‘i'm just a walking eating disorder’: the mobilisation and construction of a collective...

‘I’m just a walking eating disorder’: the mobilisationand construction of a collective illness identity in eatingdisorder support groups

Jessica Powers Koski

Department of Sociology, Northwestern University, USA

Abstract The increasing visibility of support groups has prompted a flurry of sociologicalinvestigation, much of which explores how groups benefit participants. Whatresearchers have failed to consider is the group itself. Bringing social movementtheory to bear on the case of eating disorder support groups, this study seeks toexplore how support groups attract and sustain adequate participation. Participantobservation in an eating disorder support group reveals that broad diagnostic andprognostic frames, coupled with strong motivational framing and collectiveidentification on the basis of a shared disordered self, promote support groupparticipation. The very processes that enable support groups’ successfulmobilisation, however, simultaneously construct a collective illness identity, whichin turn serves as the basis for participants’ individual-level identity work. Morespecifically, support group mobilisation processes construct eating disorders ashighly consequential, highly symptomatic, chronic, rooted in the self, anduncontrollable. Such findings suggest that support groups may have unanticipatedand potentially adverse consequences for participants and thus build on previouswork highlighting the unintended health consequences of framing processes. Suchfindings further contribute to our understanding of how macro-social forces shapeillness experience.

Keywords: support groups, mobilisation, framing, collective illness identity, illness experience,eating disorders

Introduction

The increasing visibility of support groups has prompted a flurry of social scientific investiga-tion determined to reveal how such groups benefit participants. Much of this research is rootedin the traditions of social learning theory and symbolic interaction. Social learning theoristsargue that support groups facilitate the distribution of coping mechanisms (Ablon 1981, Katz1993). Symbolic interactionists point instead to support groups’ value as fora for personalstorytelling through which participants gain a vocabulary to communicate their illness andnarrative resources that enable reconstructive identity work (Barker 2002, Cain 1991, Gamson1992, Irvine 1999, Karp 1992, Mason-Schrock 1996). Noticeably absent is a serious empiricalinvestigation of the forum itself. A thorough sociological treatment of support groups requiresthat one not only ask how such groups benefit participants, but also explore the processesnecessary for successful group functioning.1

© 2013 The Author. Sociology of Health & Illness © 2013 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

Sociology of Health & Illness Vol. 36 No. 1 2014 ISSN 0141-9889, pp. 75–90doi: 10.1111/1467-9566.12044

Adequate participation is a prerequisite for any group’s success. Be it a social movement,club or sports team, every group faces the task of mobilisation. In the case of support groups,mobilisation proves particularly challenging. Most simply, a support group’s own successthreatens to deplete its membership. Additionally, widespread comorbidity generates stiffcompetition in the market for support group participants. Finally, support groups requireparticipants to share highly personal information. Although participants typically share adiagnostic label, individual illness experiences vary tremendously. Sustaining membershipconsequently requires that groups foster trust among participants and promote group cohesion.

Bringing social movement theory to bear on the case of eating disorder support groups, thisarticle explores how support groups attract and sustain adequate participation. Participantobservation in an eating disorder support group reveals that broad diagnostic and prognosticframes, coupled with strong motivational framing and collective identification on the basis of ashared eating-disordered self, promote support group participation. The very processes thatenable support groups’ successful mobilisation, however, simultaneously construct what Barker(2002) terms a collective illness identity: a public illness narrative that undergirds participants’individual-level identity work. More specifically, such processes yield a permissive collectiveillness identity (Barker 2002) that may hinder participants’ recovery and accelerate medicalisation.Such findings suggest that support groups may have unanticipated and potentially adverseconsequences for participants and thus build on previous work highlighting the unintended healthconsequences of framing processes (Aronowitz 2008, Snow and Lessor 2010). Such findingsfurther contribute to our understanding of how macro-social forces shape illness experience.

In what follows, I first delineate the analytical tie between support groups and social move-ments and review two processes central to mobilisation: framing and collective identity. I thenoutline the conceptual links between such processes and the construction of a collective illnessidentity. After describing my data and method, I demonstrate more specifically how framingand collective identity promote participation in eating disorder support groups while simulta-neously constructing a collective eating disorder illness identity. In conclusion, I consider whatthis study suggests with regards to the impact of support groups, both individual andcollective, and highlight its contribution to research examining the unintended consequences offraming processes and macro-social determinants of illness experience.

Insights from social movement theory

Many attempts to classify social movements have differentiated between strategy-orientedmovements, which target external aims through instrumental action, and identity-orientedmovements, which seek to express a collective identity (Touraine 1981). Koopmans (1995)further distinguished between subcultural and countercultural identity movements. Subculturalmovements build collective identity through within-group interaction while counterculturalmovements are opponent-oriented. Thus, we can broadly classify movements by their logic ofaction (instrumental or identity) and their general orientation (internal or external) (Duyvendakand Guigni 1995).2 Following Taylor (1999), I treat support groups as internally orientedidentity movements.3 Support group participants presumably share a common aim: adopting arecovery identity (Cain 1991, Rafalovich 1999). Sought through within-group interaction, itscollective expression is an end in itself.

Those analysing social movement outcomes focus on two particular variables: resources(McCarthy and Zald 1973, 1977) and political opportunity (McAdam 1983). For an internallyoriented identity movement, however, success depends less on resources and politicalopportunity than on mobilisation. Adequate participation is critical in achieving its end goal:© 2013 The AuthorSociology of Health & Illness © 2013 Foundation for the Sociology of Health & Illness/John Wiley & Sons Ltd

76 Jessica Koski

collective identity expression. Successful mobilisation, however, requires an identity movementto surmount a unique challenge: a delimited pool of potential participants (Duyvendak andGuigni 1995).

Framing theory, which focuses on the symbolic rather than structural determinants of mobil-isation, allows us to better understand and account for movement participation. Goffman(1974: 21) understood frames as ‘schemata of interpretation’ that allow individuals to ‘locate,perceive, identify, and label’ both personal and collective experiences and events. The processof perceiving and labeling creates order and imbues meaning. In the case of social movements,‘collective action frames’, the products of such signifying work play a powerful role inguiding action. Frames further serve to bridge individual and collective identities, whichthemselves play a critical role in sustaining participation (Snow and McAdam 2000). Thus, inseeking to account for support group mobilisation, I focus on two key processes: framing andcollective identification.4

FramingSocial movement organisations (SMOs) must attend to three core framing tasks: diagnostic,prognostic and motivational framing (Snow and Benford 1988). Diagnostic frames identify anSMO’s grievance and attribute blame. Prognostic frames articulate a solution and strategies foraction. Finally, motivational frames offer a ‘call to arms or rationale for action’ (Snow andBenford 1988: 202). Although many conceive of framing as purely strategic, frames alsoemerge organically through discourse or, more simply, talk (Gamson 1992). Through conversa-tion, participants compile a diverse array of experiences into a single, unified interpretiveframe, a process known as frame articulation (Benford and Snow 2000).

How an SMO attends to these three framing tasks significantly impacts on its mobilisation.Diagnostic and prognostic frames define an SMO’s pool of potential participants. The moreinclusive and flexible an SMO’s diagnostic and prognostic frames, the greater the range ofpotential adherents (Benford and Snow 2000). SMOs often broaden their diagnostic and prog-nostic frames in an effort to boost participation, a tactic known as frame extension (Snowet al. 1986). For example, feminist efforts to stem violence against women seek to mobilisenot only survivors of assault but all women, arguing that ‘all women are at risk at all times’(Jenness and Broad 1994: 417, italics in original).

Finally, motivational frames spur action, transitioning participants from mere consensus on aproblem to actively seeking change (Klandermans 1984). Motivational frames often alsosupply the agency component of collective action frames. In Gamson’s (1995: 90) words,‘They suggest not merely that something can be done but that “we” can do something.’ Asonly those who believe they can have an impact are likely to participate, the agencycomponent of collective action frames is critical for mobilisation.

Collective identificationCollective identification impacts on an SMO’s ability to sustain participation and to instil inparticipants a willingness to take risks on behalf of the organisation (Gamson 1992, Taylorand Whittier 1992). Collective action frames initiate collective identification by bringingtogether individuals who share a common cause. However, collective identity is predicated onan affective ‘we-ness’ (Polletta and Jasper 2001). Participants must not only recognise a com-mon cause but also feel connected. Developing affective connections requires participants tofirst recognise a shared characteristic and define it as important (Taylor and Whittier 1992).The participants must then enlarge their personal identities so as to encompass the relevantshared characteristic (Gamson 1992). As with framing, such identity work is often strategicbut also occurs organically through storytelling (Hunt and Benford 1994).

© 2013 The AuthorSociology of Health & Illness © 2013 Foundation for the Sociology of Health & Illness/John Wiley & Sons Ltd

Collective illness identity in ED support groups 77

Framing, collective identity, and the construction of a collective illness identityBarker (2002) introduced the notion of a collective illness identity to capture the ways inwhich individual illness identities are the product of collective, as well as individual, identitywork. In her words, a collective illness identity is a ‘public narrative onto which individuals indistress can situate their symptoms to give their illness experience structure, meaning, andlegitimacy’ (Barker 2002: 284). Before proceeding to the specific case of eating disordersupport groups, let me briefly highlight the conceptual links between framing, collectiveidentity and the construction of a collective illness identity.

As with an SMO, a support group’s diagnostic frame defines its target: the disorder withwhich participants identify (i.e., its consequences, boundaries and symptoms). A group’s targetmay seem obvious in the case of a diagnosis-based support group, but significant leeway existsin interpreting disease labels (Kleinman 1988, Leventhal et al. 1980). Likewise, prognosticframes define recovery and effective treatments. Motivational frames, in providing a rationalefor participants to fight their affliction, help to construct the disorder’s course. Finally, whilecollective identification is critical in bridging gaps in participants’ illness experiences, it tooimpacts on the construction of the disorder as it requires highlighting certain aspects of theillness experience as both important and shared. Moreover, given that collective identity requiresparticipants to incorporate aspects of the ‘we’ into their individual identities, it may impact ontheir relationship with the diagnostic label. Is the disorder internal or external to the self? Is it aprimary or a secondary identity? The links between framing, collective identity and theconstruction of a collective illness identity suggest that studies of support group mobilisationprocesses ought also consider how such processes may shape participants’ illness experiences.

Data and method

Eating disorder support groups offer an excellent case for studying support group mobilisationfor two reasons. Firstly, whereas twelve-step groups impose a strict governing ideology (Katz1993), eating disorder support groups are largely unstructured. Both framing and collectiveidentity emerge organically through group interaction. Moreover, eating disorder support groupparticipants are incredibly diverse with respect to their illness experience. Most significantly,the term eating disorder encapsulates multiple diagnostic labels. Groups further include partici-pants at multiple stages in recovery. Some currently meet the diagnostic criteria for an eatingdisorder. Others previously met the diagnostic criteria but have since stabilised. Still othersnever met the diagnostic criteria but nonetheless adopt the eating disorder label as a means todescribe and communicate their experience. Successfully incorporating a diverse array of suf-ferers significantly increases the ability of eating disorder support groups to sustain adequateparticipation but nonetheless presents a challenge: what processes enable such a diverse set ofsufferers to participate in a single support group? The answer promises insight into supportgroups’ mobilisation processes more generally.

The data for this article come from 11 months of participant observation in a National Asso-ciation of Anorexia Nervosa and Associated Disorders (ANAD) support group, located in ametropolitan area in the midwestern USA.5 The group meets weekly for 90 minutes. Relativeto Alcoholics Anonymous meetings, ANAD meetings are highly unstructured, with the excep-tion of two basic rules: no food and no numbers (i.e., no weights, sizes or calories). Thegroups do, however, make use of ritualised introductions or check-ins, from which discussiontypically flows naturally. All participants are encouraged to contribute but sharing is notrequired. The group is only open to those who identify as having an eating disorder. Partici-pants undergo no pre-screening and need not commit to ongoing participation. Although lay© 2013 The AuthorSociology of Health & Illness © 2013 Foundation for the Sociology of Health & Illness/John Wiley & Sons Ltd

78 Jessica Koski

people typically lead ANAD support groups, two therapists facilitated the group observed inthis study. However, neither was acting in a professional capacity; they managed time andnoted overarching themes. The participants set the agenda.

Over the course of my participant observation, I interacted with approximately 30 partici-pants. Each meeting included five to 10 participants. The range in weekly participation reflectsan ever-shifting balance between veteran and new members. The group had nine core mem-bers. ‘Core’ here is defined in part by regular attendance. More important, however, is theirknowledge of the other participants’ histories and their established relationship with the facili-tators. For core members, most of whom had ceased formal treatment, support group participa-tion served as maintenance. Not all core members participated weekly but those whoseparticipation was less regular still returned frequently to check-in for fear of relapsing. Newmembers were also common. Many were referred by therapists or attended at the insistence offriends or family members. Others located the group through ANAD’s website. For new mem-bers, support group participation was the first step in seeking treatment or a supplement to for-mal care. Some became regular attendees while others made only a single appearance.

The group consisted almost entirely of white women, ranging in age from late teenage yearsto their fifties, both single and married, with and without children. I encountered only onemale participant, who did prove a consistent attendee but largely abstained from group discus-sion. Using dress, language and comportment as a rough guide (Irvine 1999), I would arguethat most of the participants were middle and upper-middle class.

My role was that of participant observer, a status of which both the facilitators and partici-pants were aware. I approached the facilitators before attending and was granted accessprovided my presence did not disrupt the group process or leave any participant uncomfort-able. I also agreed to preserve participants’ anonymity. Ritualised introductions offered anexcellent opportunity to introduce my research and myself without disrupting the normal flowof meetings. It is my impression that my presence did not disrupt the group process. Theparticipants generally seemed to forget that I was conducting research. No participants raisedconcerns. As a white woman in her mid-twenties, I resembled most of the participants. Hadmy presence proved distracting, I am confident the facilitators would have rescinded myaccess. In order to limit reactivity, I did not take notes or record meetings but rather wrotedetailed field notes immediately following each session. In writing my field notes I strove toremove my theoretical lens so as to allow for the most thorough notes possible. Full fieldnotes enabled inductive coding, as is consistent with grounded theory (Glaser and Strauss1967). All names used in this article are pseudonyms.

Note that this study does not aim to generalise about eating disorder sufferers but abouteating disorder support groups or, more specifically, the mobilisation processes that enable ade-quate and sustained participation. From this perspective, the lack of minority andsocioeconomic diversity in my sample is not a significant concern. Eating disorders do strikeminorities but the typical sufferer is white and middle-class. Minority and non-middle classsufferers are consequently less inclined to participate in an eating disorder support group(Thompson 1994). What is more critical is that the group includes a diverse assortment ofeating disorder sufferers with respect to their disorder, its severity and their recovery.

Eating disorder support group mobilisation

My participant observation in an eating disorder support group reveals that there are four vari-ables that impact on the group’s ability to acquire and sustain adequate participation: (i) diag-nostic framing, (ii) prognostic framing, (iii) motivational framing and (iv) collective



identification. In this section I examine each in sequence, using excerpts from my field notesto illustrate its development and function. In the following section I explore how each mobili-sation process contributes to the construction of a collective illness identity, which in turnserves as the basis for participants’ individual-level identity work.

Diagnostic framing: defining ‘eating disorder’Although clinicians recognise eating disorders as mental conditions they typically emphasisephysical symptoms. The American Psychiatric Association’s (2000) Diagnostic and StatisticalManual for Mental Disorders, 4th edn recognises intense fear of gaining weight and severebody image distortion as symptoms of anorexia nervosa but a diagnosis hinges on anindividual’s refusal to maintain 85 per cent of a normal body weight.6 Likewise, a diagnosisfor bulimia nervosa typically hinges on unusually large food consumption, the frequency withwhich such over-consumption takes place and the use of ‘inappropriate compensatorybehaviour’, such as laxatives or self-induced vomiting. First-line treatments for anorexia andbulimia include weight-gain and the ceasing of binge-purge behaviour, respectively. Incontrast, the group’s diagnostic frame defines eating disorders as mental rather than physical,which in turn broadens the pool of potential participants by enabling those who do not meetthe diagnostic criteria to participate.

Expressions of frustration with characterisations of eating disorders as purely physical playa significant role in constructing the group’s diagnostic frame. For instance, one participant,noting that reports of celebrities’ eating disorders typically only include before and afterphotos and a brief blurb describing the star’s weight loss or gain, criticised the media’sportrayal of eating disorders as superficial. In her words, ‘There’s nothing about the mentalhealing’. Another complained that her family no longer recognised her as sick because she hadgained weight. As she explained, ‘I look a lot better now, but the sickness is still there’. Suchcomments construct eating disorders as predominantly mental rather than as a constellation ofphysical symptoms and forms of behaviour.

Those rare participants who insist that their eating disorders are in fact an issue of weightalone encounter resistance from the group. For example, Sandra acknowledged that she metthe diagnostic criteria for anorexia but stressed that she did not fear gaining weight. Rather,she simply found it impossible to put on the pounds. In a tone of exasperation, the facilitatoradvised, ‘Well, just be prepared that it might not be as easy as you think. Once you start gain-ing weight, you may feel differently’. In challenging Sandra’s denial of body image distortion,the facilitator undermined Sandra’s credibility as a participant, effectively suggesting that shewas not truly an eating disorder sufferer.

Framing eating disorders as mental also enables participants to attribute non-eating andweight-related symptoms to the eating disorder, which further extends the diagnostic frame.Many attribute difficulty relaxing to the eating disorder. Becky bemoaned her inability to siton the couch and watch television without thinking, ‘Is this okay?’ Can I just sit here andwatch a television show? No, I have to sew something, or make something’. Sally similarlylinked her procrastination at work to her eating disorder. In her words:

I think, because I’m not using behaviours ... that I’m okay. But I’m not ... I’ll spend hourson Overstock.com when I know I have a big project to finish. All these behaviours stemfrom my eating disorder.

Subsuming problems with work and leisure broadens the groups’ diagnostic frame and thusalso the range of potential participants. More specifically, it enables those with sub-clinicaleating disorders to participate. Beyond attitudes toward eating and weight, one can find© 2013 The AuthorSociology of Health & Illness © 2013 Foundation for the Sociology of Health & Illness/John Wiley & Sons Ltd

80 Jessica Koski

evidence of the eating disorder in one’s daily comportment, including common battles againststress and distractedness.

Prognostic framing: defining ‘recovery’Support groups must also attend to prognostic framing: defining recovery. For eating disor-der support groups, to recover is to transition from disordered to healthy or normal. Recov-ery is not a singular achievement but an ongoing process requiring participants tocontinually monitor and classify their behaviour with respect to these three categories.Obtaining health and normality requires constant vigilance. Normal behaviour may be eitherhealthy or disordered depending on one’s thought processes. Framing recovery as requiringconstant vigilance shields support groups from one inevitable consequence of success: losingrecovered participants. Because recovery requires constant vigilance, many continue to partic-ipate long after they have ceased eating disorder behaviour and no longer exhibit physicalsymptoms.

The distinctions between healthy, normal and disordered emerge and coalesce throughparticipants’ frequent progress reports. Such reports reveal both the process through which thegroup’s prognostic frame develops and evidence of its effect: the need for constant monitoring.Consider Sandy, who reflected upon ‘all those people who can just grab a yogurt when theyare hungry’. For her, the ability to act on impulse, without thought except to one’s ‘hungercues’, is ‘normal’. She adds that if she were merely to eat a yogurt for lunch, it would not be‘healthy’ but rather ‘disordered’. Sandy concedes that she must put ‘more effort’ into hereating; she must actively think about having a ‘healthy balanced meal’. Here we see thatbehaviour may be ‘normal’ or ‘disordered’ depending on its performer and how it is framed.

More formal aspects of participants’ treatment demand equal vigilance. Consider the follow-ing exchange between Sally and Emma, spurred by Emma’s struggle to seek help:

Really, I just don’t know that I need it. But it’s when I start to feel like I don’t need helpthat I know I really do need it. That’s when I slip and start using behaviours.

Sally immediately adds:

I can totally relate. I know it’s a giant red flag for me when I start to feel like I don’t needhelp ... like I don’t need to meet with my therapist ... like I don’t need to meet with mynutritionist. At some point, you are going to want to start pulling away from those things,but it’s a really fine line to walk. That’s recovery.

Both Sally and Emma exhibit a need to closely monitor their alleged progress in recovery. Toomuch success, such as a desire to reduce therapy, may not indicate healthy progress but rathersupply further evidence of the participant’s disorder.

Motivational framing: developing a commitment to recoveryEating disorder support groups must also motivate participants to commit to treatment or,more specifically, support group participation. The construction of the group’s motivationalframe is a three-part process. Firstly, participants lament the energy that their eating disor-ders monopolise. Secondly, participants collectively envision a life free of the demands ofthe eating disorder. Finally, participants share glimpses of recovery and its associated free-dom.7 Recognising the energy they invest in their eating disorders initiates participants’motivation to recover. In the following exchange, Sandy outlines the planning necessary tomanage her eating disorder:



‘I have to plan my day out. I plan out what I’m going to eat. Not too much. Not too little.And how I’m going to spend my day. I don’t like to have unstructured time. Like tonight ...I have to work until 9:30 and then I’m going to see a movie. By the time I get home, I’llprobably be too tired to binge’. Sarah then asked, ‘What happens if you have to changesomething?’ Sandy admitted that she still worries about things like the weather. In herwords, ‘If it rains, I can’t ride my bike and then I wouldn’t be able to get my daily exer-cise.’ She continued to explain that when that happens, she might work a little harder atwork. She added that whenever she finds herself with a spare hour, she tries to find a book-store or a library, what she describes as a ‘safe place’.

Hearing others describe the thought necessary to carry out their daily activities enables thoselistening to recognise the time they themselves expend in the name of their eating disorders.Describing one’s own self-regulation practices can often spark a similar recognition in others.This was true for Sandy, who, in the moments following this exchange, lamented how hereating disorder detracts from her creative pursuits.

The participants then envision recovery. More specifically, they envision a life not dictatedby the eating disorder and free of its restrictive limits. For Hannah, the goal is simple:

I just want to be able to go on vacation and not worry about where I’m going to eat. I wantto be able to go out to dinner with friends and just enjoy myself.

Linda shares Hannah’s vision of recovery, as evident in the following excerpt from my fieldnotes:

Linda explained that she has a friend who ‘has probably been eating disorder free for atleast 5 years’. Early in her recovery, her friend was a vegetarian and ‘all healthy like, refus-ing to eat certain things’. Linda’s mocking tone suggests she believed her friend’s vegetari-anism was merely an excuse to continue restricting certain foods. However, Linda thenadds, ‘Now she’s all about the steak and cake. We were at a friend’s birthday party lastweek, and she was like, “I think I’m going to have another piece”. She had another piece ofcake, just because she felt like it. I think she has one of the healthiest attitudes towards foodof anyone I know’.

What Linda finds most significant in her friend’s recovery is the freedom she experiences fromfood restrictions. No time is devoted to weighing each food choice. Rather, her friend is freeto eat ‘just because she [feels] like it’, a freedom that Linda’s tone suggests she envies.

Finally, the participants share brief glimpses and experiences of recovery. In contrast tothe group’s prognostic frame, which constructs eating disorders as requiring constant vigi-lance, the group’s motivational frame encourages participants to believe that recovery is pos-sible. Michaela’s account of the moment she first realised she was getting healthy offersone example:

I was at Starbucks and the thinnest woman I had ever seen walked in ... and I’d been intreatment for a while at that point and had seen pretty thin people. When the woman walkedin, instead of wishing I could be her, I actually felt sorry for her. ‘How are you even goingto drive home?’ I thought.

Michaela’s account demonstrates to the group that one’s thought processes can change. Con-sider also Kathleen’s comment regarding an upcoming bridal shower:© 2013 The AuthorSociology of Health & Illness © 2013 Foundation for the Sociology of Health & Illness/John Wiley & Sons Ltd

82 Jessica Koski

Four years ago, even a year ago, I know I would have had to go through all sorts of hoopsto make it happen. I would have had to call my mom and make sure she didn’t commenton my appearance and I’d have to struggle with facing all that food. Now, I am just reallylooking forward to seeing all my cousins. The food will still be there, but it’ll just be partof my day.

Such glimpses of recovery provide participants with evidence that recovery is possible.Motivational framing is critical in enabling eating disorder support groups to sustain

adequate participation. In constructing not only an image of, but also the possibility ofrecovery, the group’s motivational frame provides participants with a reason to continueseeking treatment and, more importantly, participating in support groups. Those who believerecovery is unattainable are unlikely to continue treatment or support group participation.

Collective identification: establishing the eating-disordered selfCollective identity is central to an SMO’s ability to sustain mobilisation for it instils both com-mitment and a willingness to take risks on behalf of the organisation. Participants must notonly cognitively recognise a shared trait but also experience an affective ‘we-ness’. In the caseof eating disorder support groups, this sense of we-ness is firmly rooted in a shared eating-disordered self, as evident in the following excerpt:

Christine recounted a recent discussion with her aunt. She shared with her aunt that she hadgained five or six pounds. ‘Five or six pounds?!’ her aunt exclaimed to Christine’s adoles-cent cousins. ‘That’s like 10 or 12 pounds for normal people!’ Everyone gasped. Emilyquickly responded, ‘Non-eating-disordered people are so insensitive’.

The line between ‘us’ and ‘them’ delineates eating-disordered from non–eating-disordered indi-viduals. Further note that the participants do not identify as sharing an eating disorder labelbut rather as eating disordered. The illness is located and rooted in the self.

‘Atrocity stories’ (Baruch 1981, Dingwall 1977) play a significant role in constructing thegroup’s collective identity. Here Katie offers one such account, focusing on a physician’sdisrespect and subsequent negligence:

Katie explained that she had researched special tests necessary as a result of her bulimiaprior to a recent appointment. When she relayed her findings to her physician and requestedthe tests, he simply replied, ‘It’s not my problem if you want to ruin your teeth’. Katie’saccount left the group aghast, including both facilitators, whose jaws dropped. Elizabeth,one of the co-facilitators, appeared particularly appalled, as she shook her head and rolledher eyes at the comment. Katie continued, ‘A week later, my kidneys failed. I had to gothrough five doctors until one of them would listen to me.’ Elizabeth responded, shaking herhead, ‘You knew something was wrong with your body, and no one would listen to you’.

Communal shock breeds affective connection. Such accounts also highlight sufferers’ unique,shared knowledge of their condition, which further fortifies the bounds of participants’collective identity and strengthens their affective bonds.

Jokes also contribute to the construction of participants’ collective identity. For instance,Julie joked that her nursing textbook’s treatment of eating disorders was ‘wrong’ and offered atest question as evidence: ‘The goal for someone with an eating disorder is to eat 100% oftheir meal. True or false?’ She quickly adds, ‘And it was true!’ The room chuckled inresponse. Heidi’s frustration with her stalled progress offered another opportunity for humour.



She first commented, ‘I mean, I can say all the things to myself that my therapist would’ andquickly continued, in a mocking tone, ‘If you have the power to keep yourself sick, you havethe power to make yourself better’. Both comments spurred a bout of collective laughter. Suchjokes assume and require shared knowledge, which in turn reinforces the participants’collective identity (Fine and DeSoucey 2005). Moreover, as with atrocity stories, laughterstrengthens the participants’ affective bonds.

The participants’ collective identification on the basis of a shared eating-disordered selfserves several ends. First, it yields strong affective bonds that create an environment ripefor sharing. Identifying on the basis of an eating-disordered self, as opposed to an anorexicself, for example, further minimises intra-group variation. It enables individuals sufferingfrom a broad array of eating disorders and at different stages in recovery to participate inthe same group. Additionally, rooting the eating disorder within the self establishes ‘eatingdisordered’ as a primary identity. This insures that participants remain committed to aneating disorder group specifically, regardless of what additional diagnostic labels they maycarry. The participants’ atrocity stories and humour also reject alternative prognosticframings (i.e., non-support group treatments), a process known as counter-framing (Benfordand Snow 2000). Finally, establishing eating disorder sufferers as the true experts breedsagency, which in turn encourages ongoing participation in the support group. Forparticipants, the path to recovery may appear long and potentially never ending, but if it isto be travelled, the eating disorder sufferer herself (and her fellow sufferers) possess criticalknowledge.

Linking mobilisation processes to participants’ collective illness identity

Eating disorder support groups’ framing and collective identification not only promote partici-pation, but also shape a collective illness identity (Barker 2002). More specifically, eatingdisorder support groups’ mobilisation processes impact on participants’ conception of eatingdisorders on five key dimensions: consequences, symptoms, time-line, cause and control(Leventhal, Meyer, and Nerenz 1980).

In emphasising the mental components of eating disorders, the group constructs eating disor-ders as highly consequential; one is not only physically ill but also mentally ill. Participantsfurther extend the group’s diagnostic frame by attributing a wide array of seemingly non-related and common symptoms to the eating disorder, which constructs eating disorders ashighly symptomatic or, in Barker’s terms, constructs a ‘highly permissive narrative that offersmany points of entry, tremendous flexibility, and few thresholds of exclusion’ (Barker2002: 289).

Framing recovery as requiring constant vigilance constructs eating disorders as chronic.Many participants question whether recovery is possible. For example, Brittany asked, ‘Areeating disorders like alcoholism in that you are never fully recovered ... you will always haveto be hyper vigilant?’ Another week, Ellen spontaneously exclaimed, ‘Will we ever benormal?’ Jen, seated to Ellen’s left, shakes her head with a knowing, yet depressed-lookingsmile. Another participant similarly shakes her head and utters a soft, yet definitive, ‘No.’

At the same time, the group’s motivational frame constructs recovery as a state of freedomin which the eating disorder no longer monopolises one’s attention and energy. Note the ten-sion between the group’s motivational frame, which suggests that recovery is possible, and itsprognostic frame, which constructs eating disorders as chronic. Participants themselves seemto recognise or at least experience this tension. Many question whether or not it is ‘morerecovered’ or ‘more disordered’ to attend the group. This tension itself demands additional© 2013 The AuthorSociology of Health & Illness © 2013 Foundation for the Sociology of Health & Illness/John Wiley & Sons Ltd

84 Jessica Koski

monitoring, similar to other aspects of participants’ treatment, and thus further contributes toparticipants’ eating disorder vigilance.

Finally, collectively identifying on the basis of a shared, disordered self shapes how partici-pants conceive of the aetiology of eating disorders. Eating disorders are not rooted in biologyor social norms, but rather a disordered identity. One participant described herself as broken.Some recognise additional precipitating factors but the disorder remains firmly embedded in adisordered self. Katie acknowledged her father’s contribution to her eating disorder but none-theless insisted: ‘It wasn’t my father sticking his finger down my throat’. The eating disorderis not external to the individual. Rather, it is the individual. In Becky’s words, ‘Most of thetime I just feel like a walking eating disorder.’

The participants’ collective identity further constructs eating disorders as uncontrollable.Admittedly, internalising the eating disorder could conceivably facilitate greater self-regulation.However, as ‘disordered’ selves, the participants are so deeply flawed that they cannot controlthe eating disorder. Emma’s frustration is illustrative:

I just want to throw my hands up in the air! I hate it because I can recognise my crazythoughts, but I can’t turn them off. It’s in my psyche.

Ironically, participants’ collective identity simultaneously establishes eating disorder sufferersas the foremost expert on their condition, which surely contributes to Emma’s frustration.

Discussion

Borrowing insights from social movement theory, this study explored how support groups sus-tain adequate participation. Participant observation in an eating disorder support group revealsthat a broad, flexible diagnostic frame increases the pool of potential participants. The group’sprognostic frame defines recovery as requiring constant vigilance. As a result, those who mightotherwise deem themselves to have recovered and cease participation continue to take part.The group’s motivational frame further encourages continued participation by providing partic-ipants with a vision of recovery and a reminder that such is possible. Finally, collectively iden-tifying as eating disordered creates affective bonds between participants that facilitate trust andpromote group cohesion, ensures that the participants remain committed to an eating disordergroup as opposed to another form of support group, and establishes the participants as true eat-ing disorder experts, which in turn affirms the centrality of the support group in treatment.Those same processes simultaneously construct a collective illness identity that characteriseseating disorders as highly consequential, highly symptomatic, chronic, rooted in the self anduncontrollable.

The data presented here are insufficient for a full evaluation of how support group mobil-isation processes impact on participants. However, using the participants’ own vision ofrecovery as a metric, this study suggests that eating disorder support groups may inhibitrecovery. For participants, to be ‘recovered’ is to enjoy a life free of the eating disorder, alife in which the eating disorder does not act as one’s primary interpretive frame. Yet eatingdisorder support groups emphasise the need for constant and ongoing vigilance. Participantsrecognise this tension, which itself becomes a source of stress and demands constant moni-toring.

Recent advances in health psychology lend further evidence that eating disorder supportgroups may have unintended and potentially adverse consequences. How an individual con-ceives of her illness significantly affects her physical, mental and social outcomes (Hagger and



Orbell 2003). Those who attribute a wide array of symptoms to their disease are more apt toavoid active treatment. The same is true for those who conceive of their disease as chronicand as having serious consequences. Such individuals are also more likely to suffer psycholog-ical distress, poor health outcomes and greater social disability. In contrast, those who believethat they can control their disease outcomes are more likely to seek treatment. Conceiving ofone’s disease as controllable and curable is also correlated with greater mental and physicalhealth and improved social functioning. Considered in conjunction with the results of thisstudy, such research suggests that the same processes that enable support groups to mobilisesuccessfully may inhibit recovery.

Eating disorder support group mobilisation processes may also further medicalisation.8

The group’s diagnostic frame promotes mobilisation by increasing the range of individualswho can and do identify as having an eating disorder. In short, the frame broadens the cate-gory ‘eating disorder’. The expansion of existing medical categories plays an equally signifi-cant role in advancing medicalisation as the creation of new medical categories (Conradand Potter 2000). Such findings support previous work demonstrating that the framing ofdisease may have unintended health consequences (Snow and Lessor 2010, Aronowitz2008).

This research contributes to our understanding of how macro-social factors shape illnessexperience. Scholars increasingly recognise that illness experience is influenced not only byindividual circumstances, subjectivity and interpersonal relationships but also by broader cul-tural and social structural forces (Pierret 2003; Klawiter 2004). To that end, many havesought to explore how class, gender, race and ethnicity structure illness experience (see forexample, Anderson et al. 1991, Bell and Apfel 1995, Blair 1993, Bury 1982, Castro 1995,Charmaz 1994, Corbin and Strauss 1988, Doyal 1995, Dyk 1995, Hill 1994, Lorber 1997,Ruzek 1978, Williams 1984). More recently, Klawiter (2004) has highlighted how socialmovements, in impacting on available treatments, access to information and the organisationand culture of care delivery, shape illness experiences. Here we see that a support group’simpact on a participant’s illness experience is a function of both individual-level identitywork and group-level processes linked to group functioning. Support groups represent anarrow form of SMO, but were we to extrapolate to the broader case of health socialmovements (HSMs), which must also attend to mobilisation, this research suggests it is notonly an SMO’s instrumental aims but also its necessary internal processes that shape andconstrain illness experience.

Eating disorder support groups admittedly represent only a single case. Certain factorsspecific to eating disorders limit the ability to generalise from this case to support groups moregenerally. Most notably, eating disorders are relatively poorly understood. Clinicians continueto debate both their aetiology and treatment (Striegel-Moore and Bulik 2007). Nonetheless,even in the case of clearly defined medical conditions there remains room for interpretation.Although eating disorder support groups may enjoy greater latitude in their framing, suchprocesses could conceivably occur in all support groups. As noted above, such processes mayalso occur in HSMs. Future research might continue investigating how support group and HSMmobilisation impacts on illness experience. Better understanding the framing and collectiveidentity processes that occur in such fora could allow clinicians to mitigate any unintendedeffects. Improved understanding might also enable health professionals and activists to employframes more deliberately and to more productive ends (Aronowitz 2008).

Address for correspondence: Jessica Powers Koski, Department of Sociology, NorthwesternUniversity, 1810 Chicago Avenue, Evanston, IL 60208, USAe-mail: [email protected]


86 Jessica Koski

Acknowledgements

An earlier version of this work was presented at the American Sociological Association’s AnnualMeeting in August 2008. I am grateful for the comments I received on that occasion. I would also like tothank Carolyn Chen, Gary Alan Fine, Steven Epstein, Carol Heimer and Charles Camic for theirgenerous and helpful feedback.

Notes

1 To be sure, not all scholars emphasise the benefits of support group participation. Some have, in fact,been quite critical (see, for example, Damen et al. 2000, Kaminer 1992, Zola 1993). My work is inline with this more critical scholarship in so far as I focus on the unintended consequences of partici-pating in a support group.

2 In practice, the distinction between instrumental and identity movements is not always clear (see, forexample, Bernstein 1997, Goodwin and Jasper 1999).

3 The relationship between self-help and social movements has been the subject of significant scholarlydebate (Katz 1993, Williams 1989, Wuthnow 1994).

4 Networks also promote mobilisation (McAdam 1986, McAdam and Paulsen 1993). Although bothinterpersonal and organisational ties surely contribute to participation in support groups and demandfurther investigation, the data collected for this study are better suited to exploring internal definitionalprocesses.

5 Interviews with participants might have offered additional insight but would have also threatened myaccess. Interviews would have highlighted my role as researcher and thus had the potential to disruptgroup functioning. Interviews would also have violated the informal norms of a group in which, tothe best of my knowledge, the participants had little to no contact with each other outside the weeklymeetings. Moreover, interviews would have required collecting participants’ contact information,which may have made some participants uncomfortable (given that they are known to other groupmembers only by first name) and, crucially, would have violated my initial agreement with the facili-tators to preserve participants’ anonymity. Believing participant observation to be the best availablemeans to investigate internal organic group processes, I opted to prioritise access.

6 DSM-V, due out in May 2013, eliminates the term refusal and considers an individual’s ‘restriction ofenergy intake relative to requirements leading to a significantly low body weight’.

7 Motivational frames typically supply the agency component of collective action frames. In this case,agency is a product of a collective identity that establishes the participants as the true eating disorderexpert. I expand on this observation in the section on collective identification.

8 Barker (2002) similarly argued that fibromyalgia syndrome self-help literature may promotemedicalisation.

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‘i'm just a walking eating disorder’: the mobilisation and construction of a collective...

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