Articles, Blog

Health & Illness in Close Relationships: Unpacking Complexities

February 26, 2020

So welcome those of you that aren’t in com to our colloquium series Just preview the next month on March 13th. That’s a Wednesday. We’ll be having Jaroslav Švelch He’s going to be presenting on cold war video game development in Yugoslavia so should be really interesting So that’s on the radar for Today welcome to those of you that are visiting outside of Com Today’s guest is Ashley Duggan, she is an Associate professor in the Communication Department at Boston College And she studies interpersonal communication and health as you’ll hear more about today And although she’s been at Boston college for some years now has been working on a lot of different Projects she’s making transition into now being the head of the institute for communication and family medicine So I’ll let her speak to that that’s exciting and new and it’s working more with practitioners So she’ll speak for an hour-ish and then we’ll have Q&A we were filming just to give you a heads up but with that I’d like to welcome Ashley Duggan Thank you so very much um It is such a pleasure to be here on so many levels not the least of which is That what you’re getting is like the first iteration of what is sort of a book talk that came really from Seattle when I ca was here with a meeting with This series that’s co-sponsored with irr and Cambridge Press And the title of it is health and illness in close relationships and it’s somewhere like being mailed from Cambridge, press along the way And then the other thing that just I’m not sure this is the first time I’ve done this and I’ll have to play with it I’m one of my new aging answers to life is glasses not just one but two fares in one of those doctor’s appointments where you get reading glasses and distance glasses so which is this and you know, You also get like sent to whether you’re going to seafood Which is my favorite food and get told you gained ten pounds all in the context of one healthcare Interaction that being a tiny little glum. So we live with this in everyday life when people learn that this is my research area, one of the things that always here are stories that are tiny tiny little glimpses of Things in life that are always inherently vulnerable and complicated in some small ways Like we learn how to play with the glasses and some big ways Like we have all kinds of conversations that can’t ever even be had with our aging Society and our ability to better diagnose and our ability to better treat and our ability to manage symptoms We all have stories stories of ourselves and stories that are really of people very close to us and I’ll start with a glimpse of two of mine have been really important in my life One is the story of Tim Edgar who was really close to Amara Adelman and I’ve heard all kinds of Amaura Adelman stories But never actually met her Tim Edgar is seen here with Leslie Schneider who’s also in comm at UConn and this is when the three of us traveled to Ethiopia for this global health conference Nine years ago or about somewhere then we sat in this lecture together and one of the topics was predictors of life length and Then when we got home, there was this online Calculator that Tim did and he said so there’s something I actually need to talk to you about he’s like my online calculator so that I had four more years to live and He is like so my parents both died Unpredictable or somewhat unpredictable and somewhat unexplainable deaths in their mid-50s and I’m kind of approaching mid 50 and so at that point he went home and he’s like I want to do things differently and he lost 45 pounds and He adopted a series of healthier life choices. He kept the weight off He kept his Ultima you know his his other kinds of things until he died this untimely death in his 50s at his memorial there were several people and they offered different kinds of glimpses of Tim’s life and one of the Introductions was that you would learn things that had his memorial you would learn parts of his life even if you felt like you knew him well You might learn different parts of his life that you only knew one part well and health and illness illustrates some of those complexities Another is a story about my mom like a little glimpse of those. My mom was diagnosed with Parkinson’s ten years ago Having a body that’s defined by limits with a fully functional mind has always been one of her greatest fears She loves the beach but one of the side effects of her medications is that she has to completely and totally avoid the Sun She’s discussed for years and years in great lengths and with great Clarity her hopes of not ever going through life with ongoing chronic care And we can remember those conversations from as many years as I can remember Those hopes made sense until they met the competing realities of decisions that actually don’t fit the symptoms People don’t actually really know that she has Parkinson’s she still goes to yoga five days a week She avoids situations that are difficult like walking any distance or going out at night She has a particularly hard time opening containers but even my stepfather wouldn’t know that because one of the things that’s really Important to her in life is to still be able to prepare dinner every night So I’m not actually sure how when I’m not there She gets the tape off of a box or pulls the tab on a package because those seemed nearly impossible when I’m there But she thinks of herself is really a nurturer and this is an important part of her close Relationships in the southern lady and the many roles that she takes on that food is always ready The World Health Organization defines Health, but their Charter implies much more breadth in language that’s indicative of a far broader experience a biomedical orientation is far more consistent with the language of disease as a disorder of the structure or function in specific symptoms This broader experience of malady of disorder is far more consistent with our language of what we would say illness Which really defines a host of social experiences and a social construction in the context of some kind of malady Defining health and illness might at first seem as quick and as simple as having or not having a diagnosis but really understanding health and illness quickly becomes a really ambiguous and complex goal with interconnected considerations of science of technology of philosophy of core values of communicative in actions of all kinds of situations of Psychology and of competing stakeholders competing stakeholders even in our very closest relationships Defining health and illness then requires acknowledging the context of culture of economic conditions of Questions that can’t ever be disentangled from all kinds of core values of marginalization complete mental and social well-being then is far more reaching and calls on additional political and Economic domains that require some kind of really innovative and imaginative Considerations of far broader constructs than the diagnosis and management of disease as a starting place I’m sharing a picture of one of my freshmen. I call her my precious freshman when she wins the national Championship with the second friend of hers who’s coming in second place in the national championship in track and field The who definition is broad and ambitious really broad and ambitious It’s a definition that we might not actually any of us qualify as fully healthy It’s the definition that we might envision as this version of what is healthy the writers of the World Health Organization Constitution defined health as first dependent on the presence or absence of disease and then something that we That we have as a really ambitious instead of giving more tight definitions It’s defined then as a state of being but then misses a kind of trajectory a kind of Process the interplay between the biological and the non-biological the aging population The years we might already half of living with a chronic diagnosis as the norm and the enter individual variability in health processes considered disability as one of the challenges and Strengths of what it means to actually live with an ongoing illness in a close relationship How disability missus the coexisting components? how living with disability we might think of as people having some abnormality that might be measured as symptoms of disease as measured ill but are these people actually ill our people who feel well, but others define as ill are they L do they function well, But do they’re biomechanical markers indicate some kind of abnormality. And is that what makes them well, People can find ways to live really productively for many years following a diagnosis when people are living significantly longer because technology enables more sophisticated diagnosis because pharmaceutical advances allow for treating Far many more of medical conditions people can live for decades and often do with a chronic disease or disability the who definition suggests some kind of definitive illness diagnosis for people who have a chronic disease and/or a disability what about instead recognizing the capacity for people to accept chronic illness or to accept disability as a natural part of the human condition Including within our close relationships when we work with just with the disability advocacy community One thing that we look at is the language that people use for disability Where we have an opportunity to see the social response to disability as the problem instead of the individual limitations We might think of physical health as first diagnosed as biomedical a Complete state of physical health is really difficult and perhaps impossible to achieve Perhaps we’re just one scan away from whatever the diagnosis is viewing health with an absoluteness of the word complete poses and ongoing emphasis on potential Screening for condition not yet diagnosed complicated medical screening in addition to our ongoing screening of our own biomechanical markers One thing I like about this image is that this is an organization a non-profit That’s just it’s called recycle health and what it does is it gives your fitbit’s in your own? Biomedical markers to people in the Boston area who who are under resourced Individuals declared healthy today might actually be diagnosed with disease tomorrow and medical professionals are positioned medical Professionals are really trained and positioned to recognize this biomechanical piece and diagnose disease or malady The broader concept of health and illness quickly becomes evasive and is really missed by everything we know about the definition as fits the World Health Organization definition if you consider the environment as context, then inequalities and social disparities are also illustrated in all kinds of questions about pollution and the environment consider all of the public health considerations of the many places that we see Inequalities pollution is just one of the places that it’s visible, but not yet even included in what we measure public health is grounded on the premise that adaptation and Self-management are important but within the context that health is also a fundamental human, right? Protected by entitlements and it’s also a resource for life. That’s shaped by social political economic and environmental factors These core factors are outlined in reading the WHO principles But less frequently included in the shorter definitional excerpts public health emphasizes population-based health and works on the premise that Changes to the social political economic and environmental factors translate into greater health gains than any individual action When we talk about relationships centered processes in health care, it’s a it’s it’s become, you know a way that we’re Reconstruction the relationship literature Relationship processes in healthcare delivery and this one comes from the Cleveland Clinic and it’s a video that’s about empathy and then it gets you into all kinds of things that if you do work on relationships, you see that it’s actually complicated and even Understanding. What is empathy other than putting it in putting yourself in somebody else’s place health and illness concepts are inherently tied to models of delivery in which the symptoms or illness symptoms on the Contrary are diagnosed and treated the conceptualization of healthcare and medicine to this relationship centered model adds into the kinds of scripts that we ask your Experiences with other people in your close healthcare system and has the healthcare provider consider patients experiences in Relationship centered ideas like Emotions and other kinds of things that are connected to broader definitions of health But it certainly is not a reciprocal kind of place that we think of and close relationship processes So let’s look next at what do we mean by close relationship processes? And how are they inherently connected to health and illness so we’ll go through some of these aspects first of what our close relationship processes Close relationships and illness consider depression as an example I constantly tried to let go of resentments over his poor control and his constant integration and Despair I could feel his depression. We couldn’t live together, but we couldn’t live apart either It was really worse when people would tell me that he’s mentally ill and what I should do is leave him You wouldn’t tell a person whose husband had cancer to leave him We didn’t have good answers, but I knew that we were a couple I tried to let him go But I knew it just wasn’t right I couldn’t be there for him, but I couldn’t be without him either I can hear it in his voice when he was in trouble I internalized how to handle the reality for him how to avoid arguments How to acknowledge his feelings without getting caught up I loved I said loving things about how much I cared for him But sometimes it was just too much for me to take as this little illustration. Lets us see including a the couple with one depressed individual Relationships shift the understanding of illness and illness shifts the understanding of our close relationships When we’re committed to a close relationship, sometimes we work through things that we didn’t envision Sometimes we realize we were less committed than we ever might have considered When we conceptualize relationship science childhood friends school friends neighborhood friends college friends work friends best friends boyfriends girlfriends The fundamental construct underlying that is some aspect of closeness When people describe what makes life meaningful and they talk about their happiness and what they most value people often identify close relationships close relationships in what we understand and in the literature are vital to well-being including Happiness mental health physical health and longevity on the other hand close relationships can also challenge Everything that we thought we knew about our own well-being about our own emotions and about mental health in ourselves and in our close relationships close relationships have some kind of holistic quality that relationships are unique in the kinds of ways that we are connected and They’re more than a set of interactive moments and more than any other complex set of variables close relationships can bring out the best in us close relationships can also be manifest and really complicated dilemmas and contradictions and paradoxical patterns where we sometimes enact and Encourage the very behaviors that we thought we wish to control I’ve tried to actually choose pictures every time that are not just like only the warm side I’ve tried you Have you see the complexity of turbulence as most manifest in all of these pictures? When my students were helping me put them together, they kept finding these versions and I’m like, well, it’s really nice You see that as the version of a 40-year marriage But actually I went turbulence and every one of the pictures and you can just call it the dark side if you need to close relationships connected this really Vulnerable part of our lives to our greatest joys and to also to our really deepest disappointments Colloquial definitions of close relationships capture the joys the heartaches associated with intimacy and vulnerability perhaps songwriters poets novelists theologians and philosophers Have long acknowledged the centrality of relationships to human existence people sometimes describe their romantic partner or to their close friends as a part of me as attached to the hippest soul sisters as the family we Choose and on the contrast Anyone who’s also felt the poignancy of deep loneliness can describe the desire for? meaningful relationships as something that is of, you know a deep longing a Relationship functions on the specific qualities of each person and the unique interaction patterns within this particular relationship This one is from CaringBridge. This is one of my college roommates. They have a baby They had just finished posting all these pictures of her You know being surprised that they were having a third child and then they’re sharing his CaringBridge plan of attack Some indication of reciprocity and the feelings or behavior is necessary in order to develop and maintain a close relationship Closeness with another person can never be done alone Closeness also involves that both people have to understand the closeness I love you, but I don’t want you in my life. That kind of ambivalence isn’t consistent with what we think of as the closeness although some degree of ambivalence exists in close relationships a high degree of ambivalence by either Person does not translate well into closeness over time and sometimes the vulnerabilities of health and illness Can translate into that heightened ambivalence? when we think of emotional bonds Emotional bonds are not just positive emotional bonds but they’re also Negative emotional connections in close relationships people experience really strong emotions strong positive emotions and strong negative emotions within close relationships people experience the mildest ranges of of contentment annoyance and anxiety to the most profound Experiences maybe more than we could have ever imagined of love rage and despair With serious diagnosis emotions can be intensified and complicated by the ongoing ongoing ongoing demands of treatment among varieties of love a closely associated with close relationships friendship and compassionate love come Particularly connect to the self-sacrifice that can be manifest during the ongoing illness trajectory Dimensions of respect might be observed in curiosity attention empowerment and reciprocal and validating dialog emotions might also be to be suppressed over the course of illness, although sacrifice can be good in Relationships not all sacrifices are equal some sacrifices includes them including some sacrifices connected to health and illness have some kind of feelings of joy and others leave lingering feelings of frustration or resentment that Distract from the relationship quality over time Some of the things that happen in illness can perpetuate the insecurities that already existed in relationships One of the consequences of understanding how dyadic messages contribute is that sometimes? Expressing something that we are insecure about can translate into this feeling of walking on eggshells So it’s something that we need to avoid and the complications of the hardness of making choices around Diagnosis the doubts about the relationship the doubts that might have already been there before the diagnosis the ongoing pessimistic interpretation of the feelings the not being on the same page about there was the pessimistic Interpretation of the feelings with a diagnosis or just how long we have to keep renegotiating our own Responses and feelings about the diagnosis can have these kinds of qualities for both the individual and the partner So there is a dark side of close relationships Communication and has this paradoxical sense? sometimes even in everyday health kinds of behaviors like we see it in the research about weight about eating about drinking about drug use We see it perhaps most poignantly in substance abuse treatment with this with this poignant example of communication in the family system is connected to substance abuse treatment where we see these relational facts that have some kind of reciprocal effect of the ongoingness of the things that I’m doing in the relationship that might actually Be more hurtful than helpful over time If we think about the attributes of health and illness context for close relationship Context what we’ve done is flip the lens of what we see and the health literature I’m trying to bring in relationship processes into something that’s actually already a tightly tightly scripted context lots of attributes of health and illness for the close relationship context health and illness shift the everyday context and they shift our everyday explanations for what our close relationships are they shift the processes by which people diagnosed with a serious illness might be fine at Some times and not fine at other times in conceptualizing in thinking and in talking about life events People approach life as if we go through life with some kind of predictability about what will happen One really important part of a serious diagnosis is that it changes that assumption and instead makes us see differently sometimes forces us to wrestle with and sometimes makes us back away from the fragility of Recognizing those choices and not as not necessarily linear Researchers who approach development and testing of theory as if we can account for these kinds of connections well, we know that health and illness in close relationships is that these unfolding vulnerabilities very rarely can actually be predicted Instead the trauma or the disaster of the serious illness shifts are core in an instant in that image It’s something changed in a very moment where everything that we thought we knew about ourselves Instead is shifted on foundational assumptions of the very explanatory frameworks. We thought we’d lived with attributes for the health and illness Context than shape and shift the relational Processes as the relational processes shift the ongoing assumptions that we make about the health and illness Instead it becomes this demanding Taskmaster so to speak so that illness diagnosis shifts roles shifts relationship choices and shifts relational assumptions in challenging assumptions one of the things about fragmented uncertainty It’s not just a kind of uncertainty or multiple kinds of uncertainty and we’re not just trying to reduce uncertainty we face these ongoing Fragments of certainty almost like we face ongoing fragments as we see in people dealing with complicated grief fragmented uncertainty yet many turning points and in sometimes invisible and Increasingly visible or invisible in our close relationships aspects of illness and these pose ongoing complications for coping Romantic partners might shift from passionate and compassionate. Love social support functions might shift from nonlinear needs and ongoing renegotiation as new issues continue to arise choices about disclosure shift with the changing needs sometimes in response to Stigmatize choices or things that come out and the vulnerabilities that we otherwise didn’t need to share in our relationships Couples drift from moment to moment Sometimes embracing sometimes accusing Sometimes people count on the illusion of control while ignoring the ubiquity of chaos The better to chart lives with a sense of continuity and security We might feel like we have it all figured out when to buy our first house when the baby will arrive when the second baby Will arrive we plan on satisfying careers We travel an on traveling growing old with dignity and regret and retiring with some kind of security in our income Instead some of us separate or divorce Enduring we and some of us endure really boring jobs and wind up with cats instead of kids but that’s not the script that we write for ourselves and Never in the story. Is there a placeholder for the intrusion of illness Sudden trauma or a terrible diagnosis slams into us like we think of an image of a stray bullet it Penetrates our core and an instant in the space between two breaths it since fade our dreams it can change these Idealized image of our partner and take them off the pedestals and instead immerse us and the reality of our own fragility The patient is actually not the only cause Not the only causality illness also attacks our belief in the future and our promise of what we thought love was Will illness strikes it becomes the hub around which the new life revolves around which activities are tethered Around which our sense of time has changed It determines how far we can go from home whether we can contribute to work whether we can eat the foods that we enjoy Whether and how we can be intimate with our lovers When patient but when our partner becomes patient as of wearing a carnival mask the once familiar fast mask their once familiar Face can become a somber profile of disease It can be this demanding task master as the exhaustion Continues with the ongoing pieces resentment can also replace compassion and passion and humor can vanish Sometimes it’s impossible to come out of this dark humor by separating the ideal image from the from the new body In the changing expectations We sometimes find a new normal and then another new normal and then another new normal medical changes financial changes Logistical constraints all require this kind of immediate attention and close relationships can be the unforeseen Aspect of what is lost in illness or injury we cannot remake the foundation as it was before the illness the health crisis requires a Recalibration of close relationships which assumes that the close relationships can go through the recalibration health and illness Considerations shape relational processes in the requires that that we shift to diagnosis and think of the ongoing progression as a trajectory finding accepting some kind of new normal shifts the roles shifts the Expectations the body might shift from healthy to sick in a short amount of time Close friends who’d been connected socially before might learn to administer medications the new normal might be so Drastically different from what we’d hoped the new normal might not feel so normal at all When people cannot do things for themselves, they might depend on others We sometimes depend on other people that aren’t our very closest people because they’re the ones that can do it with us Um, you might imagine that this is like a comfortable space in mind that I regularly sit with people in treatment, right? It’s I organize who is comfortable with these treatments and being able to adapt to Things that we can fill in that we become, you know close in for that amount of time Which also illustrates again the inequalities of how relationships Supports are also manifest. So it’s not just the inequalities in the diagnosis and management it’s also the inequalities in how relationships can buffer or Relationships can actually exacerbate all of these challenges with health and illness outcomes although we have plenty of evidence for so for Relationships for social networks and for communal coping as connected to better outcomes relationships can actually buffer or They can exacerbate health and illness outcomes. And then I’m going to we’re gonna go through two examples of how that actually looks and how and the two examples we’re gonna look at are type 2 diabetes and physical disability because they give a breath a brief glimpse into the complexity of health and illness as interconnected with the broader context of Relationships which co-occur with these extensive considerations of social enough social level networks and also societal level attributions and things that are That are inherently also connected to by us Type-2 diabetes might be interpreted as shame or blame the idea that people developing the Diabetes then have knowingly make bad or maladaptive choice And I said I’m intentionally using these languages that are laying that are labeling because of you know The places that our mind goes in the language of labeling. I’m hoping the earth sensitive to that language and labeling We also then might see that diabetes is a social and environmental problem as a crisis around neighborhoods Loaded with fast food chains liquor stores and billboards advertising junk food and limited incomes public discourse around disability at worst focuses on deviance and dependence in some of our studies one of the things we have is they come in with their partner and Inevitably all you know in like more than 90 I won’t say all of them in more than 90 percent of the interactions They over the doctor over and over were occurs – who’s your caretaker as opposed to? your being the caretaker for the child or your you know, being able to take a role other than dependency If you’re not familiar with it already one of the places you might look at for Looking at diabetes as embedded with some social structures is the bigger picture campaign. Are you familiar with that out of California? They they take the idea that type 2 diabetes used to be known as adult onset like diabetes and that diabetes is now a Disease that begins in childhood and the prevalence of diabetes in the United States has doubled in the last decade particularly among black children and tripled among American Indian children Black and Hispanic children have 8 times the risk of developing the disease compared to others faced with these numbers then public health experts and art Educators have created this really interesting and novel approach that we’ll be surprised if some of you aren’t teaching in your classes by this time next year that brings agency to teenagers in really doing some kind of slam poetry and giving voice and Agency to diabetes is not just a medical problem related to poor diet and lack of exercise But as a social justice problem tied to stress poverty violence and limited access to healthy and affordable foods The campaign is called the bigger picture and it teaches these young teenage artists They have their there are projects all integrated with school systems that diabetes is not just a consequence of an individual lifestyle chores choices but a broader dysfunctional system that constrains and shapes behavior that forces and reduces costs of foods, that would be healthy that incentivizes marketing to people of color that um that allocate physical activity opportunities That perpetuate poverty and stress all in ways that disproportionately focus diabetes risk within already vulnerable Populations the system then directs attention to the structural causes of the diabetes epidemic and youth particularly people of color and it taps into adolescents deeply held values that social justice Resistance to manipulation and desire to protect their families and communities and their drive to have a voice Gives them an agency and effecting change Disability next considered disability and the social expectations and limitations that we have around sex When you’re disabled and I’m using that word on purpose because it’s what’s used in the article that he intentionally uses the two things that people that you the two thinks people think that you can’t do or fight and have sex So I’ve got a black belt and I’m really good at shagging So this is multidisciplinary performer who explores the connections and performance between disability entertainment and sexuality and again I’m using disabled people’s on purpose because it’s consistent with the article disabled people’s sexuality has been suppressed Exploited and at times destroyed over centuries Images of disability and sexuality tend to be absent where disabled people are presented as asexual or else perverse and hyper sexual disabled people are rendered impotent and sexless by disability and Seen as unattractive or vulnerable to mockery and exploitation again note that disabled people is is because is used in the article that this quote is taken from And you think of them the epidemiology of how we connect social conditions to influence health? other kinds of places that we see Disparities we might think of in terms of intergroup orientation disparities and health and illness disparities in health care as they Co construct each other and we might understand this connection between relationship characteristics as also within the social economic organizational and interpersonal context including the Doctor-patient as an inter group context and the levels of difference that we might also see as intergroup differences That then co-occur with different incomes different education less prestigious jobs as also at higher risk for chronic disease disability and premature mortality I’m wanting us to next consider the role of the physical body and the language that we use for illness and the way that the physical body changes in close relationships with health and illness these these Images come from the saving faces. It’s a it’s a series of paintings where It’s an integration of art and medicine where the painters come in and paint the patient’s before after and in some cases during Facial surgery and what I like about these images is it gives us this kind of sense of the way close relationship processes? involve the body and the mind stories have how we feel in our emotional state are Manifest in the physical body as an instinct of knowing as an intimate and dynamic relationship between the feelings and the thoughts We consider illness as inherently manifest in the body But then we introduced some kind of aspect of the physical self that we miss in the language of diagnosis And that’s in some sense what the body knows but what medicine can’t name? I Remember the soon after my mother died. I developed a case of frozen shoulder It was in my left shoulder. It causes stiffness and pain in the shoulder joint and it occurs for really seemingly No reason, my doctor told me that because my shoulder was frozen There must be adhesions or scar Tissue that were freezing up the shoulder joint and probably my body lacked something So I’m kind of fluid needed to lubricate the shoulder joint I asked him what causes this and he couldn’t say because medicine doesn’t really understand why it happens But what he could do is just refer me to physical therapy I like to understand why things happen and sometimes medicine can’t just tell us that When we have some kind of sense of what is going on in the body it also gives us a sense of bodily doubt where the embodied experience of illness makes us break down the expectations for normalcy of being able to go through a day and not being able to really trust that the body is able to feel the senses that we have in being able to like walk through a flight of stairs without questioning or we’re gonna lose our balance or It’s different from questioning things like tripping or feeling exhausted the end of the work It’s a it’s a fundamental doubt in being able to trust the body Illness is also manifest in this body where we didn’t realize how How transparent the body was until we experienced symptoms in the body and then the body becomes the carrier of these kinds of experiences so that no longer is Transparent and it poses on kinds of all kinds of questions of what the ongoing meaning of the body is time and oh That’s the meaning that the enact the the experience of living in the body as a characteristic of the human experience That’s shifted both in close relationships and sometimes being able to not name and sometimes being able to name But in not trusting the physical sense this body disruption can then can just inherently change the tacit sense of being able to trust in one’s own body as Well as being able to trust in the time and space of illness Illness as this embodied experience as manifest in how time and space change in Health clock time is scheduled and predictable. It’s scheduled around what we want to do with our lives. It’s scheduled around What’s predictable? and the rhythms over the course of the day when we know we do better in the morning or when we do better in the evening and carrying out medical Routines instead we can involve this need for accurately attending to clock time things become Before and after diagnosis things become before and after treatment things become around the next appointment Things become extra time invested in necessary activities that now cut into the leisure time The space has also changed in a way that in Health space is not that not bound but in illness you can move We can no longer move through space in the ways that we used to be able to take things for granted Sitting up can be a chore reaching out to reach something can feel like a major accomplishment Objects needed to be need now to be within reach need to be You know strategically placed so that the person can sit or hold an object with us with assistance as they move through a room The body can feel fundamentally alien it can feel like this is not my body this body has even less me a sense of body alienation where we don’t really understand the self anymore as in our bodies in Expo cating illness as embodiment and considering this holistic view of embodiment we gain a different sense of the concept of what bodily doubt is a different kind of estrangement and attachment a differentiation between the self and the body In everyday interaction, you might just deep think about how the backless gowns translate into this in harder interactions We might think of the physical and cognitive effort for just dealing with illness and surgeries and the physical consequences That give way to the dualism then between the body and the self in Relationship research and in communication research. We have a couple of different ways We think of relationship theories as applied to illness transitions and what I’m gonna do on these is just give you a really brief overview because in our world these are the things you already know how to most easily find and I’m trying to do instead as some more play around things that may not have been already, you know connected in these kinds of ways Relationship theories as applied to illness transitions we might think about Dilemmas about when to share about how to share information about illness dilemmas about whether we’d want to go on a date with a chronically ill person about whether the complications of the chronic illness might just be too much about when we disclose private information about relational instability or Turbulent erupting because the process of navigating relationships now involves a different kind of uncertainty and vulnerability interdependence, and if you play with just some of the Some of the disclosure of dilemmas as they fit The the ways we think of these questions you might think about like the sharing of being HIV positive in dating Having a different a number of different people to date but at what point do you share the question? And I’m three theories that you might look at for where you can already find the information and if you want like a summary of the stuff that’s already been done with these theories you might look at interdependence theory where we’re co-creating Behavioral and cognitive understanding as shaped by another person a cornerstone of our relational processes I’m happy to share the summaries of these if you’re wanting like already done summaries of these another one is relational turbulence theory where you think of relationship qualities, there are Exacerbating the experience of the negative emotions that might promote negative cognitions and might then be calm polluted complicated between parties Relational turbulence is then manifested more frequent conflict more frequent and intense emotions and heightened relationship thinking Communication privacy management theory would look at how do we change the rules and the contexts around Who knows what and with whom the information is shared and how different kinds of diagnosis can shift the rules for that and then of what I’m wanting to think of is what’s missed in the ways that we Traditionally think of theory we think of theory as the doubt is applied and how the rules change and that’s really really helpful But I’m wanting us to then go back to the reason we started with this broader sense How do we actually do co-generative processes between all that occurs in health and illness and all that continues to emerge and health and illness and close relationships? The end goal it changed me what I actually thought I was gonna end up doing when I did this was interconnecting like we see, you know different kinds of models of how to think of different kind of constructs and instead I ended up leaving with this really like I did this really Broad-based that I think I’ll never go backwards from of the idea of things having to be inherently Co-created Co-generative and systemic these stories that I shared the beginning about My mom and Tim as well as the stories that we share in our own sense making give us some sense of the complexities but if you think of those as then having to be Co-created not just with the person but within the relational constructs and within the health and illness Trajectories it gives us a sense of the way we can listen to the process of the body and the meaning making and also the new self and the relationship to the body as it changes with illness Sometimes these changes are carefully measured and medicated as is the case with my mom’s Parkinson’s that you wouldn’t really need to know She’s done a really good job of setting up the whole house that she can go through and have what she needs always there Sometimes these changes might be some really Deeply internal knowing in the waste that Tim may or may not have known that something was going on with his body. I Especially like the image of engaged theorizing as a good conversation or a close friendship that lets us find something within ourselves That it’s there But that is not yet manifest there where we put the inherent knowledge at risk within being able to see the different kinds of vulnerabilities instead of just applying the theories and looking at how the theory then changes a Recent conversation I had with my mom one of the things I’d shared with my sister is that I had some concerns about my mom Going into a place that you have to go in healthy and then as continuing care and one of my concern about that is that she was moving into it in Georgia where my stepfather lives and I had I had clearly mistaken. I my sister had said what are your thoughts on this? So I shared my thoughts and I very clearly Mistaken that my end goal was really I wasn’t supposed to have shared my thoughts I was really just supposed to provide support right these places of enactment that what I wish I’d done is first gone and like Been with my mom in the interaction instead of you know, she’d shared the she’d shared the interactions There was some damage control when my daughter and I showed up Flannery O’Connor talks about in literature that literature wouldn’t be possible in a determined world planaria O’connor also talks about not being able to know thoughts until I see them written We might even think about that and it’s one of the things we find in our having doctors. Keep journals we videotape a lot of interactions and then we have doctors keep journals about what they see in the interactions and one of the things that we keep finding as a pattern is that Sometimes people don’t know even how they feel about the interaction until they see they’re writing about the feelings Do we know how we feel about that? It’s consistent with some of the some of the literature that we have in the field I like the idea really of like the mirror and mirror image where if you put two mirrors together you see ongoing images of one in the next and the next and the next as this what do we think of as systematic and Co generative a Systematic understanding really means that the process is generative the process itself can Recognize the way that the tensions the dualities between the close relationship processes and health and illness are generative in and of itself instead of just Continuing to connect different kinds of models we also think of in this way thinking of co-created where it’s not just Understanding what we do know and how to better understand what we do know with tighter diagnosis But we can also see what do we not know yet? co-created theory then engages the complexities of the part of the subject matter that Continues to evolve and change within a subject-matter of both close relationships and health and illness But where it still has some kind of mystery where we can engage Mr. E the the unfolding the parts of the subject matter that we do not yet know the part of the selves we do not Know the parts of or the relationships. We do not yet know how then this emergence is sometimes manifest in the body and sometimes manifest in new aspects of the relationships one of the things that one of my favorite Co-authors talks about is that one of the outcomes of she is the shoulder pain that’s made her no longer able to practice medicine She’s like what I’ve really realized in. This is how much my spouse loves me and she’s like that’s actually been a very Different outcome than I ever would have anticipated We also might think of the manifestation of the multiple lenses as the nonverbal context existing alongside What we think of our more tightly Illustrated verbal things set up. Oh This is one that actually this is one that kept me from ever thinking that I liked systems before it’s This is first acknowledging this change of feeling states This is the complexities with an academic complex systems perspective My my friends asked my kids at some point in this writing What is your mom’s favorite book and they’re like, well, you know, I think it is this book called handbook of systems and complexity and healthcare and it’s this model and I’ve heard this guys speak several times because he’s around Boston and basically they put together a conference but it’s what I always thought that complexity would look like, you know, there’s so much going on here that I think Oh hack just There’s all kinds of stuff in the book is a great start But I feel a little Like this place of oh hack and then one of the places I found in the book that I did love is distinguishing complexity study and theory of how things are connected as two different kinds of ways and one is the Albert Einstein quote that the world will not involve past its current state by using the same thinking that we have that created it The way we theorize and the way we talk about the world is some way of being in the world the behavior of complex Systems components allows the context to vary and to be Co generative with to the context This image helps us illustrate complex, but not necessarily adaptive systems in the handbook of systems and complexity they have this really nice image of distinguishing between two ways of doing systems and complexity and they talk about the first group coming with an understanding a talent talent and high-level math to offer Possibilities of really high level mathematical modeling of chaos and complexity. That’s the one that I will leave to them to do and then the second group is Motivated by understanding chaos and complexity as a metaphor to make sense of the experience of caring for patients to reunite the complexities that we used to polarize as the Distinctions between art and medicine and that is the one that instead of going from you know The version that might need more mathematical modeling. We then recognize productive tensions in the ongoing Understanding between close relationships and health as an ongoing productive tension recognizing this possibilities then lets us see the multiple lenses can to continue to emerge sometimes in context sometimes in relationships sometimes in finding new parts of the body It then becomes where communication can act as the emergent property in which the close relationship someone tries to Articulate the aches and pains and in feeling too tired to engage and the close friend or relationship partners words or nonverbal Context or expression of empathy or understanding and or resistance or Confusion or commitment to conquering the system’s become very different things in their communicative action So three images that give me also a sense of how these fit together These are three images all from Naples, Florida which is one of my favorite places that I’ve always spent time after time with my mom at the beach and this is what I You know we think of us as we’re on break Systematic understanding then is the same pier, right? We’re communicative processes here have these clinical encounters that don’t just focus on the patient or condition but Co emerge openness then to the emergence requires a Capacity for patterns that can’t be predicted and they certainly can’t be predicted by more tightly scripting as we see for example in Electronic health records tightly scripting in all the relationship kinds of questions, right? it requires a way of thinking of design so that we can see how this peer and This storm or this piece we would call storm or the surfer might indicate some kind of non-linearity in the interaction continuing to wrestle with the understanding and the ongoing decision-making so that the decisions that we make Carry with us the context of the past but also the emergence and responsive Responsiveness that can be manifest in language. They’re sometimes really subtle. They certainly are not Done better with tighter questions. One of the things that we find is, you know, like what you know, like we’ve done on electronic medical records we’ve tightened in the way that we ask the question where the understanding might actually be so subtle as one of Tim’s ongoing questions was When he would say tell me how you really feel about that What I really knew is right you get it You don’t need to understand any part of the way that I go through the world But you’re able to just hear the tell me how you really feel about that and it was a teasing me about it Then we see this kind of non-linearity is a key property of systematic processes is that this non-linearity allows for the kind of Co emergence and understanding the Co emergence and decision making and in connecting the trajectories with the close relationship processes If we think of emergence in close relationships than we’re attending to the generative processes and were able to attend to the relating and Also the potential dynamic new ways of being in close relationships This is the book cover and this was a student who was in my interpersonal class last spring who when I said Can you bring somebody that you have a close but kind of complicated relationship with in 10 minutes They sat right down here and you could tell they immediately we’re diving into you know all these kinds of things of past history and I’ll You can fill in whatever the context is, but that it captures both the closeness and some form of turbulence It it means that the logistical and the clinical variables don’t ever completely define the boundaries of this fully co generative system of what the Potential is that’s outside of the closed illness So with that I’m closing with some form of the of the book cover on health and illness and close relationships this project where the writing has certainly changed my my way of thinking from interconnecting different kinds of theorizing – how are things Generative and how are things generative? We do have this new place That’s the Institute for communication and family medicine with the co-director of that is this guy who created one of the systems in the I’ll call it in the past in the in the kind of recent past that he’s looking for something of how does it go forward and Created systems of what is evidence-based medicine how does evidence-based medicine with the best predictable evidence and being able to not be the expert in all of the evidence fit with closed relational Processes and what we’re trying to do that is have ongoing reflections and videotapes of the encounters be a learning system that incorporates The set of family medicine physicians that we have that’s like 300 in the New England area So it seems to me when we’re thinking about trying to think of health differently as other people are And even that is, once you start to go in there you just start to realize how hostile that is almost. but it opens up all kinds of things to think about and it seems like you wanted to look at the interplay between health as define illness and Relational processes sounds like learning more about health from doing that. You also learn about relational processes So what are some of the things that if you’re teaching interpersonal rather that is health specifically How is it changing some of the ways that you’re talking about Interpersonal? Some of them are obvious but in some really fundamental ways how did it also change? How I talk about interpersonal? Yeah. Oh, I actually I love that question I’m one of the things that I find is I find myself saying okay So I have to I have to do this with you and here’s how we go And here’s what Theory X says, but actually I would say that You know Here’s the cognitive answer to how we how we recognize Feelings as the cognitive feelings and feeling response as the cognitive Explanation for needs not being met and I would say one of the things about then recognizing you know the co-construction of that is that when things are ever sometimes even when they are what we expect when we leave the space for things to continue to emerge we can find things within ourselves that we didn’t know how we feel and that then sometimes the finding language forgives us at one sense an ongoing capacity to articulate better Emotional complexities that it’s not just a feeling but I’m feeling you know jealousy as combined of these different kinds of pieces and I both am worried about losing you and I Can’t imagine actually having to take the kids to school every say every single day by myself at the same time, right? I want to be these dual pieces of both ends Yeah, it’s let me it’s let me play with this piece of you know In mindfulness and in in those kinds of languages where we talk about, you know The the state being something that we can notice and then move past. It’s made me adopt far more Noticing and then can you move past and are you ever finished noticing? Yeah Yeah, the whole thing about expectations too are really interesting And the story and narrative we tell about what our own lives are going to be like or what our relational lives are going to be like. and it doesn’t even have to be through illness and the same things you apply Here and there are going to be these things that break Expectations and being able to talk about that with kids especially in college before they’re at their biggest arcs of their relational lives to understand that that’s normal whether that’s going to be a transgression or whether that’s going to be illness or a job change or poverty or something else like that Upheaval is going to happen And you know I, when I play with what’s different in illness It’s it has all those same kind of vulnerabilities that are similar to Change in college and you know all these kinds of choices and the difference in illness is that we don’t in it’s we don’t anticipate The other things are the same though I mean that’s what it made me realize is that when you’re describing that It feels exactly the same not exactly the same because of the body aspect because of some of the uncertainty around it but I think that that can be there’s a lot basically gonna drop. one day it just dropped and if you didn’t see it coming and it may have something to do with the other person or it may be coming from the outside but I think that’s the norm that we don’t necessarily talk about I mean I know with relational turbulence there is some of that conversation but then the norm shouldn’t be this arc Right? we’re going to expect this specific kind of trajectory We should sort of expect this and talk about relationships like this So it gave me a lot to think about. Could you talk about some of the opportunities and challenges of co-generation and co-construction around invisible illness? Yeah So that one right? pain right? pian is such an example and I also think you know in the in one of the questions I always look about that is um, you know, Your stuff about the invisibility of not knowing family relationships, right? it’s it’s something that unless you tell someone but when you tell someone then they still have a Boundary context within which they think they have some meaning of that right some of the same kinds of it’s a great example of same kinds of parallel processes, right where Hmm even telling you more words around the vulnerabilities of that Reconnection right? So invisible illness is one of those things where Like pain, right? There’s no there’s no Objectivity around a pain scale and there’s all kinds of writing around the pain scale as an illustration of The best we have is my comparison of language of experience today with my comparison of language of experience with tomorrow and the gentleness or the subtleties of the co-construction might be manifest in when I start to share something with you about, you know, the intensity of the pain and I experience Even a shift in topic or a shift in you know something that feels Invalidating I might share less and be able to do less with you about that experience of pain right where when I see Some kind of piece that might be far more manifest in the subtleties of what’s going on in your facial response I then feel differently able to dive into and understand with more complexities the experience of a physical sense of pain Right, which might be far Similar to what I’ve read about your pieces of like what does it mean to re Reconstruct the relationship when you come back into a family? Yeah it just seems that like when you bring other people into that process we don’t have language for it right? just like You read the only scary stuff, right? if you don’t have language talk about how much How many obstacles that creates in that co-construction process even though you’re already co-constructing cause you’re together Not having language for it is something that we already have in our language for how to be in communication scholarship being able to be with and Co-construct understanding is the piece that might be the experience. That’s not yet recognized right the nice friendship where the friendship where the being with Someone and hard times and silence means we don’t have to give this Such words or at least we might not have to give it words that feel complete or finished at this time You showed the image of a book cover Right? All of that’s really interesting that these are young adults Their relationship, I’m not sure what their relationship is that’s what some of the images, others were obvious Mother and daughter obviously, like people in a romantic Relationship but I’m curious about How this manifests differently in different types of close relationships romantic relationships versus parent-child versus siblings versus close friends in most of what you said even though the examples were varied it seemed like those were just collapsed close relationships but I’m assuming there must be some differences there So I was trying to play with all kinds of things I was trying to first take out parent-child or doctor patient or things that are non reciprocal right? So you then assume that you are able to keep renegotiating within the piece of what is closeness, right? Parent-child is just differently tricky, right? I’m always going to be You know revert back to some part of me That is the part. That is in, Georgia You know that is in rural Georgia when I’m back in that relationship with my mom because the parts that are you know Far hardcore, you know the academic parts these all kinds of pieces that don’t fit the do you see what I mean? There’s these pieces that are different than reciprocal right? They’re the kinds of ways that different than reciprocal is manifest one thing about illness that is different from other kinds of close relationship processes is this substitutability function right you really can have and I really am very in some ways like far more comfortable in a place in something. I can have a kind of tumultuous relationship with someone At my university, but when they have a heart attack, they know that I am more comfortable in the hospital then I am in my department and that is a really Comfortable space and I can sit there for a couple days at a time and do the closeness and vulnerability that the heart attack involves Because on some level it’s a you know, it’s a constrained context of all those pieces Several times that I you know The who becomes your person that says what you in health care that people talk about things like my spouse I can’t go with her. I can’t actually see her being that so I have tried I had was an intentional decision of kind of collapsing those but I also get the difficulty of that and In some relationships the need to have been you know They are through the parts that were that kind of vulnerable are really important and how people do that relationship I also imagine that the shared knowledge for example Oh I have a friend that also had breast cancer I’d love for her to be my support in these particular ways would trump other types of relationships for a particular kind of means And I look at I’m, you know have this group of women that that they they seem particularly close they’re really just neighborhood people that when you look at them you wonder Why are they so close? and then I know the back story That I know that they actually kind of got to be that close because one had breast cancer and over the course of the group You know six have had breast cancer Right and that is a different place where even though on the surface. All we’re really doing is sharing Are you going to the nine o’clock class at the ten o’clock class, right? The piece of they have been the ones driving each other to those appointments and sitting with each other and all of the relational stuff that unfolded because all this Messy stuff was going on in different parts of people’s lives during the course of the time Right like these people couldn’t get those needs met with their typical close relationships so they go to a support group Maybe and I would say both ends so maybe we aren’t getting those needs met so we go to the support group or the support group gives us some context for sometimes how people are Sense making around something that is new for us Right the support group may or may not then go a direction that feels different than my choices or my next piece of something unfolding The unfolding as a life-giving kind of flourishing unfolding even if it’s not easy okay that makes a little more sense as I’m thinking through I mean it’s great for theorizing too, alright well this is about reciprocity close relationships this is how that unfolds, it’s kind of nice versus the spouses and partners Yeah, no I would say it probably is not how it works with partners and probably is not how it works with Right and what we know, you know, you talk about families families are certainly not always closed families are all kinds of things that might be closed because they’re all you know all kinds of things that the substitutability and health is about the place that has a need to be met, but certainly You know families are another example of we we have these Expectations where the expectation of first the end goal would be treatment Maybe the end goal is actually one of the things I know my mom does not want is to actually ever know She has a diagnosis she wants never to be tested and measured for anything ever again And she will never I hope you’re never watching this bud It they they’re just not on the same page about that and haven’t been for the like the last more than 10 years And so it’s something in their relationship you agree. We’ll just never talk about this anymore right and on some level my Ability to like not live there and know that that’s the answer means I can carry the you know hit so to speak for whatever those decisions are around something that’s inherently complicated because Okay, because I can and My sister for example like needs to be she needs that relationship to be always supportive for her cuz she sees it as I do love him. I care for him much but she sees it as the father figure who needs to always be You know filling some pieces of father figure pieces that she just needs to always be you know more warm than I have a need for I can if I can find the warmth from it’s not he’s not warm, but you know, I I’m totally Not happy to happy is just as the closest language. We have I am totally willing to Be the one making hard decisions for people in in several of my women’s groups of Close relationships because then I go home and the spouse hasn’t been the one who had to do the hard thing That idea to sort of focus on quality rather then type of relationship just made me think about a number of things and you were talking about the example you were talking about parent-child and I assumed you were going to talk about you as a parent but you were talking about you as the child caring for the parent which made me think that there is a sort of interesting reciprocity not even all Families not all the relationships but assuming that they stay intact to some way And as a child is growing very unequal people the parent does much more than child But there is a sort of expectation that at some point the child is going to do Much more caring for the parent and so sort of this lifetime to give them a whole lifetime That is actually still going to be a relatively equal relationship in terms of caring in beginning if you look across the entire Lifespan and I have never thought about that and I was also thinking about sort of the support group thing I think that some people like the support group because It gives them a chance to talk about things other people who are going through it Everyone is getting to talk and everyone’s getting to listen so it’s very equal But when you are in an illness Situation and you feel you’re being that over benefited in are you you’re asking for them? You need a whole lot more at that time and the other person has to give a whole lot more I think sometimes we want to move into a space where we don’t feel that inequality so that the support group because we’re not asking for our friends and our family our partners to do more by listening to us or to help problem-solve with us – So those concepts of equality and reciprocity as qualities and relationships if I could make it much more theoretically and practically and What is it like a parent-child? What is it like in husband-wife spouse Question yeah first the comment is thank you. This is an important conversation that you’re bringing forward for us and I’m just curious because I work in the healthcare system and Just wondering what your experience was like as you got to know the providers and healthcare professionals to take on this work for bringing interpersonal communication into a healthcare setting and collecting the data you needed and just curious whether their mindset is quite different than one of the communication scholar and Remember, I’m also in Boston works like healthcare Mecca and boy has it been a steep learning curve on so many levels Sorry, did you finish your question? Yeah I just want to hear your take on what hurdles and successes you’ve made as you’ve navigated those Couple things I I was telling some of your grad students at first coming from the University of California system Where we go in you’re part of the University of California system Or I’m part of the University of Washington system where you carry some kind of cachet with you some kind of trust is Probably the more, you know, we trust you because you’re part of the system is not the case in Boston because in Boston You know, there are already six med schools And I’m not one of them and all the hospitals are hourly affiliated with the med schools, and I’m not one of them So the steep learning curve part of like feeling like I was cold calling on unlike selling myself was a really steep learning curve and what I really like to do and find helpful is to like Bring audio recorders and video recorders and do both the science. They modeling behind the sets of a zillion nonverbal behaviors and thinking qualities of the face and the voice in the body has also connected to the transcripts and one of the things I very quickly learned that was really important to me was that There was an Co-generativity is now the word I would have for it but people are sharing Things with me that are never going to be my story to tell so I found very quickly that I never would move forward with anything without always returning to the people with whom I’d shared a set of experiences to make sure that everything that I was doing in describing Their sets of experiences felt really resonant with their world So I spent a lot of time sharing in these early days. A lot of it was with the disability at this advocacy community I would always present the work first to them and hear their responses. So it really felt like Developing Relationships with the people was part of that not just trust building in order to accomplish a goal but a building relationship trust in that the way of asking questions about the stories was not my coming in with answers or best practices but an inherent place that was Recognizing what they were sharing with me as their own Life, does that make sense? it feels If it’s just extraordinarily humbling to be able to have the Organizational support for being able to like now come and Anything and have it be that people sit down and talk about the complications that patients We sit down with the patients and talk about things that they wish to have happen I sit down with the doctors and talk about things that they wish to have happen I regularly go in with doctors and some kind of thing that they know something’s going on But they don’t know what and we talk about what that might be and we might audio record it we might transcribe it But they’re often like, you know complex Complex problems kind of questions that just don’t have easy answers and I’ve come to actually At least think I’ve have not appreciate differently The need for that kind of collaboration as really important to Who I am in my work always Yeah Which is of course a very different answer than I would have had when my question would have been But I need to how can I have access to in order to? And my IRB deadline is due and my whatever other kind of thing is due Yeah, so now I find myself inviting a lot in and when their question is they go to something that’s always complicated Then come back and they’re like, I just can’t actually, you know, these are stories of people who I would call refugees But they don’t even have state status in this feels Ethically something that’s complicated. I’m like, then you can be part of the team because I’m needing you know the wrestling with piece Is really important, right? It really is important Yeah, yeah I was curious if like what difference it makes whether the illness is like endogenous or exogenous to the relationship cause it seemed like there were a couple examples where like either one was present like either Parkinsons happens upon a relationship in this like outside of the system manner or frozen shoulder as a result of a change in a relationship Great question and it’s a great question that you get back into all that kind of stuff of what’s the definition on? How do we define it? So we think of for example? Relationally prompted and I’ll call them relationally prompted instead of relationally based and I’ll say we think of them as relationally prompted things like You know Maybe you might call the frozen shoulder if I attribute it to it being connected to and my mother died Or maybe I might talk about depression as inherent to you know a timing These kinds of things but when you look at the questions, we think of them outside of the self cancer, for example but when we look into what that actually means a disproportionate amount of Cancers are also connected to all kinds of lifestyle questions. And or economic questions and or you know environmental like pollution questions, right it becomes Quickly, not quite so either-or when we make attributions for it in the relationship Then we use language to more bring it into the relationship. And is that a truth or is that the current experience? Does that answer with a yeah Quick question about Karen British and that I give closest and your thoughts on do sites like CaringBridge the influence they have on how either we feel a close sense of closeness to the patient the studies that have looked at that and thinking the way that we’ve. I’m just curious your thoughts on this Yeah Yeah, no, I pulled that example actually because of all kinds of things that I don’t know I don’t know the absolute answer. I mean, I don’t know the answer to how what are the studies on CaringBridge? I pulled that because one of the things that I was finding in that friend of mine is that The shift to then things needing to be always Showing the closeness aspect and though we will get through this aspect just felt like it was capturing something that again was you know, the the gentle turbulence of something that is It’s the observation of a dynamic that is happening fully on CaringBridge I’m also interested in the dynamic of how we as support networks It may have various different relationships with the person that is ill. how CaringBridge facilitates us either feeling closer whether it’s over geography or some of it may have been new 20 years ago but now it’s in our inbox all the time because they post a lot Yeah, just the experience of illness from a distance It’s a great question from a distance is one of the aspects of it right is it’s totally you know These this woman that I was very close to in Santa Barbara during my Ph.D. program who All kinds of traumas that you know, you look at Wow, like if I didn’t know that story on CaringBridge, I would only know the outcome right it You get the whole narrative Go on for years and years, and so CaringBridge is a site that is not only For them to communicate with you but it suddenly you’re part of this larger conversation that connected to people Because they’re building social CaringBridge that you’re able to see each other’s comments and then say oh well that was a friend from high school and I haven’t talked to them in 1 year But it’s not co-constructed right CaringBridge If you’re if you’re looking at the questions, I always wonder at what point does it then you know there’s so many different ways of framing the the story and one of the ways on CaringBridge of framing the story is The closeness and how we are coping, you know, the communal coping kind of story with the closeness. I Have I do not know of stories well enough thereof Are you unpacking all the things that are falling apart in the home life on CaringBridge? I’m curious I have an example where I know it’s 5 o’clock but that both the husband and the wife were posting so then that becomes more of a conversation and then the husband continues to post after the death of the wife, so It’s not just one voice coming through CaringBridge it can be multiple people. Multiple people can post And CaringBridge is one aspect of it and I think of also like in communities when When my son was very young There was a boy in his grade who had brain cancer and his mom was also going through cancer treatment and one of the you know ongoing stories in the community was The the mom and the son were going through Different kinds of progressive treatments together and you know the the community aspects of how are those stories Co-created Yeah with that, we’re almost at time and so lets once again thank Ashley Duggan

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