In total fourteen young women were interviewed. Characteristics of the study population are shown in Table 1. The main themes are described below and illustrative quotes are provided on these themes. Additional illustrative quotes can be found in Appendix 1. Before turning to the results in more detail, one important general result of the study should be mentioned: all participants were remarkably capable of reflection on their diagnosis of AN and their experiences with regards to the relationship between AN and their identity.
AN in relation to identity
Participants’ stories on the relationship between AN and what they perceived as their identity varied widely. What becomes clear throughout the data is that different views on this relation can coexist and that how one views this relation is something that can change over the course of the disorder. Participants’ views on the relation between AN and identity can be placed on a spectrum, ranging from AN being their identity, or being inseparably intertwined with identity as one end of the spectrum, to AN being something alien to one’s own identity at the other end of the spectrum.
“I have a strong sense that it is not who I am, that it just is something from the outside.” –
At the end of the spectrum where participants’ view AN as their identity, two different variants may be distinguished. Participants describe that at times when AN was most severe, often early in treatment or during relapses, they felt completely absorbed by AN and that it appeared to them as if they had become AN. In this variant it seems as if there is no room for a different narrative, other than the narrative of AN, which seems to have taken over the personal narrative, or has eliminated the need for a different narrative.
“It was so deep inside of me, it was so strong. At that point my body, and my mind as well, just didn’t feel like mine anymore.” – Participant O
Other participants describe AN as something that has gotten intertwined with, and incorporated in their identity. It seems that AN has gotten incorporated in the narratives, and is perceived as interwoven with identity.
“ ‘Who am I without an eating disorder?’ is not something I ask myself. I am with my eating disorder. Without it I don’t exist.” – Participant C
In the middle, between the two ends of the spectrum, perceiving AN as identity versus AN as something alien, a third alternative view on the relation between AN and identity can be recognized. This view encompasses the idea that AN is a different side of the person. Some participants describe AN as an authentic side of who they are, whereas others perceive it as an inauthentic side of themselves. This view of AN as another side of the person differs from the view held by participants that perceive AN as interwoven with their identity. The difference is in the degree of intertwinement described by participants. When AN was perceived as a different side of the person, it was described as something closely connected, yet at the same time as something separate from identity. Participants perceiving AN as their identity describe it as completely interwoven with identity. Among those participants who perceive AN as a different side of the person, some describe AN as being inauthentic to their true identity, as an entity that somehow had gotten attached to them, whereas other participants describe AN as an authentic, yet different side of their identity.
Upon looking at the proposed spectrum, one possible expectation could be that when participants experience AN as something alien to them, it would be experienced as an external entity. Another expectation could be that when a participant experiences it as something internal, it would consequently be experienced as a part of identity. Yet, this is not the case. What becomes apparent throughout the data is that participants that perceive AN as alien do not necessarily experience it as an external entity. The following quote by participant N illustrates this:
“For me, AN truly is something that is on the inside.. But I wouldn’t say that it is a part of me. … In general, I don’t believe it is part of my identity, so in that way it does feel alien. ” – Participant N
One explanation, given by participants, for why AN was perceived as something external but at the same time as something from the inside out, is the fact that AN affected their thoughts and their feelings. Participants perceived thoughts and feelings as part of what constitutes their mind, and since minds were experienced as something inside of them, AN was experienced as something from the inside out and not as an external entity.
Experiences of externalization
All participants stated that they had come across language used to externalize AN, either by HCP’s within treatment or within the social sphere, by family-members or spouses. Questions such as “is this a choice out of personal taste of from your eating disorder?,” or statements such as “This is not the healthy you, this is your eating disorder,” were reported by many participants.
The data on the use of language in order to help patients recognize AN as an illness and create a greater distance between person and AN indicate that participants hold ambivalent feelings towards this externalizing approach. Participants described this approach, in helping them to view AN as something separate to them, as being helpful, yet difficult at the same time.
“Sometimes it [externalization] was all right, but sometimes it was quite annoying. It’s a good thing that they ask, but they ask it a lot. Not everything stems from your eating disorder. And especially on the inpatient ward, it varies between nurses, but some of them see everything, all your behaviour, as something from your eating disorder.” – Participant J
An important finding is that participants’ opinions on this approach were not static, but could differ per moment. Participants described it as being difficult in the short run, but they would also perceive it as necessary for recovery in the long run, since it could help them recognize which behaviour and which thoughts were evoked by AN. Some participants stated that it was helpful since they felt as if they needed someone else to clarify for them what belonged to AN and what not. Yet, at the same time, when it was pointed out that something participants thought, said or did was part of AN, it could be very confronting. When HCP’s referred to certain behaviour as diseased, this confronted participants with the fact that they were ill, which could cause irritation. Nonetheless, through referring to certain behaviour as part of a disorder, it was confirmed to participants that there was an actual illness, which could extenuate feelings of being personally responsible for AN.
Dismissed as a person
Some participants reported that they perceived HCP’s attempts to separate AN from a healthy part of the person as hurtful. It resulted in participants feeling as if they were being dismissed as an entire person, not solely AN.
“They [HCP’s] will say: ‘We’re not trying to destroy you, we’re trying to destroy your eating disorder,’ but it’s so close together, and it is in you so deep, that it does surely feel like they’re attacking you.” – Participant O
Participants reported difficulty in keeping in mind that it was AN that was being dismissed, rather than their ‘healthy’ selves. They explained this as an effect of the feeling that AN was so closely related to their identity, whereas others reported it having to do with the fact that they were still so absorbed by AN that they experienced difficulty in distinguishing AN from their selves.
Experiences of distrust and wrongful accusation
Another view towards an externalizing approach reported by some of the participants was that they sometimes felt as if HCP’s, or family-members, referred to behaviour as part of AN when in their own opinion this was not the case; it could result in the idea that the person making the comment viewed everything the participant said as originating from AN. This was described as frustrating or sometimes even aggravating, and could result in a feeling of not being trusted or believed, or the feeling of being treated unfairly.
“I have gotten better at making these choices for myself, and when there is something that is truly me, then I get mad if people don’t believe me. Because I have thought about it deeply, and then they still say “But isn’t that your eating disorder?” Yeah, that’s obnoxious. … Then I tend to think: ‘Come on, believe me, it’s the truth.’ ” – Participant E
Some participants also mentioned that they felt as if they were not taken seriously, because of AN, which in turn could lead to frustration.
“My parents were taught at the clinic to distinguish the child from the eating disorder, and that not everything their child would say was her, that it could be eating disorder. So, quite often, if I did something stupid or behaved badly, my parents would say “Oh, just let her talk, it is the eating disorder speaking”. It would infuriate me, I’d think: ‘Do you really not take me serious anymore?’ “ – Participant M
Participants reported that, initially, when someone referred to specific behaviour as part of AN, independent of whether this was a correct or incorrect observation, AN would take over control. They described feeling as if in that moment, they would become AN and mentioned that in that moment, it was extremely difficult to change the behaviour that led to the comment. Participant K said that, for her, this had to do with the fact that she felt as if she was already battling against AN, but it was still perceived as diseased behaviour by others. When she was confronted with this fact, she would turn towards AN, rather than change the behaviour at that time, since she felt like “it’s never good enough” (Participant K). Usually, it would be possible to reflect on that specific moment at a later time, and realise that it might indeed have originated from AN. This phenomenon was mentioned by many participants. The initial reaction of AN taking over control occurred independent of whether it was a HCP or a family-member making the comment. However, one participant did mention that for her, it was easier to accept that some behaviour was part of AN when it was a HCP that pointed this out to her, instead of a family-member.