Sociology of Health & Illness Vol. 36 No. 7 2014 ISSN 0141-9889, pp.

1020–1036
doi: 10.1111/1467-9566.12148

Stigma, deviance and morality in young adults’

accounts of inflammatory bowel disease
Benjamin Saunders
Department of Sociology, University of York

Abstract For young adults with inflammatory bowel disease (IBD), perceived stigma has
been found to be a salient concern. Drawing on interviews with individuals with
IBD aged 18–29 (n = 16), this article uses rhetorical discourse analysis to explore
how stigma is discursively constructed by young adults, with a focus on the moral
underpinnings of the participants’ talk. Their representations showed both felt
stigma and enacted stigma; principally related to the perceived taboo surrounding
the symptoms of their condition, which often led to the non-disclosure or
concealment of the condition. The different ways in which stigma is manifested in
the accounts present a challenge to recent arguments questioning the relevance of
this concept in chronic illness research, though it was found that it is not adequate
to look at stigma alone and, given the unstable nature of IBD, negotiating stigma
in relation to possible charges of deviance is a pertinent issue for these young
adults. For instance, non-disclosure because of shame could result in individuals
experiencing blame. Accounts were constructed through a range of discursive
strategies, allowing the participants to present themselves in morally appropriate
ways throughout. Suggestions are made about future directions in addressing
stigma and deviance in relation to this cohort.

Keywords: stigma, deviance, inflammatory bowel disease (IBD), young adults, rhetorical
discourse analysis

Introduction

Young adults are often overlooked in research into experiences of chronic illness, even in the
case of a condition which is especially prevalent in this age group: inflammatory bowel disease
(IBD). IBD is an umbrella term for a group of inflammatory conditions of the colon and small
intestine, of which the major types are Crohn’s disease and ulcerative colitis (UC). According
to the National Association for Colitis and Crohn’s disease (NACC 2012), in combination
these conditions affect one in 250 people in the UK, who are most commonly diagnosed
between the ages of 15–25 (Johnston and Logan 2008). Both conditions present similar symp-
toms including abdominal pain, vomiting, diarrhoea and weight loss, and are usually character-
ised by intermittent periods of disease flare-up and remission, being treated with various forms
of medication, which themselves can have significant side-effects.
Living with IBD may be all the more challenging in young adulthood, a period often
involving significant life transitions. Many young adults will be just beginning their lives away
from their homes and families, perhaps starting college or university or embarking upon
© 2014 The Author. Sociology of Health & Illness © 2014 Foundation for the Sociology of Health & Illness/John Wiley & Sons Ltd.
Published by John Wiley & Sons Ltd., 9600 Garsington Road, Oxford OX4 2DQ, UK and 350 Main Street, Maiden, MA 02148, USA
 Stigma and morality in young adults’ accounts of IBD 1021

fulltime careers. Several scholars have characterised young adulthood as being a distinct life
stage, during which ‘individuals leave behind so-called youthful freedom and begin to take
responsibility for different aspects of their lives’ (Raymore, Barber and Eccles 2001: 198).
While views vary on where this life stage begins and ends (though the late teens until the late
twenties is commonly where these lines are drawn), most recognise the move into young
adulthood to be a ‘decisive turning point in developing self-identity’ (Blos 1962: 192). It is
against this backdrop of substantial change that IBD can have psychosocial effects on young
adults that are ‘dissimilar from as well as more profound than those on older individuals’ (Bry-
dolf and Segesten 1996: 39).
This has been found to be especially the case in young adults’ perceived stigma, in the form
of their embarrassment over the symptoms of their condition and their fears about others react-
ing negatively to their IBD (Daniel 2001); concerns that are not likely to be helped by their
developing, and therefore perhaps unstable sense of self-identity, as well as the importance that
young adults have been found to give to bodily appearance and physical attractiveness (Balfe
2009), all of which IBD has the potential to undermine.
In the present study I investigate young adults’ representations of IBD-related stigma, both
in terms of their own perceptions and how they construct the views of others who do not have
the condition, exploring how this influences their (lack of) disclosure of information on their
illness. Moving beyond the descriptive approaches previously adopted in looking at IBD expe-
rience (see, for instance, Brydolf and Segesten 1996), discourse analysis (DA) is used to
explore how IBD-related stigma is constructed over lengthy stretches of talk; showing how the
participants commonly keep in mind issues of social accountability and perceived moral appro-
priateness (Radley and Billig 1996). While some recent arguments have questioned the rele-
vance of stigma in contemporary society (Green 2009, Thomas 2007), through this analysis I
will make a case for the continuing significance of the concept in relation to the experiences
of this particular group. Significantly, though, the analysis will differentiate stigma, invoking
‘shame’, from deviance, indicating ‘blame’, a distinction first made by Scambler and Hopkins
(1986), but one which has so far not been used in looking at IBD experience. Negotiating
stigma in relation to possible charges of deviance will be shown to be an especially pertinent
issue for these young adults, particularly in relation to managing disclosure in situations where
their IBD becomes outwardly perceptible to others.

Chronic illness, stigma and deviance

Goffman’s (1963) classic work still resonates strongly in the study of chronic illness-related
stigma. His well-rehearsed definition of stigma – as ‘an attribute that is deeply discrediting’
(1963: 13), and that arises from an ‘undesired differentness’ (1963: 14) – sees stigmas divided
into two different types: those where ‘the stigmatized individual assumes his or her difference
is known about already or is evident on the spot’ (1963: 14), and where the individual is thus
‘discredited’; and those where ‘the stigmatized individual assumes it is neither known about
by those present nor immediately perceivable by them’ (1963: 14), in which case the individ-
ual is ‘discreditable’; a distinction that will be shown to have strong relevance to the young
adults’ representations in the present study.
A key development in the post-Goffman work on stigma, which is central to the analytic
framework adopted here, is Scambler and Hopkins’ (1986) hidden distress model, developed
in relation to people with epilepsy. At the heart of this model is the unpacking of stigma
through the dual concepts of enacted stigma and felt stigma. The former refers to ‘instances of
discrimination … on the grounds of perceived unacceptability or inferiority’ (1986: 33) and
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1022 Benjamin Saunders

the latter, a ‘fear of enacted stigma, but also encompasses a feeling of shame’ (1986: 33).
Scambler and Hopkins also make an important distinction between the terms stigma and
deviance, often used synonymously in research literature. While both stand in opposition to
perceived normalcy, to Scambler and Hopkins stigma denotes an ontological deficit, whereas
deviance refers to a moral deficit (1986: 33), drawing attention to how certain conditions can
be associated with culpability, such as HIV/AIDS.
In recent years many scholars have moved away from the focus on individual experiences
of illness towards a macro-investigation of chronic illness-related stigma, exploring its con-
struction at the societal level. Disability theorists initially led the way on this, arguing that
rather than focusing on the difficulties faced by individuals with long-term conditions and dis-
abilities (the so called personal tragedy approach) we should in fact be turning our attention to
what they argue is the failure of society to properly accommodate people with long-term con-
ditions (see Thomas 2007). Sayce (1998) proposes that this shift in focus means approaching
these issues in terms of discrimination, defined as unfair treatment, rather than concentrating
on the shame that is associated with stigma.
Following the disability theorists, the focus on social structure in the study of stigma has
also been taken up by medical sociologists. Green (2009) questions the relevance of stigma in
relation to chronic illness in a contemporary society in which there is ‘an increasing diversifi-
cation of roles and identities’, which means ‘all of us (or none) are “available” to be stigma-
tized’ (2009: 112), while several scholars have strongly emphasised issues of power,
discrimination and social exclusion as essential components of stigmatisation (for example,
Link and Phelan 2001). Scambler (2004) extends the stigma/deviance distinction that Scambler
and Hopkins (1986) proposed as part of the hidden distress model onto a societal level, argu-
ing that, through broader issues of class and structure, chronic conditions can, at times, be
recontextualised; no longer being portrayed only as shameful, but now with blame attached,
thus constituting deviance. The example Scambler gives is of Britain’s welfare-to-work pro-
gramme in the 1990s, which, he argues, led to an implicit moral obligation on people with
chronic conditions to return to employment. Mirroring Scambler and Hopkins’ (1986) unpack-
ing of stigma through the concepts of felt and enacted stigma, Scambler proposes the dual
concepts of enacted deviance (discrimination by others on the grounds of immoral behaviour)
and felt deviance (an internalised sense of blame and an immobilising anticipation of ‘enacted
deviance’).
The concepts of felt deviance and enacted deviance (Scambler 2004), will, in the present
study be applied in a micro-analytic context. However, the term deviance will be used in a
slightly different way from that of Scambler’s (2004). While Scambler talks of chronic condi-
tions being recast in terms of blameworthiness – blame either being attached to individuals for
getting the condition, or to their actions in managing it – I consider how, at times when IBD
becomes outwardly perceptible, the signs and symptoms of the condition may be judged devi-
ant because others are unaware that they are associated with a chronic condition, leading the
individual to be considered morally culpable for such behaviour.

Representations of stigma in experiences of IBD

Research into experiences of IBD, including the few studies focusing on young adults, has
generally carried out an analysis of individual experiences using interview data. While stigma
is not the main focus, all this research shows commonality in observing that IBD is represented
as having a significant degree of stigma associated with it. Thus Kelly (1992), drawing on 50
interviews with people with UC, proposes that the implications surrounding the condition are
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 Stigma and morality in young adults’ accounts of IBD 1023

so severe that they ‘go beyond mere social disgrace’ (1992: 12), with embarrassment over the
symptoms of the condition leading individuals to ‘keep concealed the nature of their illness’ in
most social contexts (1992: 52). Focusing specifically on adolescents and young adults with
UC (n = 28), Brydolf and Segesten (1996) observe that the participants reported feeling
embarrassed not only about their symptoms but also about the changes in their bodily appear-
ance resulting from the disease and its treatment, such as acne and disproportionate weight
gain, leading them to feel ‘a stranger to oneself and different from others’ (1996: 45). For
several, this feeling of differentness was enhanced by the stigmatising behaviour of others,
with symptoms such as incontinence resulting in their ‘being teased by peers and also occa-
sionally by adults’ (1996: 44). Embarrassment borne out of the changes to their physical
appearance was similarly observed by Daniel (2001) in a sample of five 18–25 year-olds. The
participants reported feeling ‘damaged and physically diminished’, as well as ‘fear, embarrass-
ment and humiliation’ (2001: 86) as a result of bowel urgency and incontinence, again making
them feel different from non-IBD others.
These three studies all show the participants projecting a degree of felt stigma about the
nature of their IBD symptoms, commonly leading to the concealment of the condition; with
some explicit instances of enacted stigma also being observed. All three studies largely focus
only on the content of the participants’ talk by examining short, de-contextualised data extracts.
The DA approach adopted in the present analysis extends these findings through exploring the
ways in which representations of stigma – both felt and enacted – are constructed in ongoing
talk, through a range of discursive strategies (see section below on analytic framework).

Methodology

The data for this study come from a larger project investigating the discursive construction of
young adults’ experiences of chronic illness. In total, 30 one-on-one semi-structured interviews
were carried out with participants who had either type 1 diabetes or IBD, between the ages of
18–29. While views vary on the age range that characterises young adulthood, this range
shows consistency with the small body of literature on young adults and chronic illness (for
example, Balfe 2009, Daniel 2001) and is broad enough to account for the full spectrum of
young adult experiences. Of these 30 participants, 16 had IBD (10 female and six male, again
all aged 18–29 years) and represented a range of occupational backgrounds, including univer-
sity student status.

Data collection
The participants were recruited as volunteers through adverts in four universities in the South
Wales and South-West England regions, an IBD clinic at a hospital in South Wales and
through the NACC. Ethical approval for the study was given by the relevant ethics committees
at these universities and hospital authorities.1 The volunteers contacted me directly via tele-
phone or e-mail for interview arrangements to be made. Most interviews were conducted at
the homes of the participants and varied significantly in length, with the shortest lasting 42
minutes and the longest, 2 hours and 46 minutes. The interview questions were designed in
order to elicit lengthy, detailed responses. Influenced by the seminal work of Mishler (1986),
who sought to ‘empower’ participants through treating them as research ‘collaborators’ (1986:
126), in this study the participants were encouraged to discuss any relevant themes in their
own subjective experience of illness. The interviews were thus considered to be ‘active’ pur-
suits. As Holstein and Gubrium (1997: 114) argue, from this perspective, the interview is ‘not
merely a neutral conduit … but is instead a site of, and occasion for, producing reportable
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1024 Benjamin Saunders

knowledge itself’ through the interaction of the interlocutors. So issues surrounding chronic
illness – and specifically those related to stigma and deviance – were jointly constructed by
the participants and myself; therefore, it was important to take into account the influence of
my questions and contributions in analysing the interview data.
All the interviews were transcribed in full (see Appendix A for the transcription conventions
used) and the transcripts were then subject to open-coding, with the aid of the software
program MAXQDA, in order to identify recurrent concepts and themes. Three macro-themes
emerged from the data: self, control and other orientation, and several micro-themes were
identified in relation to each. The theme other orientation refers to the young adults’ represen-
tations of their orientation to others and of the ways in which others orient to them in their
daily lives. The focus of the present analysis: stigma, and the associated themes of disclosure,
self-consciousness and normalcy (how the participants represent the (lack of) normalcy of their
condition in relation to others), were identified as forming part of this broader theme. Issues
relating to stigma are therefore among a range of different issues emanating from the data,
many of which are discussed elsewhere (see Saunders 2011a, 2011b). Stigma was chosen as
the focus for the present article because it is in relation to this theme in particular that the par-
ticipants appeared to express considerable concern and distress, perhaps due in part to the
incongruity between their age and having a chronic illness, meaning that the perceptions and
reactions of others become a particularly salient concern to them. These concerns arose to a
much greater extent in interviews with the 16 IBD participants than those with type 1 diabetes,
perhaps because of the particular nature of IBD and its symptoms, and it is for this reason that
I have chosen to focus on young adults with IBD.

Analytic framework
I approached the data from an interaction-based, constructionist perspective, recognising that
talk nearly always serves some kind of performative function (Riessman 1990), often to
persuade fellow interlocutors in some way. Initial readings of the data led me to notice the
considerable attention that the participants appeared to pay to presenting their actions in ways
that conform to culturally accepted models of moral appropriateness, for instance, presenting
themselves as being strong-willed in the face of illness. This emphasis on morality led me to
consider representations as accounts, defined by Radley and Billig (1996: 223) as the ‘activity
of socially representing the world’. There was thus consideration of how the participants’ talk
about illness (and health) is both ‘ideological and dilemmatic’ (1996: 221), with my analysis
attending to the moral underpinnings of the constructed representations.
The accounts were examined using a strand of DA known as rhetorical discourse analysis
(RDA), as has been applied recently in the context of genetic counselling (Arribas-Ayllon et al.
2011). This approach was seen as being appropriate in analysing the accounts because of its
particular emphasis on investigating the ‘moral, practical and rhetorical aspects of social interac-
tion’ (Arribas-Ayllon et al. 2011: 57), while also sharing the broader aims of DA – to identify
patterns and trends in linguistic representations, examined in the wide social and cultural context
in which the texts were produced (Jaworski and Coupland 1999). A micro-analysis of lengthy
stretches of discourse was carried out, leading to the identification of the particular rhetorical
strategies that commonly occurred, and these were explored in relation to their performative
functions. These strategies include ‘contrast structures’ (Smith 1978), reported speech, pronomi-
nal reference and extreme-case formulations (Pomerantz 1986). Through these strategies, the
participants at times constructed ‘excuses’, identified by Scott and Lyman (1968) as a specific
type of account that is concerned with negotiating responsibility. In constructing an excuse, one
‘admits the act in question is bad, wrong or inappropriate, but denies full responsibility’ (1968:
47), as a way of warding off potential charges of morally inappropriate behaviour.
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 Stigma and morality in young adults’ accounts of IBD 1025

Through a dialectical process of going back and forth between the literature and examining
the data, I identified the relevance to the data of several of the sociological concepts developed
in other areas of chronic illness research, most notably the felt and enacted stigma, and the felt
and enacted deviance model. A generally inductive approach was therefore adopted, with
observations of the data informing the concepts that were used in the more detailed analysis.
The analysis focused not only on how these sociological concepts can help to illuminate
aspects of the young adults’ experiences of IBD, but also how these concepts are discursively
constructed within the frame of moral appropriateness and accountability, thus complimenting
the RDA framework adopted.
While all 16 interviews were analysed (see Saunders 2011a), for reasons of space, the
focus here is on single extended data extracts from four interviews. While looking at only
four accounts may mean that there is a lack of scope to generalise to the experiences of
young adults with IBD more widely, these extracts were chosen as they reflect the discursive
patterns frequently observed in the larger dataset with regard to the sociological concepts out-
lined. In the case of other interviews, such concepts become relevant at different points, but
are not necessarily present in single stretches of talk; therefore, in the extracts presented here
it is easier to examine these patterns. It must also be acknowledged that, in the extracts cho-
sen, three of the participants are female and only one was male. This was not considered to
be significant in the present analysis, as no particular gender differences were observed
across the breadth of the data in relation to this theme; however, gender must be recognised
as an important variable, and one that could be explored in future research into IBD-related
stigma.

Analysis

The first account to be analysed is taken from an interview with Lewi2 aged 19, a recent sixth
form college graduate who had been diagnosed with Crohn’s disease 10 years previously. In
discussing a recent holiday with friends, Lewis (L) presents to me a very conflicted, problem-
ridden account of his ability to manage his IBD in relation to others.
The first half of Lewis’ account (l. 5–15) takes the form of a narrative reconstruction of a
past event presented in temporal order (Riessman 1990: 1195), which may give greater rhetori-
cal force to Lewis’ presentation of the problems his IBD caused him on holiday than if he had
discussed it in more general terms. The orientation of this narrative almost solely on the nega-
tive impact of Lewis’ condition may, however, be influenced by the loaded phrase ‘a lot of
problems’ in my initial question (1).
Lewis recounts how his IBD symptoms became outwardly perceptible to his friends:
‘I made one hell of a stink’ (6). His own evaluation of the tangible effects of these symptoms:
‘that was terrible’ (that is, the odour) (6–7); ‘it was a mess’ (the blood on the floor) (13) sug-
gests that Lewis himself considers them to be highly unpleasant, and he thus displays ‘felt
stigma’ in the form of shame over these symptoms. However, it appears that these symptoms
did not lead to the exposure of his IBD (15), and instead the reactions Lewis reports appear to
show his friends projecting blame upon him as a result of their apparent lack of understanding
that he was not in control of his actions: ‘the lads they said “right L you’re not ever gonna
use our toilet again”’ (7–8). These reactions can be conceptualised as enacted deviance over
what Lewis’ friends perceive as being unpleasant bowel habits. In Goffman’s (1963) terms,
then, Lewis’ ‘effort to conceal incapacities (his IBD) caused him to display other ones’ (1963:
104); in this case the appearance of deviance in his bowel habits.

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1026 Benjamin Saunders

Extract 1
1. BS: so did it [IBD] cause you (.) a lot of problems
2. when you were away on holiday in terms of what
3. you were able to do with your mates and stuff? (.)
4. L: um (1.0) it caused me problems (3.0) because (1.0)
5. as soon as I got through the door (.) I had to use the
6. toilet (.) and I made one hell of a stink that was
7. terrible (.) but the lads they said ‘right L you’re not
8. ever gonna use our toilet again’ (.) and the only
9. toilet was the one the next floor up (.) and we
10. didn’t know where the stairs were (.) so one day when
11. I was bursting I had to run down the corridor and I had
12. to wait about (.) three or four minutes (.) for a lift to
13. come (.) and (1.0) it was a mess when I got back (1.0)
14. because I (.) I just bled (.) it (.) it could have been
15. helped (.) if they’d just let me go but they didn’t know
16. (.) and I didn’t (.) I’ve only ever told some of my
17. friends (.) ’cause it’s hard for me to tell everyone
18. about it (.)
19. BS: oh right so you obviously went on holiday with your
20. mates but they didn’t know anything about it then?
21. L: [yeah only one of
22. them did (.) and he kept saying ‘leave him alone
23. leave him alone’ (.) but no nobody else understood

In some ways, Lewis constructs himself as the sympathetic hero of this narrative, forced to
struggle on and suffer, without any apparent protest on his behalf, as a result of the inconsider-
ateness of his friends who are represented as blunt and face-threatening (Goffman 1955), as
displayed through their direct reported speech (7–8). However, there is ambiguity in the way
this is put across, as Lewis may be seen to implicitly take some accountability for what hap-
pened by acknowledging that had he disclosed his IBD there might have been a different reso-
lution: ‘it could have been helped … but they didn’t know’ (14–15). In this hypothetical case,
Lewis’ bowel functions may have been recontextualised as symptoms of an illness rather than
blameworthy behaviour in his friends’ eyes, and perhaps he would not then have experienced
this enacted deviance. This possibility is further supported by Lewis constructing a contrast
(Smith 1978) between these uninformed friends, and the more supportive behaviour of the one
friend present who was aware of his condition, as again displayed through direct reported
speech: ‘he kept saying “leave him alone leave him alone”’ (22–3). ‘Kept’ implies that Lewis’
friends may have repeatedly mentioned the shared toilet incident; therefore, this enacted devi-
ance was not a one-off occurrence.
Lewis reportedly experienced considerable physical discomfort, that is in spite of the
evidence he presents suggesting that it could have been avoided, and he therefore seems to
represent the burden of disclosure as being greater than that of suffering the physical con-
sequences of not being accommodated appropriately by the others. However, Lewis does
indicate that he has in the past disclosed his IBD status to some people: ‘I’ve only ever
told some of my friends’ (16–17), as was also shown in the narrative where he reveals
that one holiday friend was aware of the condition (21–3). That Lewis tells only certain
friends could indicate the importance of trust vis-a-vis disclosure (Sarangi 2008). These
friends may be considered safe others (Schneider and Conrad 1980: 38), friends Lewis is

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 Stigma and morality in young adults’ accounts of IBD 1027

willing to trust with this discreditable information. The formulation ‘only ever’ frames this
disclosure as a rare occurrence, and non-disclosure as the norm: ‘it’s hard for me to tell
everyone about it’ (17–18). This latter statement could have moral implications, as through
emphasising the general difficulty he finds in disclosing his condition, Lewis could be seen
to excuse (Scott and Lyman 1968) his non-disclosure in the holiday context and subse-
quently alleviate some of his accountability for the negative resolution to the story. This
could be intended to guard against the possibility that concealing his IBD might be seen
to be morally inappropriate behaviour. For Lewis, then, it could be argued that it is his
felt stigma in the form of shame over his IBD that causes him to hide his condition, and
subsequently to experience blame, that is, enacted deviance.
Extract 2 shows Sally (S), an 18-year old sixth form college student who had been diag-
nosed with UC 6 years previously, also constructing felt stigma. Just previous to this extract,
Sally discussed her feelings of trepidation about disclosing her condition to others.

Extract 2
1. S: I don’t tell people (.) the full extent (.) I
2. tell people that (.) um (.) I’ve got a disease
3. (.) I tell them what it’s called (.) mainly because
4. people usually don’t know what it is (.) and they
5. kind of know I go back and forth to the toilet
6. but we don’t discuss it (1.0) I wouldn’t (.)
7. I would only tell (.) close friends I wouldn’t tell
8. people (.) if they were just wondering why I
9. keep going back and forth (1.0) um it is very
10. embarrassing (.) to tell people (.) you know things
11. like that (1.0) with my friends I couldn’t actually
12. discuss it with them I couldn’t (.) say (.) these are
13. the actual symptoms (.) that kind of thing (.)
14. BS: okay (.) I mean are you worried that if people
15. knew the full extent of it are you worried what
16. they’d think of
17. S: [yeah]
18. BS: you and things like that?
19. S: [yeah (1.0) because (.)
20. especially it was (.) more in school ’cause people
21. were just (.) so childish in school (.) you know (.)
22. giggle about it and things like that (.) when I got
23. to college my friends were a lot more mature
24. but still (.) you’re still quite young and you’re
25. still (.) finding it quite embarrassing

Sally reveals that she only partially discloses her IBD to others (l. 1–3) – she tells the
name of the condition but withholds the more discreditable details, that is, the symptoms
and treatments. While she indicates that her IBD at times becomes perceptible to others, in
contrast with Lewis, above, it is not the symptoms themselves, but the behaviour resulting
from symptoms, for example, her going ‘back and forth to the toilet’ (5), that become out-
wardly apparent, though through the modifier ‘kind of’ (5), Sally mitigates the degree to
which this behaviour is known to others. She reports preferring to leave this behaviour
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1028 Benjamin Saunders

unexplained (7–9), rather than to reveal that her ‘going back and forth’ is as a result of
diarrhoea – it is perhaps because others do not witness the effects of the symptoms
themselves that she feels able to avoid explaining the ‘full extent’ (1) of the condition.
Sally implies, however, that this non-disclosure of symptoms is not just down to her: ‘we
don’t discuss it’ (6); the plural pronoun ‘we’ perhaps suggesting that others have no desire
to broach the subject either.
Sally constructs ‘felt stigma’ – in the form of embarrassment about the symptoms of her
condition – as being the main reason why she withholds the details of the symptoms or
treatment: ‘it is very embarrassing (.) to tell people… things like that’ (9–11). Through
this, she implicitly constructs the condition as being taboo and socially unacceptable, repre-
sentations which connote feelings of shame. It could be, then, that her reported choice not
to tell people why she keeps going to the toilet signals that she perceives this felt stigma
to outweigh any felt deviance: the fear that others may perceive her as being culpable for
behaviour that is not fully explained. Unlike Lewis, Sally does not report having experi-
enced any enacted deviance (actual discrimination by others on the grounds of immoral
behaviour) as a result of this lack of explanation. This could be because her reported dis-
closure of her IBD status (2–3) means that others make the link between her frequenting
the toilet and her having previously told them that she has a condition. Alternatively, it
could be that the behaviour Sally is forced to display is not judged as being as ‘deviant’
as the symptoms that Lewis publicly displayed.
Despite her general orientation towards a non-explanation of symptoms, Sally does report
talking about her illness with ‘close friends’ (7); perhaps those Sally would trust with this
information. This is somewhat contradicted later in her account: ‘with my friends I couldn’t
actually discuss it with them I couldn’t (.) say (.) these are the actual symptoms’ (11–13);
however, it could be that here Sally is constructing a contrast between ‘close friends’ who
know all, and ‘friends’ more generally, with whom she does not discuss the symptoms. The
above statement (11–13) suggests that, for Sally, a major part of the constructed taboo
surrounding the condition is not only the possibility that others may become aware of the
symptoms of her condition (19–25) but the embarrassment of actually articulating these
symptoms. The euphemistic phrase ‘things like that’ (10–11), and the indexical ‘it’ (12), used
to refer to the more discreditable details of the condition, also display a dispreference towards
explicitly outlining these details to me, that is, ‘it’ is used to indicate that which she does not
wish to say. This suggests that Sally’s embarrassment even extends to the interview context.
Sally reports having experienced ‘enacted stigma’ at a younger age (20–2), for example,
school friends giggling, a construction that stems from my probing Sally as to what underlies
her felt stigma (14–18), demonstrating my complicity in the construction of stigma. While my
question orients to hypothetical future scenarios, Sally responds in the past tense, comparing
her actual experiences of stigma at school to the ‘more mature’ (23) attitudes of her college
friends. This suggests that Sally suspects that her current college friends do know the details
of her symptoms despite her being too embarrassed to discuss this with them, that is, it is not
their lack of awareness but their greater maturity that means they do not respond in the same
stigmatising way as her peers at school did.
Despite this reported disparity between reactions at school and those at college, Sally
proposes still finding the condition embarrassing because of her young age (24–5). This sug-
gests, then, that from Sally’s perspective, symptoms are especially embarrassing for young
people. This statement could be seen to function as an excuse for her reported embarrassment
and subsequent partial disclosure, as by suggesting that her youth influences her behaviour,
she is able to deny ‘full responsibility’ (Scott and Lyman 1968: 47) for what she may see as
being morally inappropriate behaviour, that is, not telling people the whole story of her condi-
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 Stigma and morality in young adults’ accounts of IBD 1029

tion. This may allow her to present a positive self in spite of her felt stigma. Sally’s pronomi-
nal use also contributes to this accounting. Her use on two occasions of the second person pro-
noun ‘you’re’ (24) functions as an in-grouping device, implying that other young people with
IBD would behave in a similar way in their disclosure practices, thus further excusing her
own behaviour.
In Extract 3, Rosie, 22, an undergraduate university student who had been diagnosed with
UC 6 months previously, similarly constructs felt stigma as a reason for not disclosing her
IBD to others or for revealing only some details. Just prior to this extract, Rosie (R) had dis-
cussed the impact of IBD symptoms on her social activities such as nights out with friends,
before orienting to her presentation of the condition to others.

Extract 3
1. R: it’s quite difficult to (.) explain to people
2. (.) what it involves ’cause as soon as you
3. say (.) ‘poo’ they go ‘ahh no’ (chuckling)
4. ‘urgghh don’t talk to me’ and you say
5. ‘blood’ and they go ‘nooo don’t say anything’
6. (.) so um (.) it’s quite difficult (1.0)
7. BS: so do you ever think that you would try and
8. hide it or conceal it from someone when you
9. first met or would you not want them to know
10. or?=
11. R: =on first meeting I don’t think that I would
12. ever tell anybody (.) and (.) I suppose (.) it’s
13. easier to say I’ve got a tummy ache or I’ve got
14. a bug or something if you’re not (.) feeling well
15. that kind of thing (.) if you didn’t know someone
16. I think (.) also ’cause you’ve got to gauge how
17. they’re gonna react you know (.) if you just
18. suddenly blurt out ‘I’ve got ulcerative colitis’
19. they might go ‘urghh’ you know ‘what’s that is it
20. infectious?’ and you know (.) not want to (.)
21. know you but (.) um (.) yeah or (.) they might
22. be really understanding about it which you hope
23. for obviously (.) I wouldn’t tell someone
24. straightaway (.) definitely not

Rosie implies that she has in the past attempted to fully disclose the more discreditable
details of her condition, by initially recounting experiences of enacted stigma whereby others
have reacted squeamishly, trying to silence her if she attempts to be explicit in describing
her symptoms (l. 1–6). This construction takes the form of a habitual narrative describing a
general course of events (Riessman 1990), perhaps demonstrating that this is a common
reaction to Rosie’s description of symptoms. Rosie constructs these reactions in quite a
humorous way, however (2–5), and her chuckling (3), which while it might in some con-
texts indicate ‘troubles-resistance’ (Jefferson 1984: 360), here appears to suggest that she
does not find these reactions upsetting; though this could also signal Rosie’s embarrassment
in discussing these issues with me. Proposing that others react in this squeamish manner
does not necessarily imply that they form negative perceptions of Rosie, and more likely
© 2014 The Author
Sociology of Health & Illness © 2014 Foundation for the Sociology of Health & Illness/John Wiley & Sons Ltd
1030 Benjamin Saunders

demonstrates her interlocutors’ discomfort in discussing issues relating to bowel functions.

Nevertheless, these reactions still mark the condition as having a degree of stigma associated
with it.
Rosie proposes adamantly that she would always actively conceal her condition upon first
meeting somebody (11–12). However, this is in direct response to my question; the framing of
which sets up the expectation that there will be orientation towards non-disclosure. Rosie
implies that the decision not to disclose would result from felt stigma: fears that recently
acquainted others might display ignorance in thinking that the condition is infectious, itself a
form of stigma (Green 1995). The modal verb ‘might’ (19) signals that these are hypothetical
views of others about which Rosie is speculating – her uncertainty over how others might
react, as opposed to enacted stigma, which could signal that Rosie has not yet had much expe-
rience in managing the disclosure of her condition to new acquaintances, perhaps because of
her fairly recent diagnosis. However, this could also mirror the future orientation in my pre-
ceding question (7–10).
Rosie constructs two extreme-case formulations (Pomerantz 1986) of others’ responses to
her IBD, occupying polar opposites in their levels of positivity/negativity: either she could be
stigmatised to such an extent that others may ‘not want to (.) know you’ (20–1), or an alterna-
tive reaction whereby others ‘might be really understanding’ (21–2). This strategy could be
seen to function as an excuse for her reported concealment, as Rosie represents illness disclo-
sure as being simply too risky in the context of her uncertainty over which of these reactions
she may encounter. This excuse is supported through the phrase ‘suddenly blurt out’ (18) in
describing her hypothetical disclosure, which has negative connotations of being hasty and not
well considered, suggesting that, for her, disclosure of illness information requires careful
thought. Rosie’s pronominal use could also be seen to contribute to this. Between lines 12 to
24 she switches several times between the first person singular pronoun ‘I’ and the second per-
son ‘you’, perhaps, like Sally, above, constructing herself as part of an in-group of those with
IBD, suggesting that others would have similar concerns, and thus further excusing her non-
disclosure. Like Sally, this may contribute to what Rosie sees as being a morally appropriate
identity performance in this context.
Rosie implies that her IBD does not always remain imperceptible, and can at times
become outwardly apparent (though it is unclear from this account if this is in the form of
symptoms, or just associated behaviour, for example, frequenting the toilet). In relation to
others hypothetically noticing these signs, Rosie’s reported reaction displays ‘stigma-manage-
ment’ (Goffman 1963: 69): ‘it’s easier to say I’ve got a tummy ache or… a bug’ (12–4).
While framing this as ‘easier’, presumably because it would require no further explanation, it
is also likely that Rosie sees attributing symptoms to a more common illness as having less
stigma potential. She is thus ‘presenting signs of a stigmatised failing as signs of another
attribute, one that is less significantly a stigma’ (Goffman 1963: 117). This approach differs
from that of Lewis and Sally, both of whom did not fully explain their IBD signs; and, by
providing an explanation for why she is feeling unwell, Rosie may avoid potential charges
of deviance, as Lewis reportedly experienced. Again, Rosie’s use of the second person ‘you’
(14) legitimates her actions by framing this behaviour as that which anybody in her position
would do.
In the final account to be analysed, Joanna constructs enacted stigma in relation to people
first finding out about her IBD. Joanna (J), aged 25, who had been diagnosed with Crohn’s
disease 5 years previously, was working full time as a receptionist:

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 Stigma and morality in young adults’ accounts of IBD 1031

Extract 4
1. BS: you mentioned about your friends
2. being really supportive and stuff [about her
3. IBD] (.) do they all know about it? (.)
4. J: everyone knows (.)
5. BS: everyone knows? (.)
6. J: everyone (.)
7. BS: oh right=
8. J: =there’s pretty much no one that
9. doesn’t know (.) I tell you they’d be so
10. shocked if they did find out ’cause that’s
11. people’s reaction generally (.) my friends
12. have all generally accepted it and then you
13. get new random people who find out and
14. they’re really shocked (.) shocked
15. at the extent of what you’ve got to go
16. through (.) that’s weird (.) ’cause
17. I just expect everyone to accept it (.)
18. so it’s new people’s reactions that are the
19. weirdest (.) it’s like oh my god (.) at work and
20. stuff they just don’t get it the comment I had
21. yesterday was ‘isn’t it really sad you’re so young’
22. and it’s like ‘so young what?’ and they’re like
23. ‘so young to be like this’ and I don’t think like
24. that (.) and their reactions really get me down
25. ’cause it’s like (.) don’t talk like that I don’t talk
26. like that (.) (chuckling) you don’t talk like that
27. you know (.) it annoys me when people don’t
28. know how to handle it (.)

Unlike the selective disclosure discussed in the accounts of Lewis, Sally and Rosie, Joanna
states that ‘everyone knows’ (l. 4) about her condition. However, her following statement
(8–9) shows this to be an extreme-case formulation rather than an accurate description, that is,
not quite everyone knows. Joanna creates a contrast between the perceptions of her friends,
who she implies do not view her IBD as particularly discreditable (11–12), and the ‘shocked’
(14) reactions of ‘new random people’ (13), presumably referring to people she has only
recently met. That these others are reportedly shocked by ‘the extent’ (15) of Joanna’s illness
experience implies that Joanna discloses the full details of her symptoms even to new acquain-
tances, which is in stark contrast to the concealment and partial disclosure constructed in
Extracts 1–3. It may therefore be the case that this reported shock reflects a disparity between
Joanna’s inner bodily illness and her apparently ‘normal’ outer appearance, that is, she does
not look ill so how can she have ‘to go through’ (15–16) such experiences? Joanna distances
herself from these reactions of others by contending that she finds it ‘weird’ (16), which could
be seen to construct an implicit contrast between these reactions and her own non-fuss, non-
self-pitying attitude: ‘I just expect everyone to accept it’ (17).
These shocked reactions are exemplified through the direct reported speech of a workplace
conversation Joanna had had: ‘“isn’t it really sad you’re so young” and it’s like “so young
what?” and they’re like “so young to be like this”’ (21–3). The initial comment in this
exchange, attributed to an individual at Joanna’s workplace, has connotations of the counter-
normativity that many may ascribe to young adults having a chronic condition, and it is this
© 2014 The Author
Sociology of Health & Illness © 2014 Foundation for the Sociology of Health & Illness/John Wiley & Sons Ltd
1032 Benjamin Saunders

dissonance which appears to lead the speaker to project pity towards Joanna. This emphasises
Joanna’s ‘differentness’, implicitly representing the condition as removed from the normalcy
of non-IBD others. This reported sympathy, while perhaps well-intentioned, can be viewed as
a form of enacted stigma, which is how Joanna portrays her interpretation of this – she con-
structs an implicit contrast between these reactions and her own non-self-pitying attitude, by
not only arguing that she does not hold such a view herself but also that when others voice
these comments she finds it upsetting (23–8). Her explicit rejection of these perceptions allows
for the construction of a positive, morally appropriate identity as somebody who is strong-
willed in the face of illness and not willing to give credence to others’ negative perceptions of
her. Her chuckling (26) further supports this projection, as in this context I would argue that
this displays ‘troubles-resistance’ (Jefferson 1984: 360), intending to show that this negativity
is ‘not getting the better of her’ (1984: 360). With this said, Joanna’s admission that she gets
upset by this enacted stigma suggests that her resistance to such views is not always entirely
successful.

Discussion and conclusions

All the four accounts analysed demonstrate the participants discursively constructing their IBD
as having a degree of stigma associated with it, primarily because of the taboo nature of the
symptoms, which, with the exception of Joanna’s account, leads to reported concealment and
non-disclosure in some form or another, towards everyone but safe others (Schneider and Con-
rad 1980), for example, close friends – those trusted with this discrediting information (Sarangi
2008). The accounts were shown to be put together in ways that may align with what the par-
ticipants consider as being morally appropriate self-presentations within this situational context.
As detailed in the section on the analytic framework above, these types of construction are
reflective of trends observed across the larger dataset.
The construction of both felt stigma (feelings of shame and fear of stigmatisation) and
enacted stigma (actual experiences of stigma) was observed. While these concepts, felt stigma
especially, have been identified in relation to several other chronic conditions, for example,
HIV/AIDS (Green 1995) and epilepsy (Scambler and Hopkins 1986), the ways in which these
two concepts are manifested in the participants’ accounts can be seen, in relation to this cohort
at least, to challenge recent arguments questioning the relevance of stigma in chronic illness
research (Green 2009, Sayce 1998, Thomas 2007, see the chronic illness, stigma and deviance
section above). While the analysis highlighted the significance of stigma in the representations,
it was shown that, given the unstable nature of the condition – that is, its potential to become
outwardly apparent, negotiating stigma in relation to possible charges of deviance is an espe-
cially pertinent issue; therefore, looking at stigma alone – as previous IBD research has done
(for example, Brydolf and Segesten 1996) – is not always adequate in analysing the experi-
ences of this group.
The representations of enacted stigma identified challenge the arguments of those who say
we should no longer talk of chronic illness-related stigma, but instead address only discrimina-
tion, that is, unfair treatment (Sayce 1998), as well as related arguments that stigma can only
become relevant through the exercise of power and oppression (Link and Phelan 2001).
Enacted stigma was found here to be constructed in a variety of different forms: as squeamish
reactions (Rosie), again indexing the taboo surrounding bowel functions; as reported experi-
ences of friends ‘giggl[ing] about [IBD]’ (Sally, Extract 2: 22); and as ignorance and pity
(Joanna). Enacted stigma in the form of pity was commonly observed throughout the dataset.
Several other interviewees gave examples either of friends, family or colleagues expressing
© 2014 The Author
Sociology of Health & Illness © 2014 Foundation for the Sociology of Health & Illness/John Wiley & Sons Ltd
 Stigma and morality in young adults’ accounts of IBD 1033

sympathy towards them in a well-intentioned manner but this sympathy was reportedly articu-
lated in a way that ‘othered’ the person with IBD, emphasising their differentness. The igno-
rance and misconceptions reported in Joanna’s account and the squeamish reactions
constructed by Rosie appear to be unconscious acts, not active attempts to discriminate; yet
these acts nonetheless constitute stigmatisation. While it could be posited that these reported
reactions exemplify broader societal views on the (in) capabilities of chronically ill individuals
being reconstituted at an interpersonal level, and thus power and oppression are at play indi-
rectly, I would argue that such representations cannot be considered solely under the umbrella
term of discrimination. Considering stigma only in relation to power and oppression is there-
fore not adequate in representing the experiences of young adults with IBD.
The ways in which felt stigma is constructed in the accounts suggests that Green’s (2009)
proposition that we may be close to witnessing the end of chronic illness-related stigma is
unlikely in relation to young adults with IBD. The main reason for this, I would argue, stems
from the locus of the felt stigma. While previous research into IBD experience has also identi-
fied felt stigma (though not using this terminology) (for example, Kelly 1992, amongst others)
these studies have not fully explored what underlies the fears of young adults with IBD. In the
representations presented here, as reflective of the larger dataset, it appears that it is not having
a chronic condition per se that invokes fears of being stigmatised. Instead, it is the social-unac-
ceptability of bowel functions, as perceived by the young adults themselves, that is at issue,
that is, societal views that it is taboo to talk about, or to know about, others’ bowel habits,
especially when these are irregular in some way: ‘it is very embarrassing (.) to tell people …
things like that … I couldn’t say … these are the actual symptoms’ (Sally, Extract 2: 9–13).
The data indicate that, while it often remains invisible to others, the condition has an unwel-
come tendency to become outwardly perceptible at times, to varying degrees. This has been
discussed by others also. Kelly (1992) talks of attempts to present a ‘relatively normal self’ to
others as ‘continuously being threatened, because of the inherently unstable nature of the con-
dition’ (1992: 37). It appears that it is at these times, when individuals become discredited
(Goffman 1963), that they are most strongly faced with decisions regarding whether to dis-
close their IBD status, and how much (or how little) information to reveal. Sally, Rosie and
Lewis all discuss being, to some extent, let down by their bodies, resulting in a conflict
between bodily demands and desired self-presentation (Kelly and Field 1996: 245). In cases
where signs and symptoms are not recognised as being associated with IBD – which could be
termed perceptibility without awareness – the individual may be susceptible to negative moral
judgements of blame, exemplifying enacted deviance. It can therefore be argued that, when
IBD becomes outwardly perceptible, individuals are faced with decisions over disclosure that
involve weighing up their degree of felt stigma against their felt deviance; that is, feelings of
shame and fears of being stigmatised if others know about their illness versus fears of being
regarded deviant as a result of unexplained behaviour that others may perceive to be strange
or unpleasant. In this scenario the individual may choose to only partially disclose (Sally),
attribute signs to a less stigmatised illness (Rosie), or may leave their IBD signs unexplained
(Lewis). As was shown in the data, non-disclosure because of shame ultimately has the poten-
tial to result in experiencing blame, seen most prominently in the negative reactions reportedly
experienced by Lewis. Other interviewees in the dataset similarly constructed experiences of
enacted deviance resulting from others’ lack of awareness of their IBD. Though it did not
always result in distressing physical experiences such as that undergone by Lewis, some did
report instances of friends and colleagues making disparaging remarks about their irregular
bowel habits, which these others appear to regard as deviant.
Though my interest here is in experiences of IBD, this negotiation of felt stigma and felt
deviance is potentially relevant to other chronic conditions that can be unstable in their nature.
© 2014 The Author
Sociology of Health & Illness © 2014 Foundation for the Sociology of Health & Illness/John Wiley & Sons Ltd
1034 Benjamin Saunders

Epilepsy, for instance, while it is largely imperceptible, can become apparent if seizures are
witnessed by others (Scambler and Hopkins 1986) and similarly, multiple sclerosis can also
remain largely unnoticeable but at times become outwardly apparent through various aesthetic
considerations (Green 2009). While this marks a commonality between certain illnesses, the
nature of the signs and symptoms, how apparent they become and how deviant they are per-
ceived to be, will all differ widely across conditions. Therefore, certain stigma- and deviance
management strategies may not always be available to all individuals.
The negotiation of stigma and deviance in the accounts was shown to be constructed
through a range of rhetorical discourse strategies demonstrating the participants’ concern to
present their management of IBD as being performed in a manner they deem morally appropri-
ate. This included reported speech and contrast structures, most notably in Joanna’s account,
as she shows through a reported exchange her explicit rejection of others’ pitying attitude
towards her IBD; thus presenting herself as somebody who is strong-willed in the face of ill-
ness. Issues of morality are also attended to by Rosie and Sally in their construction of excuses
for their selective or partial disclosure; created through their pronominal use and, in Rosie’s
case, extreme-case formulations (Extract 3: 19–23). This accounting implicitly marks that non-
disclosure has the potential to be judged morally inappropriate, perhaps because individuals
who conceal their condition may be deemed to be untrue to themselves, or to care too much
about the perceptions of others. Excuses are therefore attempts to construct a morally appropri-
ate identity in spite of this behaviour. The portrayal of moral appropriateness through the use
of these strategies is a thread that runs throughout the dataset, not just in relation to representa-
tions of stigma and deviance but also in the interviewees’ attempts to excuse other illness
behaviour that may be deemed morally inappropriate (Saunders 2011b). It must be noted that
these representations are of course contextually contingent: what is constructed as moral in this
setting may differ in other contexts; therefore, representations must be viewed as situated and
interactionally accomplished (Riessman 1990).
Based on the interpretations presented here, I would argue that for there to be an end to
young adults’ constructions of IBD-related stigma and deviance, the societal taboo associated
with bowel conditions needs to be addressed. This goal is, of course, beyond the scope of
academic research alone. However, research in this area can at least contribute to improving
our understanding of the issues faced by young adults with IBD and how they themselves
represent these issues, which may help in tackling this taboo. While the findings in Lewis’
and Sally’s respective accounts suggest that promoting an increased awareness of the condi-
tion would not be a good thing, as they indicate they do not want people to be more aware
of their IBD, I would argue that in a cultural environment where there is greater understand-
ing of bowel conditions Lewis and Sally may not have constructed the same level of felt
stigma and would perhaps have felt more comfortable disclosing their condition to others.
Greater awareness on the part of Lewis’ friends may have at least meant he did not suffer
enacted deviance and the subsequent physical discomfort. Additionally, improving an under-
standing of IBD experience could lessen the unintentional enacted stigma identified in the
accounts.
Aside from contributing to increased understanding, it is hoped that the findings presented
here could have implications for the advice given to members of this age-cohort in the clinical
setting. Presenting the data extracts to healthcare professionals, along with a summary of the
analytic interpretations, could further their understanding about how young adults with IBD
construct their condition in terms of felt and enacted stigma, and felt and enacted deviance.
This may place healthcare professionals in a better position to discuss with young adults issues
such as managing social interactions vis-a-vis their condition, and illness disclosure, which
could help the young adults to better manage their condition on a daily basis.
© 2014 The Author
Sociology of Health & Illness © 2014 Foundation for the Sociology of Health & Illness/John Wiley & Sons Ltd
 Stigma and morality in young adults’ accounts of IBD 1035

Address for correspondence: Benjamin Saunders, Department of Sociology, Wentworth

College, University of York, Heslington, York Y010 5DD. E-mail: SaundersBM@cardiff.ac.uk

Acknowledgements

The author would like to thank Dr Justine Coupland and Professor Alan Radley for their very useful
comments on an earlier draft of this article. The data for this study come from a doctoral research project
funded by a studentship awarded to Cardiff University by the UK University Research Council.

Notes

1 National Research Ethics Service Research Ethics Committee: South-East Wales, ENCAP Schools
Research Ethics Committee, Cardiff University, University Research Committee Swansea. University,
Faculty of Environment and Technology Research Ethics Committee, University of the West of
England and Research and Scholarship Committee, Glamorgan University.
2 To preserve the participants’ anonymity, pseudonyms are used throughout.

Appendix A: Transcription conventions

(.) untimed short pause

(2.0) pause timed in seconds
(chuckles) verbal, non-lexical item
? indicates questioning function (not grammatical interrogative)
[ overlapping speech
[] entirely overlapped speech
underlining unusually heavy emphasis
= latched utterances (following each other without perceptible pause)

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