my connection to myeloma and to people living with myeloma. My Ph.D. actually was focused in on how people live with myeloma, and how support groups specifically allow those living with myeloma to navigate the healthcare market. And, what that means in terms of when someone is a patient and they become a consumer in the healthcare market. And, I did that research in the support groups of Wisconsin with a wonderful leader called Chuck Coval, who led the Madison support group in Wisconsin. So, although I did my Ph.D. here in Scotland, I’ve actually always researched and worked with the wonderful IMF community in the states and worked with support groups there. And then, when that project was over, I began working at Edinburgh University in the business school because my Ph.D. is in a business subject and thinking about consumer research really is my area. So, how culture and other factors affect our lives as consumers. I think particularly what I’m interested in with healthcare is access to the healthcare market and the idea of how being a consumer versus being a patient changes the fundamental nature of healthcare. And, it’s quite interesting, being someone from Scotland, in the UK, where we have a socialized service, it’s quite interesting doing that comparison with your, kind of marketed healthcare in the states. So, that’s where my interest has been for many years.    

Dr. Brian Durie: And so, obviously, you became very intimately involved with the details of myeloma patients, the impact of the diagnoses, and the difficulties often in trying to achieve the best care. And so, maybe you could move forward and explain a little bit of the notion of resilience, and how did that arise as an area of particular focus for you?  

Sue Dunnett: Yeah, sure. So, some years ago now, when I was working, I’m still working at the University of Edinburgh, I decided that what I really had loved doing was research with the IMF and the myeloma community. And, I was interested in how people living with an illness, whether they’re a caregiver or whether they’re a patient themselves, how they lead support groups at the same time as dealing with their own illness. And, what compels them to do that? What allows them to be motivated to help others? And then, are there any barriers to helping others in that support group setting? So, my next project kind of focused on leadership in that area. And, one of the things that I asked everyone that I interviewed, I interviewed about twenty support group leaders from across the USA, was what keeps you going? Because, I think you know, people who are in that leadership position, and it’s not simply patients and caregivers, obviously, are professional services, and people that provide that are social workers, or nurses, or other forms of medical workers, they can feel a certain sense of burnout in that process as they’ve been doing it for several years. It is emotional labor. And so, it can be quite taxing. So, I was interested in this idea of what keeps you going. And, the support group leaders that I interviewed talked a lot about factors which I would have called resilient, but they were described as being quite normal, they would expect themselves to behave in this way, to keep going for other people, to use inner reserves to keep going. So, I explored resilience in leadership initially, so what kept them going specifically as people leading the group, initially. And then, so that was work that I presented at the Support Group Leaders Summit, which is an annual event where support groups come together. So, that allowed me to share insight on how I believe they were motivated and what barriers they face and so on. And then, I suppose the interest in resilience just continued.  

Dr. Brian Durie: Right, I do remember that presentation. I think it did have a big impact on the leaders present. And, this was in 2018, in the summer of 2018. And, at that meeting, we bring together about a hundred group leaders from across the country. And so, I think this did have a big impact and made the leaders and the patients, everyone there, focus a little bit more about what is the meaning of this word, resilience. And, potentially how important it is in addressing all the different concerns and questions, and the ability to keep going in the face of adversity of all types.  

Sue Dunnett: Yeah, yeah. And, I think, I think resilience, I mean it is, resilience is a little bit of a buzz word now, but I think, sort of concept common in that fashion. I think it is because it’s a quite useful term. For me, the idea of resilience is as you say, kind of adapting to circumstances. So, it’s not necessarily, resilience, the important thing for me is resilience is not necessarily about totally overcoming something. Which as we know, people living with myeloma cannot control, they cannot necessarily totally overcome myeloma. So, the idea of being resilient, I think is particularly personal when living with illness. Because it requires so much from the individuals and those around them in terms of the energy, in terms of physical ability, in terms of physical energy, in terms of stamina. And so, resilience is something that I see as kind of a process of adapting, but not that sense of bouncing back. I think that sometimes the idea of resilience is about bouncing back. I think that these profound fundamental experiences, like serious illness, they change us. So, we’re not necessarily bouncing right back to where we were. So, that’s kind of what resilience means to me.  

Dr. Brian Durie: Yeah, very, very, an important distinction. But, you’ve emphasized a few points there, so, resilience is very much an active process. It’s not just something that’s there. Obviously, it seems that some people are just naturally more resilient than others, but for most of us, I think it’s a skill that can be recognized and kind of work on, to try to improve the ability to cope in various ways.  

Sue Dunnett: Yeah, I completely agree. And, I think to learn, whether that’s about myeloma, whether that’s about the treatments or other ways of living with myeloma, factor into that kind of building resilience. And, I think, yeah, I like the word that you used, that it’s kind of an active process there. Rather than, you know, someone is resilient or they’re not. And, also, I like to think of it as being distinct from being positive. I know that there can be a lot of pressure on people dealing with any sort of adversity to think positively and that will dramatically change the situation. While there are some situations which of course can be shifted mentally by thinking positively, but they don’t necessarily fundamentally change, and resilience is not simply about thinking positively. It is much more of a process, of a skill than an attitude or a way of thinking. It is learned rather than if you like, a demeanor you can adopt.  

Dr. Brian Durie: Moving forward from that presentation, in 2018 in the summer, in the intervening months you came up with a new idea related to asking leaders and patients to submit pictures for a project that related to resilience. Do you want to explain to our listeners who you came up with that and the details of this project?  

Sue Dunnett: Sure. Well, it just came to me one day. I kind of, I was wanting to explore resilience more and thinking about how I could do that and how I could do something actually useful and valuable, and practice along those lines for the IMF and the support group community. So, I think I was thinking of the style of communication of something like Instagram, where there’s a quick, perhaps, impactful visual image, which captures an emotion, which captures a feeling, which captures a moment in time. And, I think what I was really hoping for, which did transpire in the project was that leaders could capture an image that represented resilience to them. It’s very hard to articulate what we mean by our own resilience, or what things keep us resilient. So, the discipline of taking a picture of something, which is what we asked them to do, all the support group leaders were asked to contribute, to take a picture of something which represents resilience or makes you feel resilient. So, that, that captured a lot of emotion, a lot of things that actually are very difficult to articulate that we might not have captured for example, by asking people to participate in a questionnaire, or participate in an interview, or even just by talking to people. So, the idea came then to use the images to create a gallery display, like an art gallery, or like a photography display at the support group leaders' summit. The people could walk around, they could engage with the images and then hopefully, share in the collective sense of resilience. So, the idea was very much about individuals contributing to something, which created a sort of community resource, or a display that everyone could participate in at the support group leader’s summit event.    

Dr. Brian Durie: This was a very successful project. And, as I recall, I think there were fifty-five pictures, or thereabout, that we’re sent in. And, they were indeed dismayed at the summit and had little sayings or descriptions associated with them. And, do you want to lead us through what struck you about these pictures that were submitted that reflected people’s feelings about resilience?  

Sue Dunnett: Sure. Well, yeah, going back to the idea of the aim, the aim that I had I suppose was to harness some of the creativity of the support group community, and the IMF staff as well. Because I could that there was creative stuff going on at the support group leaders' summit, people sang, people showed their line dancing skills, and they played piano, they share these ways in which they are creating together. So, another aim of the project was to be creative together and to share something there. And, again, my aim was to create something that would allow people to share hope and their creativity and then hopefully share resilience. And, it did. And, as you say, we got fifty-five photographs, which as they came in, Robin Tuohy, the Director of the IMF Support Groups services, she would send them on to me in my office in Edinburgh. And so, they’d come in via the email or be sent indirectly by the support group leaders. And, sitting at my desk in Edinburgh, so far away, but the kind of emotional connection of seeing the images was instant. So, the images were of all sorts of different types of things. I’m looking at some of them now, they were of grandchildren, they were of weddings, they were of travel, there were a lot of dogs, animals, of course, are so important to us, there were jigsaws, there were plants, there were motorbikes, there were all sorts of aspects of things. And, I think one of the elements that really did work was that people took pictures of things that really symbolized something to them. So, there were abstract pictures, which had a deep symbolic meaning. So, there were plants just beginning to unfurl at the start of spring after maybe a difficult winter, so, that sense of coming back. There were sunrises, so the idea that there’s always a fresh day, there’s always a new start, there’s always opportunity. There were sunsets, in terms of the beauty of nature. There was quite a lot of nature there, in terms of the theme, donkeys, cats, lots of different types of creatures. I think it was interesting to see cooking being of that and I think one of the things I sort of noted about the images was that the images I felt really did create that emotional response. They did make us feel. There were beautiful images of sunsets, nature, mountains, and so on. Some things do make us sort of wonder at the majesty of things that are more powerful than us. So, there were lots of different elements in there. I think cooking was the one that I wasn’t necessarily expecting, but I think, when I really think about it, cooking of course is something very meditative, therapeutic, it can be relaxing, it’s also creative. And, it can be someone’s personal gift for themselves, for their family, that they share. So, of course, it helps enrich an individual's resilience. So, there were lots of interesting things there. And, it really did, it was a lovely thing to have them come over in my email, in my office, in Edinburgh.    

Dr. Brian Durie: Yeah, really, really, lovely, wonderful, pictures. And, a lot of activities indicating that despite the challenges that many of these individuals face with their disease or in other ways, they were able to go to a wedding that maybe they thought that they might not be able to go to, or to continue to cook in exciting ways, or to be able to go on vacation and enjoy nature, or experience, as I remember, an old tree in the garden of one of the leaders, which was an ancient tree that had survived despite adversity in New York. So, lots of different kinds of images that were there, But, maybe, what was surprising to men and two you, I think is what kind of images were not there.  

Sue Dunnett: Yeah, so the images that weren’t there, despite the prompting that could be included, were images of the medical setting, or pharmaceuticals, or any sort of treatments. There was nothing, I would say, nothing medical in any of the pictures. And, I think Robin Tuohy kind of summed that up quite nicely, when I was speaking to her about it. And, she said, “well we’re not our myeloma, the resilience is who we really are.“ So, one of the nice things about the project is it allows people to really get to know each other on a kind of different level, to see the things that might be fundamental in each other's lives through these pictures and talk about it. So, the idea about the gallery meant that people could talk about the pictures as they were moving around and share their experiences of resilience. But, it was interesting about the medical setting, what do you think of that Dr. Durie?   

Dr. Brian Durie: Well, I was impressed with it. I think, to me, it sent a message that the patients were saying that this is who they are, they’re not definite who they are by the disease or the specifics of that. They’re going back to - who are they? And, they are people who enjoy their families, who want to experience celebrations with their families, to experience vacations, and beautiful nature, and to be able to cook a great meal together. So, they were really pointing away from the disease, to go beyond that, and getting back towards a degree of normality. So, it was lovely to see, quite frankly.  

Sue Dunnett: I mean, I think for me, there were a lot of images that really made me think about the idea of the extraordinary in the ordinary. So, the idea of how important our homes become, and how important, you know, everyday hobbies can be, how important our connection to the people who are all around us. And, I think, it’s interesting looking at these images today, as we’re here in the U.K. in lockdown, and thinking around the appreciation of these more simple things in our lives that we can take resilience from, and we can remember how important they are to us in helping us cope with adversity.    

Dr. Brian Durie: Absolutely, and this strong belief in the meaning and strength of life more broadly. I mean, it symbolized that there is an active project to go out and experience life and enjoy life. And, it’s important to include that and get back to that as much as possible. Really, I mean, I have to congratulate you. This was really such a successful and emotional project and really made the groups and the patients think a lot about these things. And, this theme has been picked up in the months since then and, as you mentioned, in this particular time, when we are now faced with a new crisis, this COVID-19 infection, I think this idea of resilience and how do we react it has become even more poignant.    

Sue Dunnett: Yeah, and I think that in the images, the analysis that I did on the images were looking at what kind of individual themes I could see in the images, so I took the fifty-five images and did a little bit of kind of nursery analysis to kind of group them together to see what I was seeing. Breaking those down into three different themes, there was the idea of physical resilience, through the body and renewal, showing strength, showing achievement. And, the idea of mental resilience, distressing, using hobbies, activities as a release, creating space, creating peace. And then, emotional resilience, where there were joy and freedom in the support of others. We may not have access to all these things now and, of course, it’s an incredibly frightening time for everyone worldwide, but particularly, for people living with myeloma for a variety of reasons. I think there are ways in which we can be reminded to seek out resilience in day to day activities by recognizing that the process of cooking or just being with family and friends, of taking a walk, if that’s possible, for people to kind of take breaks to remember that emotional resilience is as important, I suppose, as the physical resilience to the whole act of being resilient.    

Dr. Brian Durie: There is this strong sense of a need to just retreat a little bit to kind of inner space to try to seek some calm. And, we certainly need to try to do that right now. This sort of zen approach, where we, we try to retreat and try to have a rational idea of how we can move forward. And, there’s also the idea of resilience together, and we’ve seen quite a bit of that, where we’ve had group telecons and the like, where the going together of these leaders, and having joint resilience has become very important.    

Sue Dunnett: Yeah. And, I think that this is a very strange time in the sense that we’re all separated, mostly, from our kind of wider networks, and in many cases, those who are most beloved. But, we’re also connected in other ways with our local communities, certainly here in the U.K. there’s a lot more kind of local activity going on, and creating those spaces for emotional aspects of resilience, you know? The idea of caring for others, and that’s something that I also saw a lot in the resilience pictures is the fact of caring for others allowed people to feel resilient. Maybe not surprising coming from support group leaders where that is their kind of vocation, their sense of duty is to care for other people, to set up these groups. But, the sense of caring for others was something that did make people feel resilient. And then, recognizing that not everyone can be resilient all the time, I think, is another thing that’s important to talk about with resilience, is that it’s not always there. You know? In many situations, we do not always feel resilient, and we need to take a break and take stock of that and know that it will return and be replenished. And, seeing these pictures reminds me of the kind of simple act and the people that can enrich resilience in our lives. So, yeah, Staying connected digitally, helps.  

Dr. Brian Durie: Right. Right. You emphasize one point there, which I think is important. The need to recharge. I think that none of us feel resilient every day, and you know, at some point you need to step back and just have some quiet time and recharge so that you can focus and do the best that you can in the coming days. So, Sue, this was obviously, a very successful project that highlighted a lot of interesting and new aspects of resilience. Now, do you have ideas of how this might move forward? I understand that you do have a day job, where you are in the business school and you have other things that have a priority but are there aspects to this that could be for the future?  

Sue Dunnett: Yeah, sure. I mean, I think, well, firstly, it’s important to me to be of service and value to the myeloma community, and particularly, the support group community. Because it’s given me so much. In a sense, that, you know, the data that I collected for my Ph.D. is the reason that I’m an academic. That came from people who are members of myeloma support groups, and who lead those groups. So, I’m forever grateful to the myeloma community for my first job, for the experience, for you know, the wonderful experiences that I’ve had. It’s important to me to keep contributing in whatever small way that I can. That’s why I’m thrilled that some of the support groups have picked up on this idea of either a gallery of resilience, or a PowerPoint, or creating something together, which allows them to share photographs of resilience, to get to know each other better and to celebrate that. Some groups have had galleries and displays in their local areas, and they’re taking it forward in their own ways. I know that one group is collecting playlists, and music around the idea of staying strong at this moment in this difficult setting. So, it’s nice that that has gone forward. For me, I think, you know, I’ll always want to contribute whatever I can in the support group leaders' summit. But, thinking research-wise, I think it is probably important to think more widely about resilience in terms of not simply support group leaders, but maybe thinking about the myeloma patient population in general. So, what factors contribute to resilience? And then, what are barriers to resilience? And obviously, these can be multiple and intersectional, they’re not necessarily linked in the themes that we’ve talked about. They can be around socioeconomic issues or education, or more widely, all sorts of different aspects can contribute to how resilient individuals are. And I think, and obviously, the disease progresses itself. So, something quantitative could be interesting, for instance, a survey to look at what factors contribute towards resilience and what, I suppose, detract from resilience? I think, also, it might be useful for the IMF to consider the role of support groups in resilience. So, mapping how support groups allow individuals, individual members, whether that’s again caregivers, family members, and myeloma patients, how it allows them to be resilient? You know? An interesting question to me is, are regular attendees of a support group more resilient? For example. Or perhaps they’re not? Because, you know, maybe people who are not in support groups are perhaps more resilient in carrying on? I suspect that is not the case. I think support groups must be integral to an individual’s ability to cope and their ability to keep going, and therefore, that sense of adapting to adversity that resilience is. So, I think, you know, even looking at the impact and role of the IMF, and their services in resilience. So, there are lots of ways of looking at it quantitatively, which would derive that sort of, kind of statistical insight, I suppose. That’s an area that, I suppose is newer for me. I’m more interested in people’s lived experiences and how they talk about themselves and therefore, I’m interested in myeloma patient’s advice and insight on how to be resilient. So, I think widening things out to a wider patient population to find out about what is resilience more widely? And then, how do we hone and build resilience skills? And, what part do support groups and the IMF play in that? Because I know that it’s going to be an important aspect of it. 

Dr. Brian Durie: Absolutely. Absolutely. So, this last part, how do we hone these resilience skills? This will be very broadly important moving forward right now. But, I think that the idea of resilience and these concepts have really taken on a life of their own, and I think that this is a major contribution that is going to be sustained and will continue in the myeloma groups here in the U.S. And, we’re certainly trying to enhance that understanding and appreciation in the groups all around the world as a matter of fact. So, this had a global reach. Which, it has been a topic that has resonated, and people are interested in - are they resilient? How can they be more resilient? I think that there’s an intuitive understanding that it’s good to try to be resilient because the outcomes can be better, and that you can do better overall, and you can be able to appreciate and enjoy life. So, Sue, I mean, I don’t want to keep you too long. I’ve really, really appreciated all these insights and helpful comments about resilience, and thank you for making these contributions which have been so important to the support group leaders, and also, I think will be increasingly important for each of the individual patients. So, thank you for contributing to this podcast today.  

Sue Dunnett: Yeah, it’s been a pleasure.   

Dr. Brian Durie: Thank you for listening to this podcast. This has been “Conversations with Dr. Brian Durie.” For more information about multiple myeloma and the International Myeloma Foundation, please visit myeloma.org. 


 


Image of Dr. Brian G.M. DurieDr. Brian G.M. Durie serves as Chairman of the International Myeloma Foundation and serves on its Scientific Advisory Board. Additionally, he is Chairman of the IMF's International Myeloma Working Group, a consortium of nearly 200 myeloma experts from around the world. Dr. Durie also leads the IMF’s Black Swan Research Initiative®.

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