'It feels like my metabolism has shut down'. Negotiating interactional roles and epistemic positions in a primary care consultation.

INTRODUCTION: Our aim is to explore the ways in which a patient and a general practitioner (GP) negotiate knowledge claims stemming from different epistemic domains while dealing with a mismatch between experiential and biomedical knowledge during the clinical consultation. We interpret their interaction in relation to the sociocultural context in which their negotiation is embedded and identify factors facilitating their successful negotiation (a medical error is avoided). METHODS: Based on a narrative analysis of a verbatim transcript of a complete naturally occurring primary care consultation, we explore the moment-to-moment unfolding of talk between the patient and the GP (two women). FINDINGS: The patient experiences symptoms of what she interprets as a thyroid condition, and indirectly asks for medication. She presents her case by drawing on experiential knowledge ('it feels like my metabolism has shut down') and biomedical knowledge (while suggesting a diagnosis and a diagnostic test). The GP informs her that her thyroid blood tests are normal and uses biomedical knowledge to explain why she turns down the patient's request. This stages a potential conflict between the patient's embodied experiential knowledge and the doctor's biomedical knowledge. However, during their encounter, the patient and the GP manage to co-construct the patient's illness story and make shared decisions about further actions. CONCLUSION: The transition from potential conflict to consensus is a result of the mutual efforts of two parties: a patient who persistently claims experiential as well as biomedical knowledge while at the same time deferring to the GP's professional knowledge, and a GP who maintains her epistemic authority while also acknowledging the patient's experiential and biomedical knowledge. PATIENT AND PUBLIC CONTRIBUTION: Our empirical data are sourced from a data archive and patients were not involved in the design or conduct of the study, but our study is based on a naturally occurring clinical consultation with a patient.

Modes of Interaction in Naturally Occurring Medical Encounters With General Practitioners: The "One in a Million" Study.

In this article, we qualitatively explore the manner and style in which medical encounters between patients and general practitioners (GPs) are mutually conducted, as exhibited in situ in 10 consultations sourced from the One in a Million: Primary Care Consultations Archive in England. Our main objectives are to identify interactional modes, to develop a classification of these modes, and to uncover how modes emerge and shift both within and between consultations. Deploying an interactional perspective and a thematic and narrative analysis of consultation transcripts, we identified five distinctive interactional modes: question and answer (Q&A) mode, lecture mode, probabilistic mode, competition mode, and narrative mode. Most modes are GP-led. Mode shifts within consultations generally map on to the chronology of the medical encounter. Patient-led narrative modes are initiated by patients themselves, which demonstrates agency. Our classification of modes derives from complete naturally occurring consultations, covering a wide range of symptoms, and may have general applicability.

Cross-sectional study of the differences between measured, perceived and desired body size and their relations with self-perceived health in young adults: The Tromsø Study - Fit Futures 2.

AIMS: The aim of this study was to explore the relationships between measured body size (body mass index (BMI)), perceived body size, weight change wishes and self-perceived health in young adults. METHODS: The participants were recruited from a school-based population study in Norway, the Tromsø Study: Fit Futures 2, carried out in 2012-2013. A total of 629 young women and men (aged 18-23 years) reported on the main variables. The data were collected through weight and height measurements and questionnaires. The analyses were performed with descriptive statistics, the χ2 test and Student's t-test. RESULTS: A total of 20% of the women and 28% of the men were overweight or obese. There were considerable discrepancies between the measured BMI and perceived body size in both sexes. A substantial number of participants wanted to change their weight. Among the 174 women who reported that they were trying to lose weight, as many as 57 (32.8%) had a low normal weight (BMI 18.5-21.9 kg/m2). Correspondingly, among the 66 men who reported that they wanted to gain weight, as many as 19 (28.8%) had a high normal weight (BMI 22-24.9 kg/m2). We found no relation between body size perceptions, weight change wishes and self-perceived health. CONCLUSIONS: Discrepancies between measured and perceived body size and weight change wishes are common findings in young adults. The lack of relation with self-perceived health found in our study is surprising and not easy to interpret. To gain more knowledge about these matters, further research, including both qualitative and quantitative studies, is needed.

Motivation and obstacles for weight management among young women - a qualitative study with a public health focus - the Tromsø study: Fit Futures.

BACKGROUND: Due to a worldwide increase in overweight and obesity, weight-management through lifestyle changes has become an important public health issue. Adolescents and young adults comprise a vulnerable group. The transition into adulthood represents a stage in life when establishing good lifestyle habits for the future is important. The aim of this study was to explore motivation and obstacles for weight reduction, weight maintenance and healthy lifestyle choices in young women. METHODS: We conducted semi-structured in depth interviews with 12 young women, both overweight and normal weight, recruited from a school-based population survey. By the use of thematic analysis we searched the interview text for relevant meaning units that emerged as topics that illuminated our research questions. RESULTS: A strong motivation for obtaining or keeping normal weight was clearly present among the participants. Independent of weight-group, the participants described increased levels of physical activity, better eating habits and regularity in daily life as desirable changes. Parents were described as important influencers regarding lifestyle habits. Several participants expressed a need for more information about healthy nutrition and eating. Their motivation for physical activity depended on a positive social setting and elements of joy. The participants described the transition into adulthood including moving out of their parents' home and other structural changes in everyday life, as challenging. It affected their food choices and eating habits and other lifestyle issues. High costs of healthy food and sports activities were frequently mentioned among the obstacles they encountered. CONCLUSION: The results revealed an obvious motivation for lifestyle changes in individuals and environmental challenges for young women in the relevant stage of their life-course. There seems to be a need for health strategies that strengthens individuals' capacity to overcome the environmental challenges in the transition to adulthood. This should include reliable and accessible health education/information regarding healthy nutrition, eating habits, food choices and preparation of meals. Structural initiatives such as easier access to affordable healthy food and less expensive opportunities for physical activity and sports should be considered.

"I Do Not Really Belong Out There Anymore": Sense of Being and Belonging Among People With Medically Unexplained Long-Term Fatigue.

In this article, we explore relations between health, being, belonging and place through an interpretive thematic analysis of autobiographic text and photographs about the everyday lives of 10 women and men living with medically unexplained long-term fatigue in Norway. While interpreting their place-related illness experiences, we ask: How do they experience their being in the world, where do they experience a sense of belonging/not belonging, and why do places become places of belonging/not belonging? The participants describe experiences of (a) being socially detached and alienated, (b) being imprisoned, (c) being spectators who observe the world, and (d) senses of belonging. They describe senses of being and belonging/not belonging as closely attached to physical and symbolic aspects of places in which they reside, and they wistfully reflect on the question of "why." The study illustrates the influence of experienced place-material as well as immaterial-on health and illness.

Experiences of general practitioner continuity among women with chronic fatigue syndrome/myalgic encephalomyelitis: a cross-sectional study.

BACKGROUND: Continuity of care is important for patients with chronic illness in need of coordinated healthcare services from multiple providers. Little is known about how patients with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) experience continuity of GP care. This study explores how women with CFS/ME experience GP care across the three dimensions of continuity: informational, management, and relational continuity. METHODS: This cross-sectional study uses questionnaire data collected from members of The Norwegian ME Association. Descriptive statistics and logistic regressions were used to estimate experiences of continuity, and associations with age, education, self-rated degree of CFS/ME, duration of the GP relation (GP duration), and number of GP visits for CFS/ME-related issues during the previous year (GP frequency). RESULTS: Almost two-thirds of participants reported positive experiences across all three dimensions of GP continuity of care; 64.4% for informational, 64.1% for management, and 77.2% for relational continuity. Lower educational attainment was associated with more negative experiences of informational continuity (primary school only compared to university educated: odds ratio [OR] 0.12, confidence interval [CI] 0.03-0.49, p = 0.003). Compared to participants aged 40-59 years, those aged 60+ years were significantly less likely to have experienced poor (negative) management continuity (OR 0.25, CI 0.09-0.76, p = 0.014). A GP relationship of three or more years was associated with positive experiences of relational continuity (OR 2.32, CI 1.09-4.95, p = 0.030). Compared to those with moderate CFS/ME, those who graded their CFS/ME as severe or very severe were significantly more likely to have negative experiences of relational continuity (OR 0.38, CI 0.14-0.99, p = 0.047). CONCLUSIONS: A large proportion of participants experienced all three aspects of continuity of GP care (especially the relational dimension) positively. Informational and management continuity scores were moderately lower. Our results suggest greater emphasis on information giving, feedback, and better coordination of care to be good strategies for practice improvement for this patient group.

Medical constructions of long-term exhaustion, past and present.

Culture and history affect the ways in which medical knowledge is shaped, sustained and changed. The less knowledge we have, the larger the space for the cultural imprint becomes. Based on these assumptions, we ask: how have medical constructions of long-term exhaustion changed over time, and how are changing constructions related to societal change? To discuss these questions we conducted a comparative study of medical texts from two historical periods: 1860-1930 and 1970-2013. Our data are limited to two diagnoses: neurasthenia and encephalomyelitis. After comparing the two periods by identifying diverging and converging aspects, we interpreted observed continuities and interruptions in relation to historical developments. We found that in the medical literature, long-term exhaustion became transformed from a somatic ailment bred by modern civilisation to a self-inflicted psychiatric ailment. At the same time, it changed from being a male-connoted high-status condition to a female-connoted low-status condition. We interpret these changes as contingent upon culturally available modes of interpretations. Medical knowledge thereby becomes infused with cultural norms and values which give them a distinct cultural bias. The historical controversies surrounding this medically contested condition neatly display the socially contingent factors that govern the social construction of medical knowledge.

"United We Stand": Framing Myalgic Encephalomyelitis in a Virtual Symbolic Community.

In this article, we report on a study that seeks to explore how the contested chronic condition myalgic encephalomyelitis (ME), one of the current medical diagnoses for medically unexplained long-term exhaustion, is negotiated within the context of Norwegian internet sites. From an analysis of discussions on 14 internet forums sustained by and for people living with ME, we seek to understand how their online activity sustains a virtual symbolic community (VSC). After exploring the content on these sites, we identified four discursive domains, or fields of conversation, that are demarcated by a discursive frame, or norms, values, and goals that define and reinforce the boundaries of the community. Interpreting discursive domains and their discursive frame provides insight not only to the culture of the ME VSC but also to its role in an international social health movement, including its potential for becoming politically influential.

Continuity of GP care is associated with lower use of complementary and alternative medical providers: a population-based cross-sectional survey.

BACKGROUND: Continuity of general practitioner (GP) care is associated with reduced use of emergency departments, hospitalisation, and outpatient specialist services. Evidence about the relationship between continuity and use of complementary and alternative medical (CAM) providers has so far been lacking. The aim of this study was to test the association between continuity of GP care and the use of CAM providers. METHODS: We used questionnaire data from the sixth Tromsø Study, conducted in 2007-8. Using descriptive statistical methods, we estimated the proportion using a CAM provider among adults (30-87 years) who had visited a GP during the last 12 months. By means of logistic regressions, we studied the association between the duration of the GP-patient relationship and the use of CAM providers. Analyses were adjusted for the frequency of GP visits, gender, age, marital status, income, education, and self-rated health and other proxies for health care needs. RESULTS: Of 9,743 eligible GP users, 85.1% had seen the same GP for more than two years, 83.7% among women and 86.9% among men. The probability of visiting a CAM provider was lower among those with a GP relationship of more than 2 years compared to those with a shorter GP relationship (odds ratio [OR] 0.81, 95% confidence interval [CI] 0.68-0.96). Other factors associated with CAM use were female gender, poor health, low age and high income. There was no association with education. CONCLUSIONS: Continuity of GP care as measured by the duration of the GP-patient relationship was associated with lower use of CAM providers. Together with previous studies this suggests that continuity of GP care may contribute to health care delivery from fewer providers.

Conceptualizing negotiation in the clinical encounter - A scoping review using principles from critical interpretive synthesis.

OBJECTIVE: Negotiation as an analytical concept in research about clinical encounters is vague. We aim to provide a conceptual synthesis of key characteristics of the process of negotiation in clinical encounters based on a scoping review. METHODS: We conducted a scoping review of relevant literature in Embase, Psych Info, Global Health and SCOPUS. We included 25 studies from 1737 citations reviewed. RESULTS: We found that the process of negotiation is socially situated depending on the individual patient and professional, a dynamic element of the interaction that may occur both tacitly and explicitly at all stages of the encounter and is not necessarily tied to a specific health problem. Hence, negotiation is complex and influenced by both social, biomedical, and temporal contexts. CONCLUSIONS: We found that negotiation between patient and health professional occurs at all stages of the clinical encounter. Negotiation is influenced by social, temporal, and biomedical contexts that encompass the social meeting between patient and health professional. We suggest that health professionals strive to be attentive to patients' tacit negotiation practices. This will strengthen the recognition of the patients' actual wishes for their course of treatment which can thus guide the health professionals' recommendations and treatment.

'My cousin said to me . . .' Patients' use of third-party references to facilitate shared decision-making during naturally occurring primary care consultations.

In this paper, we explore the ways in which patients invoke third parties to gain decision-making influence in clinical consultations. The patients' role in decision-making processes is often overlooked, and this interactional practice has rarely been systematically studied. Through a contextual narrative exploration of 42 naturally occurring consultations between patients (aged 22-84) and general practitioners (GPs) in England, we seek to fill this gap. By exploring how and why patients invoke third parties during discussions about medical treatments, who they refer to, what kind of knowledge their referents possess, and how GPs respond, our main aim is to capture the functions and implications of this interactional practice in relation to decision-making processes. Patients refer to third parties during decision-making processes in most of the consultations, usually to argue for and against certain treatment options, and the GPs recognise these utterances as pro-and-contra arguments. This enables patients to counter the GPs' professional knowledge through various knowledge-sources and encourage the GPs to target their specific concerns. By attributing arguments to third parties, patients claim decision-making influence without threatening the GPs' authority and expertise, which their disadvantaged epistemic position demands. Thereby, patients become able to negotiate their role and their epistemic position, to influence the agenda-setting, and to take part in the decision-making process, without being directly confrontational. Invoking third parties is a non-confrontational way of proposing and opposing treatment options that might facilitate successful patient participation in decision-making processes, and so limit the risk of patients being wronged in their capacity as knowers.

Attitudes to seeking medical assistance--variations depending on social background?

BACKGROUND: Increasing socio-economic inequalities in health, within a country as well as internationally, give rise to a timely question: Are there any systematic differences between people from differing social backgrounds with regard to their attitude to seeking professional medical assistance when experiencing physical problems of varying kinds? MATERIAL AND METHOD: The data material is taken from the Norwegian part of the cross-sectional survey "European Social Survey" (2004-2005). The analyses are based on data from personal interviews with 741 men and 694 women aged 25-75. The correlation between education level and attitude to seeking medical assistance in the case of four minor hypothetical symptoms was analysed using logistic regression. RESULTS: The proportion responding that they would have sought medical attention decreased with increasing level of education. In the unadjusted analyses, the education-related differences were statistically significant for all symptom scenarios for both genders. In the adjusted analyses, this pattern was observed only among women: women with the lowest level of education chose to see a doctor more often than women with the highest level of education (OR varied from 1.62 (95% CI 1.02-2.56) for a severe headache to 2.24 (95% CI 1.40-3.58) for a sore throat). INTERPRETATION: The findings indicate that attitudes to seeking medical assistance - in the sense of how people believe they ought to think and act, and what they believe to be perceived as socially acceptable in given situations - vary systematically with level of education.

"I'm not the doctor; I'm just the patient": Patient agency and shared decision-making in naturally occurring primary care consultations.

OBJECTIVES: To explore interactional processes in which clinical decisions are made in situ during medical consultations, particularly the ways in which patients show agency in decision-making processes by proposing and opposing actions, and which normative dimensions and role-expectations their engagement entail. METHODS: Narrative analysis of verbatim transcripts of 22 naturally occurring consultations, sourced from a corpus of 212 consultations between general practitioners and patients in England. After thematically coding the whole dataset, we selected 22 consultations with particularly engaged patients for in-depth analysis. RESULTS: Patients oppose further actions more often than they propose actions, and they oppose more directly than they propose. When they explain why they propose and oppose something, they reveal their values. Patients' role-performance changes throughout the consultations. CONCLUSION: Assertive patients claim - and probably also achieve - most influence when they oppose actions directly and elaborate why. Patients display ambiguous role-expectations. In final concluding stages of decision-making processes, patients usually defer to GPs' authority. PRACTICE IMPLICATIONS: Clinicians should be attentive to the ways in which patients want to engage in decision-making throughout the whole consultation, with awareness of normative dimensions of both process and content, and the ways in which patient's actions are constrained by their institutional position.

Negotiating uncertainty in clinical encounters: A narrative exploration of naturally occurring primary care consultations.

Based on a narrative analysis of 20 naturally occurring clinical consultations between general practitioners and patients in England, sourced from the One in a million data archive, we explore how they conceptualize and negotiate medical and existential uncertainty. To capture the interactional element, which is often overlooked, three consultations receive special attention. While exploring the ongoing dynamics of the moment-to-moment realization of negotiations, we relate their actions to the institutionalized positions of doctor and patient. Situating their negotiations in the sociocultural context in which their interaction is embedded reveals how consultations unfold as a result of communication between two different positions in a normatively structured system. When uncertainty prevails, both patients and GPs mainly conceptualize uncertainty indirectly. By conceptualizing uncertainty indirectly and in a depersonalized manner, GPs manage to safeguard against clinical errors without compromising their authority and credibility. Contrary to medical uncertainty, which is continuously discussed, existential uncertainty usually recedes in the background. However, as our consultations unfold it becomes evident that medical and existential dimensions of uncertainty are inextricably linked. By acknowledging that clinical uncertainty is not only an epistemic concern but also an existential one, existential aspects may usefully rise to the surface.

Health related quality of life of people with non-epileptic seizures: The role of socio-demographic characteristics and stigma.

PURPOSE: People with non-epileptic seizures (NES) consistently report poorer Health-Related Quality of Life (HRQoL) than people with epilepsy. Yet, unlike in epilepsy, knowledge of how social factors influence the HRQoL of adults with NES is limited. To add to the evidence base, this study explores the relationship between HRQoL and perceived stigma among adults with NES, and the role of socio-demographic characteristics. METHODS: Data was gathered from a survey of 115 people living with the condition, recruited from online support groups. Participants provided socio-demographic and health-related data and completed a series of questions investigating their HRQoL (QOLIE-31) and stigma perceptions (10-item Epilepsy Stigma Scale). RESULTS: Participants were found to experience high levels of perceived stigma (median 5.2, mean 4.9). A significant and moderate inverse correlation was observed between HRQoL and stigma (rs - 0.474, p = < 0.001); suggesting higher perceptions of stigma contribute to poorer HRQoL among adults with NES. Stigma perceptions were found to be most strongly associated with the seizure worry (rs = - 0.479), emotional wellbeing (rs = - 0.421), and social functioning (rs = 0.407) HRQoL domains. Participants who reported being in employment or education were found to have significantly better HRQoL than those who were not (p = < 0.001). CONCLUSION: More (qualitative and quantitative) research is justified to understand how - and why - those with the condition experience stigmatisation, and the factors that impede and help facilitate the participation of people with NES in education and employment.

"It´s incredible how much I´ve had to fight." Negotiating medical uncertainty in clinical encounters.

PURPOSE: Clinical encounters related to medically unexplained physical symptoms (MUPS) are associated with high levels of conflict between patients and doctors. Collaborative difficulties are fused by the medical uncertainty that dominates these consultations. The main aim of this study is to explore the interactional dynamics of clinical encounters riddled by medical uncertainty, as experienced by people living with long-term medically unexplained fatigue in Norway. METHOD: A qualitative thematic analysis of written texts from 256 study participants. RESULTS: We found that patients experience being met with disbelief, inappropriate psychological explanations, marginalisation of experiences, disrespectful treatment, lack of physical examination and damaging health advice. The main source of their discontent is not the lack of biomedical knowledge, but doctors who fail to communicate acknowledgement of patients' experiences, knowledge and autonomy. War metaphors are emblematic of how participants describe their medical encounters. The overarching storyline depicts experiences of being caught in a power struggle with doctors and health systems, fused by a lack of common conceptual ground. CONCLUSION: When physical symptoms cannot be detected, explained and managed by biomedical knowledge and technology, good doctor-patient partnerships are crucial. Without clearly acknowledging patients' perspectives and capabilities in clinical practice, such partnerships cannot be achieved.

" Blaming, shaming, humiliation": Stigmatising medical interactions among people with non-epileptic seizures.

Background: People with non-epileptic seizures (NES) describe challenging relationships with health professionals, and explain negative interactions as common and expected. Despite these difficulties, little is known about how people with NES experience difficult healthcare encounters. Methods: Using a thematic discourse analysis approach, we analysed the free-text survey responses of 135 people with NES and asked: what kind of challenges do people living with this condition encounter when interacting with health professionals, and how do they experience the consequences of difficult interactions? We explore their experiences by interpreting the latent meaning of participants' texts from a social-constructionist perspective on health and illness. Results: The overarching narrative depicts a fundamental breakdown in patient-provider relationships. According to our data, the negative experiences of study participants emerge from more than practitioners' lack of awareness of NES and access to information about the condition - to the extent that it is available. In examining the challenges people with NES encounter when interacting with health professionals, their main experiences centre on blame and humiliation. When exploring their experiences, theories of stigma serve as a useful theoretical framework. Conclusions: Normative judgements arising from psychogenic understandings of NES are stigmatising and restrict professional displays of respectful (patient-centred) care. Those with the condition depict being negatively stereotyped, illegitimated and held morally culpable by health professionals. Perceived to lack medical, moral and credible status, participants describe practitioners who treat them with disrespect, and some recount conduct that defies all ethical and professional obligations and standards. These encounters can have wide-ranging adverse consequences for patients: emotionally, physically, and for their future healthcare. The quality of healthcare interactions for people with NES requires urgent improvements. In addition to increased awareness of the condition, practitioners need to be conscious of making and acting on adverse moral appraisals when interacting with this patient group.

Generating a Social Movement Online Community through an Online Discourse: The Case of Myalgic Encephalomyelitis.

Online communities, created and sustained by people sharing and discussing texts on the internet, play an increasingly important role in social health movements. In this essay, we explore a collective mobilization in miniature through an in-depth analysis of two satiric texts from an online community for people with myalgic encephalomyelitis (ME). By blending a sociological analysis with a rhetorical exploration of these texts, our aim is to grasp the discursive generation of a social movement online community set up by sufferers themselves to negotiate and contest the dominating biomedical perception of their condition.

How do women with chronic fatigue syndrome/myalgic encephalomyelitis rate quality and coordination of healthcare services? A cross-sectional study.

OBJECTIVE: To test the association between self-rated health and self-rated degree of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), and CFS/ME patients' assessment of quality of primary care, specialist care and coordination of care. DESIGN: Cross-sectional study. SETTING: Self-reported questionnaire data from women members of The Norwegian ME Association obtained in 2013. PARTICIPANTS: 431 women with CFS/ME aged 16-73 years. MAIN OUTCOME MEASURE: The participants' assessment of quality in primary care, specialist care and in coordination of care (good/very good or poor/very poor). Main explanatory variables: self-rated health and self-rated degree of CFS/ME. RESULTS: Quality of care was rated poor by 60.6% in primary care, by 47.7% in specialist care, and by 71.2% regarding coordination of care. Poorer self-rated health increased the probability of rating quality in primary care poor, particularly among women 40 years and over (OR 2.38, 95% CI 1.63 to 3.49), women with university education (OR 2.57, CI 1.68 to 3.94), and owing to less frequent general practitioner (GP) visits (OR 2.46, CI 1.60 to 3.78). Poorer self-rated health increased the probability of rating quality poor in specialist care (OR 1.38, CI 1.05 to 1.82), but not in coordination of care. A more severe CFS/ME was associated with a higher probability of rating quality in primary care poor (OR 0.61, CI 0.38 to 0.93). Frequent visitors and those with a long GP relationship were less likely to report primary care quality as poor. CONCLUSIONS: A large proportion of women with CFS/ME rated quality of care poor/very poor in primary care, specialist care and in coordination of care. The dissatisfaction was higher for primary care than for specialist care. Overall, poorer self-rated health and a more severe CFS/ME were associated with lower quality scores in primary and specialist care, but not in coordination of care. Healthcare services, as assessed by women with CFS/ME, do have a large potential for improvement.

Life according to ME: Caught in the ebb-tide.

In this article, we explore the role of 'place' in shaping people's illness experiences through a data-led inductive case-study based on experiential data from people living with myalgic encephalomyelitis (ME) in Norway. Our main aim is to understand how they experience, interpret and attach meaning to various places in which they reside, and how they construct the course of a life influenced by chronic illness. The study is based on stories containing photographs and written texts, received from 10 women and men. In their stories, they describe those places where they experience their illness in the least and most taxing ways. Through a narrative and photographic analysis of their stories, we explore how they perceive the relationship between place and illness as experienced, managed and endured. Our analysis is based on a place-sensitive sociology, in which we approach place both as physicality and a symbolic construction. The participants describe how a wide range of places are intimately linked to their illness experiences, and they interpret these links by referring to both physical and symbolic factors. They describe their lives in terms of a need for equilibrium between activity and rest. Risk is a strong underlying theme: whatever they do, they risk losing something. Most of all, the participants describe how they are looking for places to escape to and from. Places to escape to are those places where privacy and peace can be found, which primarily revolve around being at home. Places to escape from are those places that make their energy 'slowly ebb away'.