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Making
Sense of My Illness Journey from Thyrotoxicosis to Health: an Autoethnography
SAGE Publications, Inc.200610.1191/0967550706ab040oa
ElizabethEttorre
University of Plymouth, UK, eettorre@plymouth.ac.uk
Address
for correspondence: Elizabeth Ettorre, Faculty of Social Science and Business,
School of Sociology, Politics and Law, University of Plymouth, Drake Circus,
Plymouth PL4 8AA, UK; Email: eettorre@plymouth.ac.uk
In this paper, I focus on
my experience of hyperthyroidism and contend that that being reflexive about
one's illnesses can be a valuable healing tool for patients and medical professionals
alike. Looking at the tradition of ruminating on one's illness in medical
sociology, I characterize two genres, `modernist observers' and `postmodernist
witnesses'. I introduce autoethnography as one methodological way of being
reflexive. The resultant work is evaluated through two lenses: science and
art. In health and illness contexts, autoethnography presents particular
embodied events with people in time, their social shaping and how these can
be seen as emblematic of wider cultural meanings and social trends. After
sharing my story, I demonstrate how my experiences can be understood by exploring
the notion, sentimental work. While I try to be generous to the reader, I
sense that I give voice to my body, connect to others and bear witness to
how my embodied identification with others induces dialogical exchanges.
My particular experience is revisioned from a feminist perspective, challenging
current biomedical ideas about the negative workings of women's immunological
system and indispensability of allopathic medicine. I contend that we should
contest outdated medical practices, based on gendered stereotypes of ageing,
sick bodies.
The
professional eye saw in me only a mass of humour, a sorry mixture of blood
and lymph. . . . It occurred to me for the first time that my body, my faithful
companion and friend, truer and better known to me than my own soul, may be
after all only a sly beast who will end by devouring his master (sic.). But
enough, I like my body; it has served me well and in every way and I do not
begrudge it the cares it now needs . . . (Yourcenar, 1951: 3)
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INTRODUCTION:
BEGINNING WITH THE PERSONAL I begin with expectation mixed with fear. It has
been some time since I wrote an academic paper. I have just suffered for two
years from thyro- toxicosis.1 This troublesome disease entity attacked my
body and robbed me of a vibrant, incisive, sociological, feminist voice. At
a deep level, this voice I so love eluded me. My voice has given me hope and
emotional sustenance for over thirty years – now this sense of losing
it. When this acute thyroid problem hit my body, I was in a whirlwind of academic
activity, editing a book and writing another. I was on sabbatical leave – taking work trips to Finland, Italy and Belgium. On a personal level, my partner
and I were grieving – recovering from the deaths of her father and
sister, both of which occurred within a week of each other. My partner experienced
a health crisis which at first we thought was life- threatening. It was one
of the most difficult times of my life. Illness and death were all around.
Feeling that I had no space in this turbulent time, I was afraid of living.
The emotional pain was almost unbearable. I put on a good face and coped,
not noticing subtle bodily changes.2 When I did begin to notice, I thought
`menopause', reflecting how medical interpreta- tions often percolate into
lay ones. I start with how sociologists think and write about their own illness
experiences and the different genres which have a major role to play in a
person's quest for authenticity, while experiencing `a loss of self' (Charmaz,
1983). Next, I introduce autoethnography as a methodological tool for thinking,
speaking and writing reflexively about my own illness experiences. While reflexivity
is `not an epistemological, moral or politi- cal virtue' (Lynch, 2000), it
is about existential, embodied identifications with others based on dialogical
exchanges. While `thinking is like breath- ing' and I do it unreflexively,
I can think reflexively `with full awareness' by making my thinking a `full
project on its own' (Braidotti, 2002: 93): I can become a communicative body
(Frank, 1995), joining with other ill bodies in a salutation of generosity
(Frank, 2004). While my autoethnography is embedded in contemporary work which
makes connections between bodies, gender, illness, health and healing (Clarke
and Olesen, 1999; Sparkes, 2003a; 2003b; Sparkes and Smith, 2002; Smith and
Sparkes, 2004), it contributes to academic debates which call for more innovative
methods within medical sociology (Lawton, 2003) and shows that while chronic
illness has a major impact on identity (Charmaz, 1983; 1990; 1991; 1999) and
is a radical intrusion into embod- ied selfhood (Turner, 1992), acute illness
is a neglected area of research. I then share my illness story and demonstrate
how it can be understood by exploring the notion of sentimental work. My assumption
is that being reflexive about one's illnesses can be a valuable healing tool
for patients and medical professionals alike.
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SETTING
THE SCENE: `MODERNIST OBSERVERS' AND `POSTMODERN WITNESSES' In medical sociology
there exists a long-standing body of work in which sociologists ruminate on
their illness experiences (Roth, 1963; Davis and Horobin, 1977; Zola, 1982; Frank, 1991; 1995; Adamson, 1997; Rier, 2000; Sparkes, 1996; 2003a; 2003b).
Within this work, two related but disparate genres appear: `modernist observers'
and `postmodernist witnesses'. Notably, these genres are not a strict binary
and a few `modernist' accounts (see Jobling, 1977; Macintyre and Oldman, 1977)
hint at `postmodern' nar- ratives to come. Modernist observers (Roth, 1963; authors in Davis and Horobin, 1977; Zola, 1982) scrutinize the multiplicity
of processes involved in the sick role. I cannot fault them for lack of detail
or complex sociological analyses. Nevertheless, when observing their health
problems, they treat their illness accounts as alien, revealing an essentialist
frame of mind. Their propensity towards fixity in analysing consultation behaviour
(Jobling, 1977), hospital- ization (Fairhurst, 1977), medical routines (Strong,
1977) and marking time (Roth, 1963) creates the image of omniscient onlooker,
satiated with rational, scientific explanations but somewhat devoid of emotions.
The body is invisible, but has a fleeting appearance when pregnant ones, lying
in examination rooms, are resplendent in clinical functionality (Camaroff,
1977). Additionally, the virile, masculinist voice dominates as privileged
male patients bond with their doctors when `the old school tie is delicately
indicated' (Strong, 1977: 48); an ideal patient adopts `the role of man on
the street' (Atkinson, 1977: 27) and the abstract patient is referred to as
`he' (Mapes, 1977). Taking an autocritical stance to past work in this genre,
Zola (1991: 3), a former modernist observer, contends that, `We were locked
into a view of ourselves as patients in the sick role' ... `Our protest was
... personal not social', and `nobody but us learned anything'. Zola (1991:
7) indicates `the sexist bias' that influenced diagnoses and work in the area.
Most importantly, Zola (1991: 4) contends that `medicine's view' of our (the
patient's) reality was essentially `unchanged and unchallenged'. I agree with
Zola's call for a new paradigm, bringing the body into medical sociology and
for taking up feminism's challenge leading to a new praxis in medical sociology.
Implicitly, Zola's makes a distinction between the illness narrations of modernist
observers and postmodernist witnesses. While both genres link narratives with
the experience of illness, the postmodernists are receptive to the vagaries
of patienthood and labileness in ill bodies. They are more open to a medical
sociology which moves away from universalistic conceptions of doctors, patients
and health and illness experiences towards a `plurality of truths' (Bell,
2000: 132) that embraces
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multiple
embodied forms of health and illness representations, replete with uncertainties.
This postmodern turn or more adequately, twist, goes beyond mono- lithic notions
that a single cultural perspective, revealing an irrefutable set of truths
to be known exists. That any medical sociologist is able to achieve an understanding
of illness experiences outside of specific histor- ical contexts or without
recognition of shifting relations of power and inequalities becomes questionable
(Bell, 2000: 132) for postmodernists, while this can not be said of modernists.
Postmodern witnesses (Rier, 2000; Adamson, 1997; Sparkes, 1996; 2003a; 2003b; Frank, 1991; 1995) to name a few, bring the body, emo- tions, participation
and existential uncertainty into medical sociology. They do this in such a
powerful way that our understanding of the many layered texture of illnesses
is shaped by actively engaging with anxiety, despair, disgust and agony as
well as triumph, hope, joy and pleasure. Their narratives generate useful
ways of creating knowledge about suffer- ing and of grappling not only with
the intricate, interior language of wounding, despair and moral pain but also
the victory of living an illness (Bell, 2000: 139). They deploy a type of
`anti-narrative' (Scholes, 1980) which frustrates closure, brings performative
codes to our critical atten- tion and sees these codes as cultural rather
than fixed aspects of human nature. As emotional and vulnerable, they give
voice to the structured silence of embodied illness experiences as well as
sociological shape to the diverse, complementary and conflicting assistance
that the experience of the self and the body bring to health and illness.
What do we learn? Regardless of patients' existential claims-making and physicians'
clini- cal voices, the mutuality of the effects on each other must become
visible, if we are to understand the pervasiveness of `uncertainty' in medical
encounters (Adamson, 1997). Rier's (2000) experience of critical illness in
an Intensive Care Unit acknowledges that the current discourse on patient
participation and negotiation is not relevant to the critically ill. Sparkes
(2003a; 2003b) shows the devastating sense of loss when injury shapes a performing
athletic body into `a failed' disabled one. One of the unsus- pected rewards
of being ill is to tell a story that can transform sheer strug- gle, survival
and revulsion into a significant embodied, social and moral life that is self-authenticating
and productive of desire (Frank, 1995). By giving testimony to what has been
traditionally abject in illness accounts, these `postmoderns' make way for
new and perhaps more reflex- ive, gender sensitive ways of doing patienthood.
A major criticism levelled towards this genre is that physicians are demonized,
while patients emerge as heroes (Atkinson, 1997). Refuting this claim, Bochner
(2001: 148) shows that Atkinson overlooks the power dynamics to which many
illness stories respond and the division of control between those who are
ill and
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those
who represent them in narrative. We tell illness narratives because telling
not only gives us therapeutic benefits of redemptive understanding, but also
the `political consequences of connecting the body to the self' reveal `embodiment
and emotionality as legitimate mediums of lived expe- rience, inscribing bodily
dysfunction with value' (Bochner, 2001: 148). Successful illness narratives
require an active and reflexive reader who wants to enter into dialogue with
the writer and story (Bochner, 2001) and offer the reader multiple places
to stand in the story (Berger, 2001). While autoethnography can be a useful
way of telling health and illness stories, it is more akin to postmodernist
witnesses than modernist observers. AUTOETHNOGRAPHY: THINKING AND FEELING
WITH MY ILLNESS STORY Autoethnography is related to the above tradition, but
has no allegiance to any discipline (Wolcott, 2004). As a term, it has been
in circulation for at least three decades and is defined as `an autobiographical
genre of writing and research that displays multiple layers of consciousness,
connecting the personal to the cultural' (Ellis and Bochner, 2000: 739). Writing
in first-person voice (see Katz Rothman, 2005), autoethnographers look back
and forth `first through an ethnographic wide-angle lens, focusing outward
on social and cultural aspects of their personal experience; then inward,
exposing a vulnerable self that is moved by, through and resists cultural
interpretations' (Ellis and Bochner, 2000: 739). Proponents of autoethnography,
such as Carolyn Ellis (1991; 1995; 1999; 2000), Laurel Richardson (2000a; 2000b; 2000c; 2003) and Arthur Bochner (2000; 2001; 2003), share a consensus
that autoethnography be evaluated through two lenses, science and art. They
bridge the gap between scientific and literary writing and propose new writing
practices (Gray, 2004). Within autoethnography, the intention, shape and rapport
of the artistic piece emulates the emotional and scientific commitment of
a triumvirate: author, story and reader. In `doing' my illness story, I follow
the above insights. However, I am aware that colleagues may use a variety
of crite- ria to judge my work. They may make different interpretations about
the meaning and quality of particular pieces of research (including my own)
but this can be a way of deepening our understanding of research in gen- eral
(Garratt and Hodkinson, 1998: 534). Here, I assume there are many authors,
stories and readers. No orthodox canons or single standards of value determine
how illness stories should be conceived or constructed. As an autoethnographic
author, I want to be thoughtful, reflexive and ethically self-aware in portraying
others I want to evidence emotional reliability – my portrayals depicting
the contours of the patient's sphere and the status of illness and health
within that sphere. I want my autoetho- graphic story to be flexible, believable,
in enough detail to express the
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realities
of everyday life and aesthetically appealing, but I want to explain what is
going on with others, even if their actions and perceptions of events, risk,
infirmity, well-being, and so forth differ dramatically from mine. I would
like my reader to be inspired and stimulated into social action by the depiction
of my life presented. One way of facilitating this sort of connection is to
be clear about the type and scope of influence of the medical authority to
which my illness narrative responds. Authoethnographies augment empathy on
multiple levels including interactions between author and participants as
well as reader and story (see Bochner and Ellis, 2002). In a health and illness
context, they present particular embodied events with people in time and their
social shaping and how these events can be seen as emblematic of wider cultural
mean- ings and social trends. Because of its empathic form, autoethnography
provides a tool to fashion a needed `non-dualistic ontology of the mindful
body in which emotions play a central role in the human experience and cultural
scripts of health, sickness, disability and death' (Williams and Bendelow,
1996: 47). In medical sociology, autoethnographies may allow both reader and
author to enter into various textual strati and phases of illness understandings
concerning what illness is and does to me as well as what making meaning of
it involves. Do I dare feel with my story to contemplate risk, stigma and
suffering alongside control, acceptance and victory? In my own life with sickness,
do I interrogate myself as `witness and doer' (Chawla, 2003)? Do I consider
how the various people I encounter come to treat me in the way they do? What
constrains them? What allows them to feel empowered as patients, physicians,
nurses, friends...? As Berger (2001: 514) suggests, `Am I willing to include
details that might reflect badly on me, that might show me as an intransi-
gent, nasty patient as well as an unattractive or stubborn person?' Similar
to Frank (1995), Ellis's (2000: 273) optimal concern is, `I want to think
and feel with my story'. While thinking and feeling with my illness story
may be a novel challenge, autoethnography can help me to achieve this aim,
as you the reader will hopefully see. METHODS: REFLECTIONS ON MY `HEALTHY',
ONCE `SICK' BODY I draw upon data and analyses from diaries over two years
when I suffered from hyperthyroidism. These include records of key events
with times, places and people as well as feelings, emotions and bodily states
(e.g. pulse rates, blood pressure and weight) and relevant articles, letters
and blood tests. I study my diaries and write down key events in sequential
order. I remember and process them through me as the now `healthy', once `sick'
body. Reading, remembering, writing and processing `data' brings me emo- tional
pain, as I move in and out of sad experiences. I recall exchanges with
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`significant
others'. I am aware that I interpret past events from my current position.
It's impossible to get it entirely right or represent these `significant others'
completely (Pyett, 2003). I recall Ley and Spellman's (1968) classic, demonstrating
that patients' information recall in communications with doc- tors is limited.
I reassure myself, `I won't have perfect recall' and I remem- ber, `Evoke
in your readers a feeling that your experience is described as lifelike, believable
and possible' (Ellis, 1999: 674). My story is about the past, constructed
in the present. I face up to specific biographical events, placing me in shifting
relations of power with myself on the healing trajec- tory and others, providing
different levels of care. I employ the method of autoethnography to make sense
of my illness. I use emotional recall in which I imagine being back in these
experiences emotionally and physically (Ellis, 1999: 675). Emotional recall
is a part of sociological introspection, a process achieved in dialogue with
the self and represented in narratives (Ellis, 1991). It feels healing. Like
Ellis (1991: 32) I study my experiences not `as an internal state but an emotional
process which I recognize internally and construct externally'. This is linked
with my emotions and instinctive reactions to others in specific places and
inter- actions. Emotion work can be a way of reaffirming one's identity and
man- aging the disruption of illness to one's biography (Exley and Letherby,
2001). I construct scenes and dialogue from partial images in my diaries.
I analyse them according to what each story says. I place them in a time line.
I know my story is not totally precise and some events may be out of place.
I am fascinated as to what I will find and how I will feel. I have events
before me as well as situated settings, sites and conversations. I notice
in writing and analysing a sense of triumph prevails; I have survived death.
I beat this pun- ishing illness. I want to explore the multiple subject positions
experienced through my transformed body. Yes, I am healthy now but a different
`healthy Betsy' than before I became ill. The cartography of acute illness
has brought me `health' but via a circuitous route, one that included choices
to take an alternative path, leave my General Practitioner (GP) and from the
viewpoint of biomedicine, put myself at risk of more physical harm or even
death. Perhaps, in focusing on what my story is saying, I misrepresent what
is going on for significant others. I found some of their behaviour difficult.
While my story is no less true than theirs, it is hopefully more intimately
engaged, giving access to unwelcome and painful processes and critical insights
into biomedical conventions. I found comfort from my suffering in a way that
differs from a biomedical way of expressing it (Ahlberg and Gibson, 2003).
I want to be ethically accountable in terms of how I portray others. My data
source is personal diaries. There are no research participants according to
the remit of Research Ethics Committees (Beyleveld et al., 2002) nor anyone
identified as a conventional respondent from whom gaining informed con- sent
is required (Crow et al., 2004). However, I inform all significant others
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with
one exception3 of my account in writing or verbally. I protect their anonymity.
Names of people and places are changed. With three significant others, I discuss
what I do. They give support. One agrees to read the first draft and finds
it `riveting'. Talking to others involved in my story is impor- tant. I gain
self-assurance, while they gain important information and the opportunity
to consider that understanding a middle-aged female patient's experience of
an acute illness may improve their own practice. While I did not seek ethical
approval, some could argue that I should have. This is debatable and there
is no space to discuss ethics in detail here. Briefly, if I see ethical accountability
in terms of personal integrity, this may be problematic, revealing my attempt
to fit into an `empty ethics' model (Corrigan, 2003). From the viewpoint of
non-normalizing ethics based on personal choice rather than social and legal
imperatives (O'Leary, 2002: 7), I am an appropriate ethical authority, granting
permission to write my story because it carries the weight of historical and
moral necessity – I survive to tell it. I am responsible for my own
illness story – no one else. Some signif- icant others in my story
know this and may be troubled. Originally, I did not set out to tell my story.
It is my choice to narrate events and feelings. Frank (1991: 19) suggests
that accountability and ethical `responsibility begin and end' with the narrator,
framed by `an ethics of the body' where observations and witness commence,
sustaining corporeal wholeness. Here, one's posi- tion, in contrast to a code-based
morality reflected in biomedicine, begins from an `aesthetics of existence',
the heart and indeed art of ethics (Foucault, 1984). MY ILLNESS STORY4 (mid
February 2001) `Why am I falling on the stairs? I have terrible diarrhoea
... Maybe I am menopausal. I get palpitations ...' I am scared. I am becoming
unwell. Two weeks later I visit Dr Walsh, my NHS5 GP. `Dr Walsh, I have been
having bad diarrhoea for the past two weeks', I say softly. `Could it have
been something you ate?' she asks ... `Well, perhaps', I say. `Sometimes,
food poisoning takes a while to get over. It's probably that', she says. Worried,
I add, `I get horrible hot flashes and palpitations too.' My right hand shakes
violently. I sit on it hoping that Dr Walsh does- n't see. `Well, that could
be menopause. Would you like something for it?', she asks. `No, thank you',
I reply. For the next three weeks I am in Helsinki. My diarrhoea subsides
for the first few days and comes back. I walk after presenting a university
seminar. I think, `I am so breathless all the time. I didn't feel nervous
when I gave my paper, but my hands shook. Strange ... I wish this diar- rhoea
hadn't come back. The hot flashes and palpitations are awful. I hate this
menopause feeling.'
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Three
weeks later, I sit with Dr Walsh, `I was away since I saw you. Most of that
time, I had diarrhoea, but not for the past two days.' `Have you been stressed?',
she asks. `Not particularly.' I pause. `Yes, I am writ- ing two books', I
say. `It could be psychosomatic – you could have the beginnings of
irritable bowel syndrome', she says. `Oh, I know that. My mother suffered
from it for years', I say. `Ah here it is', she says as she hands me a small
cylindrical container. `I want to take a stool sample to be sure you don't
have an infection. Bring this back tomorrow. We'll get it analysed. Ring up
for the results. If it continues, we'll get a blood test for you. Then make
an appointment with the nurse.' `Thanks, doctor', I say. Four days later I
ring the surgery. `Your stools are all clear', the recep- tionist responds
... `Thank you', I say ... I think to myself, `What a relief!' Two weeks pass
... `Dr Walsh said to get a blood test if my diarrhoea continues. It has,
but this week it's not bad', I say, closing the door to the nurse's room.
A short, young woman in a blue uniform says, `Well, you don't need a blood
test.' `I'm not sure. This has been going on for some time', I say, surprised
at her abruptness. `Let me speak to the doctor.' I wait feeling nervous. She
returns. `Dr Walsh says that you don't need the blood test.' `OK', I say in
a resigned voice. Over the next six weeks, I lose weight and eat a lot. I
should be relaxed because my projects are finished but I'm nervous all the
time. My partner begins to notice. `It feels like a river is running through
my body', I tell her. I go for a blood test. There is something wrong. `I
have come for a blood test. My diarrhoea has not stopped', I say to the nurse
the next day. `For how long has this been going on?' she asks. `A few months
... I came five weeks ago. Dr Walsh said I didn't need a blood test. Don't
you remember?', I ask feeling frustrated. `OK I'll get the syringe', she says.
The next day I receive a phone call from the receptionist telling me to see
Dr Walsh. I sit in front of Dr Walsh who seems rather upbeat when she fetches
me from the waiting room. I say, `You wanted to see me about'. Before I finish
my sentence, she says, `Yes, your thyroid has packed in.' `What does that
mean?' I say feeling confused. She continues in a reassur- ing voice, `Your
thyroid is overactive. Your antibodies are destroying it. You are the second
person today that has this diagnosis. The other is my father-in-law.' Sensing
that she is in her element, I think, `She's being friendly but I don't want
to share my consultation with her father-in-law.' She continues, `There are
three options. We can cut the thyroid out. You can swallow radioactive iodine
which kills it. You can take anti-thyroid tablets. I usually recommend the
latter, carbimazole, which is perfectly harmless. What do you want?' I am
confused; I don't want to become chronically ill. I say, `Well, I don't want
surgery. The radioactive iodine doesn't sound good. My mother has had cancer
and I am afraid if I am
162
susceptible.'
`There is no connection with cancer. Radioactive iodine is perfectly safe',
she retorts. I say, laughing nervously, `I am not sure. I'll take the pills.'
The prescription is handed to me as she moves her chair towards me. `I wonder
when she wrote this', I think. She takes my wrist, `Your pulse is 126, a little
high6 but expected. Take the pills. Come in a month's time for a blood test
and we'll review your dosage.' Thirty minutes later I phone my partner about
my visit with Dr Walsh. I am worried and remember that my mother had the same
condition. I want to phone an alternative physician who my osteopath recommended
once when I had hot flashes. My partner says reassuringly, `That sounds like
a good idea if you are afraid.' And I was. Five minutes later I ring Dr Fish
and say I received a diagnosis of overactive thyroid. I am afraid to take
the pills my GP prescribed. I say that I would like to explore the possibility
of taking alternative medicine with her as soon as possible. Luckily, she
has a time later in the day. Six hours pass ... I am at Dr Fish's private
clinic. A stately woman enters, her right arm extended to take my hand. She
guides me to her office. I feel her warmth immediately. `Nice to meet you
Professor Ettorre. Describe how you are feeling. I am sure we can sort something
out.' `Not well. I feel as if a river is running through my body. I have terrible
palpitations and diarrhoea. I am irritable and can't sleep', I respond. She
turns toward me and says, `Tell me if you have had any poisoning recently.'
`No, I don't think so', I say with interest. In our conversation, she says
that poisoning can cause thyrotoxi- cosis and if a patient's pulse goes too
high, it can be life-threatening, caus- ing cardiac arrest. I shudder with
fear and speak about my diarrhoea, my other symptoms and my visit to my GP.
She takes my pulse which is 120, says it is usual for thyrotoxicosis but a
normal pulse is around 60–70. She speaks about her patient who had
the same condition and got better by taking a herbal remedy. She says that
thyroid sufferers often feel as if they have no space to speak and asks if
I feel that. Immediately I feel a visceral sense of loss. Vulnerable, I start
crying. Tears run down my cheeks. I respond, `Yes, in a way.' I speak about
recent grieving and say, `If a normal pulse is 60–70, I am sure I have
not had one for some time.' She looks qui- etly then says, `I am going to
prescribe you an herbal remedy for thyrotox- icosis. You have to slow down.
Can you do that?' `Yes, I am off on holiday in two days', I say. She asks
to see me in three weeks. I say that is impos- sible because I will be in
the USA to attend some conferences. Looking shocked she says, `Well, that
isn't a rest. You must slow down. I'd like your GP's name. Also, ring me while
you are away to tell me how you are doing. I'll see you soon after you get
back. Find out your blood test results. Your GP will give them to you.' We
agree that I'll ring her from holiday. While away, I take my pulse everyday.
The range is from 81 to 124. I ring Dr Fish three times to say I am resting
and feeling better. In
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Anaheim,
California, I present papers at the Annual Conferences of the Society for
the Study of Social Problems and American Sociological Association and I attend
Sociologists for Women in Society. Besides giving papers, I rest and swim
in the hotel swimming pool to relieve my symptoms. Colleagues walk past and
greet me. I feel ashamed because they may think I am lazy. On my return, I
have a blood test taken by Dr Walsh's nurse. She gives me the results of my
first blood test. I say nothing about Dr Fish who I meet the same day and
gives my blood test results7 which are for `free thyroxine',8 71.2 and `TSH',9
0.01. Dr. Fish says, `Remember herbal med- ication works slowly. If you take
carbimazole, it's like taking a sledge- hammer to your thyroid. Herbal medication
works gradually but you need to slow down. Tell your GP that you taking the
herbal medicine. It is in your best interest to do that because if anything
happens she is legally responsi- ble. It is only fair that she knows.' I am
anxious but say, `OK, I'll do that.' Dr Fish notices my anxiety, `You are
a professor. I am sure you can talk with her'. I don't feel reassured but
say, `Yes, I am sure it will be fine'. We arrange another consultation in
three weeks time. When alone, I think, `I'm an educated competent woman who's
afraid of her GP – a first for me. When I read that extreme nervousness
and jangled emotions trouble 99% of Grave's sufferers (Gomez, 1994: 48), I
begin to understand. A week later, I see Dr Walsh. I am anxious. She doesn't
ask about car- bimozole. I can't tell her about the herbal medication – jangled emotions! I am feeling desperate. Looking at her notes, `We have the
results of your blood test. Your free thyroxine is 55 ... TSH the same. You
don't need to see me any more. Take the medication and go to the nurse for
blood tests and we'll monitor you that way.' I think, `How different her consultations
are from Dr Fish's'. I say, `Thank you doctor.' The next day I meet with my
Dean. I say I am being treated for thyrotoxicosis and need less work. He agrees,
is sympathetic and says his wife had the same condition. I am grate- ful for
his understanding. Five days later, I see Dr Fish and say my blood values
are down. She says this is good news. She says I need to pace myself because
the herbal medica- tion works slowly. She wants to know if I told Dr Walsh.
Reluctantly, I say no because I was too frightened. Dr Fish volunteers to
tell her but I say I'll do it. Because of my jangled emotions, I take carbimazole
for a few days. I don't want to lie. I am sitting uncomfortably with Dr Walsh's
nurse a week later and say, `I've come for my blood test.' She gets the syringe
and takes blood from my arm. As she does, I say bracing myself, `I am improving,
I was taking herbal medication but now I am taking the carbimazole.' She finishes
and looks at me, `Did I hear right? Why do that? Let me hear your heart.'
She puts the stethoscope to my chest. `Your pulse is racing. I need to speak
to Dr Walsh.' She panics, rushing out of the room. I feel a bad patient. Five
minutes later, she stands in front of me, `Dr Walsh is not happy about
164
the
herbal medication.' `But, I have improved, I ... ', I begin. She cuts in with
a scolding voice, `It doesn't matter. You must get an ECT. You have palpita-
tions which need to get seen to. You need beta blockers. You'll get a letter.
Promise you'll go this week.' Feeling demoralized, I say, `Yes, I suppose'
but I think, `Not on your life. I am never stepping foot here again.' In my
parked car, I ring Dr Fish. I ask to come to see her soon because I want her
help to find a sympathetic GP. When we meet in two days' time she tells me
that what is happening is stressful. She wants my pulse down and warns that
I could have major health problems, if it doesn't. I tell her how I took the
car- bimazole temporarily so as not to lie. She reassures me by saying that
of course I can take it, if I choose to and she asks how it feels. I say I
stopped and that for the first few days, it was OK. But soon after I got terrible
headaches, my pulse and my blood pressure shot up and the palpitations were
violent. She suggests that she take my next blood test and she'll sort me
out for a sympathetic GP. She has a book of registered alternative physicians
and gives me a list of names. That same evening I ring the names on the list.
One doctor is unable to help because I am outside of his catchment area, but
he gives me the phone number of Dr Edwards, a trained homeopath as well as
GP in my area. The next day I ring Dr Edwards's surgery, find out the address
and go to register. I make an appointment to see him after he returns from
his holiday. Sometimes, I feel like I want to die. A month passes ... My blood
test from Dr Fish shows my values going down. I see Dr Edwards and tell him
about my overactive thyroid, my herbal medica- tion from Dr Fish and leaving
Dr Walsh. Dr Edwards is a man whose weathered, open face I am immediately
drawn to. Looking at me directly, he says in a soft voice, `To be honest,
carbimazole is not pleasant and can have dangerous side-effects. Unfortunately,
it's the most common drug used for overactive thyroid. If a patient does not
want to take a drug, she shouldn't. It's your body, not mine. You shouldn't
feel forced to take a drug. But, one thing we were told is that homeopathic
medicine doesn't work for thyroid conditions.' I breathe a sigh of relief.
I feel comfortable with this man. `I am not using a homeopathic remedy, only
herbal med- ication', I say. He begins to write and looks up asking, `Are
your blood values improving?' `Yes. I feel better than when I was first diagnosed.
He continues, `Did you ever take carbimazole?' `Yes, for a few days but I
felt sick. I felt as it my eyes were popping out', I say. Our conversation
continues in a calm manner. He suggests that I continue my herbal med- ication,
have my blood tests with his phlebotomist and copy my results to Dr Fish.
He agrees to monitor my progress and asks me to consider sick leave and he'll
sign me on.10 He asks to see me in a few weeks and thanks me for coming. I
leave feeling elated because he is empathetic. A month later I go to his phlebotomist,
a young nurse with a profes- sional manner. She explains what she will do
and shares that she has an
165
underactive
thyroid. After she takes my blood, she asks me to ring her for my results.
When I leave, I notice how calm and satisfied I feel. A week later, I receive
my results – an improvement. My free thyroxine is 24.9, but the TSH
is the same. I see Dr Fish and tell her the news and about meeting Dr Edwards.
She notices my right eye11 is slightly bulging, a classic sign of overactive
thyroid and asks if I want an eye specialist. I say I am trying to avoid doctors.
She laughs and says, `You must be relieved now that you have Dr Edwards. Just
going to a doctor can cause stress and this is what we want to avoid.' Two
months pass ... I go on a Christmas trip to Lapland with friends and feel
well enough to ski. On my return, I have a blood test and see Dr Edwards.
He tells me that I am not yet normal. My free thyroxine levels go up while
the TSH remains the same. I say that I'd like to take sick leave. He agrees
saying, `That is fine. I'll sign you on.' While on sick leave I go to my Osteopath
who sug- gests that I do yoga because I have a stiff shoulder.12 I phone a
yoga teacher, tell her that I have an overactive thyroid and think yoga would
help. She tells me that her sister had the same problem and yoga helped. She
asks me to come this evening and I agree. Immediately after class, I notice
my pulse goes down. I want to do everything I can to get better. Dr Fish suggests
that I have my amalgam fillings removed. I have them replaced,13 taking six
months. I eat organic food, do yoga, drink little alco- hol, take my pulse
daily and `pace' myself. I renew an old activity – `doing nothing'.
This involves me sitting and doing nothing. That is how I used to calm myself
when I was younger. I find `doing nothing' healing. I sit back and think about
my life. It is a `reflexive' luxury for me. I talk with colleagues about how
all of us in the academy need to slow down in our stress-filled lives. Almost
a year passes ... I feel much better. The palpitations stop. My pulse is down.
In January, I go for a blood test. By this time, I agree that I ring the phlebotomist
directly for my results. In mid-February, I am abroad at a meeting and during
a short break, I ring the phlebotomist. After I hear her voice I say, `Hi,
it's me Elizabeth. Do you have my results?' She responds quickly, saying,
`Yes, let me find them.' There is a pause and shuffling of paper. `OK Elizabeth,
here they are – 15.2 your free thyroxine and 0.46 your TSH. They are
normal.' `That is great', I say with joy. `Do you know this is the first time
my TSH is normal since I started having my blood tests almost 18 months ago?'
`No, Elizabeth, I didn't. That is very nice to hear', she responds excitedly.
`Congratulations', she adds. I feel full of delight. `OK, I'll see you at
my next blood test and thanks', I say, before I hang up. Eight days later
I am with Dr Fish who wears a lovely floral dress with a matching scarf. The
sun is shining through the window onto her desk. I am smiling. `Good news,
Dr Fish, I am finally normal', I say. She smiles too. `Well done. I knew you
would do it. All of your discipline has paid
166
off.
`I must tell you', she says as she looks over my notes. There is a long pause.
`I am just looking at your notes from our first consultation.' She looks up,
`When you first came to see me, you had all the symptoms of acute thyrotoxicosis.
I was very worried about you. You could have easily gone into what we call
`thyroid storm',14 had a cardiac arrest or even died. I just kept my fingers
crossed that you would pace yourself so you would go slower. I am very pleased
for you ... `I smile and feel deep joy ... `GONNA TAKE A SENTIMENTAL (ILLNESS)
JOURNEY' With the backdrop of sorrow, my autoethnography details physiological
changes that occur, embodied choices I make and participatory frame- works
in which these are set. But when I am ill, there is work to be done by me
and others. The entirety of work organised over the course of an ill- ness
is incalculable. Making embodied judgements is hard work for the patient as
is being shaped as the technician of practical and technical knowledge for
the doctor. In this context, Strauss et al. (1982: 254), define instrumental
work or more accurately, `sentimental work as any work where the object being
worked on is alive and sentient'. While they trans- late this into the treatment
of the chronically ill in `technologizied hospi- tals', their ideas are useful
in a wider clinical context and specifically, in providing a context for my
autoethnography. I am slightly cautious of the functionality of the Parsonian
framework they employ (ie, instrumental and expressive labour); their rather
one-sided, limited definition of this kind of work (eg, the focus is on medical
professionals not the `work done by the patients'15) and their apparent prioritization
of chronic over acute illness. Nevertheless, their analyses allows us to move
across and beyond established medical categories, corporeal boundaries, structured
exchanges within the clinic and various intensities of experience which shape
as well as resist categorization. Most importantly, sentimental work suggests
the problematization of illness and desire for health as a power- ful force
that needs to be morally regulated. For these writers, the sources of sentimental
work include a perspective on medical personnel's trajectory work, both expressive
and instrumental. Highlighting different modes of disciplinary regulation,
sentimental work is spatialized from the ever present possibility of clinical
danger, is com- monly done by strangers to the patient, takes priority over
other consider- ations, such as getting to know the patient, and has a temporal
expanse which may last for days or even weeks. On the one hand, these sources
may be a bit outdated, as evidenced by the work of Zussman (1992), Chambliss
(1996), Timmermans and Berg (2003) and Foucault (1973). Nevertheless, Strauss
and his colleague's identification of the diverse types of sentimen- tal work
suggest a panoply of disciplinary procedures, circulating between
167
localized
individuals in the clinic. That interactional and moral rules, trust work,
composure work, biographical work, identity work, awareness con- text work
and rectification work are dramaturgically significant in clinical contexts
is, in my view, theoretically compelling and remains topical. In relation
to my autoethnography, embodied self-assurance in the midst of disease is
established in trust work which begins between Dr Walsh and myself, although
she is a stranger to me and I to her. I sense intuitively there is something
wrong with my body. We also engage in identity work because I am menopausal.
I resist the notion of menopause as making me feel defi- cient (Woods, 1999; Murtagh and Hepworth, 2003). That is how I feel and I sense Dr Walsh knows
it. I am not a `hysterical', menopausal woman as portrayed within traditional
medical discourse (Caplan, 2001). While menopause is a status passage, medicalizing
this transition allows its social context to be ignored (Ballard et al., 2001).
We both resist the urge, although HRT is most kindly offered. Thus, Dr Walsh
responds by doing what she is best at – finding the `basis', doing
diagnosis and making use of her medical gaze. On the other hand, an attempt
at restoration of trust or rectification work appears when the practice nurse
`picks up the pieces' (Strauss et al., 1982: 265) when she learns of my resistance
to medical authority. She panics. I am afraid by the efforts of helpers around
me to shape my life according to categories denoting health and pathology
(Urla and Terry, 1995). `Nurse' attempts to harness my body into an object
of a new biomed- ical discourse, cardiology. I challenge her brusqueness and
further patholo- gization: the treatments and procedures provided by her,
Dr Walsh and the yet unknown cardiologist. Glaser and Strauss (1964) coined
the term `awareness contexts' when looking at the sorts of interactional difficulties
surrounding the dying in hospital. Identifying a range of awareness contexts,
they looked at how social order was maintained in the face of the disruptive
threat, death, and how the spatialized regime of the hospital accommodated
the unintended consequences of impending necrological occurrences. When I
choose alternative therapy, it becomes a negotiating process between me and
caring doctors (Burnell, 2001), Dr Fish and Dr Edwards. We work on establishing
open awareness contexts. I know what is happening to me and my body and the
potential risks of my condition. The doctors know that I know. This knowledge
leads me to a heightened attentiveness of my desire for health as well as
a profound sense of losing my voice which Dr Fish points out is part of `doing
thyrotoxicosis'. My `recovering' body learns to express itself again as calmness
and equanimity are restored in composure work when compassionate words by
Dr Edwards are uttered; I find mercy in myself doing yoga; Dr Walsh smiles; Dr Fish finds a low pulse or the phlebotomist holds my hand. We do biographical
work when the phlebotomist shares her own embodied
168
secret:
she has an underactive thyroid. My Dean and I do similar work when he tells
me his wife shares my condition. Dr Walsh does when she mentions her father-in-law.
Dr Walsh interrogates me for examples of stress, while Dr Fish links thyroid
disorders with lack of emotional space. I exercise class privilege by contacting
Dr Fish. All are intricate pieces of a complex illness story. I am recognized
and recognize myself as ill in these encounters, as we engage in interactional
work and setting moral rules. I am not yet diag- nosed `officially' with an
overactive thyroid by Dr Walsh, although she takes up her instrumental role
competently. But, my own transgressive role breaches the boundaries of our
medical interaction. This estrange- ment may imply that Dr Walsh is not compassionate,
a quality apparently evident for both Drs Fish and Edwards. Whether or not
this is true, a doctor's behaviour is capable of change and communication
patterns between doctors and patients have been known to transform from strictly
medical encounters (which Dr Walsh and I share) to those in which engagement
in a mutual life world is possible (Barry et al., 2001). Indeed, health care
relationships can be spaces where the expertise of both patients and health
professionals are pooled to arrive at mutually agreed goals (Bissell et al.,
2003). However, when the rules and boundaries of medical interactions are
breached, rectification work helps stem resent- ments and feelings of hurt.
I use the counterpower strategy of `exiting' by changing my health care provider
(Asbring and Narvanen, 2004), while perhaps in Dr Walsh's eyes, I exercise
non-compliance (Pollock, 2001) and am the traditional problem patient (Lorber,
1975). CONCLUSION The use of autoethnographic data chronicles my illness experience
from a `difficult' to an empowered patient. My wounded, misunderstood body
was becoming not only a healthier body but also more reflexive, `capable of
ruminating, deliberating, cogitating, studying and thinking carefully' (Martin,
2003: 356). I learned that my self-identity, emotions and experi- ences were
shaped by biomedical experts' risk calculations about my ageing body. My menopausal
body at risk took on a contingent character and was emblematic of middle-aged
women whose future lives were punctuated by troubling symptoms. While the
problems I encountered were socially constructed and political as well as
personal and biological, I have attempted to bring corporeality into the debate
about women's bodies without biological reductionism. For example, I contend
that expe- riences of thyrotoxicosis as an autoimmune disease be revisioned
from a perspective which challenges current biomedical ideas about the negative
169
workings
of women's immunological system (Martin, 1999) and the indispensability of
allopathic medicine and traditional medical authority. This sort of perspective
has methodological implications. For instance, Kuhlman and Babitsch (2002:
440) contend that feminist theorists must take empirical data gathered by
women's health research and the multi- faceted dimensions of bodily perceptions
into account when formulating ideas. The empirical data detail my physiological
changes alongside my embodied choices with the backdrop of the loss of my
healthy body. Choosing alternative therapy led to a heightened awareness of
the impor- tance of `gendered illness matters' (Chrisler, 2001) and eventually,
the beginning of healing. My experience of thyrotoxicosis, revisioned from
a feminist perspective, illustrates the importance of sentimental work in
illness encounters. The profound sense of losing my voice through my jangled
emotions was intimately linked with `my disease'. This is not new in medicine.
As `a crying' body learns to express itself again, the thyroid gland becomes
implicated in this intensely emotional, embodied experi- ence (see Lutz, 1999:
91). In the face of medicine, I suffered `demoraliza- tion' and found that
a healing generosity was lacking (Frank, 2004). I began with the assumption
that being reflexive about one's illnesses, especially through autoethnography,
can be a useful learning tool for med- ical professionals and patients alike.
I desired to become a communicative body (Frank, 1995), offering generous
greetings to other ill bodies with similar experiences. Whether or not I have
achieved this level of generos- ity, I have through autoethnography `given
voice to my body' (Sparkes, 2003b: 64), experienced a connectedness to others
(Richardson, 2001) and bore witness to how embodied identifications with others
are able to induce dialogical exchanges. In learning from personal sickness
narra- tives, let's challenge outdated medical practices, based on gendered
stereotypes of ageing, sick, female bodies. Being reflexive through autoethnography
is one way of mounting this challenge. ACKNOWLEDGEMENTS I am very grateful
to Barbara Katz Rothman of City University of New York, Gillian Hundt of University
of Warwick, Jeany Elson of University of New Hampshire and Malcolm Williams
of University of Plymouth for their encouragement and comments on earlier
versions of this paper. Thanks also to Vikki Charles of University of Southampton
for her helpful suggestions on informed consent and Ken Plummer of University
of Essex for first suggesting that I write this article. A special thank you
to the anonymous reviewers and the Editor of Auto/Biography, Andrew Sparkes,
for their helpful comments for revision.
170
NOTES
1 Also known as Grave's disease,
hyperthyroidism or overactive thyroid, thyrotoxicosis is an autoimmune disorder
which occurs when one's own antibodies attack and begin to destroy the thyroid
gland.
2 These were daily palpitations,
joint pains, general muscle weakness, floppiness, falling, sleeplessness,
weight loss, tremor, `gritty' eyes, vitiligo or discolouration of the skin
on the neck, diarrhoea, irritability, high pulse, damp skin, brittle nails,
dull hair, hair loss, swollen neck and difficulty in swallowing.
3 I could not find a current
address.
4 The following texts are
data based on extractions from my diaries.
5 NHS = National Health Service,
the State-funded health service.
6 This is my resting pulse.
I am twice the normal rate.
7 Blood values vary between
laboratories. At mine, the normal range for free thyroxine is 2.8 — 23.1 and for TSH, 0.35 — 5.5. (I am 3 times the normal value.)
8 This is the tiny but significant
part of the main thyroid hormone. Its level in the blood is useful in assessing
whether the thyroid is functioning properly (Gomez, 1994: 119).
9 TSH or thyroid stimulating
hormone is produced in the pituitary gland and directs the thyroid to produce
hormones. TSH goes up when the thyroid isn't providing enough ... and down
when there is a surplus (Gomez, 1994: 119).
10 In Britain, in order
to get statutory sick pay, a NHS GP needs to `sign you off work'.
11 This was noticeable
by my partner, friends and colleagues from September 2001 until October 2002.
The bulging coincided with my taking the anti-thyroid drug, carbimazole.
12 `A frozen shoulder'
is common in thyrotoxicosis. This is inflammation of the covering of the
shoulder joint (Gomez, 1994: 97).
13 Before taking out my
fillings, the dentist tests the electric charges triggered by them and they
are abnormally high.
14 This is an out of control
thyroid. It is viewed as life threatening when it occurs and requires `instant
hospitalization and energetic anti-thyroid measures' (Gomez, 1994: 63). 15
See Werner and Malterud (2003) for a discussion of this type of work.
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NOTE
ON CONTRIBUTOR
ELIZABETH
ETTORRE was born in the USA, where she received a BA in Sociology from Fordham
University. She completed her PhD in Sociology at the London School of Economics.
Her sociological work has been in England, Finland and the USA. Elizabeth
has had a consistent research interest in women and substance use, gender
and health and the body. Besides numerous journal articles, her books include:
Lesbians, women and society (1980); Women and substance use (1992); Gendered
moods
175
(1995)
with Elianne Riska; Society, the body and well-being (1996) with K. Suolinna
and E. Lahelma; Women and alcohol: a private pleasure or a public problem?
(1997); Before birth (2001); Reproductive genetics, gender and the body (2002); Revisioning women and drug use (forthcom- ing) and Making lesbians visible
in the substance use field (forthcoming). She is currently Professor of Sociology
and Associate Dean (Research and Enterprise), Faculty of Social Science and
Business, the University of Plymouth, UK.