Abstract
Chronic anorexia nervosa (cAN) is a challenging presentation for the clinician. Motivation to recover is low, and outcomes are often poor. Within this study. six participants, currently in treatment, were interviewed. These interview transcripts were analysed using Interpretative Phenomenological Analysis. The results highlighted five superordinate themes resulted from the analysis and these referred to the following points: (1) ‘making sense of AN’, (2) ‘experience of treatment/treatment’, (3) ‘interpersonal relationships’, (4) ‘battling with anorexia’ and (5) ‘staff pessimism in the treatment of cAN’. These results highlighted how the self is entwined with anorexia nervosa and thus making it incredibly difficult to perceive a life without cAN.
Introduction
Chronic anorexia nervosa (cAN) is an increasingly common presentation for clinicians (Strober, 2004). Motivation to fully recover is frequently lacking which results in life being repeatedly shaped around cAN (Tierney and Fox, 2009). Often, the clinician struggles to find a way forward with these clients, as they will discuss their wish to recover, but at the same time, appear to be totally unable to elicit any change in their life. Geller et al. (2012) discuss how this group frequently present in the clinic with a number of contradictions, as they do not want to stop their eating disorder, but they want to have a better quality of life. Data from outcome studies highlight the challenges a clinician faces when working with cAN. It has the highest mortality rate of all the psychiatric disorders, with 5%–8% dying from conditions directly relating to their AN (Herzog et al., 2000; Steinhausen, 2009), and treatment outcomes are still poor (Le Grange and Lock, 2005).
Tierney and Fox (2009) discussed that treatment options for cAN remain limited and this may be due to this subgroup of patients having different needs than people with recent onset AN. This issue of differing treatment raises the question of how to define people with AN to the fore, as attempts to categorise clients as ‘chronic’ has been problematic (Tierney and Fox, 2009). However, factors such as the length of illness/unsuccessful treatment attempts (Noordenbos et al., 2002; Strober, 2004), entrenched patterns of food restriction, pervasive ‘anorexic cognitions’, identity intertwined with anorexia nervosa (AN) and Body Mass Index (BMI) being maintained under 17.5 (Strober, 2004) are now broadly accepted as defining features of AN. In our review of the literature, it was striking that there were virtually no research studies that have examined cAN from the perspective of the sufferer. Consequently, this study was designed to explore sufferer’s perceived experiences of living with and being treated within an Eating Disorders Unit (EDU) for their cAN, using Interpretative Phenomenological Analysis (IPA) (Smith et al., 2004).
Methodology
Sampling
As discussed by Smith (2004), IPA is concerned with the lived experience of a particular phenomenon, thus it prefers a small, homogeneous sample as it aims to balance the identification of shared themes/experiences with the idiographic nature of experience (Smith, 2004). Six participants were recruited from two eating disorders services. Patients were admitted when they were either at high risk physically (e.g. low BMI, <14) or high psychiatric risk (e.g. self-harm). The mean age of the sample was 27 (range 19 – 50). The mean duration of illness was 7 years (range: 6–23 years). To participate in the research, participants needed a diagnosis of AN with an illness duration of 6+ years (see Uher et al., 2003). Each participant had been assessed by various psychiatrists with considerable experience in diagnosing AN, using Diagnostic Statistical Manual of Mental Disorders–Fourth Edition (DSM-IV) (American Psychiatric Association (APA), 1994).
All of the participants were in receipt of psychological therapy (various approaches) and had received at least two different therapies over the course of their AN. All the participants had BMIs in the 14/15 range at the time of the interview, and unfortunately, no data were taken of lowest BMI (see Table 1 for full demographics). Even the participants who had been ward the shortest time (e.g. Anna) had had many prior admissions. It is noteworthy that Anna had lived with cAN for significantly longer than the other five participants, and this represented a concern about the homogeneity of the sample for an IPA analysis. However, it was decided to keep her data in the study as there were no notable differences in the qualitative data when compared to the other participants.
Participant information.
MHA: Mental Health Act
Procedure
The interview was developed on the back of published work that pertains to this participant group (e.g. Tierney and Fox, 2009). Six broad questions were devised, and these asked about participants’ understanding of the development of their anorexia and their perceptions and experiences of living with AN. These questions were as follows: (1) Can you tell me about how you developed anorexia? (2) What reasons do you think that anorexia has continued to be prevalent in your life? (3) What have your experiences of treatment/therapy been like? (4) How do you think professionals view anorexia? (5) What have your relationships been like with other people with anorexia? (6) How do you see your life in the future?
Prompts and follow-up questions were used, and the interviews were recorded and transcribed. The interviews ranged from 60 to 90 minutes.
Analysis
Data were analysed using the procedures for IPA, as outlined by Smith et al. (2004). Within the transcripts, an initial list of preliminary themes was identified through line-by-line coding, with themes being grouped into associated clusters, and these were compiled for each interview. Themes were compared from all interviews, and these were then assembled into sub-themes within higher-order categories (i.e. across all the interviews). The emergence of a theme in the majority of transcripts was considered appropriate for inclusion in the list of higher-order themes (Smith et al., 1999). Member checking was undertaken at the end of each interview, as a summary was provided. None of the participants disagreed with the summaries or the coding of the transcripts.
Reflectivity
The researchers were a clinical psychologist in training and a clinical psychologist/researcher with an interest in eating disorders and AN. The clinical psychologist in training was a young White woman who had an interest in eating disorders but no specialist expertise, while the first author (J.F.) had a number of years of experience of working with AN and cAN.
Results
As all the participants in this study were inpatients, this context influenced the data and the subsequent analysis of the data. For example, participants often struggled with the actual eating part of their treatment and they made many references to this within the interviews. Likewise, staff were important interpersonal contacts, and it was felt that this allowed the researchers to gain some important insights into the actual experience of treatment.
The analysis resulted in five interrelated themes. The theme ‘making sense of AN’ highlighted how the development of AN and cAN was a helpful method of coping with adversity that was valued highly by the participant. The theme ‘staff pessimism in the treatment of cAN’ explored how staff often had a rather nihilistic and pessimistic approach to the treatment of cAN and would often profess to not knowing what to do. This appeared to be particularly true for staff working within outpatient settings and general medical wards. The theme ‘interpersonal relationships’ was broken down into two sub-themes regarding general relationships and relationships with staff. The theme ‘battling with anorexia’ explored how participants’ relationship with cAN changed over time and had begun to lose its value.
Theme one – making sense of the AN
Participants described how the onset of the AN was often not realised or denied and took a long time before women admitted they were struggling with an eating disorder. This recognition seemed to be linked to the concern of others and, occasionally, that they were struggling to eat. This process of ‘making sense’ appeared to strengthen their relationship with their AN, as all the participants described how they came to realise that AN addressed difficulties in their lives that were present before onset. Common perceived causes for the AN were negative evaluations of the self in comparison to others, grief and loss and difficulties with the management and expression of emotion. The data suggested that AN was an effective way of coping with adverse feelings and experiences. Through the data, the onset of AN was described in a positive frame, with participants discussing how AN was protective (i.e. giving control), as it increased their confidence by doing something within which they felt successful (e.g. losing weight when others could not).
I think that I just wanted to prove that I had control and that I could, I don’t know: Be thinner and achieve that. Part of me had been taken away from me and I wanted something that was mine and that I could keep. (Diana)
AN was clearly valued, as it gained attention from others, as prior to developing AN Participants appeared to be lonely and disconnected from others and, by becoming unwell, others became much more focused on them and their needs, perhaps out of a sense of worry. Through this experience, participants started to develop a new identity, with AN at the heart of who they were. Although it could be argued that these factors are important in any case of AN, it seemed that this knowledge about what led them to develop AN kept them ill. It was, as if, that knowing what is needed to be addressed to help recovery was too much, and it was safer and easier to maintain their AN. It is important to note that this does not imply that they voluntarily chose to stay unwell, rather it was a product of being scared, fearful and overwhelmed. It seemed that in reality, the participants felt that they had no choice at all.
Theme two – experience of treatment/refeeding (including the use of nasal gastric tubes)
Within the EDU, one of the core treatments is the supporting of people with cAN with refeeding. As expected, this was a particularly difficult area for the participants of this study and this theme refers to the intra personal effects of starting to take increased levels of food. The interpersonal aspects of treatment will be discussed in subsequent themes. As described above, participants recognised that the onset of their AN was insidious, and they often struggled with the start of treatment, including the use of nasal gastric tubes (NGT). At one of the units used for recruitment, NGT are used when patients struggle to take nutrition via their mouth, either because of their severe eating disorder psychopathology or they have a physical complication that means NGT is the best way to refeed. Generally, the actual experience of being refed was viewed as distressing. However, there were some nuances in the data, as one participant identified feeling relieved that professionals took the control from her, as she could deny responsibility for taking nourishment. However, some participants reported that NGT feeding led to an increase in other symptoms, and this can be seen clearly in the following quote by Daisy: I went on a tube (NGT) and it seemed a bit easier to handle like knowing they were taking control of it but then all of the OCD’s came in with checking the amounts so then I started refusing bits, like siphoning off bits, I was really like quite misbehaving like getting rid of it. (Daisy)
What was apparent was how cAN gave participants a sense of control and a method of coping. Participants who were going through the refeeding process often led to an intense feeling of losing control, and this had a profound impact on the participants. It appeared to increase feelings of vulnerability, and the refeeding process was generally perceived as being incredibly difficult and, at times, traumatic.
The experience of living with cAN was wrapped up with how interviewees perceived themselves. Where this created real tension for both clinicians and participants was around non-negotiated feeding (i.e. restraint feeding). On the unit, a small number of patients would be subjected to restraint feeding as they were unable to accept nutrition on a voluntary basis. This is very difficult for both patient and staff, and it is used only when there are no further options available to the team. However, for the participants with cAN, the experience of being restraint fed led to an entrenchment of the eating disorder. This can be seen in the following quote: I fought as hard as I could, I did everything. It was distressing and it just made me go more into my shell and more into my illness because I felt safe with my illness. (Carla)
Theme three – interpersonal relationships
Subtheme – general relationships
Across this theme, participants discussed how they struggled with relationships and often did not feel that they had the skills or the confidence to make or keep friendships or other relationships in their life. This seemed to keep them ‘trapped in their cAN’, as these difficulties in establishing relationships with others appeared to reinforce negative attributions of the self and others. In many ways, this seemed to be the defining feature of cAN, as the AN seemed to exacerbate social difficulties which led to an increase in the social isolation. This vicious cycle appeared to keep people locked in their cAN. It was the author’s sense that the experience of living in hospital exacerbated these difficulties, as being on the ward often meant living away from family and friends: Now I’m shit scared of having to make friends again and I just feel like I’m unapproachable and I can’t make conversation, and I’m not easy to talk to and I’ll be a bad friend anyway. (Daisy)
Where these interpersonal difficulties were most pronounced was upon discharge from hospital. For example, Elizabeth discussed how ‘real life’ interpersonal problems, such as conflict and disagreement, meant that being discharged from services without support was experienced as being very difficult. In the following quote, Elizabeth described her difficulty in managing her AN at home, as both the social problems and the cAN were dominant in her life and this left her with marked suicidal thoughts: I was living at home and it was an absolute nightmare, so much tension, they were awful to live with and my eating disorder was so strong, it was aggressive. I just hated myself so much and there were suicidal thoughts. (Elizabeth)
The tension for Elizabeth appeared to be a battle between the self and the anorexia, and how interpersonal stresses and isolation appeared to be linked to the eating disorder severity. For Elizabeth, being alone within a high-octane emotional environment appeared to significantly fuel/exacerbate the AN ‘voice’ within the person.
Subtheme – relationships with staff/therapists
Given the context of this study, the importance of the therapeutic relationships with staff was paramount in the data. Trust and belief in practitioners’ expertise were identified as fundamentally important in their perception of effective care. A key part of these interactions with staff was that they were sensitive to their needs of living with cAN and were able to set appropriate and meaningful goals. Participants also valued staff being able to work with them on everyday issues, such as managing their emotions. For example: Being quite supportive and talking to you about your emotions and things. Yeah, and I have been, well I use them to speak to. (Anna)
Staff appeared to have a particularly important role for the participants, and they would often seek them out to talk to rather than other people on the wards. The data suggested that the participants’ experiences with services prior to coming onto the ward were very mixed. Often, their prior outpatient support/treatment was not effective in helping them to put on weight and prevent admission. Some of the participants discussed that their negative experiences of initial treatment/help was related to the perceived inexperience and the lack of skill of the therapist, and this is discussed by Betty: She wasn’t very good at all. She didn’t seem, well I don’t know if she was, she didn’t seem particularly experienced and erm I she went off on long term sickness and I was picked up by somebody else.
However, when Betty was referred to another clinician, she spoke of the difference of having someone who understood the phenomenological aspect of living with cAN, such as living with an ‘anorexic voice’. Betty stated, She helped me identify me as a person and me as the eating disorder as separate like NAME the eating disorder and NAME the person and we would have a conversation between one another, and even to the point where I would physically move seats. She helped me to see how the anorexic side of me was being really harsh on the normal side of me.
Others spoke about how they found therapy to be counterproductive, as they would attend therapy but still lose weight. For example, Carla discussed, She probably felt like she was flogging a dead horse, but it kind of made me feel a little bit good as well because it made me feel like I was a good anorexic.
In many ways, the discussions regarding interpersonal relationships for people with cAN were the most revealing about the internal world of the participants. They often felt quite distant and isolated from others but were keen to seek out relationships that were caring and supportive. However, these relationships often became a theatre where the AN could exert its influence, as if it was almost scoring points by ‘getting one over staff/therapists’. Despite this, the participants recognised that they both wanted and needed staff not to be ‘duped’ by the cAN and be allies in their fight against cAN. This theme of ‘battling with anorexia’ is discussed below.
Theme four – battling with anorexia
The participants’ relationship with their AN was dynamic; it was often hated, but also valued. As discussed above, AN had played a significant role in their lives, especially in helping the participants define who they were. It gave them control, but over time, the AN took this control away from them. A similar process seemed to occur with the impact of AN on their ability to form relationships, as initially it gave the participants a sense of confidence, but over time they had started to withdraw, leaving them feeling isolated. What was interesting about this dynamic relationship between the self and the cAN was that it was often experienced as a ‘battle’ that they felt destined to lose. Participants described being ‘anorexic’ for so long that it would always be a part of their lives. They appeared to desire complete recovery, although they did not express this as a possible reality. For example, Going to work, developing interests, going on holiday, good chats with my husband, and nights in, nights out. These would all be fantastic! I think truthfully because I’ve had it so long that I will always have an issue with things, but I just want to learn to manage it. (Diana)
Although participants engaged in this ‘battle’ with their cAN, it was still a part of their identity. This often left them feeling confused and upset about how they could want to get ‘rid’ of something that was a part of them, but this same part kept bringing them back into hospital and interrupting their lives. This led participants trying to find a ‘middle ground’ where they expressed the importance of being able to manage the disorder, while being able to live their lives. Participants mentioned that engagement in society and the development/maintenance of interpersonal relationships were construed as important in their perceived ability to manage the illness.
Theme five – staff pessimism in the treatment of cAN
In contrast to the discussion above, where some participants described how staff were supportive, the data also highlighted that staff (both within the inpatient unit and outpatient services) could be pessimistic in their recovery and often seemed overwhelmed by their stories. These negative feelings regarding their care and treatment seemed to lead to being passed between services, and this seemed to reinforce the participant’s anorexic identity due to the uncertainty of treatment and loss of control. These experiences of being passed around different services, especially non-eating-disorders services (e.g. medical wards), engendered feelings of hopelessness and a sense of being abandoned by professionals. Participants discussed how these negative approaches by certain staff exacerbated their feelings of isolation, which reinforced their wish to ‘stay with the anorexia’. Interestingly, a number of participants also discussed how living with cAN and not having access to skilled staff was tinged with feelings with sadness. These feelings seemed to be related to a sense of grief of missing out on life. This can be seen in the following quote: … just like, I suppose that I felt like they had given up on me so I gave up on getting involved, just like I can’t be changed so what’s the point really. I feel sad now looking back and just thinking I wish I had the knowledge that comes with age and experience. (Betty)
Discussion
Across the analysis, participants discussed that they had a complex experience of living with cAN. They defined themselves by having AN, but they wished they would move on in their life without it. They craved to have meaningful personal relationships but struggled to be with others socially. AN was both cherished and hated. Interviewees discussed how it helped them to manage painful feelings and emotions, but they also recognised that it kept them stuck with no real way forward. Treatments were often seen as being aversive (i.e. restraint feeding), and the nihilism of some staff for their future would lead these women to retreat back into the ‘perceived’ safety of their cAN. This finding does fit with others from the literature, as Long et al. (2012) found that patients often identified meal times as a ‘battleground’ and staff were inconsistent in supporting patients. Participants often, but not always, experienced staff as being at a loss not knowing what to do and seemed to have given up. There were palpable, heartfelt moments in the research interviews where participants described the experience of being moved from one unit to another, often further and further away from home. This constant feeling of rejection and abandonment reinforced their cAN and the sense of helplessness.
The theme of making sense of the AN highlighted how participants strove to understand what their AN meant for them and what function it performed in their lives. It appeared that the relationship between the self and AN was complex as the AN was both a way for patients to define who they are and a suppressor for finding other ways to understand who they are (e.g. Higbed and Fox, 2010; Tierney and Fox, 2009). It seemed through this theme that the individual with cAN was left with a real fear of what life would be like without AN as a ‘safety blanket’. These self-defining problems were magnified when the individuals were confronted with the perspective of losing their ‘anorexic status’, via refeeding. The process of being refed and putting on weight challenged the very way in how they perceived themselves, and this seemed to be behind the real distress that participants exhibited when confronted with weight gain. So often in the literature, this distress is often reduced to the fear of gaining weight (e.g. DSM-IV, APA, 1994), while the data from this study would suggest that this is a rather superficial understanding of the phenomenology of cAN. Nordbø et al. (2006) reported on data drawn from 18 AN participants who discussed how AN held many functions/purposes for them, as it kept negative emotion at bay, gave a sense of mastery and helped achieve a sense of identity. These themes of emotional avoidance and AN as a key part of their identity certainly seem to fit with the data presented in this study. Indeed, it does seem that these issues/processes become much more fixed and non-amendable to change within cAN.
As discussed by Higbed and Fox (2010), the relationship between the self and the AN is a dynamic, as the AN appears to almost separate from the self and takes on a phenomenological reality in the mind of the individual with AN. Tierney and Fox (2010) discussed how this separation of AN appears to take the form of an ‘anorexic voice’ and this ‘voice’ starts off as being comforting but quickly turns into a critical, attacking ‘voice’. Within the theme of ‘battling with the anorexia’, this intrapsychic battle was discussed by the participants, as they faced a continual struggle in preventing the AN from ‘taking over’. This risk of being overwhelmed by the AN was discussed by Higbed and Fox (2010) who found how people with AN have the constant threat of losing themselves to the AN. However, for the participants in this study, they had found a position where they were able to limit its attempt to overwhelm them, but the consequence of this was that they faced a battle every day. This was especially true on the ward where staff were trying to challenge the eating disorder.
The largest theme that arose out of the analysis was the interpersonal relationships theme. This theme highlights how the participants struggled to build meaningful relationships in their lives and whatever relationships that they had were put under pressure by being on the ward (e.g. disconnected from significant others). It is long noted that people with AN have marked difficulties in social relationships (e.g. Krug et al., 2013; Schmidt and Treasure, 2006; Tierney and Fox, 2009), and as discussed above, one of the key findings from previous research has been how the ‘anorexic voice’ offers the individual with AN a type of relationship which helps to protect against loneliness (e.g. Tierney and Fox, 2010). Through the data, there was discussion about how important nursing and therapy staff were in the participant’s lives. It seemed that having a clear understanding of their difficulties, offering support and being able to open up about their emotions were key ways in which staff could help the participants. Pemberton and Fox (2013) undertook a qualitative study into how people on an EDU ward perceived their own emotions and how they felt staff responded to these emotions. It was clear in this study that patients/clients felt that it was vitally important for staff to help them to express their feelings and to realise that it was often very hard for them to share their emotions. This study’s data do seem to echo these findings, especially as all the participants described situations where they met staff who did not fully understand their cAN and were pessimistic about their recovery. It is important to note, however, that this study also showed how patients on the ward appeared to look for idealised care in their relationships with staff, and this was associated with feelings of being ‘let down’ by staff not having a ‘perfect knowledge’ of cAN. This may well explain some of the findings presented in Theme four; however, this is a contentious point and would need to be explored via future research. Federici and Kaplan (2008) looked at what factors people with AN felt were important in their recovery, and these included ‘internal motivation to change’, ‘developing supportive relationships’ and ‘perceived value of the treatment experience’. It may well be that clinical teams need to find the right balance between offering a good, supportive therapeutic relationship that does not become idealised by patients. This would be a very interesting topic for future research.
Limitations and directions for future research
The main limitation of this study was the lack of an outpatient group of participants. Furthermore, none of the participants were drawn from differing ethnic groups and were recruited from a specialist inpatient unit. However, the methodology demanded a small homogeneous group, and including a broader sample should be incorporated into future studies on cAN. It is proposed that future research needs to be undertaken with a methodology that encourages larger and a more heterogeneous sample. Likewise, only collecting data from two inpatient units limited the sample size of this study, and future studies should look to extend the data collection component of this study.
Conclusion
This study found that people with cAN defined who they were by their AN and how they felt that they were locked in a constant battle with their AN. Participants discussed how they looked to staff to be ‘allies’ in this struggle, but they would often face staff (mainly on the pathway into specialised services) who lacked knowledge about cAN, and this often led to feelings of pessimism/reduced hope in their struggle with cAN.
Footnotes
Funding
This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.