Shame,Chronic Illness and Participatory Storytelling

Background: Shame as Affect and Encounter

The affective ¹ experience of shame relates to a negative exposure of the self and its social failure in terms of living up to social ideals, categories and collective norms in particular contexts. The body in shame feels itself as inferior, unworthy, outside or unacknowledged and as being part of social relations that uphold or produce this negative understanding of ‘the self in its totality’ (Zahavi, 2014: 208). In existing research, shame is often perceived as a deeper negative affect than, for example embarrassment and guilt. Embarrassment has been defined as a more brief experience of ‘temporary stupidity’ (Billig, 2001), while guilt is instead linked to having performed particular actions that have hurt other people or broken a social contract (Nathanson, 1987: 46). Shame is deeper and more profound as a personal experience than guilt as it is linked less to a sense of having done something wrong than to being wrong as a subject with a particular identity, body or cultural position.

Research on shame has been conducted in various academic contexts. I delimit my conceptualisation of the concept to three interdisciplinary lines of existing research: Research on shame as motivated by the real or imagined derogatory gaze of others, research on the transformative and constructive aspects of shame, and research on the role of shame in health and illness.

An influential line of research – particularly within phenomenology – argues that shame can only occur through real or imaginary encounters with derogatory gazes. Jean-Paul Sartre, for example, famously describes shame as a process where the subject feels itself negatively as it becomes an object of the judging gaze of the Other. Shame is ‘the recognition of the fact that I am indeed that object which the Other is looking at and judging. I can be ashamed only as my freedom escapes me in order to become a given object’ (Sartre, 2003: 285). As such, shame is understood as an inherently relational experience linked to visual processes of being/feeling looked at or negatively objectified.

Dan Zahavi describes how the gaze of the Other becomes ‘the mediator between me and myself’ during moments of shame (Zahavi, 2014: 213), but a mediator that also leaves the self in insecurity, because the position of the Other can never be inhabited (do other people actually perceive me as I think they do?). The gaze of the other can be concrete or imagined. As Zahavi describes it, ‘the other-as-subject can be present even when the other-as-object is absent’ (Zahavi, 2014: 217). Although the actual encounter with a shaming gaze is often perceived as more painful than imagined ones, the anxiety of meeting that gaze, and various strategies for preventing it, can also come to saturate and structure an entire life even if the actual shame encounter is rare (Mortensen, 2020; Wurmser, 1987).

Shame is an ordinary affect in the sense that most people have experienced it in some form, but deep and continuous experiences of shame can become harmful and entangled with various types of illness (Dolezal and Lyons, 2017; Nussbaum, 2004; Skårderud, 2001), for example, when ‘the acute lowering of self esteem’ (Nathanson, 1987: 2) in shame becomes chronic or a fundamental aspect of how individuals understand themselves. Shame is furthermore distributed socially according to established hierarchies and norms as some people ‘are more marked out for shame than others’ (Nussbaum, 2004: 174). The female body has been the object of multiple forms of shaming related to body ideals, sexual assaults, limited notions of proper femininity or motherhood (Shefer and Munt, 2019). Rita Felski and Sally Munt also argue that class and poverty are crucial sources of shame (Felski, 2000; Munt, 2007).

A second trajectory of research focuses more on the productive or even constructive aspect of shame. Various works on shame inspired by Silvan Tomkins argue that shame can only exist on the basis of some level of positive investment (Sedgwick and Frank, 1995) and that the ‘innate activator of shame is the incomplete reduction of interest or joy’ (Tomkins, 1995b: 134). You can only feel shame in front of people or agencies whose judgement or acknowledgement you care about. In the words of Elspeth Probyn, ‘(. . .) without interest there can be no shame (. . .). It highlights unknown or unappreciated investments’ (Probyn, 2005: 14). This approach to shame also stresses that shameful experiences can trigger important reflective processes of self-evaluation because the subject becomes aware of its desired but disappointed investments. According to Probyn (2005), shame ‘is productive in how it makes us think again about bodies, societies, and human interaction’ (p. xviii) and by indicating a break of connection as well as the desire for connection.

For Martha Nussbaum, shame is not only painful but also ‘constructive’ when it becomes a shield towards narcissistic pleasure seeking (Nussbaum, 2004: 211). Shame can, however, also be politically productive without redirecting the self towards ‘the common good’ or ideals of (anti-narcissistic) equality and empathy. This is stressed by research that underlines how shame can become an important vehicle for political mobilisation that confronts collective stigmatisation. According to Jill Locke, many social movements have the sharing of personal stories of shame and the struggle to obtain ‘unashamed citizenship’ as a central component (Locke, 2016). Sharing stories of shame can produce political collectives through processes that de-individualise shame by revealing it as socially produced and, thus, as an object of collective protest and change more than a strictly personal state of being (Probyn, 2004; Shefer and Munt, 2019). Here, shame can be converted into collective ‘shame anger’ (Nathanson, 1987: 254) and, thus, become an affective driver of social mobilisation or new ‘shame formations’ (Munt, 2017: 869) fighting for social justice.

While research on shame has proliferated in various academic contexts, the links between (chronic) illness, health and shame have received less direct attention. The research that has been done on this topic can be divided into two subfields: Research attempting to grasp the general shame dynamics of being ill (Dolezal, 2021; Dolezal and Lyons, 2017; Richards, 2019; Woods, 2017) and research that explores shame in the clinical encounter between patient and doctor/healthcare system (Dolezal, 2015; Harris and Darby, 2009; Lazare, 1987).

Luna Dolezal and Barry Lyons claim that health-related shame should be perceived as an affective determinant of health, thereby stressing that experiences of chronic shame – as opposed to more acute and situational shame experiences – are in themselves harmful and can correlate with health risk behaviour (e.g. alcoholism) (Dolezal and Lyons, 2017; see also Woods, 2017). They furthermore argue that an increasing focus on personal responsibility in health care can produce shame by turning ill health into an indicator of a lack of individual character and self-control. Following this, they encourage more projects that ‘explore shame associated with different health problems and in different settings’ (Dolezal and Lyons, 2017: 6). Dolezal elsewhere claims that a more open discussion and interaction about health and shame is a way forward: ‘Acknowledging and publicly confessing one’s shame has a cathartic effect, it dampens its negative affect and shifts the experience towards one of validation and recognition’ (Dolezal, 2015: 575).

Aaron Lezare, in an early article from 1987, argues that shaming is an inherent danger of the ‘medical encounter’ because ‘the visit to the hospital and the doctor’s office requires physical and psychological exposure’ and because patients ‘perceive diseases as defects, inadequacies, or shortcomings’ (Lazare, 1987: 1653). Dolezal backs this by stating that ‘the potential for body shame in the clinical encounter is often connected to one’s perceived responsibility, or blameworthiness, for an illness due to personality traits or health-related behaviors’ (Dolezal, 2015: 572).

My analysis draws on these three lines of existing research by taking an interest in which particular gazes and relations can motivate shame and by focusing on how people with a chronic condition can feel flawed in relation to social categories. Furthermore, the analysis asks how shame is linked to and possibly reveals disturbed relational attachments, and how the sharing of stories of shame in public can enable the creation of a digital shame formation that questions shame as a private matter. Last, but not least, the analysis contributes to research on illness, health and shame by offering an account of the complex shame experiences of individuals with a chronic condition and the discourses of responsibilisation and self-improvement that underpin them.

Method: A Participatory Storytelling Process

The article explores the issue of shame and chronic illness through a participatory research design that was conceived and planned together with the three founders of KI (established in 2018): Karla Pilgaard, Zinna Lautrup and Nanna Marinussen. They are all adults in their 30s or early 40s living with chronic conditions such as spinal arthritis, heart failure, scleroderma and chronic pain. KI aims at providing a public meeting space where people with chronic illnesses can share experiences and plan various offline activities (for instance, local coffee meetings), but also a digital space that communicates knowledge about chronic conditions to the public. The reasons for choosing to engage with KI as a partner and platform were both ethical and pragmatic. The KI founders considered their participation in the research process valuable for the community, and KI as a platform is already focused on moving the experience of and interaction about illness from an individual to a collective realm. The project’s idea to investigate shame as a shared theme and experience is thus aligned with KI’s continuous attempt to de-individualise the experience of chronic illness through community building that influences both the participants’ and public understandings of chronic illness.

To enable collective sharing of shame experiences, a theme week on shame was held in the first week of June 2020, during which five posts, or invitations to share stories, were distributed. A definition of shame as a feeling of being flawed and wanting to avoid the gaze of others was also presented in order to create a common understanding of the term. The following describes the types of lived knowledge addressed through each of the five posts: (1) memories of particular shameful situations in relation to having a chronic illness, (2) the gazes/people that the followers could feel shame in front of, (3) the role of social media in terms of, for instance, intensifying or decreasing shame, (4) experiences that have reduced shame, and (5) a link to an evaluative survey that was distributed on the final day of the theme week. Responses to the five invitation posts amounted to 170 user comments on Instagram (87 comments) and Facebook (83 comments), 20 longer emails sent to the researcher and 178 survey responses (see also Stage, 2022).

The research design could be described as ‘participatory’, because the dataset consisting of stories was co-produced by the many users of KI (Kelty et al., 2014), but also because the KI founders had the opportunity to affect and co-decide the theme and research process (e.g. the invitation posts and survey) itself (Carpentier, 2011). The tendency was that the three founders did not have strong opinions about the design of the questions and survey, but were very focused on processual and ethical decisions regarding how to engage the KI users in a respectful and suitable way (for instance, how often they could be addressed), and also on feedback decisions with regard to making sure that the knowledge created in the project was not only applied in an academic context, but was also communicated back to the KI users and themselves (e.g. through the sharing of provisional findings on the profiles).

The ethical problems of staging a public process of sharing shame experiences require consideration (Franzke et al., 2020). To ensure that the project was guided by transparency and care, and did not violate the more or less implicit standards of the community, the whole process was, as mentioned, planned and discussed with the three founders. Furthermore, the genre of ‘theme weeks’ dealing with difficult issues is familiar to the users as it is a recurring format on the KI profiles. What was new was that the communication during the week was used for research through the production of ‘elicited data’ on social media (Salmons, 2016). Therefore, in all invitation posts, there was a section which clearly indicated the aim of the research as well as providing details about ethics, anonymisation and researcher contact. Consent forms were shared with people who contacted the researcher with stories via email, and these were confirmed digitally. The ethicality of making the process of sharing shame public could also be questioned. The collective and voluntary sharing of shame stories was, however, explicitly chosen to experiment with the creation of a more public form of storytelling that could potentially create both internal and external awareness of how chronic conditions are experienced and lived with in society.

In Problem Spaces (2020), Celia Lury explores how methods are performative in the sense that they do not simply represent ‘pre-given’ knowledge problems (for instance, how people in a particular life situation feel shame), but they also compose situations or ‘problem spaces’ where problems become visible in certain ways and able to respond to particular knowledge goals (Lury, 2021). By collaborating with KI, the problem of shame and chronic conditions is enacted in a very particular way, and even in a way that highlighted to the researcher that the problem investigated was different and more specific than expected. A vast majority of the 178 people who answered the survey were female (96%), between 25 and 55 years old (89%), and had a chronic condition linked to the musculoskeletal system (75%) (for instance, various types of arthritis, chronic pain and whiplash syndrome). As such, the research infrastructure and the crowdsourcing of material produced a problem space structured by particular patterns in terms of gender, age and types of chronic conditions.

This transformation of the problem is an effect of the project’s attempt to move science into the public (Nowotny et al., 2001) by co-creating empirical material with a large number of profile followers. A potential downside of this participatory way of conducting and communicating research, from the perspective of traditional social research methods at least, is that researchers lose control over the process, for instance, over how much material is collected and over who the participants are as they can choose to participate in ways that do not reveal demographic information. For that reason, a certain lack of traditional demographic systematicity and transparency needs to be embraced in this kind of participatory research based on dynamic social media interaction with participants, and not on more controllable offline encounters with informants (Hine, 2015: 80).

Body Shame as Energetic Failure

Based on the material, shame seems to be a relevant affective quality to investigate in relation to the participants’ lives. In the survey, 70% indicate that they feel shame in relation to their chronic condition on a daily (30%) or weekly (40%) basis. Shame is, however, a complex affective response shaped by various cultural and subjective factors, which implies that shame must be understood and explored in its contextual specificity. Looking at the participants’ descriptions of what shame is and does in their lives with a chronic condition, a majority link shame to the experience of either having a body that fails, having a body that is slower or weaker than what could be expected, or being a burden to society or a personal social network due to their bodily weaknesses. One participant explains,

I am doing my very best, but I constantly feel that I am drowning. I rarely have the energy to take part in social events, and I have lost friends on that account. (. . .) I constantly have to be aware of my energy level. I suffer from fatigue, and I constantly forget things. (. . .) On a daily basis I am ashamed of the things I would like to do, but cannot do. It is hard.

In the empirical material, shame is repeatedly linked to various forms of bodily dysfunction (for instance, not being able to remember, having a disease that could cause premature birth) or mismatches between desired bodily capacities and actual bodily capacities. One participant describes this link between shame and a feeling of embodied incapacity in relation to her experience of constantly being tired as a mother: ‘I feel ashamed when I don’t have the energy to be a mother and therefore have to lie down – in order to find the energy again’.

Humanities research on the body has consistently focused on complicating dichotomies such as mind/matter, inside/outside and culture/biology (Blackman, 2007), but, as shown, the shame experiences of the participants also seem to feed on a felt disjunction between inner desires and outer capacities, between what the mind wants and what the body can do, between individual states and cultural expectations. Marc Lafrance and R Scott Carey have argued that a non-dualist understanding of embodiment must also acknowledge that our experience of the body is ‘characterised by an important contradiction: we are our bodies, but our bodies do not always feel like us’ (Lafrance and Carey, 2018: 64). During chronic illness, the body can be sensed as strange, autonomous, inhibiting and disconnected from the self (Carel, 2016). The body seems to become present, or ‘dys-appear’ (Leder, 1990), to the participants of this study through experiences of being physically impeded, which makes the body feel exterior to the self, but in a way that paradoxically also calls the dignity and worth of the total self into question. The body in crisis thus abandons the self to shame by simultaneously failing the self and stressing the crucial importance of the able and vital body to the idea of being a capable human being.

Following the rhythmanalysis of Henri Lefebvre, it could be argued that this type of energetic body shame is produced through either destructive encounters between the biological rhythms of the self (for instance, cycles of activity, tiredness, rest) and the social rhythms of others (for instance, when and how often people are expected to clean the house, pick up their children) or destructive encounters between the desired biological rhythms of the self (what I would like to do) and the actual biological rhythms of the self (what I am capable of doing) (Lefebvre, 1992). This situation constitutes a form of body shame that is less focused on the visible surface or unattractiveness of the body, which is often associated with body shame as a concept (Vani et al., 2021), and more on the body’s lack of force and resilience. The participants’ description of body shame as energetic failure simply points to an underexplored aspect of shame experiences. They stress that body shame is not necessarily linked to a person’s affiliation with already problematised social categories (for instance, belonging to the ‘wrong’ ethnic or sexual category), or to a feeling of being visually imperfect, but rather to not living up to the energetic ideals linked to social categories. Shame is not shame related to being excessive or too much, but rather to being too little, or not alive enough, to inhabit one’s categories.

The participants in that way describe not only how their bodies are too easily affected by their activities and surroundings, but also how they themselves are not affective enough in terms of having a presence in the world (for instance, in the home, in society or at the workplace). If affect concerns the body’s capacities to affect and be affected (Spinoza, 1997), then shame is described in affective terms as being related to the body’s oversensitive affectedness that drains the body of energy as well as to its lack of ability to affect and give energy to other bodies. Shame is thus explained as the experience of being regarded as an energetic and affective failure in terms of both too much sensitivity towards the world and too little impact on the world.

Shame, Love and Uncertainty

Across the material, various shame-inducing ‘gazes’ are articulated, but some are mentioned more often than others. One would perhaps think that disapproving gazes are mostly related to authorities like physicians or municipal consultants. In addition, these gazes are also present in the material. The municipal authorities can, for instance, cause shame if they meet the chronically ill with mistrust or with the desire to squeeze him or her into a predefined system. The medical encounter can also induce shame when it does not acknowledge the severity of the condition but instead focuses on (a lack of) motivation. However, a crucial finding in the material is that shame primarily seems to be located in the intimate sphere, stemming from gazes of people that the participants love and by whom they want to be loved. In the survey, friends (51%), partners (42%), family in general (41%) and children (37%) are mentioned as the relations that most often cause shame: the picture is the same across all the comments, emails and survey comments. Institutional and societal authorities are mentioned as important shame-inducing gazes, but children, partners and friends are mentioned three to four times more often than these authorities.

With regard to the wider network of friends and acquaintances, shame seems to be linked to being a socially unpredictable individual controlled by the abovementioned bodily impediments and energetic failures: someone who has to leave social events early, suddenly lay down on the sofa or postpone or cancel meetings at the last minute, someone who needs extra arrangements and attention to be able to take part in social life, or someone who needs to be excused for forgetting important aspects of being a good friend. Participants write, for instance, that they can feel shame when they ‘forget to write happy birthday to a friend’, ‘have to cancel an appointment’, ‘need constant help with small things’, ‘can’t follow’ the conversation of friends or have to leave a social gathering ‘before planned’.

In terms of failing as a parent, one participant writes: ‘I would like to be a better mother – a vital and happy mother with the energy to smile and have fun’. Another participant describes how she feels shame in relation to her daughter: ‘(. . .) because I don’t feel that I can be the mother that I want to be and that I think she deserves. I can’t live up to my own expectations and the things that I know are best for a child (. . .)’. These quotes stress how the shame experiences of the participants arise through complex entanglements of love, self-evaluation and gender expectations. Following Tomkins and Probyn, who understand shame as constituted by impeded positive interest in others, the potential for feeling shame can be intensified by love, because relational failure is much more painful and severe when love is involved, and, for instance, take the shape of a self-reflective experience of failing to live up to one’s own ideals of parental care.

In the material, shame in the intimate sphere is, as mentioned, more prominent than shame linked to systemic authorities. A crucial difference between these experiences of shame is that shame involving the system is often articulated by the participants as specific, acute and situational, while shame involving loved ones is described in a more abstract way and is linked to the fear of more persistent – but not necessarily yet experienced (Dolezal, 2021) – relational breakdowns. One participant, for instances, shares this example of an encounter with the health care system: ‘The hospital doctor keeps on saying that I need to go back to school and has written in my journal that she has “tried to motivate me to do that”. I don’t even have the energy to take a shower more than once a week’. A contrasting example is shared by a female participant who seems to be afraid of betraying the hopes and visions of the good life embedded in engaging in an intimate partnership with another person: ‘I feel the biggest shame in relation to my husband as I’m not the fresh and energetic woman he once fell in love with’. One of the rare comments by a man in the material also focuses on how his illness leaves his partner with a practical burden and blocks his ability to help create a home characterised by care, patience and presence: ‘I feel ashamed that I can’t be the father and the husband I want to be. That I’m more absent, grumpy and impatient than I’d like to be. And that I have to leave such a big part of the practical work to my wife’.

While the first example mentions specific interactions between interlocutors (‘the doctor said x to x’), the following examples are saturated by uncertainty. It is unsure whether the concerns articulated by the participants have ever been expressed by their partners, or whether the dreaded relational failure is primarily an imagined scenario. This points to how shame can also thrive on uncertainty, anticipation and pretended encounters. Luna Dolezal has shown that stigmatisation related to invisible chronic illnesses can foster the production of ‘shame anxiety’ and that this anxiety – where shame is present in its potentiality – is a crucial affective aspect of how stigma can cause harm in the everyday lives of people with a chronic condition (Dolezal, 2021). In the abovementioned quotes on shame in the intimate sphere, shame is on the one hand felt (‘I feel ashamed’), but on the other hand strangely disconnected from accounts of specific shame-inducing encounters with others. Children and partners seem to prompt shame despite being silent. In that way, shame is linked more to the potentiality of (once) having to face children and/or partners that devaluate the subject’s identity as a father, mother or husband than to actually experienced situations of shaming.

Dolezal outlines this kind of shame experience – where actual shame encounters are absent, but shame is nevertheless present via anticipation – through the phenomenological concept of the ‘horizon’. Horizons ‘predelineate’ possibility in the sense that we expect or orient ourselves towards certain future scenarios or experiences as more likely than others, and Dolezal argues that ‘(i)f our identity, appearance, or health status continually violates dominant social norms, then we may become “oriented” to the anticipation of shame. A fear of shameful exposure may come to chronically dominate our experience’ (Dolezal, 2021: 63). These orientations can saturate the lived experience of subjects by sticking to certain spaces (for instance, the home) or situations (for instance, taking care of one’s children) and thus work as a persistent horizon for the subject’s approach to the everyday surroundings. Here, shame becomes absently present through constant self-reflection (am I letting my loved ones down?), insecurity (do they evaluate me negatively or not?) and anticipation (at some point, they will probably judge me in a negative way).

An important point, however, is that the family as an institution is not only described by the participants as a social formation characterised by anticipated shame, but also by actual situations of painful rejection, social pressure, harassment and disconnection. One participant explains: ‘I do not live up to the health norms of my family and I have not been able to do sports and exercise like them. I have gained weight and I am always ashamed when I am visiting my mother because she often comments on it’. Another participant has chosen to break contact with her family to avoid its silent exclusions: ‘I often experience being forgotten by my brother and my parents, and it hurts me so much, so much that I don’t have any contact with them at the moment’. These examples underline that shame as a disturbance of positive attachment can also be embedded in and intensified by more lasting and hurtful family logics. Horizons of possibility and shame anxiety are here replaced by actualised processes of shame-inducing interaction where the derogatory gaze of the (abstract) other is materialised through moments of exposure and exclusion in relation to parents and siblings.

Rescripting Shame

Chronic illness is culturally associated with disrupted normality, even deviance, and, therefore, often causes social withdrawal and isolation (Harris, 2009; Varul, 2010). This understanding of illness as ‘other’ or ‘abject’ to the normal incites an experience of illness as potentially shameful – and thus as something to be confined to the private or intimate sphere to avoid shameful disclosure through social interaction. Looking at the participants’ stories, it is, however, important to stress that illness-related shame is also a temporally dynamic experience and that the social withdrawal and isolation linked to certain forms of illness can be renegotiated and politicised in various ways. According to the participants, shame is a dynamic affect both in terms of when/why it occurs and in terms of how it develops over time. In the survey, seven out of 10 participants indicate that the feeling of shame has changed over time. Shame can, for instance, increase with the arrival of the chronic condition. However, more participants indicate that the feeling of shame has decreased, for instance, after getting a diagnosis that explains hitherto unresolved bodily weaknesses, or as they have learnt to live with and accept their condition and understand themselves as worthy individuals despite their illness:

I don’t feel as much shame as earlier. I think it’s because I’ve settled more in my role. For instance, I felt an enormous amount of shame due to my lack of contribution to society. Now I’m contributing by being a fantastic aunt, friend and a positive person – and that’s good enough.

Across the material, (self-)acceptance, the support of one’s partner and network, open dialogue about illness and peer contact/communities are mentioned as the most prominent roads to overcoming or coping with shame.

The participants seem to turn to social media as important vehicles for producing relations and forms of interaction, where illness can be discussed openly and shared outside the boundaries of the home and family relations. Seven out of 10 survey respondents indicate that they use social media to communicate or read about illness on a daily or weekly basis, eight out of 10 follow the personal narratives of individuals with a chronic condition on social media, and six out of 10 engage in patient communities. This suggests that the desire to keep illness private or invisible is only one side of the story for the participants. According to Jane Macnaughton, people with a chronic illness (for instance, breathlessness) often have a ‘paradoxical attitude to its visibility’: ‘On the one hand, there is a desire to hide their problem for complex reasons associated with wanting to appear “normal” in social contexts; on the other, there is resentment when people are unaware of it, because of its invisibility at rest’ (Macnaughton, 2020: 37). KI as an organisation and social media community speaks to both of these attitudes by offering members and followers the opportunity to relate to peers in more interpersonal or invisible ways (for instance, through meetings or private messages) and by taking on the task of providing public access to lived knowledge about life with one or more chronic conditions.

The participants in general acknowledge the potentials of sharing illness experiences and stories in public through a format like the theme week. Nine out of 10 survey respondents state that they were aware of the theme week, and half indicate that the theme week was fruitful, while one out of four did not follow the week closely, and one out of 10 found the week less fruitful. A large majority of the respondents also think that it can have positive effects to share shame stories in public the way people did during the theme week. According to the respondents, such initiatives strengthen the community (81% of respondents), facilitate people with chronic conditions coming together to fight shame (69% of respondents) and decrease the level of shame on an individual level in that people experience it as a more collectively shared affect (74% of respondents). A small number of respondents believe that public sharing of shame can have negative effects like producing more shame (4% of respondents) or fixating people in self-victimisation (10% of respondents). These numbers appear to indicate that the participants understand the public articulation of shame as a primarily alleviating process that helps build communities and collective resistance against shame.

Through the process of public storytelling, shame acquires new qualities and potentials. It is no longer only linked to personal and painful experiences of failure, but also to a shared condition that enables the participants to think (and feel) differently about shame by, for instance, de-intensifying it or modulating it into collective indignation or anger. In light of this, one could approach the theme week on the KI profiles as an experiment in building a temporary affective counter-public (Papacharissi, 2015; Squires, 2002) that comes together in the effort to acknowledge shame as more-than-individual and as intertwined with societal structures and exclusion, and not as an affect that reveals the singular individual as bad or unworthy. In a sense, the users, through the process of sharing stories, get the opportunity to experience shame in a new way: not as an internal process of negative judgement, but as an affect that is produced through larger cultural scripting processes, whereby particular bodies, that are unable to perform specific social roles (for instance, as a mother or worker) in the expected way, have learnt to feel shame in relation to certain situations in their lives (for instance, in the household or at their workplace). According to Silvan Tomkins, ‘scripts’ are ‘rules for predicting, interpreting, responding to, and controlling a magnified set of scenes’ and the way in which affects are produced and modulated during these scenes (Tomkins, 1995a: 320). Through the process of sharing ‘personal-but-similar’ shame stories, but also stories of having overcome shame in relation to illness, the collective and dynamic aspects of these scripts become visible to the users, and the sharing process, therefore, also invites reflections on how to produce alternative scripts that allow marginalised bodies to encounter and feel particular scenes in their lives in new ways – and maybe on how to live a life where shame may be present, but in weaker and less monopolistic ways (Frank and Wilson, 2020).

However, shame is also politicised on a different level as the theme week allows for this affect to be discussed and contested as relevant for understanding life with a chronic condition. Some participants do not at all acknowledge that shame is of importance to their life as a chronic patient: ‘I have a chronic condition full time, 16 physiological diagnoses, and my one-year birthday on disability pension. I’m not in any way ashamed of this and I’m grateful to be able to take care of and nurture my health and keep the healthcare system running . . .’ Another type of contestation focuses on how the participants have felt negative affects in relation to illness, but that shame is not the right label for this negativity. Frustration is highlighted most often (eight times), but there seems to be no agreement about which affective alternative to shame is the most relevant. Bad conscience, insufficiency, fury, guilt, sadness, embarrassment, irritation, loneliness and sorrow are all mentioned between one and four times in the material. Sharing shame stories in public, in other words, creates the possibility of contesting the relevance of connecting illness to shame in the first place. In that way the process of rescripting shame through participatory storytelling is not only a question of sensing the collective aspects of what is often perceived and felt as a lonely and individual affective state, but also of questioning the (researcher’s) assumption that the chronically ill are potentially living a life in/with shame.

Chronic Self-inspection

The analysis has stressed that shame might be negative and inherently unacceptable from an individual perspective, but that it can also be perceived as a kind of blocked interest in producing more caring relations and communities where shame is de-intensified and de-individualised. The precondition for actually reaching this desired state of care is, however, a more profound transformation of current health cultures built on the ideal of personal health responsibility – and on a belief in the individual’s rational ability to control and steer the body towards a state of health (Mol, 2008; Rose, 2006). This ideal of the responsible patient reproduces a particular understanding of the relationship between mind and body during illness. Monica Greco argues that current medicine is based on a bifurcation of body and mind, where the former is positioned as belonging to primary reality and the latter to secondary or subjective experiences. Medicine as a discipline understands itself as being able to improve health by interfering with the primacy of the physical body disconnected from subjective experiences of that corporeality – and thereby also from subjective ideas about what kind of help or support is needed to ensure health. This ‘bodily determinism’, according to Greco, paradoxically coexists with the ideal of the rational individual being able to ‘choose health’ (through particular practices of, for instance, eating or exercising), an ideal that seems to link health to decision, willpower and identity (Greco, 2019). Such a tension produces a complex bodily position for the chronically ill subject, who is positioned as ‘a mere body’ that should submit to a medical authority to get well, but also as a ‘responsible body’ with the ability to produce its own health through willed actions.

But what happens when the medical authority cannot restore health and leaves the body in a state of chronic illness? One consequence could be that the potential for self-management, self-judgement and self-questioning is expanded. Such an expansion entails that practices of self-experimentation (for instance, alternative or peer-based treatment) become more relevant for the subject (Lolholm Gammelby, 2021), but also that a fundamental feeling of having failed – or being a failure – becomes difficult to avoid. This explains why the everyday stories of shame shared by the chronic patients in this study are saturated by an experience of living with an ‘unfixable’ disease (from a medical point of view), but still having to face constant processes of self-scrutinisation around issues relating to willpower, energy and potential laziness. One participant explains, for instance, that she ‘often reflects on how to draw the boundary between “I am not able to” and “I am not trying hard enough”. Am I really too ill to create a perfect home, to go to the playground, to work more hours etc. – or am I just lazy and not tough enough?’. Questions like ‘Is it me?’ or ‘Is this actually my fault?’, therefore, seem to haunt this group of patients.

The constant focus on individual improvement and responsibility could also be described as a key aspect of how capitalist societies position and deal with chronic illness as a moral problem. Matthias Varul argues that the Parsonian ‘sick role’ – famous for describing how a sick person is expected to withdraw from social activities and seek out/respect medical authorities in order to be able to return after recovery (Parsons, 1951) – should be understood as part of a capitalist model of social and moral transaction. To ensure that as many people as possible take part in the workforce, ‘the sick role’ provides a delimited space of shameful deviance, where illness should be worked on and transgressed in order to restore the health and labour power of the individual. Here, shame plays the role of leading the sick person back into the productive system because illness is experienced as individually and socially unattractive.

Chronic illness naturally poses a fundamental challenge to this transitional model because the sick role is not temporary. According to Magdalena Harris, this explains the general cultural reluctance towards ongoing illness: ‘A societal distaste for engaging with issues of ongoing illness is related to a cultural preference for narratives of progress and values associated with these narratives, such as independence, autonomy and productivity through paid work’ (Harris, 2009: 47). Chronic illness thus poses a moral problem in capitalist societies, because the permanent avoidance of work risks being motivationally contagious and destructive if ongoing illness is perceived as socially desirable: ‘the danger of moral contagion must be minimized: the healthy public needs constant reassurance that it is not nice to be ill, that ill people carry a burden’ (Varul, 2010: 81). For that reason, the chronically ill are met with persistent demands of self-improvement, self-exploration and self-treatment. Constantly working on, testing and probing the resilience of the body becomes the prize that chronically ill subjects must pay to legitimately avoid some of the demands of capitalist production. Or rather, the person with a chronic illness is positioned as having a chronic responsibility to question and scrutinise subjective and embodied feelings of being too ill to return to the kingdom of health and labour.

The crowdsourced material in total invites us to reflect on the shortcomings of the ideas of health as bodily determinism and as choice that are seemingly unable to deliver on their promises in the face of chronic illnesses and instead end up triggering potentially shame-inducing self-inspection and self-judgement. Following this, shame should not only be treated as ‘distorted positive interest’ or as individual experiences produced in more or less imagined encounters with devaluating gazes. It is also an affect, which stresses the need to critically address biopolitical health cultures and capitalist approaches to chronic illness that enable ‘shameful patienthood’, and constant self-scrutinisation, by reproducing discourses of bodily determinism, chronic responsibility and health as choice.

Conclusion

Experience of shame related to a chronic condition is an underexplored topic to which this article contributes an initial understanding. The analysis has shed light on some of the complex roles that shame plays in the lives of people with one or more chronic conditions. Key insights are that shame among chronically ill people seems to stick to ‘energetic failures’ of the body; that shame is predominantly produced and anticipated in the intimate sphere; and that shame is rescripted when it is shared and contested among peers. The collective storytelling process explored in the article can thus be perceived as an attempt to initiate overlapping rescripting processes of weakening the force of shame on an individual level, of creating political awareness of capitalist health cultures based on a problematic responsibilisation of patients, and of providing a space for articulating and exploring the experiential complexities (and the potential irrelevance) of shame in the everyday lives of people with a chronic condition.