Stories of Health and Illness (2011)


Stories of Health and Illness

(A critical humanist /symbolic interactionist approach)

Ken Plummer: Friday 24th June 2011, University of Essex


We tell ourselves stories in order to live             Joan Didion, title of her collected stories.

Stories animate human life: that is their work.          Arthur W.Frank   Letting Stories Breathe

 Narrative makes the earth habitable for human beings” Frank, again: p46

.. There is no best way to tell a story about society. Many genres, many methods, many formats – they can all do the trick. Instead of ideal ways to do it, the world gives us possibilities among which we choose. Every way of telling the story of a society does some of the job superbly but other parts not so well…… Howard S Becker      Telling About Society  2007 : 285

 Illness is the night side of life, a more onerous citzenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place          Susan Sontag  lllness as Metaphor (p1)

 I would advise every sick person to evolve a style or develop a voice for his or her illness. In my own case I make fun of my illness. I disparage it….adopting a style for your illness is another way of meeting it on your own grounds, of making it a mere character in your narrative.   Anatole Broyard Intoxicated by my illness ( p61)

Course overview

Telling stories about our illnesses has become a widespread and common feature of the modern world.  We find these sickness stories on blogs and web sites. We tell them in support or therapy groups. They are to be found in best selling books and films. Newspapers and television provide photo-essays, videos and documentaries around the sicknesses of our lives. Every illness from Alzheimer’s and Depression to Cancer and HIV/AIDS has developed its own stories.

This course will critically examine some of these recent trends and the development of what has been called ‘illness narratives’ or narrative medicine. A one-day course can only be exploratory and maybe set agendas: it will aim to introduce some of the key ideas of such research, create a space for discussion of a wider array of such experiences including those of the participants, and develop a series of specific critical debates around the content, purpose and analysis of such analysis.

 Course Programme

The proposed outline content of the course is:

10.00. Introductions

10.15. An Introduction to Illness Stories – Varieties, Histories, Meanings. This opening session will introduce the development of the new social science discipline of narrative medicine and overview the Critical Humanist approach to narratives and stories. It will also provide participants with a chance to talk a little of the their own interests in this area.

11.15 Coffee

11.30. Auto/ethnography of an Illness : In this session, Ken will introduce his own work on illness drawing upon his own illness.

12.45 Lunch break  (lunch is not provided).

1.45. Workshop on Sickness Stories.
Ken will present a simple model of story/narrative analysis which analyses the creation, appreciation and living of stories.  He will the selectively focus on a range of examples of sickness stories, consider how they are best appreciated , suggesting some of the core generic themes that can be seen to arise from them. We will end by  asking about the significance of sickness stories in contemporary society and health care. Ken will ask why such ‘sickness stories’ matter –ethically, politically, therapeutically and personally- and critically discuss their role in the twenty first century.

4.00-4.15 Conclusions and Ways Ahead ( If you want to establish an e mail connection for the group, someone will need to volunteer to do it). .



The course will be most useful for practitioners in health work, but this is truly a wide range of people.  Some educational background in sociology and narrative would be an advantage.

A Note on Narratives and Critical Humanism

The background to this course is my 2 day course on Documents and Narratives, which ran earlier in the year, but I think it can be followed without it. So you knowm my view of social research is that it not something that can be conducted outside of social life. I am not happy with social research (or theory for that matter) that runs itself away from the people, that does not get close to them, that does not sense the complexities, contingencies, creativities, choices, ambiguities, fragilities and multiplicities of social life. I do not think all of social life can or should be measured or reduced to a statistic, a table, a logarithm, or a ‘methodology’ (though, of course, some can- but we often overuse it). Research needs always to bridge into theory and always to be dialogic, reflexive, ethically-sensitive, empathetic and politically connected. My version of research says: put people first in a globally aware universe and search for a better for world for all. Avoid grand theory and grand method. At the heart of human research is the story and the narrative.

 Story tellings, and the narratives that accompany them, are basic human social processes. We are the story-narrating animal; human societies are always story-narrative societies. Health and illness stories are major examples of this. Although such story tellings are often neglected in the orthodoxies of social research, they are usually critical to every stage of the human social research process. In the broadest terms we study the stories that people tell of their lives; we connect these stories to the stories of our lives; and we ultimately represent them as our ‘social science stories’ – in essays, theses, books, films, photos, media, conferences, exhibitions. Story telling also places a critical role in shaping political debate and in ethical choices.  In short, we create, appreciate and live narratives and stories enable us to live our lives. Critical Humanistic research places the human story at the research centre and adopts humanistic values in such research. It is interested in a wide array of tools for telling these stories – including photos, self analysis, artefacts, documentaries.

Very Select Bibilography

(see the more extensive bibliography that accompanies the course)

Arthur Frank                           The Wounded Storyteller: Body Illness and Ethics, 1997 Chicago

Arthur Frank                           Letting Stories Breathe (2010) Chicago

Arthur W.Frank                      At the will of the body: Reflections on illness Houghton Mifflin 2002

Carolyn Ellis                           Final Negotations: A story of love, loss and chronic illness  Philadelphia: Temple University Press (1995)

Ann Oakley                            Fracture: Adventures of a Broken Body  Polity (2007)

Anatole Broyard                     Intoxicated by my illness (1992). New York: Clarkson Potter

Audre Lorde                            The Cancer Journals (1980) San Francisco: Aunt Lute Books

Paul Monette                          Borrowed Times: An AIDS memoir  (1988) NY: Harcourt

Jean-Dominique Bauby          The Diving-Bell and the Butterfly. (2002/2008) London: Harper



1. An Introduction to Illness Stories – Varieties, Histories, Meanings.
This opening session will introduce the development of the new social science/health studies discipline of narrative medicine and overview the Critical Humanist approach to it.  It will also provide participants with a chance to talk a little of the their own interests in this area.

Ken will introduce the idea of narrative medicine in a narrative society & discuss briefly the nature of a critical humanist approavch to illness and narrative

What is a narrative and what is a narrative society?

Narratives and stories are among the most powerful instruments for
ordering human experience. Narrative can be expressed in oral or
written language, still or moving pictures, or a mixture of these media.
It is present in myths, legends, fables, tales, short stories, epics,
history, tragedy, drama, comedy, pantomime, paintings, stained glass
windows, movies, local news, and conversation. In its almost infinite
variety of forms, it is present at all times, in all places, and in all
societies. Indeed, narrative starts with the very history of mankind….”
(Barthes, 1975).


We have each of us, a life story, an inner narrative – whose continuity, whose sense is our lives…. A man needs such a narrative, a continuous inner narrative to maintain his identity…

Oliver Sachs  opening to The man who mistook his wife for a hat


Background Position: A Critical Humanist-Interactionist Approach

There are nine major themes:

  1. 1.     Narrative Meanings: the search for illness meaning in a material world
  2. 2.     Narrative Process: illness as change, emergence, contingencies
  3. 3.     Narrative Others and interaction: illness & empathy, sympathy & dialogue
  4. 4.     Narrative Differences and multiplicities: illness as multiple
  5. 5.     Narrative Embodiment and Emotion: the sensualities of Illness
  6. 6.     Narrative Resources: The power of stories and their tellings
  7. 7.     Narrative Understanding: science, aesthetics, empathy, pragmatics. spiritual.
  8. 8.     Narrative Empirical groundedness/ intimate familiarity (and reflexivity): listen to the stories people tell in life
  9. 9.     Narrative ethics and politics: illness as ethical and political


My own position is that of a 21st century symbolic interactionist –  one who came to it because of its critical stance to most sociology and its sense of humanism. Not all would agree.  In an early statement I said:


“a critical humanism has at least five central criteria. First, it must pay tribute to human subjectivity and creativity – showing how individuals respond to social con­straints and actively assemble social worlds. It must deal with concrete human experiences ‑ talk, feelings, actions ‑ through their social & economic, organization (and not just their inner, psychic or biological structuring). It must show a naturalistic ‘intimate familiarity’ with such experiences ‑ abstractions untempered by close involvement are ruled out. There must be a self‑awareness by the sociologist of their ultimate moral and political role in moving towards a social structure in which there is less exploitation, oppression and injustice and more creativity, diversity and equality…..And finally,  in all of this it espouses an epistemology of radical, pragmatic empiricism which takes seriously the idea that knowing – always limited and partial- should be grounded in experience.  See Ken Plummer, Documents of Life, Ch 12.

On the multiplicities of narratives : a narrative glossary

Narrative Meaning  – which may lead to:

Narrative story, Narrative Plot, Narrative Character, Narrative Archetypes, Narrative Themes, Narrative Stages, Narrative Epiphanies & Turning Points, Narrative Memory, Narrative Hermeneutics

Narrative Others – which may lead to:

Narrative Monologue and Dialogue, Narrative Recognition, Narrative Reflexivity, Narrative Role Taking, Narrative Empathy, Narrative Sympathy, Narrative Self & Narrative Identity, Narrative Generosity

Narrative Process – which may lead to:

Narrative Time, Narrative Flow, Narrative Emergence and Narrative Entropy, Narrative Moments, Narrative Contingency

Narrative Multiplicity (or Narrative Pluralism)

Narrative Embodiment – which may lead to

Narrative Performance, Narrative Emotions, Narrative Mood

Narrative Agency – which may lead to:

Narrative Creativity, Narrative Habits, Narrative Subjectvity, Narrative Positionality. Narrative Habitus

Narrative Power – which may lead to:

Narrative Inequality, Narrative Voice, Narrative Resources

Narrative Values-which leads to:

Narrative Ethics, Grounded Moralities, Narrative Politics

And when put into a wider social contests , we soon find:

Mediated Narratives

Global Narratives


Samples of modes and mediums of stories and narratives

Artistic  Life ‘Documents of Life’ ‘Visuals of Life’ Digital-Cyber life
Literature Autobiography Artefacts Websites
Drama Life stories Art Blogs
Poetics Auto/ethnography Photographs You tubes
The Novel Oral histories Film Social network websites
Music Family histories TV/DVD Second life
Film Self analysis You Tube Twitter
Art Diaries Screen cultures Video-cam
Pottery Letters Dress Etc etc
Architecture Web sites /Blogs Documentary
New journalism


2. Auto/ethnography of an Illness : In this session, Ken will introduce his own work on illness drawing upon his own illness.


A case study: My Multiple Bodies: an auto/ethnography of illness. Ken’s recent research
This will be based on a forthcoming paper: My Multiple Bodies: Symbolic Interactionism, Auto/ethnography and The Sick Body ( to be published in Bryan S. Turner: Handbook of Body and Society ( 2012 forthcoming).

On Auto/ethnography


I suggest that auto-ethnographies usually have some of the following characteristics – and each brings its own problems. Auto/ethnographies:

1.write in the first person. In most social science, this breaks all rules of distanced objective science writing.

2. place the social scientist’s own self on the line: his or her voice has to come out, be discussed and situated at the forefront of the analysis. Often this is claimed to be self indulgent and can lead to awkwardness and embarrassment. Even shame.

3. explicitly connect to wider aspects of studying the culture of which they are a part. They draw from the academic traditions of cultural theory, cultural anthropology, cultural sociology, etc. They take an interest in thick – as opposed to thin- description and try to enter the culture. Often though such methods are seen as bringing their discipline into ill repute.

4. connect to matters of autobiography and documentary. They raise all kinds of methodological questions linked to the truth of the story and the life that tells it.

5. and are conducted in the very context which produces them. This context shapes their understanding, language, practices. The story is bound up with its habitus, and is part of a tradition known more widely as self reflexive sociology.

Auto-ethnographies often take on a strong political and critical stance – they provide a resistance to dominant cultures and dominant voices and narratives. Some go further and take on a performative stance – making the story telling part of the performance and drama of culture. And with the established new technologies, they now come in many shapes, sizes and forms from  the blog to the face book. At their best, they will  be dialogic, never monologic – establishing a discussion rather than a neat and uniform  text.

The Multiple Meanings of Illness:






 On Embodiment and Symbolic Interactionism: Some puzzles


1. Meaning and materialism Mind/Body Embodiment
Material bodies & Interpretive bodies

The Narrating Body2. ProcessPermanence and change; essence and ephemera; continuity and contingencyThe Habitual Body3. Interaction/othersAtomism/Holism; Action/Structure; Individual/SocietyThe Relational Body4. Pragmatic ethics and politicsAbstracted principles/grounded moralities and politicsThe Flourishing/Just Body5. Intimate FamiliarityScientific distance/ human engagement The Grounded Body



3  A TEXT: A fragment of my own story:  my multiple transforming  bodies


Being ill brings multiple bodies. At various time I had an obese body, a ghostly body, a cyborg body, a wounded body, a born again body, an absent body, an encephalopathic body, an exhausted body, a hallucinating body, an itchy body, a hospital body, a sick body, a toilet body, a learning-to-walk body. Illness shapes the body in different ways and at different stages, and each time the body has the project of re-assembling itself. You – the sick person – are the orchestrator of its new forms and its new ways of being. You are in charge of the body as it shapes and refashions itself under siege.


My first new body started to appear in 2004. A beer gut had accompanied me for much of my adult life, but just recently I noticed that things were getting a little out of hand. Not only was my stomach becoming hugely unsightly – though people were kind, they never commented, except for saying I was cuddly!- it was bringing problems: breathing was becoming noticeably more difficult, moving around was harder and more exhausting, energy was fast drained. But more serious were new signs that accompanied my old fatness: the feet were swelling, toes looked as is if they were going black, bending over to pull on my socks became an issue each morning. And slowly this got worse and worse. Going to bed meant finding the right angle to lie; washing and dressing started to take much longer to do; long walks had to be dropped from my repertoire of activities; shirts had to become floppy and baggy – XXL became my size; I looked out for trousers with elastic waists. Oddly, my face became more emaciated. I became less focused on things. I could not sit down comfortably for any period of time. It was when my enlarging ankles and now legs started to look blacker and blacker that I decided a doctor should be seen. Fat and obsese body. Bruised and blackened body.


The hospital in Santa Barbara handled this superbly and quickly. My ascites – as it was identified to be- meant a long but effective fluid draining (paracentis). A pipe is inserted in my abdomen and then litres of fluids were drained from me within a few hours of arrival. I entered with a heavy body way out of control, and left 24 hours later as a very thin person instructed to stop drinking, cut out salt, take some pills, rest for a few weeks  and move very carefully. Indeed a life warning had been placed on me. Drained, threatened, sick body.


My fat body had become my thin body. I stopped drinking. I lost my appetite (and avoiding salt meant cutting many kinds of foods from my diet). My face looked drained and older, much older. I weighed myself everyday and kept notes on keeping thin. A little acites returned though I never again needed to be drained. Still, I did look a very different person. When I got back to the UK, some people did not even recognise me. Others said later that I scared them: I looked so different, so thin, so very ill. Some people, I know, avoided me and I did not make it easy for them as I tried to carry on – with lectures and classes- as normal. However ill I was, and whatever I was, I was most certainly not the old Ken. Thin, aged, scary, on death’s door body.


My body at home became manifestly exhausted and tired. I had to learn that using my energy had to be a careful choice. My old body had a lot of energy and I could do a lot; I soon realised my body would warn me within an hour or so if I tried to do much. This was a very different body I was living with. It kept telling me, sit down, rest, relax and sleep. This tired body needed its chair, its afternoon rest (which moved from being one hour to taking up many hours most days). Doing things became harder and harder, I could do less and less. Was I being lazy? I could soon answer this: if I tried doing a lot (and this even included mental energy) I would soon reach a point where I just had to stop. This was my base line body for two years and it was a very different body to the one I had known all my life. Low energy, lazy, tired, sick body.


This tired body could wander off into a world of its own. It was not just that I would spend long hour’s day dreaming (usually to the accompaniment of romantic music – new age, musicals, cabaret singers), I would sometimes be on the edge of my encephalopathic body. This body gave radically different meanings to the world around me. I could not quite see the furnishings in the same way; the house became a bit of a maze, an obstacle course; I no longer quite knew where anything was, or indeed how any gadget – a kettle, a bath shower, a toothbrush, a TV control – actually worked. Indeed, to my intense irritation, I recall that often nothing worked. Or my body could not work them. My body often drifted into a world of unfathomably complicated things. And it moved around very slowly – dreamlike- trying and failing to deal with them. Of course, I realised afterwards that I may well have been having one of ‘my turns’. At the time, my body encephalopathic body was a slow-moving, memory-less and utterly estranged sick body. 


My hospital body was something else. Here I literally place my body under the care and control of others. This is true in a very obvious sense: doctors, nurses and carers prod my body, prick my body, connect it up to a stream of machines, draw blood, empty my plumbing and drains. There is a strict regimen of medication punctuating the day: my lactulose, spiro, tacrolimus, thiamine, insulin, prednisiolone, fluconazole, and mycophenolate to take. They look in my eyes, hold my pulse, prick my fingers, take sugar levels, pump up my blood pressure, measure my temperature. My body is under constant surveillance. There are also dramatic moments: the surgery itself for example; and an armoury of medical testings which surround the everyday. Placed into the wheel chair or back on to the trolley and off you go: for an endoscopy, a colangiogram, an ultra sound, a simple X ray, or a MIR or CAT scan, a cardiogram, a chest test. For your time in the hospital, and kind as everyone usually is, your body is no longer yours. It is now a hospital body, under the control of the hospital- on loan to them for a while as you try to get better! Medicated,  monitored hospital body.


But there are more extreme versions of this. In the intensive care unit my body took on two distinct new forms: the cyborg body and the hallucinating body. It is almost an embodied moment of the mind/ body split. My body is now that of a cyborg: it is wired up and linked to so much technology, that it seems to be a machine. It is not really open to my own mind moving it or owning it; I have to lie there on my back, there is nothing I can really do. Am I real or am I a machine? Cyborg, machine body.


And all around me, my mind sees the craziest things. Yes, I am at some moments all wired up with nowhere to go. But at others I am well and truly rolling around the world in my mobile bed: escaping the bombed hospital, rolling down Christmassy country lanes in Essex, flying into shopping malls at Turnpike Lane, living on sea cliff hotels in small villages on the Cornish coast. This is a body that seems almost to be a non body flying around the country in its own ward like vehicle. An out of mind, hallucinating, flying body.


Then there is my body in recovery. Immediately after the intensive care experience, I became aware of my transformed body and had to spend some time coming to terms with it. In many ways, I saw this as a re-birthing of me. I have almost been killed off – my old body (certainly my old liver)  had gone in the surgery. Now, attached to machines and surveyed all the time by nurses and doctors, the challenge was to reclaim my body back to myself.


It seemed like a long process – in fact it took no longer than two weeks. But bit by bit, each party of your body has to be got back under control again (re-assembling Ken). It starts with re-learning how to breathe as tubes down your throat are removed (breathing Ken), and moves on to physically becoming aware again of senses, fingers and hand – pain control requires that you lightly touch a small button placed by your fingers (fingered Ken). Lying on your back, it is almost impossible to move for a few days but little movements are seen as great glories (fixed and fidgety Ken). All your orifices have been blocked or tubed up, and initially there is no control over any body functions (blocked up Ken). I thought of my Freud: and watched anew the oral, anal and genital functions start to become slowly (very slowly) back under my control (oral Ken; anal Ken; genital Ken). Odd foods were placed in my mouth- no grand eating yet. I watched the urine and the bile pour down tubes near my body (tubed Ken). My bowels needed bed pans (eating Ken). Bit by bit, I participate in the re-assembling of my body. Struggling with clothes (dressed Ken), it took hours and hours to wash. Half an hour for teeth cleaning. A whole morning for a shower – or so it seemed (clean, washed and showered Ken). I pondered how speedily is the daily care of the body in the outside world: in hospital it is a long and central process. There is in truth little else to do but worry about the body. And then there is getting out of bed: slowly, I have to learn to walk again. This very simple child like act takes about a week: getting out of bed and just standing, with all the fraility and fragility that this brings – will I fall? Making a first step. Going to the bathroom. How to hold bags and move around. Moving from the bed to a chair. Going out of the room.  A few steps down the corridor. At the end of the corridor. Hallelujah! Down a flight of stairs (Walking Ken). Exhausted Body.


Finally, and most significantly, there is the realisation that I have a new body – a transplanted body with a new life. One body has ended and their dead body parts have brought another imminently dead back to a new life. An old body lives on in a new body. And what kind of body is that?  A transplanted body.
( Extracted from a much longer illness memoir and used for an article in Turner: The Handbook of the Body, forthcoming







Feet gone black,

Cramp attack,
Bloated gut.
Bowels shut.
Eyes sunk deep
Jaundice weep,
Liver rotting.
Blood clotting.
Red blood spewing.
Stinky pooing.
Nauseous pain.
Toxined brain.
Red vein spiders,
Shivering  sliders
Body thinning.
Itchy skinning.
Dark stain pissing.
Brain gone missing.
Mouth all drying.
Am I dying ?

And these are a few of my favourite things.

The popping of pills
The clearing of spills
The draining of bile
The syringing of blood
The measuring of sugar
The pumping of arms
The tubing of noses
The bottling of piss
The panning of shit
The nagging of anaesthetised nerves
The jellying of ultrasound sliders
The gagging of endoscopic tubing.
The loneliness of the big scanner.
Ah yes, I remember it well





1.45. Workshop on Sickness Stories.

We will look at a number of examples of sickness stories, consider how they are best analysed, and suggest some of the core generic themes that arise from them. We will also ask about the significance of sickness stories in contemporary society and health care. It will ask why such ‘sickness stories’ matter –ethically, politically, therapeutically and personally- and critically discuss their role in the twenty first century.


Diagram: The Everyday Flow of Narratives and Stories

            (a) Creating Narratives:  examining ways stories are told

                 (b) Appreciating narratives: strategies for analysing stories

                    (c)Living stories: ethics & politics of stories


Below I provide a synoptic view of some tools for thinking about the stories we tell.  In the session, I will be using examples from ‘health * illness narratives’ to make sense of it all.





1. How do sickness stories come into being?  Why some stories rather than others?  What are the contingencies which shape story telling? How do we present our stories?


Four levels of answer-

  1. Socio-historical: structures, history, technologies & mechanics
  1. Cultural: cultural frames and ‘domain assumptions’ (Gouldner); artefacts and props; habitus; memories; inter-textualities and ‘borrowings’
  1. Contextual: audiences; situations & encounters; dialogic others, significant others & generalized (imagined) communities; performance; organizational features
  1. Personal: reflexivities, creativities, habits, embodiments, psychic, motivations and intent.

2. How do we make sense of sickness stories?

Often called the Analysis of Stories. ( I prefer the term the Appreciation of Stories). We could use images of archaeology (layers of depth) or theatre (drawing back curtains) or dress(unveiling). The move is from simple, surface or common-sense to complex, deeper, wider analysis.

I think it is helpful to distinguish: narrative stories and their analysis (which is usually focused on texts, forms and literary analysis) and narrative realities which links the story to a much wider social functioning (and hence more sociological and historical). It is also useful to be clear about the differences between narrative form and narrative content (often story).

The tasks and challenges:


1      Narrative description of content: what is this all about? Opening with ‘Common sense descriptions’ to get the analysis going.

2      Narrative analysis:  how to analyse the narrative in itself?  e.g semiotics, structures and morphology, metaphors and tropes, deconstruction. Some familiarity with so called literary theory is needed here as it has much to say on the formal analysis of texts. VIZ:
Formal Content: locate the substance and characteristics of the narrative told?
Thematic analysis: what are key story lines, plots and characters. Who what where when why?
Form: locate the story as a kind of genre – comedy,tragedy, romance?- a type?
Structure: locate the story through its morphology – a pattern of story;
and its formal linguistic properties – a structured discourse?
Means: through what kind of medium is the story told? What is distinctive about each  tool for story telling – there are different issues for each (cf  2 above)

3      Sociological analysis of narratives realities and their stories :  What is the social reality of  the narrative and how does it work?  What are the social conditions and processes which organize such narrative work? How can we appraise their truths? e.g. sociology of knowledge;  social worlds analysis; pragmatic analysis ; hermeneutic and dialogic analysis; political & moral issues;  logics of theory generation and falsification. Familiarity with sociological theory needed.

4      Deep, rich, think analysis: which incorporates discussion of the three earlier stages in order to provide a thick, dense account of social life

All this needs theorizing and locating in a cycle of telling and linking to an epistemological connection to ‘the truth’.

            NARRATIVE TEXTS                                NARRATIVE REALITIES




CONTENT 1 Describing it 4 rich account
FORM 2 Literary analysis 3 Sociological analysis




3. What is the purpose of  telling sickness stories ?
My own work has mainly been concerned with the ways in which stories are produced and presented and how often they change the communities we live in. Stories and their communities matter. There has been an enormous growth of interest in the process of narrating illness in the past few years along with their links to therapy, social movements and even human rights. In this concluding session we will look at the personal, political and moral workings of sickness stories.

One aim of all narrative research is to be concerned with the bettering of social worlds and with facilitating flourishing lives for all (to use my two favourite clichés!).


How do we live our lives through sickness stories? Linking stories to the personal, ethical/moral and political life.

  1. Personal: recovery, chaos and quest stories: How we become ‘narrative wrecks’ and seek repair:  unifying & connecting; identity shaping; trauma and repair; prophetic roles. Negative and positive tales. The role of the ‘hero’ – and the tragedy and the comic.
  1. Political: every illness can also being a political narrative: what is to be done? stories of difference and other voices (empathy and dialogue); stories of flourishing (and not) (wasted lives, good enough lives, flourishing lives etc)
  1. Moral: confronting stories of life , death and illness: grounded moral tales and narrative ethics.

What are our visions of a better world? Linking stories to our research and politics.

The value base I work from highlights:

1. Dialogic, communicative, cosmopolitan : enhancing mutual understanding through our stories  – enhancing medical communication

Common Grounds?

2. Social Justice & Human Rights – advancing social movements for change and better health

3. Good Lives and Human Flourishing for all – promoting well being across the life cycle with good stories




Diagram 1: The continuous flow of transplant illness

  1. denial, normal life, ignoring signs
  2. trouble: more and more ‘bad signs’
  3. crisis and early diagnosis
  4. early days of serious illness
  5. getting on ‘The List’
  6. waiting and illness
  7. the call and the surgery
  8. icu and hallucinations
  9. recovery
  10. a normal life: back to the world











Auto/ethnography of Being Seriously Ill -The Everyday Body of Illness

Some physical symptoms of my illness: end stage alcohol linked liver disease. I had them all at various times and to varying degrees. This excludes psychological and social issues and all the transplant and post transplant issues (which would be another equally long list I describe in the story!).

1 Lethargy Sleeping and dozing all the time  – can’t do much or focus; slowness of movement and mind.  DROWSY, TIRED KEN
2 Jaundice Yellow look in skin and eyes JAUNDICED, YELLOW KEN
3 Ascites Huge abdomen; needs draining FAT, GROTESQUE, CUDDLY KEN
4 Nausea and vomiting VOMITING KEN Sick feelings, violent and long, noisy sick attacks
5 Dehyrdration Need tablets and water DRY, THIRSTY, WATER KEN
6 Constipation Creates a problem with its opposite- and getting a balance. Too much of this and serious problems await as toxins get into brain…. TOILET KEN
7 Internal bleeding ( GI bleed) Identified especially when vomiting blood VOMITING KEN
8 Encephalopathy ‘losing your mind’ – from poor memory and general drowsiness through full scale confusion and hallucination to  borderline coma. My major serious symptom with growing frequency and seriousness, finally lasting three days. VERY SCARED AND VERY SCARY KEN
9 Portal Hypertension Did not identify this myself – but had it
10 Blood coagulation – Clotting problems: for example- trips to dentist could lead to heavy bleeding etc
11 Temperature control Feeling cold all the time: fires on in the summer! Doubly wrapped.   FREEZING KEN
12 Muscle Loss Thin arms and legs: ugh! SKINNY SICK KEN
13 Sleep reversal Very poor sleeping and poor sense of day and night INSOMINAC KEN
14 Oesophageal varices Links to bleeding BLOTCHY KEN
15 ‘Spidery blemishes’ Nasty little red spots all over the body BLOTCHY KEN
16 Loss of appetite And very odd eating habits start to develop- salt intake becomes a worry which disrupts most standard eating patterns anyway. Give up drink. FOOD FUSSY KEN
17 Itching Never scratch them! IRRITATED KEN
18 Cramps Often all night long at some periods – very painful AGONY, SCREAMING  KEN
19 Dark urine Always  TOILET KEN
21 Dark stool (indicates blood) This is the one symptom that I do not recall having- although I certainly had the fear of this and looked regularly
22 Diahorrea The balancing act with constipation! TOILET KEN
23 Pruritus Feet swelling (and looking very black!) BAD BODY KEN
24 Perionitis Pains and vomiting
25 Infection Increased vulnerability to infections
AND: Cyborg Ken, Hallucinatory Ken, Hospital Body, Walking Body,  Medicated Body, ‘Bagged up ‘Body, Ghostly body……………….





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