The final study sample consisted of 14 participants (see Table 2 for summary of participant characteristics, compared to those who declined participation). As noted, all participants had received (N = 5; 35.7%) or were receiving (N=11, 64.3%) specialist outpatient or day-patient ED treatment in one of the four participating ED services.
[Insert Table 2 about here]
Three key themes relating to participants’ attitudes towards their ED symptoms prior to help-seeking were identified in the data: 1. Symptom egosyntonicity; 2. Gradual Reappraisal; 3. Feelings of exclusion from ED discourse. There was a clear temporal dimension to these attitudes, such that participants tended to move through these phases in the order presented. Each attitude was associated with distinctive implications for help-seeking (see Figure 1 for summary). The data was examined for differences according to participant characteristics (e.g. diagnosis; stage of treatment), but these did not appear to be associated with differences in the themes identified.
Phase 1: Symptom egosyntonicity
The majority of participants described that increased control over what, how much or how often they ate was the first change in their eating-related thoughts and behaviours they could recall. All participants who experienced increased dietary control (and resultant weight loss) described how this was not perceived as a problem, but rather were highly egosyntonic (i.e. positively appraised and valued).
“I just thought I was doing a good thing, sort of exercising more, trying to be healthy, trying to lose a bit of weight.” (Emily, 19 years old, AN)
Several sub-ordinate themes appeared to contribute to this initially positive appraisal.
Self-Esteem For most participants, increased dietary control and weight loss in the early stages gave them a sense of achievement and bolstered their self-esteem. This increased confidence was further strengthened by positive feedback on their dietary control and/or weight loss from friends and family.
“It gave me a sense of achievement and I felt good about myself.” (Christina, 19 years old, AN).
Coping with life-stress Almost all participants reported experiencing stressful life-events (e.g. relationship break-ups, university exams, moving to a new city). Several participants reported that dietary control provided a sense of control which they felt they lacked in other aspects of their life, therefore helping them cope with these stressful situations.
“As I got more stressed [eating]became the control mechanism. […] I didn't necessarily see it as a problem at that point. It was a way of dealing with the anxiety.” (Emily, 19 years old, AN)
Implications for Help-Seeking
Several participants described how their positive appraisal of their symptoms in the early phases meant they lacked motivation to seek help. When it did occur, help-seeking had several distinctive characteristics.
Parent-led help-seeking One participant (Emily, 18 years old, living with her parents) described how, early in her ED, she was resistant to seeking help. However, her mother sought help on her behalf, bringing up her concerns in an appointment with a general practitioner (GP) for an unrelated health issue.
“[my mum] said “I'm really concerned about her weight and what she's eating, it doesn't seem right”, and then the doctor sort of grilled me on how I was eating… I was really angry [with her].” (Emily, 19 years old, AN)
Help-seeking for others Several participants described how, early in their ED, friends (and sometimes family) raised concerns about changes in their eating behaviour or their weight loss and suggested they should seek support. In some cases, participants described being resistant to accepting help, but going through the motions of professional help-seeking to placate friends or family.
“I think that I went [to the GP] kind of to appease [my flatmate]” (Gemma, 20 years old, OSFED)
Phase 2: Gradual Reappraisal
The majority of participants described that, whilst initially they interpreted their change in eating-related thoughts and behaviours positively, this appraisal changed over time. Several sub-ordinate themes appeared to contribute to this gradual lowering of their initially positive appraisal of these symptoms.
Binge-eating and Compensatory Behaviours Several participants reported that over time they started to experience bingeing and compensatory behaviours. These behaviours lacked the social desirability of dietary control and were therefore more negatively appraised.
“I became more understanding of [my condition] with the bingeing, [whereas] with the restricting I felt like I was just following a healthy diet.” (Charlotte, 21 years old, BN)
Compulsivity The majority of participants described how over time their ED behaviours started to feel less under their control, and more automatic and compulsive. Several participants reported that stressful life-events (e.g. relationship break-ups; moving home to parents) were associated with increased compulsivity.
“[At the beginning] it felt like a choice rather than [...] now, where I can't help it.” (Gemma, 20 years old, OSFED)
Physical and Mental Health Many participants described how they started to feel the impact of their symptoms on their physical and mental health (e.g. fatigue; muscle pain; low mood; anxiety).
“I could feel the physical effects [of bingeing and purging] and I started to get worried about that…My hands were shaking quite often… I’d noticed blood in my vomit…my gums were bleeding a lot.” (Sasha, 20 years old, BN)
Social Functioning Several participants identified that symptoms began to negatively impact many life domains (e.g. social life; career; family life).
“After a couple of months, it starts affecting everything else, you withdraw from people and other things in your life […]. I think it was then when I started thinking this really isn't great.” (Max, 24 years old, OSFED)
For some participants, impact was conveyed via comparison of their own experiences of their peers and what they perceived as “normal”. For several participants, they became particularly aware of the impact on their functioning following a big life-change (e.g. moving to a new city; starting university), when they found themselves unable to function in the way they would like to (e.g. making new friends; being fully engaged in their course). However, the gradual nature of this reappraisal (and ongoing shame and embarrassment about symptoms) was such that many participants experienced a period of uncertainty about whether they had an ED or not, and/or ambivalence towards the idea of seeking and receiving help.
“I was sort of seeing some of the patterns and thinking that's not quite right, but I don't really believe what it is, and I don't really understand what it is.” (Max, 24 years old, OSFED)
Implications for Help-Seeking
This attitudinal phase had several important implications for help-seeking. Help-seeking was more likely during this attitudinal phase than in the previous phase; however, it was on a knife-edge (i.e. as likely to happen as not).
Help-seeking at transition points
Several participants reported that changes in their life situation (e.g. starting university or a new job; moving to a new city) were associated with symptom reappraisal. Some participants wanted to change their symptoms but did not seek professional help because they hoped that this “fresh start” or “change of scene” would be sufficient help in itself, thereby forgoing the embarrassment associated with help-seeking.
“I thought like new job, I’m in a new place as well, [I can cope on my own].” (Niamh, 23 years old, BN)
Other participants described how a life-event did prompt professional help-seeking, often because symptoms had worsened or were preventing them from making the most of their new situation.
“The change of location… was what [pushed me to seek help], because it was sort of the idea of a fresh start [….] I wanted to make the most of being in London.” (Emily, 19 years old, AN)
Scaffolding by others
Many participants described focusing on their family’s and friends’ responses to their symptoms to help them decide whether to seek help. For many participants, friends and family not raising concerns about their symptoms, or doing so in a vague or generic way (e.g. “is everything OK?”), were interpreted as disconfirming their suspicions that they might have an ED. Such interventions therefore did not bolster their confidence in seeking help, and in fact increased their belief that such problems were shameful or embarrassing.
“I felt it was kind of just brushed under the carpet. To me it was like, maybe I don't have an eating disorder […]. It just made me ignore it even more.” (Christina, 19 years old, AN)
In contrast, several participants described how detailed enquiries about wellbeing or explicit statements of concern often prompted help-seeking. Several participants described how others assuming some of the responsibility for help-seeking and providing practical assistance (e.g. registering for the doctor; scheduling appointments; accompanying the participant to appointments) was intrinsic to successful help-seeking whilst they felt uncertain and ambivalent.
“My friend messaged me like “I think you need to go to the doctors”. She came with me to the doctors to sign up, because I wasn't even registered…she came to all my doctor's appointments with me.” (Olivia, 21 years old, BN)
Help-seeking for co-morbid concerns
Several participants described how seeking help for issues related to their ED symptoms (e.g. low mood; muscular pain), whilst also highly resistant to addressing their eating problems.
“I felt the physical effects but emotionally I felt different. I didn't really want to stop.” (Sasha, 20 years old, BN)
Phase 3: Feelings of exclusion from eating disorder discourse
Following a period of gradual reappraisal, the majority of participants described coming to a point of problem awareness i.e. where they perceived their symptoms as a problem for which they needed help. However, participants also reported awareness of dominant constructions of EDs. When participants felt they did not fit within this discourse, they believed that asking for help would be embarrassing and shameful, and their concerns would be rejected. Two key exclusionary aspects of discourse were identified as follows:
“You have to be extremely thin to have an Eating Disorder” Many participants expressed the belief that EDs are characterised by extreme low weight. They described how they did not see themselves as being sufficiently low weight to have their concerns accepted, both by friends and family and by key professionals.
“I was afraid they wouldn’t see me as ill. I thought that if I told any of my friends, they would just laugh in my face and tell me “that’s not true””. (Gaia, 22 years old, AN)
“Eating Disorders are Teenage Illnesses” Several participants described beliefs that EDs were “immature” and “childish” (Charlotte, 21 years old) illnesses, commonly experienced by teenagers. Participants anticipated having their concerns rejected by others because they were not teenagers.
“I am 22 […], I'm not 16. How did I get into this? Why am I not able to snap out of it? It's such a stupid issue, and I'm just ashamed of it.” (Gaia, 22 years old AN)
Implications for Help-Seeking
This attitudinal phase had several important implications of help-seeking. Whilst help-seeking during this phase was more likely than in previous phases, the majority of participants reported that feeling excluded from discourse about EDs - and associated shame and embarrassment - impacted help-seeking. When help-seeking did occur, it was typically orchestrated in a manner designed to minimize embarrassment. Accordingly, it had several distinctive characteristics.
Preference for Self-sufficiency Several participants described how feeling excluded from ED discourse and ensuing concerns about embarrassment were associated with them preferring to cope with their problems alone.
“I was a bit embarrassed or cautious about telling my family. I tried very much to handle it by myself.” (Charlotte, 21 years old, BED)
Several participants described circumnavigating help-seeking from family and friends or key professionals, choosing to cope with their problems alone.
Utilisation of Self-Help Resources Several participants described turning to self-help resources to avoid the embarrassment associated with help-seeking. Participants noted that, whilst such resources often did little to alleviate symptoms, they did increase their confidence that their concerns would be taken seriously. It appeared that resources which incorporated other (non-adolescent) people’s experiences of EDs were particularly impactful, and helped participants feel less embarrassed.
Seeking help independently of parents Several participants described considering accessing professional help independently of their parents’ involvement to avoid embarrassment. However, participants perceived it as difficult to do so. Several participants described how they did not go to key professionals (e.g. GP: teachers), for fear any information confided would be shared with their parents. Several participants did seek professional help following assurances (e.g. online research, verbal confirmation from GP that details would not be shared with their parents). However, in one case a participant’s fears of parental involvement was realised (i.e. automated appointment reminder was sent to parents’ contact details).
Indirect Disclosure of Difficulties
The majority of participants described that feeling excluded from ED discourse and resultant fear of rejection and embarrassment meant they found it difficult to communicate their difficulties, to both close others and key professionals.
“I just couldn't speak about it [with the GP] because […] it's embarrassing, and it's just, I didn't really know what to say?” (Olivia, 21 years old, BN)
Several participants described how this meant they sought alternative, indirect ways to communicate their need for help.
Written Communication Several participants described how communicating their difficulties face to face was associated with a particularly high potential for embarrassment. For many participants, using a written form of communication (e.g. social media post; email to university counselling service; university registration form) was integral to their help-seeking.
Generic communication of distress Several participants described the prospect of using the term “eating disorder” or specific diagnoses (e.g. AN; BN), or outlining in specific detail their eating or compensatory behaviours, as particularly embarrassing. For many participants it appeared important to be able to express their difficulties in vague or ambiguous way (e.g. using non-specific descriptions; crying) and still be understood and taken seriously.
Physical health concerns In contrast to the non-specific approach previously described, several participants described focusing on their physical health concerns to communicate their difficulties in a way that they deemed likely to be acceptable and least embarrassing. Participants described scheduling appointments with healthcare professionals ostensibly for physical health concerns (e.g. medication review with psychiatrist; blood test results from GP), even if their hope was to receive help for their eating problems.