Pergamon

Pl h S0277-9536(96)00333-4
Soc. Sci. Med. Vol. 45, No. 2, pp. 189-201, 1997
1997 Elsevier Science Ltd
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0277-9536/97 $17.00 + 0.00
MEDICATION, CHRONIC ILLNESS AND IDENTITY:
THE PERSPECTIVE O,F PEOPLE WITH ASTHMA
STEPHANIE ADAMS, ]?,OISIN PILL and ALAN JONES
Department of General Practice, University o1' Wales College of Medicine, Llanedeyrn Health Centre,
Maelfa, Llanedeyrn, Cardiff CF3 7PN, U.K.
Abstract--The issue of compliance with prescribed medication has traditionally been dominated by the
perspective of the health professional although increasingly sociologists, using qualitative methods, have
begun to present the patients' point of view. However, little has been published on asthma, despite the
numbers of people suffering from this chronic condition and the amount of medication regularly pre-
scribed. This paper focuses on the perspective of a sample of S. Wales (U.K.) asthma patients who
have all been prescribed prophylactic medication in the last 12 months and explores their attitudes to
medication in the context of their everyday lives, using inductive qualitative research methods. Two
main groups were identified: the deniers and the accepters. They differed fundamentally in their readi-
ness to accept the identity of asthma sufferer which, in turn, was associated with very different beliefs
about the nature of their problem and the meaning of the medication prescribed for it. There was also
marked differences in their strategies of self-presentation and disclosure and their pattern of medication
use, particularly for prophylactic medication. A third group, the pragmatists, were also identified as a
possible sub-group of the accepter category who are less open within self-presentation and less consist-
ent in their beliefs about asthma but do not reject the label entirely. Identity work, i.e. the way the
respondents interpreted the social identity of asthma sufferers and managed to reconcile it with other
social identities, is proposed as the most useful way of understanding the observed variation in the way
people diagnosed as asthmatic conceptualise and use their medication. 1997 Elsevier Science Ltd
K e y wo r d s - - c o mp l i a n c e , medication, asthma, identity
INTRODUCTION
Why patients do or do not take their prescrii~ed
medication is a question that has been the starling
point for a great deal of research and comment by
frustrated clinicians and, more recently, social scien-
tists. The medical literature on non-compliance has
largely been devoted to documenting the exten! of
the problem, identifying the causal factors for com-
pliance and developing educational strategies and
practical interactions to improve compliance. Thus,
it has been estimated that about 50% of patients do
not comply with doctors' advice on treatment
(Cart, 1990; Haynes e t al . , 1979; Ley, 1988; Wright,
1993) but, despite the massive literature (Garrity,
1981; DiMatteo and DiNicola, 1982; Eraker e t a l . ,
1984) there has been limited agreement about the
causes of non-compliance (Donovan and Blake,
1992; Stockweli Morris and Schulz, 1992) and lim-
ited success in improving patient adherence, particu-
larly for long-term treatments (Haynes e t a l . , 1987).
The inconclusive and even contradictory na:ure
of much of the work on this topic has been attr:bu-
ted to the absence of a theoretical framework ~.nd/
or sufficient methodological rigour in many studies
(Donovan and Blake, 1992; Stockwell Morris and
Schulz, 1992) and also to the domination of the
perspective of the health professional and the fail-
ure to take into account the patient' s views. Trostle
has gone so far as to maintain the research litera-
ture about compliance is pre-eminently, although
covertly, a literature about power and control
(Trostle, 1988):
It is written largely by medical professionals about them-
selves and their clientele, and it reveals the medical profes-
sion's world view: the problem lies in patient's behaviour
or in doctor/patient interaction; the solution lies in patient
education, behavioural reinforcements and better doctor/
patient communication.
However, a body of sociological work is now
available which suggests that patients evaluate pro-
fessional instructions in a wider context than the
purely medical one (Drummond and Mason, 1990;
Cornwell, 1984; Calnan, 1987; Stimson, 1974) and
there is also a small but growing literature which
looks specifically at the issue of compliance with
prescribed medication from the patients' point of
view (Donovan and Blake, 1992; Stockwell Morris
and Schulz, 1993; Conrad, 1985; Morgan, 1996).
Much of this work has been carried out using
qualitative methods, such as in-depth interviews, to
explore the meaning of the medicine and medi-
cation-taking behaviour in the day to day life of the
respondent. The basic theme underlying these stu-
dies has been that the decisions taken are rational
in the context of the beliefs, responsibilities and pre-
ferences of the patients interviewed. For example,
they weigh up the perceived costs and benefits of
189
190 Stephanie Adams e t al .
the medicine offered ( Donovan and Blake, 1992;
Conr ad, 1985; Arl uke, 1980; Hunt e t a l . , 1989;
Cooper e t a l . , 1982; Mor gan and Wat ki ns, 1988) in
accordance with desired out comes which may not
correspond to those pl anned by the health pr o-
fessional. Modi fi cat i on of the t reat ment regimen is
very common often because of the pat i ent s' percep-
tions t hat the medi cat i on is ineffective and/ or the
side effects are t oo t roubl esome. Several ot her
reasons have been advanced by researchers for self-
regulation: desire for great er cont rol over one' s life;
testing in or der to eval uat e severity of the con-
dition; pract i cal reasons to do with the dai l y rou-
tine.
Taki ng regul ar medi cat i on is often advocat ed for
disease suppression: a common example is ast hma
which account s for high mor bi di t y in pr i mar y care
affecting 5% of adul t s (Fl emi ng and Crombi e,
1987) and appr oxi mat el y 12% of children
(Usherwood, 1987). The medical model of ast hma
management involves a compl ex set of strategies
and advocat es the use of regul ar i nhal ed prevent a-
tive or prophyl act i c medi cat i on in all but the more
mild forms of the disease (British Thoraci c Society,
1990) often necessitating the use of medi cat i on
when the pat i ent may be sympt om free. Like di a-
betes (Peyrot e t a l . , 1967), ast hma forms a rich
focus for pot ent i al mi smat ch between doct or s' and
patients" percept i ons of compl i ance with medi cat i on
and, not surprisingly, failure to adhere to t reat ment
regime is common. However, its precise extent is
poor l y underst ood and barel y investigated
(Cochrane, 1992).
The appr oach adopt ed in this st udy was to
explore ast hma pat i ent s' at t i t udes to pr ophyl act i c
medi cat i on using a pat i ent -cent red rat her t han a
doct or-cent red perspective. Accordi ngl y, pro-
fessional goal s and instructions were not uncondi -
t i onal l y accepted as the objective st andards. The
probl em, as defined by the clinicians, can be sum-
mari zed as follows. The prevalence and i mpact of
adul t ast hma is subst ant i al but poor self-manage-
ment, especially failure to adhere to t reat ment regi-
mens, is common. Prevention is now recognised as
an integral par t of care and the i nfl ammat ory
nat ure of the disease is well underst ood. But still
there are unaccept abl y high rates of mor bi di t y and
mor t al i t y (Jones, 1991; Nevill e t a l . , 1993). A per-
sistent concern is t hat a maj or cont r i but i on to the
cont i nuat i on of these high rates is the overuse of
bet a-agoni st s (medi cat i on designed to relieve symp-
toms) combi ned with the underuse of anti-inflam-
mat or y medi cat i ons (designed to prevent the onset
of sympt oms) (Costello and Mann, 1992; Spitzer e t
a l . , 1992; Tattersfield, 1994). Our assumpt i on was
t hat appar ent l y non- r at i onal beliefs and behavi ours
woul d "make sense" once the pat i ent s' social cir-
cumstances, i nt erpersonal and work relationships,
and the meaning they at t ach to the disease itself
had been t aken i nt o account.
In addi t i on to the medi cat i on l i t erat ure quot ed
above, this st udy is also i nformed by previ ous social
research on chroni c illness (Conrad, 1990; Strauss
and Gl azer, 1975). There is, however, comparat i vel y
little on ast hma itself. Less t han l 0 years ago
Anderson and Bury (1988) comment ed t hat they
coul d not find a research account of living with a
chronic r espi r at or y illness. Since then there has
been a handful of publications: a survey on the
social i mpact of ast hma using st andardi sed inter-
views (Nocon and Booth, 1990); a st udy (using
more qual i t at i ve techniques) of chroni c obst ruct i ve
ai rways disease (Williams, 1993) which covered
some chroni c ast hmat i cs with consi derabl e per ma-
nent and irreversible ai rway obst ruct i on; and a
st udy (drawi ng on the i nt eract i oni st perspective
within medical sociology) of the experiences and
percept i ons of chronic severe ast hma in men of
worki ng age (Hewett, 1994).
Much of the sociological wor k on chroni c illness
has adopt ed a bi ographi cal approach: for example,
in his overview of research and debat e Bury (1991)
concept ual i sed the career of the sufferer as passing
t hrough three key stages; onset, expl anat i on and
legitimization and finally adapt at i on. For Bury
onset of chroni c illness is associ at ed with bi ographi -
cal di srupt i on, i.e. the person experiencing the onset
chronic illness not onl y suffers pai n but also experi-
ences the di srupt i on of work and family rel at i on-
ships and future plans. This can lead in t urn to
"l oss of sell", a sense of di mi ni shed i dent i t y
(Charmaz, 1983, 1987). An i mpor t ant modi fyi ng
fact or here is the significance of the illness to the in-
dividual, part i cul arl y the negative connot at i ons and
stigma associ at ed with the condi t i on.
A useful refinement of the concept of stigma
comes from the wor k of Scambl er and Hopki ns
(1986) on epilepsy. By maki ng the di st i nct i on
between enacted stigma (experienced from others)
and felt stigma (self-maintained) they poi nt out t hat
it may well be the l at t er rat her t han the former t hat
makes for di srupt i on in pat i ent s' lives. Similar
themes have emerged from many of the studies
expl ori ng the social and psychol ogi cal aspects of
living with chroni c illness and it was ant i ci pat ed
t hat such concepts mi ght i l l umi nat e significant
aspects of the experience of ast hma patients and the
place of medi cat i on in their dai l y life.
The mai n purpose of the paper is to provi de an
expl anat i on (using inductive qual i t at i ve research
met hods) for the observed vari at i on in the way
peopl e di agnosed as ast hmat i cs conceptualise and
use t hei r prescri bed medi cat i on. A secondary ai m is
to generate hypot heses to account for the findings,
devel opi ng and ext endi ng concepts al ready used in
the chronic illness literature.
First, the met hods are outlined, followed by the
mai n findings presented in the form of a descriptive
t ypol ogy. Fi nal l y, a hypothesis is advanced to
explain why the people in our sample adopt ed their
Medication, chronic illness and asthma 191
par t i cul ar at t i t ude to the di agnosi s (with all its as-
soci at ed consequences for medi cat i on practice).
METHODS
The met hods utilized were gui ded by the inten-
t i on t hat the research woul d be an inductive hy-
pot hesi s generat i ng st udy t hat br ought 1he
i ndi vi dual ast hma sufferer' s percept i ons and
assumpt i ons t o centre stage t o enabl e an expl ora-
t i on and generat i on of hypot heses t hat had val i di t y
t o t he ast hma sufferers themselves. In common with
ot her qual i t at i ve studies t he sampl e was small
( N ~ 30) and dr awn from a single general practice
in Sout h Wal es serving 10,000 pat i ent s. The six-
par t ner pract i ce is based in moder n pur pose- bui l t
premises in a t own t hat has been t r adi t i onal l y
domi nat ed by heavy i ndust ry and mining, t hough
t he pat t er n is changi ng as elsewhere in Sout h
Wales. Respi r at or y pr obl ems and chest diseases are
t herefore fami l i ar to the general popul at i on. The
pract i ce has a desi gnat ed nurse-run, doct or - sup-
por t ed weekly ast hma clinic.
The number of subjects was i nt ended t o al l ow in-
dept h expl or at i on of t he t opi c while permi t t i ng suf-
ficient t i me to analyse, r e- or der and reflect on the
dat a. The choice of subjects was det ermi ned by the
research quest i on itself in or der t o maximise the
vari et y of responses, an appr opr i at e st rat egy where
little is known. It was decided to interview onl y
adul t s over t he age of 18 years who have been di ag-
nosed as ast hmat i c. There is no gol d st andar d for
defining ast hma, but in this pract i ce a pr agmat i c
appr oach was accept ed where the di agnosi s is made
i f epi sodi c cough and/ or wheeze presents in a clini-
cal setting and ast hma is the most likely cause ~' ith
ot her causes havi ng been excluded.
In the year before the st udy st art ed a pract i ce
audi t (using the pract i ce comput er ) had exami ned
all i nhal ed reliever and prevent er medi cat i on pre-
scribed dur i ng the 12 mont h period. Pat i ent s had
been classified i nt o five groups accordi ng to the
rat i o of "rel i ever" and "pr event er " medi cat i on
requested on a repeat prescri pt i on basis.
("Rel i evers" were defined as any selective bet a- ago-
nist medi cat i on either in dr y powder form or
met ered dose i nhal er vi a any of the current delivery
systems available. "Prevent ers" are mai nt enance
pr ophyl act i c t reat ment , i.e. any i nhal ed st eroi d
either in dr y powder or met ered dose i nhal er ~tlso
vi a any of t he current l y avai l abl e delivery met hods. )
Taki ng advant age of this dat a, a represent at i ve
number from each group was selected cont rol l i ng
for gender and age. This was done by the social
scientist who under t ook the fieidwork: none of the
par t ner s were involved in the selection process and
none knew which pat i ent s were interviewed.
Al l the pat i ent s in t he st udy had been labelled as
ast hmat i c and had document ed evidence in t hei r
not es of a prescri pt i on for pr ophyl act i c medi cal i on
in the year pr i or to the commencement of field-
work. In the eyes of t hei r medical pract i t i oners they
t herefore had a cert ai n mi ni mum level of severity of
the disease. Al l pat i ent s with mixed obst ruct i ve ai r-
ways disease or who were prescri bed mai nt enance
oral st eroi ds were excluded from this sampl e so t hat
any difficulties in rel at i on to the possible stigma of
t aki ng oral steroid medi cat i on were avoi ded. The
cat egori es produced by the audi t dat a allowed
sampl i ng across a range of pat i ent s who had been
prescri bed bot h reliever and pr ophyl act i c medi-
cat i on but were appar ent l y using t hei r medi cat i on
in different ways, rangi ng from t hose t aki ng relie-
vers onl y to t hose achieving a balance. There is no
consensus on what const i t ut es good clinical pract i ce
in terms of rat i os of reliever t o prevent er medi-
cat i on in ast hma. Nevertheless it is pr obabl e t hat i f
a pat i ent t akes in excess of twice as much reliever
as prevent er medi cat i on t hat there is either excessive
use of bet a-agoni st reliever or sub-opt i mal usage of
prophyl act i c i nhal ed steroid medi cat i on.
It was ant i ci pat ed from the beginning t hat the
pat t er n of prescri bi ng mi ght bear little rel at i on to
act ual use and this indeed proved to be the case.
For example, we found peopl e orderi ng pr ophyl ac-
tic al ong with reliever medi cat i on " out of habi t "
but never act ual l y t aki ng any or cont i nual l y losing
t hei r reliever inhalers and t herefore orderi ng far
mor e t han t hey act ual l y t ook. However, the audi t
cat egori es were useful in identifying the pot ent i al
range of respondent s in keeping with our wish to
achieve a sample t hat woul d maximise variety of re-
sponse to prophyl act i c medi cat i on.
The 30 pat i ent s selected consisted of 14 women
(10 worki ng class and four mi ddl e class) and 16
men (eight worki ng class and eight middle class).
Thei r ages ranged from 19 to 57 years of age. The
length of di agnosi s ranged from two to 22 years.
Data collection
Fi el dwor k was carri ed out in 1994. Respondent s
were first cont act ed by a letter from their surgery
i nformi ng them t hat they woul d be receiving a
request to be interviewed about t hei r chest probl ems
by a non-medi cal researcher and aski ng for their
co- oper at i on. ( Ast hma was del i berat el y not men-
t i oned in the letter so t hat t hose who had not
accepted the di agnosi s di d not refuse to be inter-
viewed on the grounds of ineligibility). Letters were
followed up by a telephone call requesting an inter-
view. Al l were assured of confi dent i al i t y, t hat any
i nf or mat i on given woul d not be t raced t o i ndi vi dual
respondent s, and t hat refusal to accommodat e this
request woul d not in any way affect their medical
care.
In-dept h interviews (average length 1-1.5 hours)
were carri ed out with each respondent in their own
home and t ape-recorded with permission. Each
interview was l at er t ranscri bed. An "i nt ervi ew
gui de" was devised and covered all factors pert ai n-
192 Stephanie Adams et al.
ing to patients' attitudes to asthma, medication,
coping strategies, normalisation and the effects of
these on their everyday lives. Each patient, how-
ever, set his/her own agenda(s) of what was import-
ant to them about their condition and of its
meaning in their lives.
Validation of the analysis
The fietdwork and bulk of the initial analysis was
carried out by the first author. However, all the
transcripts were read and discussed by both the first
and second authors and the emerging analyses
debated by all three. Key themes and earlier ver-
sions of the analysis given here were also presented
to both patient asthma groups and professional
meetings. Their feedback has provided us with
some validation for the typology described here.
MAIN FINDINGS
Initial inspection of the transcripts for underlying
themes demonstrated that the sample could be
broadly divided into those who did and did not
accept the diagnosis of asthma. Further analysis
showed this split to be associated with different cop-
ing strategies as well as different approaches to
medication and its use, so these two polar groups
form the basis of the typology described here.
However, among those who accepted the diagnosis
there was a further division into those who accepted
the label wholeheartedly and those who adopted a
more pragmatic approach. The findings are accord-
ingly presented under three main headings: deniers
and distancers; accepters; and pragmatists. At the
end of each section there is a brief discussion relat-
ing the empirical data to concepts developed in
other chronic illnesses.
DENIERS/DISTANCERS
Self-presentation and disclosure
These respondents comprised half the sample
(N = 15) and it was very striking how keen they
were to impress on the interviewer that they them-
selves did not have asthma. Several claimed that
"The first they had heard of being asthmatic was
when they had the letter" and were convinced they
had somehow "got on the wrong list". Many would
not respond to questions containing the word
"asthma" and had to be interviewed in terms of
what they called their "bad chests". Others would
allow the interviewer to refer to "asthma" occasion-
ally provided they, in turn, periodically claimed
that they did not really have asthma or at least not
"proper asthma".
Several respondents denied that their doctor had
told them that they had asthma, "He didn' t actually
use the word asthma" (male, aged 22, welder, Int.
No. 17), or "She said I had bronchial asthma, so
it's bronchial I am" (woman, aged 52, unemployed,
Int. No. 7) or "I' ve been told I' ve got an asthmatic
condition. I don' t think that' s the same as asthma"
(woman, aged 22, unemployed, Int. No. 19). The
patients in this group fell into two (sometimes over-
lapping) categories; one of which we have termed
"deniers", who claim that they do not have asthma
at all ("just a bit of chest trouble") and the
"distancers", who did admit at times throughout
the interview that they had "slight" or "not proper"
asthma etc.
In the early stages of the interviews all respon-
dents in this group claimed that their condition had
no effect on their lives and that they rarely took
their reliever medication. It was only by means of
in-depth interviewing that contradictions such as "I
used my ventolin everyday last week but some days
I actually don' t use it at all" were elicited, and that
the actual (often quite severe) effects of asthma
upon their lives emerged. It became clear, however,
that respondents' "bad chests" were indeed affecting
their lifestyles and all had developed strategies to
avoid physical symptoms. All avoided particular
situations such as smoky pubs, barbecues, running,
going out if a neighbour had been cutting the grass,
staying in as much a possible in certain seasons,
rushing etc. Most avoided a combination of such
situations. For example, one woman, who claimed
that asthma did not affect her life in any way, had
difficulty even going into the garden to put out her
washing because of the change in atmosphere, and
was genuinely concerned that she might lose her
husband as it was all she could do to keep breath-
ing during sexual intercourse let alone exhibit signs
of enthusiasm or pleasure. The result was that she
avoided marital relations as much as possible.
The respondents in this group did not fall into
what Goffman (1963) terms the "discredited" who
assume that their stigma or disability is immediately
evident to others. Indeed, they made considerable
efforts to ensure that this was not the case. They
fell rather into the "discreditable" category who
could pass muster as non-asthmatics. They thus saw
themselves as having a choice about disclosure of
their "bad chests" and exercised a strict strategy of
information control. Partners and close family were
unavoidably aware of the respondents' "bad chests"
but respondents had developed ways and means of
concealing their condition from others. Six respon-
dents took reliever medication before it was necess-
ary just in case they demonstrated symptoms in
social/public situations. In other words, they were
using their relievers as a preventer.
Relievers were used by all (often frequently) e.g.
"behind the machinery in work", "in the toilet" or
"by sneaking into the kitchen if we have visitors".
With the exception of seven respondents who spon-
taneously volunteered the information, each was
asked where they kept their inhalers. All but two of
this group claimed to take a reliever inhaler with
Medication, chronic
t hem wherever t hey went and went on to describe
how they had devised strategies of conceal i ng use
whet her in or out si de the home. Most expl ai ned
t hei r reasons in t erms of "embar r assment ",
"di scr et i on" and "pr i vacy". The desire to present
onesel f as l eadi ng as nor mal a life as possi bl e and
the strategies adopt ed were found to be integr~Jiy
rel at ed t o t hei r at t i t udes t o ast hma, t hei r prescri bed
medi cat i on and to the ways in which they saw the
issue of cont r ol in respect to t hei r physical con-
di t i on.
Respondents' notions of asthma and medication
Exact l y what are t he deni ers/ di st ancers refusing
t o accept? What di d t hey t hi nk ast hma was, ~.nd
what , therefore, di d they t hi nk "bei ng an ast h-
mat i c" entailed?
Al l deni ers/ di st ancers shared the view t hat the
self-image avai l abl e for acknowl edged asthmatic~; is
negative. When asked how t hey knew they di d ~aot
have ast hma or not " pr oper as t hma" or what it
woul d be like t o have ast hma, all were fort hcomi ng
with negative images of what "ast hmat i cs" were
like, "Someone in a wheel-chair with an oxyj;en
mask on", or "someone who can har dl y wal k" etc.
and words like "weakl i ng" and "wi mp" were com-
mon place. Such descri pt i ons were often follov~ed
by observat i ons t hat a par t i cul ar interviewee "was
not a bi t like t hat " so coul d not possi bl y be suffer-
ing from ast hma. Al l want ed to avoi d membershi p
of what t hey clearly t hought of as a st i gmat i sed
group. They rejected the i dent i t y as par t of t hei r
self-image and viewed the role of "ast hmat i c" as
merely an i mposed, meaningless and often tra~asi-
t or y l abel or social identity. As one woman
expl ai ned, " I ' ve al ways been chesty, but since last
year t hey st uck the label of "ast hmat i c" on me. But
I ' m no different now and nei t her is my ches r '
(woman, aged 22, housewife, Int. No. 8). As with
all deni ers/ di st ancers however, t he woman in ques-
t i on was havi ng t o come to terms with her aware-
ness of how ot hers may react t o this label i f known,
and with havi ng to t ry and reconcile the l abel with
her own self-image.
No r espondent in this gr oup claimed to know
exact l y what ast hma was (not suffering from it
themselves) but all coul d expl ai n what t hei r " bad
chest s" meant t o them. These represent at i ons can
be generalized i nt o a "t i ght eni ng of the chest", " a
nar r owi ng of the t ubes t hat hel p you br eat h" or " a
clogging up of t he t ubes with mucus". These inter-
viewees were cl ear t hat "havi ng a bad chest " di d
not mean t hat they were "i l l " al t hough ast hma
coul d make ot her peopl e ill. As one respondent
expressed it, " I t [his " bad chest"] i sn' t an illness.
I t ' s a condi t i on like havi ng a bad knee. I t ' s goinl; t o
pl ay you up sometimes but you' r e not ill" (nmn,
aged 20, uni versi t y st udent , Int . No. 5).
Many had "been ill" in the last year with c:on-
di t i ons such as tonsillitis or passi ng a ki dney stone,
illness and asthma 193
but none, despi t e suffering (usually regular) distress
with their ast hma had "been ill" with ast hma.
Several respondent s admi t t ed t hat they were " a bit
poor l y" but onl y for the dur at i on of their breat hi ng
difficulties. Viewing ast hma in this way enabl ed
t hem to see ast hma mor e in terms of an acut e form
of being unwell, which was clearly (like tonsillitis
etc.) more accept abl e to t hem t han accept i ng the
label or social i dent i t y of someone who had a
chroni c illness.
Respondents' notions of reliever medication. Al l
respondent s in this group were t aki ng mor e t han
opt i mal amount s of relievers onl y but , as descri bed
in the met hods, had been prescri bed prophyl act i c
t reat ment . When discussing t hei r prescri bed medi-
cat i on these interviewees reconciled their deni al of
ast hma with t hei r use of relievers in a st rai ght -for-
ward manner. For exampl e, "Vent ol i n is used by
ast hmat i cs, but i t ' s good for bad chests t oo"
(woman, aged 22, housewife, Int. No. 8). Thei r
model of ast hma was essentially a mechani cal
one- - " cl os i ng or bl ocki ng up the t ubes". This was
paral l el ed by an equal l y mechani cal expl anat i on of
the effectiveness of reliever medi cat i on which was
seen as "openi ng or clearing the t ubes".
The fact t hat bot h t ypes of ast hma medi cat i on
are delivered by means of an inhaler had bot h
pluses and minuses. For most , t aki ng medi cat i on
from an inhaler was seen as less serious t han t aki ng
t abl et s as it "onl y goes into your lungs rat her t han
into your system as a whole". On the ot her hand,
there was sometimes an expressed fear of a
"st rangeness" about inhalers for significant others
who may see them. No respondent expressed fears
of becomi ng reliant upon reliever medi cat i on for, as
seven poi nt ed out , al t hough they may have t aken it
several times t hat day they "mi ght not t ake it agai n
for a few days", t hereby largely dispelling any fears
of dependency.
Respondents' notions of prophylactic medication.
Al l the respondent s (except three) admi t t ed to hav-
ing been prescri bed prophyl act i c medi cat i on but
none were t aki ng it. Thei r reasons for not doi ng so
were complex. Onl y three respondent s were una-
ware t hat prophyl act i c medi cat i on cont ai ned ster-
oi ds and t here was much evidence of what has been
t ermed "st eroi d phobi a" (Price, 1994). Slightly
varyi ng versions of the following quot e were com-
mon, " I t ' s stuff boys use to bui l d muscles up. And
t hey die of it sometimes. They' r e illegal steroids
ar e" (man, aged 49, machine oper at or , Int. No. 20).
Al l respondent s in this group t hought t hat steroids
woul d have negative side effects. Despite the fact
t hat all respondent s admi t t ed to sometimes t aki ng
vent ol i n every day it was also significant t hat pre-
vent at i ve medi cat i on had to be t aken on a rout i ne
dai l y basis. The respondent s' obj ect i ons t ook two
mai n (sometimes overl appi ng) forms. Many feared
t hey woul d become dependent on any medi cat i on
t hat had to be t aken daily. All claimed t hat such
194 Stephanie Adams e t a l .
fears would exist if the medication contained ster-
oids or not and regardless of the form of its admin-
istration (inhalers, pills, or liquid medication). In
addition, the meaning these respondents had placed
upon both their condition and its medication--the
way they had constructed their illness and its re-
lation to their medication--was equally, if not
more, significant. Accepting the need to take regu-
lar, daily medication was synonymous with accept-
ing that one was "asthmatic" and/or "bad enough
to have to take that sort of stuff". Such daily medi-
cation was seen as for those "with proper asthma"
and they were pleased that their "bad chests" did
not require such treatment.
Furthermore, all respondents considered them-
selves in control of their condition with the aid of
their relievers and while all but two were aware that
their surgery provided an asthma clinic none
attended. As one respondent expressed it, "OK. I
like a few drinks but I' m not an alcoholic so I
don' t go to an alcohol anonymous clinic. Same
again, I' ve got a bit of a cough but it doesn' t mean
I go to an asthma clinic. I wouldn' t belong" (man,
aged 52, clerical worker, Int. No. 3). It was clear
that general practices could provide endless edu-
cational programmes and two asthma clinics a day
but these patients would not attend for the simple
reason that they did not consider that they had
asthma.
To sum up, the analysis of the themes emerging
from the accounts given by this group confirmed
the strong linkages between the meanings given to
asthma and its treatment and strategies of normali-
sation and self-presentation/disclosure. All were
refusing to accept the identity of "asthmatic" and
were normalising their lives to the best of their abil-
ities. They were not just dissociating themselves
from specific behaviour but from the whole role of
"asthmatic". It is argued that such denial constitu-
tes "a wedge between the individual and his role,
between doing and being" (Goffman, 1961) and is
likely to result in identity confusion or a
"diminished identity".
All wished to avoid membership of what they
perceived as a stigmatised group and had recon-
structed their asthma in ways that allowed them to
deny the label or social identity of "asthmatic".
Viewing their asthma as "bad chests" (interpreted
as an acute condition) allowed them to use reliever
medication. The use of daily prophylactic medi-
cation, however, was not acceptable since that was
synonymous with acceptance that one was
"asthmatic". (The steroid content was also an ad-
ditional cause for concern.)
It is suggested that the respondents' refusal to
accept that they were suffering from a chronic con-
dition was based on a refusal to accept a sick role
of this character which could not be readily recon-
ciled with their other social identities and conse-
quently not readily assimilated into their personal
identities. The relevance of such "identity work" is
illustrated in the following example.
Alan was a professional man (aged 42, Int. No.
1) who would not accept that he was an
"asthmatic". He claimed that he was "very disap-
pointed when I was told I had asthma. I' d always
been so fit. I' d never had it before so I couldn' t see
why I should have it now." As well as being in a
position of some authority and status in his occu-
pational life, Alan was involved in the management
of sports clubs and on high status social association
and played golf, squash and football. He was
clearly having difficulty in reconciling the social
identity of "asthmatic" with his other social identi-
ties of "successful professional", "secretary of sev-
eral sports clubs" and "fit executive" which were
integral elements of his personal identity. To admit
the social identity of "asthmatic" into his "role-set"
or set of social identities would affect not only the
pre-existing social identities but also his sense of
self: his personal identity. As he expressed it, "Well
people would be very shocked if they knew I had
asthma. That' s why I've never told them though the
doctor suggested that I did. Though I haven' t of
course. It's just not the way people see me. It' s not
the way I see myself come to that. I don' t know if I
could cope if I really had it." The relevance of this
identity problem was clear in the way that Alan
used his medication, "The ventolin is something I
use when I need it to sort out a problem. But the
other one, taking it every day .... well, its really
admitting to yourself that you are an asthmatic
with a real problem here." In common with all the
deniers/distancers then, Alan was concerned with
his self-image as well as the perceived inevitable
effects that others' knowledge of his illness would
have on his social identities and the consequent
diminishment of his self-identity brought about by
the expected reactions of others.
Such identity concerns were not restricted to pro-
fessional men. Two women nurses who were also
mothers and grandmothers, prided themselves on
"coping" and "always being able to help others"
and found the identity of asthma sufferer unaccep-
table. So did younger men and women who per-
ceived a conflict with their image of themselves as
successful/attractive to the opposite sex. The nature
of the identity problems could vary even when
respondents' primary social identity or identities
were the same. For example, one woman who had
three children under the age of five years of age and
whose main identity was that of "mother" could
not reconcile the identity of "asthmatic" with the
meaning she placed upon her identity of "mother".
Another woman whose primary identity was also
that of "mother" and who had children of similar
age, felt that accepting the new identity of
"asthmatic" was relatively unproblematic as she
was coping, and seen to be coping, with her family.
Whatever the variations, it would seem that when-
Medication, chronic illness and asthma 195
ever accept ance of t he social i dent i t y of
"ast hmat i c" t hreat ens t o l ead t o a perceived di mi n-
ished self, deni al or di st anci ng (which was seen to
be i nt egral l y l i nked t o use of prescri bed medi cat i on)
is likely t o occur.
ACCEPTERS
Self-presentation and disclosure.
The accept ers were t he second largest group in
t he sampl e ( N = 9). In cont r ast to the deni ers/ di s-
t ancers all respondent s in this gr oup had val i da: ed
the doct or ' s di agnosi s, freely admi t t i ng t o be:rig
ast hma sufferers and accept i ng t he necessity to t ake
bot h pr ophyl act i c and bet a-agoni st medi cat i on. The
accept ers had compl et el y accept ed t hei r condi t i on
i nt o bot h t hei r lives and their self-images. The dat a
cont ai n quot es from each respondent expl ai ni ng
t hat "as t hma is par t of me like my bad t emp, : r"
(woman, aged 38, housewife, Int. No. 22) or "i t ' s
par t of my life. Par t of me real l y" (man, aged 22,
uni versi t y st udent , Int. No. 26). Al t hough all had
accept ed the label of "ast hmat i c" at di agnosi s they
were j ust as aware as the deni ers/ di st ancers of how
ot hers (and indeed, t hey themselves pr i or t o diag~ao-
sis) viewed ast hma and were far from val ui ng t hei r
associ at i on with this social identity. Li ke the
deni ers/ di st ancers t hey had t o come to t erms in
some way with this new label.
Some of the respondent s in this gr oup " Fel t sort
of st range to be t ol d I was ast hmat i c because you
t hi nk you are sort of decrepi t i f you' r e ast hmat i c.
And I di dn' t like using t he i nhal er " (man, aged 45,
busi nessman, Int. No. 23). Ot hers who had b: en
suffering sympt oms for some time expressed relief
" At least I knew what was wrong with me t hen"
but also had t o come t o t erms with t he fact t hat " I t
wasn' t goi ng t o go away. Was n' t anyt hi ng teml:,or-
ar y" (woman, aged 32, shop worker, Int. No. 10).
None had consi dered themselves ill when they pre-
sented t o the doct or and t hei r vari ous social i deat i -
ties, lifestyles and occupat i ons rendered t hem no
mor e open to the accept ance of t he i dent i t y of
"ast hmat i c" t han di d t hose of the deni ers/ di st an-
cers.
Each respondent , when asked how they had felt
upon being t ol d t hat t hey had ast hma, said t hat
t hey had received t hei r di agnosi s as " bad news"
and t here is no suggestion t hat t hey had simply and
easily assi mi l at ed the social i dent i t y of "ast hmat i c"
i nt o t hei r sense of selves.
Al l respondent s in this group, either spon-
t aneousl y or respondi ng to direct questioning, .,;aid
t hat ast hma di d have an effect on t hei r lives but
t hei r descri pt i ons di d not differ from the
"i nconveni ences" caused by t he " bad chest s" of the
deni ers/ di st ancers. However, t hey cl ai med t hat they
di d not let ast hma st op t hem "doi ng anyt hi ng" as
t hey kept t hei r condi t i on under cont rol ; par t l y by
t aki ng t hei r prescri bed medi cat i on "pr oper l y" but
also, and mor e i mpor t ant , by being the "sor t of
peopl e t hey were". Quot es such as "When you live
with it (ast hma) i t ' s j ust par t of your life. You j ust
t ake it for gr ant ed" (woman, aged 58, canteen
supervisor, Int. No. 29) or " My ast hma is j ust a
tiny par t of my life. I t ' s j ust t here" (man, aged 45,
businessman, Int. No. 23) were commonpl ace.
Each respondent offered comment s such as, " I ' m
not the ki nd who makes a big deal of things. I find
out the best way to cope and get on with i t "
(woman, aged 48, shop worker, Int. No. 27) or
" I ' m not the sort to pani c when I get breat hi ng dif-
ficulties" (man, aged 22, university st udent , Int. No.
26). "Ot her " ast hmat i cs who di d not cope well were
cast i gat ed for " not using t hei r inhalers pr oper l y"
(all respondent s in this group), "Pani cki ng and
maki ng t hei r breat hi ng probl ems worse" (woman,
aged 38, housewife, Int. No. 22), "Pl ayi ng on it
[their asthma] so t hat they seemed ill" (woman,
aged 55, housewife, Int. No. 25) and for not using
the right medi cat i on. Such errors on the behal f of
ot her ast hmat i cs were correct ed i f spot t ed. For
example, one woman with a zeal charact eri st i c of
this group, had act ed as a "whi pper - i n" and suc-
ceeded in getting bot h her ast hmat i c husband and
her workmat e, who were current l y onl y t aki ng relie-
vers, to obt ai n prophyl act i c medi cat i on.
They were as equal l y concerned as the deniers/
di st ancers to lead as nor mal a life as possible and
expressed al most evangelical opi ni ons t hat if only
ot her ast hmat i cs cont rol l ed and coped in the ways
they themselves did, ast hma need present little pr o-
blem to anyone. The difference was t hat copi ng
strategies of this group involved adheri ng to their
medical regimen rat her t han avoi dance and denial.
They const ant l y rei nforced their sense of self-esteem
by defining themselves agai nst "ot her " ast hmat i cs
who di d not cope well.
The strategies in evidence in the normal i si ng pr o-
cess put into effect by this group were qui t e differ-
ent from t hose of the deniers/distancers. These
differences cannot be at t r i but ed to the fact they are
a "di scr edi t ed" group (and therefore have little
choice in disclosure) for, like the deni ers/ di st ancers,
these respondent s fell i nt o a "di scr edi t abl e" cat -
egory who coul d conceal their ast hma. There was,
however, no trace of conceal ment or deni al but
r at her a re-i nt erpret at i on of what it meant to be an
"ast hmat i c". A redefinition of the social i dent i t y
and t hus the meaning of being ast hmat i c was
indeed essential to this group since accept ance of
t hei r own pre-di agnosi s views of ast hmat i cs as
"weak" or "decr epi t " woul d have had probl emat i c
repercussions for t hei r self-concepts.
The accepters then, pract i sed an open st rat egy of
full disclosure. "Ever yone knew t hat they had
ast hma". To conceal woul d be to cont i nual l y hide
what had been accepted as an integral par t of them-
selves. For example, " I t ' s par t and parcel of me"
196 Stephanie Adams et al.
(woman, aged 32, shop worker, Int. No. 10), or
"They just know. They know me so they know I
have asthma" (woman, aged 38, housewife, Int. No.
22). All claimed that taking their reliever inhaler in
public/social places was unprobtematic regardless of
who was present. Any suspicions or experiences of
a negative reaction from others were attributed to
the ignorance of those concerned. These were
people who "didn' t know anything about asthma"
and who "should know better with so many people
having it due to the environment" etc. The point
was to demonstrate to themselves and to others
that despite having the social identity or label of
"asthmatic" they were in no way socially, person-
ally, or indeed (in any meaningful sense) physically,
impaired. In turn, this strategy of self-presentation
and disclosure was found to be integrally related to
the ways they had constructed their asthma and its
relation to their medication.
Respondents' notions of asthma and medication.
In their accounts of their reactions to the initial
diagnosis the respondents in this group reported
that they had held the view that the generalised per-
sonality traits that characterised an "asthmatic"
were negative. They too had viewed the self-image
available to asthmatics as "people who cough and
gasp all the time", "delicate people", "decrepit
people", "weak" or "disabled almost". The accep-
tors, however, had undertaken a post-diagnosis re-
interpretation of what it meant to be an asthmatic.
They drew upon the positive images and models
available for asthmatics who "coped" and over-
came--particularly the excellent athletes who were
now known to be suffering from asthma. It was a
point of pride with this group that they were not
the stereotypical asthmatic and were not so per-
ceived by others. For example, "I know that some
people have funny ideas about asthma. Think
you' re weak ..... disabled almost. Mind, I never have
that sort of attitude from people. I think it depends
on what sort of person you are. I don' t act ill or
weak or anything so people don' t think of me that
way. I work all hours and keep the house going"
(woman, aged 32, shop worker, Int. No. 10).
In the clinical sense the interpretations and mean-
ings placed upon asthma and its medication were
far more in keeping with a medical assessment of
their condition than those who denied they had
asthma. Each respondent was asked what asthma
actually was and their explanations can be general-
ized into, "It' s a chronic breathing condition caused
by an irritation of the tubes". None, however, con-
sidered that they were ill with asthma and thought
that asthma itself was not an illness "if it was
coped with properly".
Both groups had redefined asthma as a
"condition" or an "ailment" but such terms carried
different meanings between the two groups. The
deniers/distancers perceived asthma as an acute,
intermittent, condition (such as a bad knee). The
accepters' re-interpretations, in contrast, showed
both the importance of "control" and their accep-
tance of the chronic nature of asthma. For example,
"Asthma isn' t an illness. It' s a condition, although
people can be ill with asthma if it's uncontrolled. If
it's controlled it becomes a condition that need not
affect one' s life greatly" (woman, aged 58, canteen
supervisor, Int. No. 29), or "I think it's an ailment.
An illness just goes after a certain time. Or it kills
you of course. A condition like asthma ..... well it's
just always there" (man, aged 45, businessman, Int.
No. 23).
Respondents' notions of reliever medication. As
with the deniers/distancers all agreed that their
reliever medication was very effective and that its
function was to "open or clear" the tubes. They
were aware, however, that using reliever medication
was to merely treat the symptoms not the asthma
itself. Asthma "attacks" were "Just acute episodes
of an on-going condition". When asked where they
kept their inhalers all said that they carried a relie-
ver inhaler with them everywhere and no differen-
tiation was made between taking medication via
pills or inhalers as "both contain medicine. There's
no difference".
Respondents' notions of prophylactic medication.
The accepters were clear in their understanding of
prophylactic medication, "It suppresses the inflam-
mation. But it only works if you take it on a regu-
lar basis. It has a delayed affect, it doesn' t work
instantly" (woman, aged 58, canteen supervisor,
Int. No. 29) or "It helps stop breathing difficulties
happening. But if you' re in trouble then it's the
reliever you need" (woman, aged 55, housewife, Int.
No. 25).
The taking of prophylactic medication had been
routinised into these respondents' lives. It was as
routine "as putting one's watch on in the morning".
All disliked being dependent on, and taking, daily
medication but they accepted their dependency as
"part and parcel" of their medical condition which,
in turn, was part of themselves. Having assimilated
the social identity of "asthmatic" as part of their
personal identities the meaning of taking daily, rou-
tine medication was different from that of the
deniers/distancers. It was an accepted and expected
consequence of having an on-going medical con-
dition or chronic illness identity.
Each respondent when asked if they knew what
their prophylactic medication contained, expressed
their awareness that it was steroid based and each
regretted the necessity to take steroids and were
aware of the possibility of side effects. They had
weighed the costs against the benefits, however, and
concluded, as one respondent expressed it in charac-
teristic, matter-of-fact terms, "I don' t like taking
steroids...but here. I need them to breathe properly,
so what can you do?" (woman, aged 48, shop
worker, Int. No. 27). These respondents were
Medication, chronic illness and asthma 197
equal l y as aware as the deniers and di st ancers of
the negative i mage of steroids. They deal t with this
by defining themselves agai nst t he sort of peopl e
( "boys who want t o bui l d themselves up") who are
commonl y t hought to t ake steroids. Thei r use of
st eroi ds was legitimised by t he fact t hey were pre-
scribed for t hem and was, in any case, essential to
t hei r pol i cy of mai nt ai ni ng maxi mum cont r ol over
t hei r ast hma.
The use these respondent s made of t hei r medi-
cat i on does not necessarily i ndi cat e a different at t i -
t ude t o medi ci ne in general t han t hat of the deniers/
di st ancers or a bl i nd accept ance of "doct or ' s
orders". When asked i f t hey ever changed t hei r pat -
tern of use of medi cat i on all cl ai med to have t ri ed
"cut t i ng down" on t hei r pr ophyl act i c medi cat i on,
but this had resulted in t hei r t aki ng great er
amount s of reliever medi cat i on. As each respond,~nt
cl ai med t o use as little medi cat i on as possible, this
had resulted in t hei r ret urn t o t hei r prescri bed regi-
men. There was evidence, therefore, t hat intervie-
wees eval uat ed the t herapeut i c efficacy of drugs
agai nst the achi evement of specific outcomes.
The r espondent s' adherence to the prescri bed
regimen di d not arise from a great er reliance on the
doct or since it was a poi nt of pr i de t hat they con-
t rol l ed t hei r ast hma themselves. There were m~my
quot es to i l l ust rat e this independence. For example,
"I don' t need the doct or as long as the medi cat i on
is worki ng. I ' d let him know i f there was a probl em.
I j ust get repeat prescri pt i ons" (woman, aged 32,
shop worker, Int. No. 10) or, from anot her respon-
dent , " I ' m keeping it under cont rol . I rarel y go to
t he doct ors. I j ust get r epeat prescriptions, q?he
doct or prescribes, but the doct or doesn' t do much
else. Af t er the l ast at t ack I went and t ol d him
about it and I t ol d hi m t hat I needed mor e becot i de
and he j ust agreed. He said he' d leave it up to m,~. I
showed hi m. . . my ast hma di ary, and he knew I was
in cont r ol " (man, aged 22, uni versi t y st udent , ]int.
No. 26). Al l accept ers were well aware of the avail-
abi l i t y of the ast hma clinic but onl y one at t ended.
Thus, al t hough t hei r reasons for not doi ng so were
very different from t he deni ers/ di st ancers, the re~;ult
was t he same.
To sum up, the accept ors had fully assi mi l at ed
the social i dent i t y of "ast hmat i c" as par t of them-
selves and t hei r acknowl edgement of the chrc,nic
nat ur e of t hei r condi t i on made nor mal i sat i on and
"i dent i t y wor k" mor e i mperat i ve t han for the
deni ers/ di st ancers who viewed t hei r "chest t r oubl e"
as an acute, spasmodi c condi t i on. Whi l e the l at t er
were concerned to di st ance themselves from bot h
the i dent i t y of "ast hmat i c" and the associ at ed role
appr opr i at e behavi our, the accepters, al t hough
accept i ng the i dent i t y and medi cat i on behavi our,
were equal l y as det ermi ned t o di st ance themselves
from the st ereot ypi cal charact eri st i cs associ at ed
wi t h t hei r condi t i on. Dr awi ng on the positive role
model s avai l abl e t hey had const ruct ed t hei r ast1~Lma
as a condi t i on t hat coul d be cont rol l ed and largely
overcome. Whi l e t hey had devel oped effective ways
of conveyi ng a meani ngful det achment in their per-
formance of the at t r i but ed role in or der to normal -
ise t hei r physical condi t i ons and their lives they also
fully accepted the social i dent i t y of "ast hmat i c" and
exhi bi t ed no signs of i dent i t y confusion. Thei r
assi mi l at i on of this at t r i but ed i dent i t y involved
equally as much "i dent i t y wor k" (albeit of a differ-
ent charact er) as di d the deni ers/ di st ancers' efforts
at deni al and concealment. In cont r ast the accept ors
di d not strive to mai nt ai n t hei r pre-di agnosi s iden-
t i t y but rat her to adapt the social i dent i t y of
"ast hmat i c" in ways t hat di d not cont r adi ct their
ot her social identities or their sense of self.
Thei r st rat egy of sel f-present at i on and disclosure
was open and cent red ar ound maki ng it very close
to the relevant audi ence t hat they were not the
st ereot ypi cal ast hmat i c. In this way the i dent i t y of
"ast hmat i c", while not a positive addi t i on to their
self-concepts, was not entirely negative. I f their
behavi our and sel f-present at i on di d not fulfil the
role appr opr i at e charact eri st i cs of an "ast hmat i c"
then others, even in the knowl edge t hat the respon-
dent suffered from ast hma, woul d not affirm the as-
soci at ed negative images but rat her the abi l i t y of
the respondent to avoi d the expected characteristics.
This gr oup' s i nt er pr et at i on of ast hma was also an
i mpor t ant element in t hei r not i ons of the rel at i on
between ast hma and its medi cat i on. For the
deni ers/ di st ancers medi cat i on, part i cul arl y pr ophy-
lactic medi cat i on, was viewed as a source of stigma
and an obst acl e to normal i sat i on: for the accepters
it was an i nval uabl e ai d to normal i sat i on.
They also exhi bi t ed greater knowl edge and under-
st andi ng of bot h their ast hma and its medi cat i on.
This fact or alone, however, is not enough to explain
their part i cul ar use of medi cat i on. Taki ng daily,
regul ar and rout i ne medi cat i on had a different
meani ng for these respondents: it was a val uabl e
ai d to t hei r sel f-present at i on and an expected,
" nor mal " consequence of having an on-goi ng medi-
cal condi t i on or chronic illness. They were conse-
quently mor e receptive to knowl edge proffered to
t hem by t hei r doct or and/ or had made serious
at t empt s to obt ai n this knowl edge from ot her
sources. This group then, were j ust as subject as the
deni ers/ di st ancers to a dislike of steroids, perceived
stigma and a dislike of t aki ng dai l y medi cat i on of
any sort but, since the i dent i t y work undert aken by
this group involved assi mi l at i ng the social i dent i t y
of "ast hmat i c" in ways t hat di d not cont r adi ct their
ot her social identities or t hei r self-concepts, this had
resulted in different meanings being placed upon
these factors.
The pragmatists
The remai ni ng six respondent s vari ed in their
at t i t udes t owar ds ast hma itself and the experience
of being ast hmat i c and di d not fall neat l y i nt o the
198 Stephanie Adams e t a l .
pol ar t ypol ogy so far developed. Such vari at i ons
also were reflected in the way t hey used their pre-
scribed medi cat i on. Al l six were closer to the accep-
ters t han the deni ers/ di st ancers since they report ed
t aki ng prophyl act i c medi cat i on (t hough not necess-
ari l y in the medi cal l y appr oved way) and all
accepted t hat they di d have ast hma. However, t hei r
not i ons of ast hma, and consequently, appr opr i at e
medi cat i on use, were somewhat idiosyncratic.
Unl i ke the accept ors there were no comment s such
as "ast hma is j ust par t of me".
For example, two pat i ent s i nt erpret ed their
ast hma as "pr oper ast hma" but of the "acut e rat her
t han the chronic t ype". Bot h claimed t hat they
woul d have no obj ect i on to t aki ng dai l y steroid
medi cat i on but t hat it was "not necessary with their
t ype of ast hma". The first respondent (man, aged
32, manual worker, Int. No. 28) had t aken pr ophy-
lactic medi cat i on when first di agnosed but was
under the i mpressi on t hat it was an ant i bi ot i c
course t hat you t ook upon diagnosis. He t ook relie-
ver medi cat i on onl y when in extreme difficulties to
"cl ear the t ubes". The second (man, aged 35, pr o-
fessional, Int. No. 2) report ed t aki ng prophyl act i c
medi cat i on onl y when act ual l y "i n t r oubl e" and
t ook his reliever for days aft er the t roubl e to make
sure "i t was gone until next t i me". Fr om a clinical
poi nt of view the former was t aki ng sub-opt i mal
amount s of bot h types of medi cat i on, whilst the l at -
t er was t aki ng high amount s of reliever and sub-op-
t i mal amount s of prophyl act i c medi cat i on.
All, to varyi ng degrees, were at t empt i ng to come
to terms with the social i dent i t y of "ast hmat i c" and
to reconcile this i dent i t y with t hei r ot her social
identities and their self-image. This i dent i t y-con-
fusion was reflected bot h in the ways they inter-
pret ed their ast hma and in their sel f-present at i on to
others. In cont rast to the secrecy of the closet-inha-
lers and the al most evangelical fervour of the accep-
t ors they adopt ed a more pr agmat i c approach.
For example, bot h respondent s referred to above
pract i sed a strategic policy of disclosure. The man-
ual wor ker (Int. No. 28) disclosed to family, neigh-
bours and friends out si de work but di d not disclose
within his worki ng envi ronment for fear of his con-
di t i on becomi ng known to management and endan-
gering his empl oyment . As he expressed it, "You
have to be careful who you tell. I don' t mi nd cer-
tain mat es knowi ng but not those who might tell
peopl e I wor k with. Mi nd, I was surprised. . . I was
out with a friend of mi nd. . . and he got out his
pump. He had asthma! I hadn' t known...we work
in the same pl ace but we hadn' t t ol d each other. . . I
was shocked. I t ol d him then. I woul dn' t have
mi nded him knowing i f I ' d known he had it.
Because I explained what type I' ve got. The t ype
t hat j ust bot hers you somet i mes. . . . Mi nd, I woul dn' t
t ake the i nhal er in front of management . . . . I f he sees
I' ve got a bad chest....he doesn' t know I ' m asth-
matic, and he mi ght say, ' No way can I have you
worki ng here, you are a risk to me . ' "
The professi onal man (Int. No. 2) felt t hat his
status and abi l i t y in wor k rendered his ast hma of
little i mport ance and was open to colleagues about
his condi t i on and his use of inhalers in work,
"They all know my capabi l i t i es in work. And
ast hma doesn' t affect those. I ' m in a very respon-
sible posi t i on. . . I' ve had a few pr omot i ons. . . and they
knew I had ast hma. I t ' s i rrel evant " (Int. No. 2). He
had not, however, successfully negot i at ed the iden-
tity of "ast hmat i c" with his ot her social identities
such as school governor and member of the local
gol f club etc. and di d not disclose to peopl e out si de
work. For example, " No I don' t say. I don' t t hi nk
t hat ' s the way they see me. I ' m always on the go. . . a
' doer ' ". There was evidence of some conflict here
since he had i nt erpret ed his ot her social roles (with
the exception of his occupat i onal role) in ways t hat
made it pr obl emat i c for him to reconcile and nego-
t i at e the social i dent i t y of "ast hmat i c" with his
ot her social identities. This, in turn, had impli-
cat i ons for his self-image or personal identity.
Cont ext ual l y rel at ed strategies of disclosure (in
the occupat i onal worl d for the first respondent and
the social worl d for the second) were clear in vary-
ing ways for all six respondents, but the si t uat i on
cannot be reduced to social class (defined by occu-
pat i on) differences. Anot her professi onal intervie-
wee woul d not disclose or t ake his inhalers openl y
in wor k for fear t hat this "woul d undermi ne [his]
manageri al aut hor i t y" yet disclosed to those in his
social life (man, aged 43, professional, Int. No. 4).
Similarly, anot her respondent who was a manual
wor ker had disclosed onl y to management as he
had needed time off to see his doct or and woul d
not disclose to his workmat es for fear of being
t hought " a wi mp" (man, aged 28, manual worker,
Int. No. 6).
It is these respondent s, more t han any other, t hat
demonst r at e t hat one of the issues of adopt i ng and
identifying with a social i dent i t y such as
"ast hmat i c" is t hat their "r ol e- ot her s", t hat is, their
relevant audiences, present ast hmat i cs with a com-
plex set of choices. So far we have described con-
sistent r esponses- - deni al or accept ance- - but the
respondent s here were charact eri sed by pragmat i sm
and t hei r self-presentation and disclosure shifted
accordi ng to the relevant audience.
The argument advanced here is t hat while these
six i ndi vi dual s do not fall neat l y in to the t ypol ogy
devel oped so far the themes of normal i sat i on, self-
present at i on/ di scl osure, percept i ons of ast hma,
medi cat i on use and their i nt er-rel at i onshi p were
equally relevant for them. Thei r account s and
report ed behavi our can be i nt erpret ed as reflections
of the identity conflict and confusi on t hat arose as
they tried to reconcile the social i dent i t y of "ast hma
sufferer" with their image of themselves. What is
less clear is whether these pragmat i st s, with their
Medication, chronic illness and asthma
199
selective pol i cy of disclosure, will event ual l y become
ful l -bl own accept ers or whet her this represent s a
relatively stable accommodat i on t o t hei r si t uat i ons.
Gi ven the cross-sect i onal nat ur e of our dat a we are
unabl e to answer t hat quest i on which woul d need a
l ongi t udi nal appr oach to the career of t he newly-
di agnosed ast hmat i c.
DI SCUSSI ON
We have demonst r at ed t hat respondent s' at t i -
t udes to medi cat i on and medi cat i on pract i ce are
i nt i mat el y l i nked to t hei r beliefs about their con-
di t i on and copi ng strategies which, in turn, are as-
soci at ed with the extent of t hei r accept ance and
rejection of the i dent i t y of "ast hmat i c". We suggest,
therefore, t hat t he concept of i dent i t y is conse-
quent l y t he most appr opr i at e f r amewor k to anal yse
the respondent s' experiences of being asthn~.atic
and, in par t i cul ar , to under st and why peopl e do or
do not accept t he l abel in the first place.
We event ual l y chose the concept of i dent i t y
r at her t han "st i gma" to frame our hypot hesi s
because we came to the concl usi on t hat al t hough
"fel t st i gma" was clearly a maj or issue for all the
respondent s the f r amewor k was less t han adeqaat e
for our findings. As Anspach (1979) poi nt s out , the-
ories of stigma cont ai n the ever-present theme of
passi vi t y and i mposed identity. The strategies of the
st i gmat i zed person ul t i mat el y subscribe t o the defi-
nitions of nor mal and "t hus he or she derives his/
her i dent i t y reactively in response t o the i mput a-
tions of the wi der society. (S)he is fat ed to reraain
at the mercy of t he Invisible Hand of the
General i sed Ot her " (Anspach, 1979, p. 768). Our
respondent s are active and creative st rat egi st s
whet her t ot al l y rejecting the perceived opi ni ons of
ot hers (deniers/distancers) or re-i nt erpret i ng the
label in ways t hat enabl ed t hem to retain a positive
sense of self and successfully reconcile "bei ng asth-
mat i c" with t hei r self-concept and lifestyles.
The dat a provi ded empi ri cal i l l ust rat i ons of ,;ym-
bol i c i nt eract i oni st theories such as Tur ner (1988)
which emphasi se the i mpor t ance of the i ndi vi daal ' s
self-concept to the way peopl e view and adopt at t i -
t udes t owar ds new social identities such as t hat of
"ast hmat i c". Traci ng back the sources of such the-
ories led us t o Mead' s analysis of the self, specifi-
cal l y his dialectic between the ' T ' , or what we t erm
"per sonal i dent i t y" or "sel f", and the "me", or
what we refer t o as "soci al i dent i t y".
The " me" operat es in the social cont exl , in
exchanges associ at ed with ot her peopl e, group
membershi ps, status and role s, and is a social con-
struction. It is the self as seen by significant others.
"The ' me' is the organi sed set of at t i t udes of
ot her s" (Mead, 1934, p. 26), which the self has t o
t ake on. " Me " is also the i ndi vi dual self-image in
social si t uat i ons, the way in which t he i ndi vi dual
eval uat es behavi our and symbol s from the view-
poi nt of t he generalised ot her and gauges ot hers'
assessment of his/her own symbol s t hr ough the
"l ooki ng glass" react i ons of others, as revealed in
the ot hers' gestures. The i ndi vi dual ' s self-image, his
or her assessment of t he cont i nui t y of t hei r self-con-
cept i on, may be either reaffirmed or pl aced in
doubt by such i nt eract i on.
It was with t he recogni t i on of this di al ect i cal re-
l at i onshi p t hat we adopt ed, for anal yt i cal purposes,
the concept of "per sonal i dent i t y" as synonymous
with self and concept ual i sed "soci al i dent i t y" as the
sum of an i ndi vi dual ' s gr oup membershi ps, inter-
personal relationships, social posi t i ons and statuses.
An i ndi vi dual ' s self or personal i dent i t y is t hus a
socially det ermi ned hi st ori cal pr oduct of social
i nt eract i on, but each ast hmat i c will const ruct t hei r
illness and adopt , i nt erpret and negot i at e t hei r new
social i dent i t y with his/her self-conceptions and pre-
existing social identities in slightly different ways.
Chroni c illness as a t hreat to self and i dent i t y is a
pr omi nent theme in the l i t erat ure and there have
been previ ous (see Conr ad, 1987) at t empt s to
under st and the experiences of the chroni cal l y ill
within a t heoret i cal f r amewor k of "i dent i t y" (for
example, Anspach, 1979; Bury, 1982; Schneider and
Conr ad, 1981; Conr ad, 1985; Charmaz, 1983;
Charmaz, 1987). Whi l e agreeing with Char maz' s
(1987) suggestion t hat chroni c illness may indeed
bri ng about a "di mi ni shed self", it is our cont ent i on
t hat this will onl y occur in our respondent s i f an in-
di vi dual cannot reconcile the social i dent i t y of
"ast hmat i c" (this par t i cul ar "me") with their ot her
social identities which, in turn, are i rrevocabl y
i nt er-connect ed with t hei r personal identities or
sense of self.
It is furt her hypot hesi zed t hat when the com-
ponent s which make up an i ndi vi dual ' s social i den-
t i t y are in cont r adi ct i on or conflict, he/she will
at t empt to reconcile at t ri but ed social statuses bot h
with each other, and with his/her personal identity.
Fai l ure to achieve such a reconci l i at i on is seen as
resulting in an unsat i sfact ory or "di mi ni shed" sense
of self. Whi l e accepting t hat chroni c illness necess-
ari l y diminishes an i ndi vi dual ' s physi cal capacities
and changes an i ndi vi dual ' s i dent i t y by i nt roduci ng
a new element we suggest t hat this does not necess-
ari l y result in a di mi ni shed "self". There were no in-
di cat i ons of this amongst the respondent s who had
successfully reconciled the social identity of
"ast hmat i c" with bot h t hei r ot her social identities
and with t hei r personal identities. For these respon-
dent s being an ast hmat i c was, as they explained,
"j ust a par t of me".
It was rat her the respondent s who had often not
even at t empt ed such a reconci l i at i on who were
experiencing damage t o the self t hr ough t hei r efforts
at conceal ment and denial. For these respondent s
the si t uat i on was not qui t e as Scambl er and
Hopki ns (1986, p. 34) woul d have it, of "living with
a conceal ed or spoiled i dent i t y" as the i dent i t y of
SSM 45/2 B
200 Stephanie Adams et al.
" a s t h ma t i c " was vi ewed as a n unne c e s s a r y a n d
i mpos ed l abel t h a t t hey r ef used t o accept . The i ssue
was r a t he r t he ef f or t r equi r ed t o conceal a nd
r e pudi a t e wha t was per cei ved as a n u n wa r r a n t e d
soci al i dent i t y f or ced u p o n t h e m by ot her s ( t he
medi cal pr of es s i on) si nce a c c e pt a nc e ent ai l ed pr o-
bl ems wi t h t hei r ot he r soci al i dent i t i es a n d woul d
r esul t i n " s poi l t " pe r s ona l i dent i t i es. I de nt i t y ma t -
t er s wer e cl ear l y vi t al t o gai ni ng a n u n d e r s t a n d i n g
of t he ways i n whi ch t he r e s p o n d e n t s i nt er pr et ed,
c a me t o t er ms wi t h, a nd exper i enced be i ng as t h-
mat i c.
Acknowledgements--Our t hanks are due to the Nat i onal
Ast hma Campaign for funding this project and the interest
shown throughout; to our colleagues in the Depart ment of
General Practice for their helpful comments and above all
to the patients themselves who so generously gave their
time to talk. The interpretation of their comments and the
views expressed here are the sole responsibility of the
authors. We would also like to t hank the anonymous
referees who reviewed an earlier draft of this paper for
their constructive comments.
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