1.5 Experiencing illness

Overview

In this chapter, we address the question: How do people experience illness? We start by considering how we make sense of illness and the elements that shape this highlighting the importance of the social context. This discussion also provides foundational understanding for Part Two of this book, which focuses on illness and diagnosis. We then introduce the concept of “illness narratives” to show how stories provide a resource for people to make sense of illness, as well as shaping possibilities for that experience. We follow this with a discussion on “biographical disruption”, a term that describes how the onset of illness can profoundly interrupt a person’s sense of self and relations with others, requiring them to craft new stories about themselves. We finish with the limits to biographical disruption as a concept by discussing how social and economic factors shape illness expectations. In so doing, we cover three learning objectives:

Introduction: making sense of illness and the elements that shape it

Illness is a subjective experience, related to feeling unwell, being ill, or having symptoms considered a medical issue. As Amzat and Razum (2014, p. 29) explain, “illness is the lived-experience of a diseased condition”. Illness is therefore a holistic experience, and is likely to encompass:

• embodied sensations (e.g., pain or physical discomfort) that brings the body into consciousness
• identity issues (such as a challenge to one’s sense of self as healthy or independent)
• social aspects (e.g., greater dependence on others, isolation, or becoming the recipient of different responses from others, such as, greater care, sympathy, judgment, or pity)
• economic aspects (if it effects a person’s income).

Typically, illness reduces the functional capacities of a person, which, in turn, can be experienced as traumatic. For example, Swartzman et al.’s (2016) meta-analysis (of mostly Global North studies) showed that post traumatic stress disorder is more common in survivors of cancer than it is in the general population. But people can also report growth in response to life threatening illnesses (e.g., Sawyer et al., 2010). We gained insight into this complexity in Riley et al Chapter 1.2 from Kevin Aho’s (2019) phenomenological account of his experiences of suffering a heart attack, which, while “world-shattering” (p. 189), also created new feelings of love and appreciation of others.

As we discuss in this chapter, the lived experience of illness is shaped by specific disease symptoms, personal histories, and the wider discursive and material contexts. It is important to recognise these multiple elements because they bring our attention to how illness is complex, socially shaped, and embedded in power relations. We consider this complexity below in our discussion of the different elements that can shape the intelligibility of illnesses, seeking to offer some foundational concepts such as distinctions between acute and chronic disease. We also unpack those elements, such a spirituality and temporality, which we consider important but often overlooked in health psychology textbooks.

Acute / chronic distinctions

Diseases can be categorised as acute or chronic; these distinctions provide insights into the kind of illness experience they generate. Acute diseases tend to have a rapid onset of symptoms that get resolved in a relatively short period of time, potentially without treatment. Acute diseases are usually communicable, spreading from person to person through air, water, or bodily fluids, and may range from mild to life-threatening. Examples of acute illnesses include cholera, chickenpox, and influenza.

In contrast to acute diseases, chronic diseases tend to have a slower onset of symptoms, which are then more prolonged in duration. These symptoms rarely resolve themselves, and often require long-term management, which is why the term “chronic health condition” may be used, in recognition that people are managing an ongoing health issue.

Chronic health conditions may be treatable, but not curable, and they can get worse over time. They are typically noncommunicable, meaning they are not spread from person to person. Common examples include cardiovascular disease, asthma, and diabetes. Cancer may also be considered a chronic health condition since it usually does not have a rapid onset, and people can live with it for a long time, either because curative-intent therapy requires ongoing treatments, or because treatments for incurable cancer may enable people to live with it for many years (Pituskin, 2022). Approximately a third of the adult population, globally, manages at least one chronic health condition (Clur & Barnard, 2024).

While chronic diseases are usually noncommunicable, there are exceptions, such as Long COVID, a chronic condition resulting from the communicable COVID-19 virus. And as the efficacy of medical treatments increases, there can be more non-communicable acute diseases. For example the significant improvements in breast cancer prognosis mean that the five-year survival rate of early cancers exceeds 99% in some countries (Cancer Research UK, 2016, cited in Greenhalgh, 2017). These examples highlight how categorical distinctions of diseases are complex and variable. Offering these broad distinctions—acute versus chronic, communicable versus noncommunicable—remains useful however, for highlighting that the disease symptomology and associated treatments will shape how illness is experienced. We also note that the experience of illness is further complicated when patients’ physical symptoms are medically unexplained, and thus unclassified (Kornelsen et al., 2016).

Social meanings related to disease-specific symptoms:

Disease-specific symptoms shape the experience of illness in interaction with wider discourses and social norms. For example, people with irritable bowel syndrome (IBS) experience bloating and diarrhoea. These symptoms are unpleasant in themselves, but they also reduce a sufferer’s ability to understand themselves in culturally valued ways, since bloated stomachs are the opposite of flat stomach body ideals and diarrhoea elicits disgust (e.g., Björkman et al., 2014). These symptoms position the sufferer in socially undesirable ways that impact on their experience of managing IBS beyond the physiological challenges.

Personal histories and associated interpretations of illness

People’s personal histories shape their interpretations of illness. For example, in Greenhalgh’s (2017) autoethnography of her experience of breast cancer, she used her knowledge as a medical doctor to interpret her illness and options for treatment.

Other people’s personal histories can also shape our experience of illness. For example, people might draw on family stories, or anecdotes from others, to help them interpret their own illness (Driessnack, 2017; Jaramillo et al., 2019; Line et al., 2024). Sometimes people report feeling another person’s illness, blurring the boundaries often understood to exist between people, especially in Western cultures. For example, Ahmed (2014) challenged the notion that pain is solely an individual experience, underscoring the interconnectedness of human experiences, particularly within a familial context:

I would say that my main experiences of living with pain relate to living with my mother’s pain… You might note that I said ‘living with’ my mother’s pain. You might question this. It is my mother who has pain. She has to live with it. Yet, the experience of living with my mother was an experiencing of living with her pain (p. 29).

Spirituality

Part of a person’s personal history includes how important spirituality is to them. Spirituality underpins ways of being for many people, yet it is often overlooked in health psychology textbooks, or relegated to considerations of end of life care. For many Indigenous peoples, spirituality is based on a sense of connectedness and respect for the Earth, ancestors, family, and a peaceful existence (e.g., Brittain & Kora, Chapter 1.1 ; Cram et al., 2003; Dudgeon, et al., 2020; Valentine et al., 2017; Warbrick et al., 2023). For example, Māori health models, such as Te Whare Tapa Whā (Durie, 1985; Ministry of Health New Zealand, 2023) position te taha wairua (spiritual wellbeing^[1]) as one of the key dimensions of health and wellbeing, alongside physical, mental, and family wellbeing (see Brittain & Kora Chapter 1.1 for further discussion of this and other Māori health models). These ideas of spirituality shape how illness is intelligible, for example, in conceptions of illness as an imbalance between these key dimensions of health (Valentine et al., 2017).

Spirituality also shapes illness experience for many non-Indigenous people. Whether linked to a religion, or to a broader sense of higher purpose or life force, spirituality may enhance meaning in adversity and/or shape health outcomes by shaping behaviour, physiology, and social practices (Aspinwall & Tedeschi, 2010^[2]; Shattuck & Muehlenbein, 2020). Conversely, spiritual responses to illness may require people to create strategies for managing unanswered prayers and the emotional pain associated with disappointment (Dein & Brown, 2024).

Temporality

Like spirituality, people’s sense of location in time is not always foregrounded in health psychology textbooks, but it does shape illness experience in multiple ways. For example, the onset of illness can disrupt a person’s sense of where they are in their life’s time frame (Crossley, 2003).

Temporality is also evident when we consider disease progression, which may involve a steady improvement or decline, or conversely, produce cyclical experiences as a person moves in and out of remission or cycles through multiple challenges that can occur during an ongoing illness. In these moments, people need to mobilise different skills, knowledge, social, and economic resources. Illness is thus characterised by ongoing demands on resources at a time when people’s resources are often depleted because of their illness.

People can also have complex experiences of time, such as when past experiences and future fears are felt in the present. As Robson et al. (2025, n.p.) note in their discussion of temporality in people’s experiences of having coronary heart disease, “fear of future illness or hope of future health … are ways in which different futures are embodied in the present”. One example comes from a reproductive health project conducted by Sarah and Siobhan (two authors of this chapter), when a research participant described how she refused contraception with potential side effects related to the eyes because she had previously experienced a severe eye condition and was fearful of suffering a similar experience again. When telling her story, the past fear of losing her sight was not just relegated to the person she once was, but re-imagined in the present body. In so doing, she also brought a dis-preferred future self—one marked by illness—closer to her present moment.

Māori understandings of time are also intertwined with the past and future, but may have a more extended reach into the past and future than for people embedded in Western cultures. For example, present experiences of illness may be shaped by the experiences (positive and negative) of earlier generations within ones whānau, or by potential impacts on future generations. As Durie explaines:

Future generations are often referred to as ‘us’, a reminder that through a process of inter-generational transfers, endurance transcends personal longevity to embrace the life span of the tribe. Time-frames become longer and time itself is measured more by seasons – or even by generations – than by a timepiece (2001, p. 77).

Critical disability scholars also question Western normative expectations of time. Their concept of “crip time” challenges cultural values related to a productive and controllable body:

Crip time is flex time not just expanded but exploded; it requires reimagining our notions of what can and should happen on time, recognising how expectations of “how long things take” are based on very particular minds and bodies … Rather than bend disabled bodies and minds to meet the clock, crip time bends the clock to meet disabled bodies and minds (Kafer, 2013, p. 27; cited in White, 2023, p. 1263).

These arguments represent a form of resistance to working practices within capitalism, and its associations of disciplining bodies to maximise productivity. Such scholarship highlights how socially sanctioned schedules create disabling temporal rhythms for a wide range of people, producing a form of misfitting—where the disabled person cannot fit in with the socio-material structures organising the wider world (Garland-Thomson, 2011; White, 2023). For instance, individuals with chronic health conditions, such as multiple sclerosis or fibromyalgia, often experience fluctuating symptoms that can make it difficult to adhere to rigid work schedules. The misalignment between social systems and bodily needs is also evident when considering temporary acute health conditions. For example, an individual recovering from major surgery, or severe influenza, might require a period of extended rest and gradual return to normal activities, but these needs are often undermined by expectations for quick recovery and return to productivity.

Place

As well as being temporally situated, illness experience is shaped by space and place. In Chapter 1.3, for example, we discussed Locock et al.’s (2016) analysis of a cancer diagnosis assemblage, which included the size and décor of hospital waiting rooms.

We extend our discussion of space and place in the materiality of illness and treatment in Riley et al. Chapter 1.6. Here we highlight the importance of where people live. Living in areas with social and economic deprivation creates a persistent environment of stress and uncertainty that impacts on illness (Hodgetts & Stolte, 2017). These neighbourhoods often have negative reputations or media representations, and coming from such a stigmatised place can shape illness through internalised stigma, lower self-esteem, anger, or shame (Halliday, et al., 2021). Social and economic deprivation occurs in both rural and urban locations, but rural living can have additional problems such as reduced access to services. In Aotearoa New Zealand, for example, those living in rural areas have higher mortality rates from preventable causes (Nixon et al., 2023; Whitehead et al., 2023).

Technologies

Digital and physical technologies are also important when understanding illness because they shape how people think and feel about an illness. Examples include when technologies:

• provide information (aka “Dr Google”)
• offer peer support (e.g., social media platforms or websites like https://healthtalk.org/ that share patient stories)
• act as public pedagogies (i.e., teaching people how to understand an illness)
• shape behaviour (e.g., through product links and advertising, or recommendations to see a doctor)
• provide ways to “know” the body and thus interpret illness (e.g., when scans visualise illness progression within the body, or tracking apps show patterns in symptoms).

Technologies can also shape illness by reducing the impact of chronic health conditions on everyday living. For example, real-time biosensors monitoring blood sugar levels in people with diabetes are designed to reduce the burden of self-monitoring (Lawton et al., 2018). However, such positive impacts on illness cannot be guaranteed, since technologies designed to manage illness can create other dispreferred experiences (Lupton, 2018; see Riley et al. Chapter 1.6 for discussion of the experience of treatment).

Social support

Social support is the perception that one is cared for, and part of a mutually supportive social network. There is a robust literature mapping benefits of social support on illness, in part, because social support mediates stress responses that suppress the immune system (Taylor, 2011). But this broad pattern belies significant complexity. For example, people might receive differing levels of support depending on how many resources they need and for how long, while not all support that is given is desired or experienced positively. These issues point to the importance of understanding the context within which social support occurs.

One consideration of the context of social support is where it comes from. Winkler (2017), for example, highlighted a range of people involved in supporting her participants to manage their illness, which required home parenteral nutrition (when nutrition is delivered intravenously). These people included friends, family, and healthcare professionals. Importantly, her participants described how the ability to find “others just like me” (p. 1756) provided vital relationships with other people who understood what they were experiencing. Although these patients had used Internet searches to identify organisations that provided support or peer networking, Winkler encouraged healthcare professionals to make these connections to help patients access these resources.

For Māori in Aotearoa New Zealand, social support it occurs within an elaborate and interconnected social support network of whānau, hapu, and iwi. Whānau support, for example, can involve practical day-to-day assistance, as well as emotional, spiritual, and cultural support. In this context, it is perhaps unsurprising that Jones et al. (2023) showed that Māori cancer patients received most of their care needs from whānau. The wellbeing of the ill person is often interconnected with the wellbeing of the entire whānau, meaning wider support systems to maintain whānau wellbeing are also important for a person’s experience of illness. This social support may also include helping whānau navigate illness within a Western healthcare system, especially when there are concerns that healthcare providers do not know Māori culture (Kidd et al., 2013). Additional social support may then be provided by external organisations, to facilitate the interconnected wellbeing of the ill person and their entire whānau.

The wider discursive context

In Riley et al. Chapter 1.4, we drew on the poststructuralist work of Michel Foucault to theorise how power is integral to people’s understanding of themselves (e.g., Foucault, 1980). There, we discussed how discourses, defined as relatively coherent ways to make sense of an issue, produce understandings, norms, expectations, and subject positions, including those related to illness. Discourses provide recognisable ways of explaining or storying the world, with the outcome that people make sense of themselves in line with these concepts. For example, healthism is a discourse that constructs health as a measure of a person’s value, morality, and citizenship, a logic that produces illness as a kind of individual failure that may elicit shame in an ill person. The discourses available to an ill person therefore shape the intelligibility of their illness.

“Positivity” is an example of a wider discourse that intersects with healthism, in which thinking positively becomes constructed as an essential response to illness – and thus a moral duty if one wants to return to health. When these ideas become popular:

…the  general public may come to believe that one can conquer cancer by thinking positively and that if one is not getting a good response, one is not thinking positively enough, not laughing enough, or not being spiritual enough. Indeed, the explicit blame of people with serious illness for their failure to cure themselves in best-selling popular treatments of positive thinking is shocking and reprehensible (Aspinwall & Tedeschi, 2010, pp. 115-116).

Such positivity imperatives reduce ill people’s ability to express “negative” feelings, like fear, anxiety, and anger. For example, in their analysis of people’s blogs describing life after meningitis, Balint et al., (2024) reported the post:

I’m very silent when talking about meningitis to my family because I feel if I did talk about it I would just be told to grow up and to carry on thinking that I was lucky to have the outcome I had, and I know that.

Multiple actors produced and circulate discourses, within which, institutions play an important role (Foucault 2020). Medicine for example, legitimises some illness claims and not others. But, discourses also produces their own resistance, and both doctors and patients can push back with alternative discourses to medical consensus in an unfolding—if often unequal—dynamic of knowledge/power (Foucault, 1978; Suijker, 2023). Tracking the multiple discourses circulating around breast cancer, Greenhalgh (2017), for example, described three ways of framing this cancer:

• the tragedy genre, which focuses on individual women’s inexorable progression of disfigurement, compromised sexuality, and terminal illness, positioning women as victims and doctors as heroes in the battle with cancer
• feminist counter discourses, which highlight the sometimes brutalising experience of breast surgery, challenge the feminised “pink washing” of contemporary breast cancer activism, and “queers” cancer through “bald pride, rejection of reconstructive surgery and energising power of women’s support network networks” (p. 341)
• her own discourse that accounted for medical developments – of good prognosis but at a substantial price, paid in biographical disruption, a stigmatised cancer patient identity, and the material and lived-body strangeness produced by aggressive chemotherapy treatment that makes people profoundly sick in order to make them well.

Institutions play an important role in the production, and circulation of discourses that shape illness experience. These discourses also impact on aspects of the material world that shape illness. For example, public health discourses that shape retail outlets and local councils decisions to provide accessible clean toilets, mean people who manage urinary conditions can more fully participate in public life (Nielsen, 2024).

Institutions also shape the experience of illness because they control material resources, such as healthcare or financial aid. The material resources managed by, for example, government agencies and commercial health insurance companies, impact on a range of illness experiences, from how an illness might be treated, to a person’s vulnerability to poverty and further ill health. See, for example, McAllister et al.’s, (2013) discussion of how government/insurance categories of illness versus injury impact on health outcomes in Aotearoa New Zealand).

The list above is not exhaustive. Rather it is used to highlight how multiple elements shape illness, and the complex relational and situatedness of people’s experience of illness. Separately, and in interaction, these elements shape people’s intelligibility of themselves and their condition in ways that ultimately delimits what they can say, think, feel, or do in relation to their illness. Considering this broad range of elements is important because, be it at work, or in our personal lives, having this broad perspective enhances our ability to understand and support people who are ill.  Considering these multiple elements also connects with the critical health psychology pou in relation to taking an approach that goes beyond individualism, and instead, understanding illness as embedded within a person’s social context and produced within relations of power and equity.

The elements we have discussed suggest significant levels of complexity, especially when we consider they dynamically interact with each other. This complexity might leave us asking how to engage with so many interconnecting issues without finding it overwhelming? One answer to this question is stories.

Illness narratives

Stories offer an important vehicle through which people make sense of illness. They have several useful qualities for doing so. Stories can package complex information, like knowledge, values, identities, and expectations, into an accessible form. They may also incorporate temporality, such as when they explicitly or implicitly describe a past that has led to the current situation and/or orient to a future imagined outcome. The stories people tell about themselves, their families, or their ancestors can also shape their sense of identity and evoke strong feelings. As such, stories offer psychologists an important entry point into making sense of the complexities of illness experience (Crossley, 2000; Llewellyn-Beardsley, et al., 2019; Riessman, 2008).

Biographical disruption

A central concept in scholarship on narratives of illness is “biographical disruption”, which describes how illness disrupts the expected life story of a person. Bury (1982) coined this term when describing the experiences of participants in a study on being diagnosed with rheumatoid arthritis. Since then, many studies have shown how illness can challenge people’s existing self-narratives, creating existential anxiety, and questions such as “Why me?”, “Why now?”, “Whats going to happen to me?” – and even “Who am I?”. As one of Winkler’s (2022) participants with a long-term health condition explained, “in the beginning I felt like I had been dropped off in the middle of nowhere with no direction on how to get back home” (p. 1753).

Biographical disruption often forces individuals to fundamentally reevaluate their identity and capabilities. In Riley et al. Chapter 1.3, Carla Willig provided an example of biographical disruption when she described facing cancer as “a situation which seems to make no sense at all, which doesn’t seem to fit with the rest of our lives and over which we have little or no control” (Willig, 2009, p. 182).

There is a body of work evidencing biographical disruption as a robust concept for describing illness experience (e.g., Anderson & Bury, 2024; Dew et al., 2024; Locock et al., forthcoming; Raap et al., 2024). These studies show that biographical disruption is:

• evident across a range of illnesses related to acute, chronic, terminal, and curable diseases, as well as injuries and age-related frailty
• also useful for understanding experiences of parents and carers of children and young adults diagnosed with life limiting illnesses, or
• applicable to those who have the reverse experience, that is, people who are told they have life limiting illnesses but later find out it was either a misdiagnosis or who live longer than clinically expected.

Managing biographical disruption

The interruption of an expected life trajectory means ill people need to craft new narratives about who they are. These narratives can allow a person to make sense of themselves within their social context, drawing together ideas of who they were, their changing present, and their uncertain future. Pearce et al. (2020) connect our earlier discussion of the multiplicity of time to biographical disruption, explaining:

…[there is a] relationship between individual biography and its social context as the past is brought into line with a changing present, scaffolding an emergent future. Narrative is central to this process, operating as a hinge between multiple futures and a reinterpretable past (p. 378).

An influential figure in understanding narratives of illness, is sociologist Arthur Frank. Drawing on his own illness experience and subsequent scholarship, Frank argued that, in illness, people “lose their sense of what story they are part of” (2007, p. 390) and thus need new stories to make their situation intelligible, give meaning to their suffering, and psychologically care for them. The stories we tell are constrained by what is culturally intelligible, and from his late 20^th Century North American location, Frank identified three narrative templates people could use in response to illness, which he called “restitution”, “quest” and “chaos” (e.g., Frank, 2007, 2008, 2013).

Restitution narratives construct illness as a temporary issue and focus on restoring people back to their original life before illness. In this narrative, the person is constructed as having lived a full or normative life, which is interrupted by an illness that is treated, restoring their previous life. Illness is thus a temporary problem that does not substantially change the sense of self.

Quest narratives construct illness as a loss, but also as having some benefit, such as an insight, or new ways of thinking or being. These narratives involve “the heroic epic of call, descent, suffering, return, and at the end, some reward for suffering, either a material reward or a spiritual one” (Frank, 2008, p. 86).

Chaos narratives are “anti-narrative”, since events do not flow from one to another, ending with a sense of resolution. In the chaos narrative, the sense of suffering is not given a purpose, the future is unpredictable, and there is no happy ending. Instead, chaos reigns: “one thing happens after another, but nothing leads to anything else; there is no ordering of events, and that is what is chaotic” (Frank, 2008, p. 85).

Within these three narrative frameworks of restitution, quest, chaos, Frank argued that something is at risk, and that conflicting forces need to be addressed, creating a series of “dramas” that need to play out.

(1) Genesis dramas focus on what caused the illness. For example, the dominance of healthism means people with a noncommunicable disease might narrate the genesis of their illness in terms of self-blame, creating additional distress. In Robson et al.’s (forthcoming) study of Welsh people managing a diagnosis of coronary heart disease, for example, “Louise” described how her nurse relieved her genesis drama associated with this logic of blame by offering an alternative, fatalistic, narrative that constructed illness as cyclical, natural, and uncontrollable:

I started to cry the other day when I was with [nurse] and I said, “what did I do wrong?” She says, “you didn’t do anything wrong” she says “Louise if this is genetics you did nothing, it just happened, just like it’s you know, trees get leaves trees, lose leaves, trees get leaves, trees lose leaves, one branch might grow bigger than the other branch, it’s part of the tree”. And it’s the same thing with me, and as long as I can stay on top of that thought I’m okay (Louise, cis woman, late 60s, self-employed professional, in Robson et al., forthcoming, p. 11).

(2) Emotion dramas are the emotional displays that are socially required or prohibited. In the restitution and quest narratives the ill person is restored to health or finds meaning in illness. As such, these narratives have an affirmative, hopeful orientation.

But “looking on the bright side” can also be experienced as an obligation (e.g., Wilkinson & Kitzinger, 2000), creating social pressures on ill people towards telling quest and resolution narratives while avoiding chaos stories (Donnelly, 2024; Frank, 2008). Emotional dramas can therefore occur when others enforce quest or resolution narratives as a strategy for the sick person to manage their illness, or to mediate their own fears of illness (Frank, 2008). Willig (2009), for example, described how her friends rejected the strategies she had carefully developed for managing her existential angst because they were not positive enough.

In contrast to the culturally valued quest and resolution narratives, chaos stories are often resisted as “too transgressive, frightening, and difficult for the listener to hear” (Sparkes, 2014, p. 38). Individuals trying to tell chaos narratives may thus be prevented from telling their story when people explicitly silence them, withdraw from them, or unhelpfully offer solutions as if their ongoing challenges are easy to fix (Donnelly, 2024; Frank, 2008). Raap et al. (2024), for example, described how, in their UK based study, parents felt socially policed from describing their ongoing challenges related to caring for their disabled children. As one participant explained, “It feels a bit like: ‘oh, there she is again’ (bored tone)” (p. 9).

Being listened to is a form of recognition because it validates the speaker, and their claims for who they are, and what is happening to them. Thus, for a narrative to be meaningful and “take care” of a person, it needs to be listened to (Frank, 2008). This means that people are dependent on others to hear their story.

(3) Faith and desire dramas relate to how “humans have the particular capacity to interpret suffering with an awareness of some purpose or dimension that transcends the self” (Frank, 2008, p. 91). This purpose may be explicitly religious, secular, or even mundane, but gives people a sense of something beyond themselves. Examples include a greater recognition of the beauty of life and the belief that everything happens for a purpose.

(4) Loss and fear dramas refer to the potential for illness to create multiple losses related to body functioning, relationships, capacity to work, future expectations, and life. In a context of uncertainty, fear of these losses can feel so terrifying as to be unspeakable, trapping the ill person in their own horror story. Relatedly, Crossley (2003) argued that that when patients are encouraged to place faith in treatment as a strategy for dealing with the existential crisis brought on by serious illness, they are left with anxiety provoking “‘unspoken narratives’ of uncertainty, fear and skepticism in relation to the power of medicine” (p. 439). According to Frank (2007), moving out of this drama requires a person to express their fear fully so that it can evolve into a new story.

(5) Self and identity dramas relate to creating a new sense of self when previous stories no longer hold meaning: “part of managing the experience of illness is to find stories that … teach people how to be who they find themselves having to be” (Frank, 2007, p. 391).

Dramas of self are shaped by individual psychology and life histories, but these are interconnected with cultural norms. Gender, ethnicity, class, sexuality, age, and so forth—as they intersect with illness—thus shape the possible dramas of self (see text box below). For example, in their study of identity work people do in response to chronic disease, Clur and Barnard (2024, p. 6), reported how “Fiona” described the loss of her hair in the following terms:

Hair is seen through the ages as a symbol of femininity, sensuality, and beauty but more than that, it gives you an identity. My whole life, my hair was my joy, and I can honestly say that I never had a bad hair day … A deep pain lodged in my body and, believe me, for a long time, I could not look at myself in the mirror without experiencing pain … I felt naked. It was the start of a long mourning process (Fiona, cis woman with chronic disease for over 14 years, living and working in South Africa, Afrikaans speaker, aged between 40–62).

Clur and Barnard (2024) also tracked how Fiona developed new narratives for herself, first by finding a different cultural ideal to identify with, in this case related to being strong-willed and adaptable. And then, unable to bridge the gap between her sick body and cultural ideals, Fiona shifted to a narrative focused on meaningfulness, which for her related to being creative through art.

Although we have described Frank’s narratives and dramas separately above, they are often experienced as entangled and fluid. People can shift between narratives, use combinations, or only use some elements. Different dramas also operate within these narratives depending on how the person, and the people around them, respond to the illness.

People can also get stuck in a narrative that stops dramas from being resolved. Sparkes (2014) offers an example in an elite sportsman, who he calls “David”, who was part of a life history study (Sparkes et al., 2012). Throughout his cancer journey, David focused on the restitution narrative, connecting it to his sporting identity, which he associated with valued notions of mental toughness and courage that mapped onto his successful sporting career. In so doing, David sought to “win” his battle with cancer, by applying the narratives that had given his life meaning before his illness.

But, by only drawing on the restitution narrative, Sparkes et al. (2012) sees David missing opportunities to frame his illness as part of a quest for different kinds of knowledge, or to connect with the other cancer patients who represented dispreferred frailty to David. These lost opportunities are particularly poignant given that David died. In the battle narrative, David loses. This construction was not only shared by David, but, Sparkes et al. (2012) argued, reproduced in public discourse by national newspapers, which had made much of David’s early “battle” with cancer but offered little coverage of his death.

As Frank (2007) argues, “not all stories do an equally good job of taking care of people” (p. 383). Sparkes’ (2014) analysis highlighted how people can get stuck in a narrative that limits their capacities to respond to illness, especially narratives that have greater value or intelligibility within the wider culture. Through David’s example, the analysis showed the importance of people being able to flexibility develop narratives that provide comfort or meaning as their illness progresses. Sparkes sees this ability to flexibly develop narratives as a collective responsibility, since it requires others to listen to ill people when their stories are difficult to hear, and public platforms to circulate stories about ongoing struggles that are not easily resolved.

Limitations to biographical disruption

We have discussed how illness can create a profound shock to a person’s sense of self, body, and relations with others, requiring people to navigate biographical disruption and develop new narratives about themselves. We have also noted there is a substantial body of work demonstrating biographical disruption in a variety of illness experiences. But despite the robustness of biographical disruption as an explanatory framework for illness experience, there are limitations and critiques of the concept. As we outline below, these critiques challenge the normativity of health implicit in biographical disruption and recognise the continuum of health experiences where health norms are not uniformly established or disrupted.

Other cultural stories

Frank’s narratives resonate with many people because these stories have long histories. For example, the quest narrative maps onto the “hero’s journey” story, which can be found in most cultures’ mythic traditions, and is ubiquitous in popular culture (e.g., movies) (Campbell, 1949, 2008). But the supporting research for his narratives often comes from researchers located within North America and Europe, increasing the chances of missing other cultural narratives that can shape illness experience. For example, in Aotearoa New Zealand, Diana and Mark Kopua use Māori stories as a form of healing for neurodiverse children who can find understanding or acceptance through Māori creation stories. These include those of Whiro who embodies negativity in thought, emotion and action, or Uepoto, who is full of mischief (Duff, 2018; Rangihuna et al., 2018). Further, Brittain (2022) showed how elements of chaos, quest and enlightenment narratives were differently differently configured within te ao Māori as part of the cycle of te kore (chaos/potentiality), te pō (night/darkness), te ao mārama (light/day) in Māori stories of mental distress.

Illness specific considerations

While biographical disruption occurs across various illnesses, focusing on this broader concept can overlook how the unique symptoms, and progression, of specific illnesses shape individual experiences. For example, asthma is often managed alongside daily life with medication, but, for people with severe asthma, the condition can be deeply disempowering, and more likely to be experienced as biographical disruption (Eassey et al., 2019).

Developmental considerations

Scholars taking a developmental psychology perspective argue that biographical disruption occurs in a different way for children and adolescents than for adults. For example, Spray’s (2022) study in Aotearoa New Zealand with children with asthma, and their parents, showed that while the children expressed acute fear in relation to their severe breathing problems, these were framed as “rare events that punctuated otherwise near-normal life” (Spray, 2022, p. 326). In contrast, the parents were profoundly affected by these acute moments, and their notions of normality fundamentally disrupted.

Accounting for such differences in children’s experiences of biographical disruption, Spray (2022) drew on neuroscience to argue that childhood development involves the brain assessing and calibrating what is normal for the “body-within-a-world it occupies” (Spray, 2022, p. 337). Thus, when children experience a disruption, they adapt to a new normal and/or fluctuate between different states, with the effect that disruption is experienced more momentarily than for adults. For children, Spray suggested, the concepts of ruptures, discontinuities, and interference, function as alternatives to biographical disruption. These concepts reflect children’s experiences of illness as disruptive, but not creating the radical challenge to self that it might do in adults.

Temporal rhythms of illnesses

Researchers have highlighted how creating a “new normal” after biographical disruption is difficult for people managing health conditions that are ongoing, changing, and unpredictable. Cluley et al. (2023), for example, discussed how, in their UK study, patients with kidney disease had to continuously negotiate multiple physical, psychological, and social disruptions. And that their strategies to address these disruptions did not lead to permanent or satisfactory solutions because new problems occurred, or solutions to solve the problems created further problems. For example, to manage financial insecurity a participant moved back to his parents’ home, but found the experience “suffocating” as parental concern overrode his parents’ ability to recognise, or give legitimacy, to his attempts to live a close-to-normal life. Drawing on the philosophy of Hegel, which proposes that ideas unfold through a continuous process of contradiction and negation, the researchers offered the alternative concept of “biographical dialectics” to describe this “recurrent pattern of issue, problem, answer” (Cluley et al., 2023, p. 7; italics in the original).

When illness is the norm

Biographical disruption is not relevant for people who experience illness as the norm, such as people who have been ill from an early age or who are part of communities where the onset of illness is to be anticipated. For people in these circumstances, researchers have proposed the concept of “biographical flow”, in which illness is integrated into expected life trajectories without too much disruption (Faircloth et al., 2004).

Centring issues of equity in illness

Biographical flow, and its variants, are more likely to occur in marginalised and disadvantaged communities where illness is the norm. In such communities, illness norms may apply to children as well as adults. Monaghan and Gabe (2015, p. 1250), for example, showed how children from the Irish traveller community^[3] experienced managing a chronic health condition, even when it created serious experiences requiring hospitalisation, as “‘not that bad’, when all things were considered”.

Such research highlights the importance of centring issues of equity in understandings of illness. It also throws into sharp relief how psychologised the concept of biographical disruption is, with its focus on how individuals negotiate the emotional challenges that an illness diagnosis can bring. Instead, as Williams (2000) asked in his critical assessment of biographical disruption: given that people often account for their illness in terms of stressful events that weakened them or triggered an illness, should we not focus on social structures causing illness, rather than psychological responses to it? Echoing the idea that illness experience is produced through, and within, its social context, Locock, et al. (forthcoming) state:

Living with a long-term illness is not just an individual experience arising as a consequence of unfortunate personal circumstances. People with a long-term condition or disabilities face discrimination in the public and private spheres which restricts equal participation and opportunity in education, health service provision, employment, housing, transport, the built environment, and leisure and social activities. Thus, the “disruption” is neither caused nor experienced on the level of an individual’s life story. (Individual biographies and social structures section, para. 1).

Relatedly, critical disabilities scholars problematise the “personal tragedy” framing of illness in biographical disruption. Instead, they foreground a social model of disability, and the need to ask:

How are people becoming disabled, debilitated, run down, worn out by violence both fast and slow: capitalist exploitation, environmental racism, war, state violence, policing, infrastructural neglect, gender violence, denial of health care? And under such conditions, conditions that do not fall equally, what can it possibly mean to desire disability? (Kafer, 2013, p. 419).

Conclusion

In this chapter, we have explored the question: How do people experience illness? We started by considering the multiple factors that shape that experience. These factors include:

• personal and cultural ways of making sense of illness
• access to resources, including social support, medical treatment, and financial
• broader institutional and discursive frameworks that shape how illness is understood and experienced.

In considering these factors, we have shown how illness is complex and enmeshed within the social context, demonstrating how the experience of being ill is significantly more than personal interpretations of specific disease symptomology. Seeking a theoretical framework to manage this complexity, we turned to narratives and the power of stories. Considering key concepts and illness narratives, we discussed how illness can create “biographical disruption” requiring new stories to be told. Drawing on the foundational work of Arthur Frank, in particular, we discussed restitution, quest, and chaos illness narratives, and how each creates conflicting forces that need to be resolved.

We have also considered scholarship demonstrating illness stories beyond biographical disruption. In this, we critically reflected on taken-for-granted ideas about norms of illness, highlighting how culture, developmental stage, and social and economic marginalisation shape the illness narratives people can tell. We also discussed critical disability scholarship’s emphasis on examining the social context in the production, and experience, of disability—arguments that we can also apply to illness.

Across the chapter, we have built on the foundational ideas set up in the previous chapters, connecting with our critical health psychology pou, in the following ways:

• Theoretical/conceptual thinking: Building on our discussion of discourse and power in Riley et al. chapter 1.4, we introduced the concept of narrative, and how stories shape people’s illness.
• Challenging taken-for-granted understandings: While acknowledging the value of Frank’s illness stories and the concept of biographical disruption, we highlighted their individualistic focus, critically examining how they assume autonomous, healthy bodies as the norm, overlooking the inherent interdependence of people and how these norms reflect positions of privilege.
• Paying attention to issues of power and equity: Our analysis highlighted how illness experiences are complex, socially influenced, and embedded in power dynamics.
• Moving beyond individualism: We emphasised the role of broader discourses and narratives in helping people make sense of their experiences, for instance, discussing Sparkes’ (2014) critique of media portrayals of cancer as a “battle”. We also highlighted the importance of institutions in supporting people to live well with illness, such as accommodating “crip time”.
• Considering knowledge as produced in context: Throughout this chapter, we demonstrated that meaning-making is socially situated. We invited readers to question whether dominant narratives about the self are truly universal human experiences or products of prevailing discourses, such as Western ideals of autonomous individualism.

In the next chapter we apply this thinking to how people experience treatment (Riley et al. Chapter 1.6). We also note how the foundational concepts we have covered here will be  developed in Part Two (Understanding Health and Illness), which considers how symptom interpretation and diagnosis are socially negotiated.

Knowledge Check

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