A way of relating to life; myself and others - a thematic analysis of patients' experience of having an eating disorder

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Understanding the deeper meaning of living with an eating disorder is significant from a theoretical standpoint and crucial for identifying factors that maintain or inhibit these disorders. Patient-centred studies offer valuable insights into the lived experience of eating disorders, highlighting their impact and interaction with various life phenomena. This qualitative study aimed to capture the meaning and experience of living with an eating disorder from a patient perspective. Methods: Interviews were conducted with 15 women suffering from eating disorders and comorbid depressive symptoms prior to the start of treatment. Data were analysed using reflexive thematic analysis. Results: Two dimensions of relating to the eating disorder were identified. The first dimension, "Having an eating disorder - a relentless relating," described the present experience and was divided into two themes: “The eating disorders impact on relating to myself” and “The eating disorders impact on relating to others”. The second dimension "Relating to the eating disorder over time” followed a timeline with four themes; “The eating disorder as a way to handle other difficulties”, “From control to consistent loss of control”, “The whole existence is impinged” and “Hard to see a life without the eating disorder”. Conclusions: Living with an eating disorder involves a constant, disorganized relationship to the eating disorder that creates alienation from significant others and one's own body, making it challenging to relate to oneself and the world without eating disordered thoughts and behaviours. Over time, the eating disorder becomes increasingly ego-syntonic, making it hard to envision life without it. Therefore, treatment should highlight interventions to help individuals view the disorder as distinct from themselves, in reconnecting with their bodies, and acknowledging their needs and wishes. Given that eating disorders often become the central focus of life, treatment should also aim to foster new life goals, social engagement, improve interpersonal skills, and develop a meaningful life beyond the eating disorder. Eating disorder Patient perspective Lived experience Qualitative study Ego-syntonicity Harmful relationship Alienation Social withdrawal Self-observation Externalization Figures Figure 1 Plain English Summary To capture the meaning and experience of living with an eating disorder from the patient's perspective, 15 women with eating disorders and depressive symptoms were interviewed before treatment. Reflexive thematic analysis was used to analyse the data. Two main dimensions of relating to the eating disorder were identified. The first dimension, "Having an eating disorder - a relentless relating," described the present experience and included themes about how the disorder affects their relationships with themselves and others. The second dimension, "Relating to the eating disorder over time," followed a timeline with themes showing how the disorder evolved from a coping strategy to a pervasive force affecting their entire existence. Living with an eating disorder means constantly experiencing a chaotic relationship with the disorder that distances individuals from others and their own bodies, making it challenging to imagine life without the disorder. Treatment should help individuals see the disorder as separate from themselves, reconnect with their bodies, and acknowledge their needs. It should also foster new life goals, social engagement, and improved interpersonal skills for a meaningful life beyond the eating disorder. BACKGROUND Eating disorders (ED) is a category of psychiatric disorders for which different theoretical perspectives have been used ( 1 ) and are usually regarded as multifactorial diseases ( 2 ). How certain vulnerability factors can increase the risk of developing an ED or what problems arise due to EDs has also been a topic of research ( 3 ). Studies have reported that living with an ED is not only about weight, body, and shape. It also involves difficulties in the fields of emotions, self-esteem, interpersonal and cognitive function ( 4 ). Furthermore, comorbidity with other psychiatric disorders such as depression is common ( 5 ). Hence, there are various factors affected by an ongoing ED, which in turn impact on the perception and experience of living with an ED and the individual's life and self-consciousness. Understanding the meaning of living with an ED on a deeper level is relevant from a theoretical point of view. It is also crucial to capture relevant aspects of maintaining and inhibiting factors from a clinical perspective. Research on what maintains an ED or what hinders recovery, regardless of the reasons behind its occurrence, can be complemented and enriched by research from the patient’s perspective on the experience of living with an ED, how the ED can be influenced by and affect various phenomena in life. Previous qualitative studies on the experiences of ED patients or their relatives have primarily been conducted during or after ED treatment, and mainly included patients suffering from Anorexia nervosa (AN) ( 6 – 8 ). The studies have suggested that ED may be experienced as all-encompassing. Some patients compare it with living with an internal coercion where the ED is dictating the terms of the patient's life as well as the lives of their loved ones ( 9 , 10 ). These studies have mainly focused on experiences of receiving ED treatment or the experience of moving towards recovery from an ED in the context of treatment. In a qualitative study by Lindstedt et al (2018), AN adolescents reported that their lives were put on hold during their time in the ED treatment, and that relationships and social contexts became crucial factors in the recovery process ( 11 ). Regarding the experiences of living with an ED, women aged 18–36 years living with Bulimia nervosa (BN) reported experiences like having a secret inner war with the mind, where ED behaviours carried out in order to calm one's inner self. In shame and with worries of being judged by those around them, they lived in fear of being discovered with isolation from others as a result. They also described a fear of letting go and living without BN, as the ED had become a significant part of their identity ( 12 ). In a study by Bremer et al. (2023), patients with Binge eating disorder (BED) perceived living with BED as a challenging addiction. They presented the BED like living in a negative spiral, with the most inhibiting impact of the ED being thoughts and feelings. The patients struggled with low self-esteem and experienced a lack of understanding from others, resulting in shame. Being diagnosed with an ED was however perceived as a relieving validation ( 13 ). In a systematic synthesis of qualitative findings Gustafsson et al. (2021) covered experiences of the ED and ED treatment from both patients, family members and health care professionals, and concluded that there were important differences in views regarding treatment approaches and expectations between staff, loved ones and, the patients. The authors suggested that more studies are needed regarding patients’ perspective of living with different forms of EDs and which factors facilitate or hinder recovery ( 14 ). METHOD Design The aim of this qualitative study was to capture the meaning and the experience of living with an ED from a patient perspective. For the identification of themes related to the experience of having an ED, a reflexive thematic analysis was employed ( 15 ), based on interviews with patients who had been diagnosed with an ED and were awaiting the start of treatment. Participants The participants in this study were Swedish women (aged 17–39 years) with an ED and co-occurring depression, who were awaiting the start of treatment, as part of a naturalistic study on Interpersonal Psychotherapy (IPT) ( 5 , 16 ). Forty-eight patients participated in the IPT-study, of which 25 were interviewed using the SSRF-ED. The participants were interviewed by their assigned therapists at their regular ED unit prior to the start of therapy. They had previously been assessed within the Swedish national patient register (NPR) framework ( 17 ), and encompassed a mixed group of EDs, predominantly BN or related conditions, along with a mild to severe depressive episode. Interview The data analysed in this study were derived from interviews conducted before the start of treatment in the previously mentioned study. The symptom specific reflective functioning interview for eating disorders (SSRF-ED) by Skårderud et. al. 2012, contains 13 questions focusing on the individual's experience of the connection between the ED and thoughts, feelings, bodily sensations, situations, and relationships. The interview also includes questions about the ED's function and impact on life ( 18 , 19 ). SSRF-ED, is rooted in the mentalization tradition ( 20 ), and is an adaptation of the symptom specific reflective functioning interview (SSRF) ( 21 , 22 ). The interview was part of the study project's comprehensive pre, mid, and post measurements with the intention of evaluating any changes in reflective functioning (RF) in relation to their ED during the therapy process. However, the purpose of this present study was not to rate RF. Nevertheless, a qualitative analysis of the interview responses in SSRF-ED was considered feasible in order to document the participants´ experience of having an ED. The questions in SSRF-ED and its semi-structured format makes it possible to capture relevant phenomena related to experiencing. However, the strength of this choice of data is that it is taken from a mixed group of individuals with EDs, and the interviews are conducted before the treatment begins. Considering that previous qualitative research mainly has examined experiences of ED treatment or views on the ED after recovery, we view this design as a relevant addition ( 23 ). Selection of interviews Of the interviews conducted, 15 were deemed to have sufficient technical quality to be used for the study's purpose. Regardless of the saturation principle in qualitative research, all the initial SSRF-ED interviews were selected for this study. During the analysis, saturation was deemed to have been reached after just over half of the interviews, but we nevertheless chose to include all the chosen 15 interviews in the analysis. The interviews were approximately 30 minutes long, except for two interviews which were 65 minutes and 15 minutes respectively. Thematic analysis In order to capture the informants' subjective experiences of having an ED, the interviews were processed and analysed with Braun and Clarke's model for reflexive thematic analysis (TA)( 15 ). In Table 1 follows a description of how the collected data has been processed and analysed is presented. Table 1 Process of Reflexive Thematic Analysis Step 1: Familiarization with the data The 15 recorded interviews were reviewed several times and were transcribed. Notes were taken regarding what caught the interest, both during the review of the interviews and during the transcription process. In an inductive approach, the interviewer's questions (based on the SSRF-ED-interview) and comments then were removed from the transcripts so that further analysis would only be based on what the patients talked about regarding experiencing their ED. An earlier version of this analysis was conducted by Jacobsson, Ljung and Bäck (2023) in accordance with stage three in the TA-model ( 24 ). A deepened analysis of the data (stage 3–5) was then made by Bäck and Gustafsson. Step 2: Coding Transcripts were carefully read through, and with focus on the research question, segments in the text were summarized into relevant codes that described the meaning of the data (semantic codes) Some latent codes were also identified on a more interpretive level. All codes were finally compiled together with the data relevant to each code. Step 3–5: Generating initial themes, developing, and reviewing themes, refining, defining and naming themes Once the codes had been identified, work began on developing initial themes. The codes that resembled each other were merged, after this the merged codes were examined to see what they had in common. It became clear that there were several ways to thematize the data material based on the coding. After further processing, initial themes were designed with the purpose and question of the study in mind. All codes were then read through to see how frequently they recurred in each theme. When relevant themes and sub-themes were determined, these were given names and descriptions, which were subsequently refined. Step 6: Writing up Writing the result section, to describe the themes and sub-themes and to select suitable quotes that illustrated each theme provided a final opportunity for refining the analysis, such as determining the best order in which to present the themes. RESULTS The analysis of the participants' experiences resulted in two different of living with an ED. One theme; Having an eating disorder- a relentless relating , is about the direct experience in the present, and was divided in two parallel subthemes dealing with relating to oneself and relating to others. These two parallel subthemes highlight the participants' experience of an entrapment in relation to themselves, others, and the ED. The ED was experienced as something ever-present, which they inevitably adapted and related to. The other dimension/theme was described through an overarching theme of Relating to the ED over time. This theme follows a timeline where the informants experiences of having an ED changed over time, from initially seeing the ED as a coping strategy, but where a feeling of control changed to loss of control as the complexity of ED symptoms increased over time and finally impinged the entire existence to an extent where it was hard to imagine a life without the ED. The results are summarized and illustrated in Fig. 1 , and each themes and subthemes are described in more detail below. Relating to the ED over time This dimension describes how the participant's relationship to the ED changed over time, often initially being perceived as a solution to some other problem in everyday life. Over time, however, the ED became more cemented, as a part of the person, which created an uncertainty about what a life without the ED would be like. This contributed to an ambivalence around the way forward towards a healthy life without the ED. Based on these descriptions, we organized this theme as a timeline with four linear subthemes. The ED as a way to handle other difficulties. The onset of the ED was described in the context of external stressors, disputes, losses, or adjustments, which became hard to handle. ED behaviours emerged as a way to cope and were described as a temporary consolation in the interest of the informants own safe space to control their body when other things in life were out of their control. I fell into a depression, and, because of the circumstances, I imagined taking a little better care of myself by eating more regularly but yeah… And eventually it went overboard somehow and in retrospect I have figured that it became a way to eventually feel in control, a terrible control issue…which I applied to food and through workouts. It was not foremost about being unsatisfied with my body or it did not begin as a result of that… instead it was about control I presume. There was a lot of losses and pressure around me back then... (JENNY 30 years) The ED was described as something else to focus on, a comfort or a way to regulate emotions around problems in family or peer relations. Like later when I began, you know, like when it got too much for me emotionally in life, then it turned into me putting like, I had to put my feelings somewhere and then it turned into like an obsession with working out and focusing on my body. (SARA 19 years) I know, like I believe a lot of it comes down to me having high expectations on myself… But also, with… both dad and mom too I believe... Because how do I put it… Mom is all about to pull one´s weight and to perform well and yeah, very, very much so, she has always been like that. And with dad, … (KAYA 22 years) From control to consistent loss of control The initial experience of control seemed to change over time as the pursuit of control became too demanding and inevitably led to a perceived loss of control. An increasing entanglement where strict self-imposed standards and over controlling was viewed as an integrated part of the personality in an unreflective way. Yeah, it feels like you aren’t enough, whatever I do like, like yeah… This thing with me eating rigidly and working out a lot…it is a lot about this thing with control..., the fact that I want to keep track of what I do, and I want to see, yeah, simply put control myself. In some way… Yes, because then I feel... yes, but then I lose control and then I start binge eating. Because I don’t have the energy to stay in control for so long because it is wearing that as well. It just happens. (LYDIA 23 years) The whole existence is impinged. The participants described how handling the ED became their primary concern, and that school or work became a secondary task that also had to be taken care of. Being in a competitive or stressful occupational context tended to lead to stricter and more dichotomous ED-rules. This created a vicious circle where the participants withdrew from important areas in life when they did not feel that they could perform according to their own standards, and thus their whole existence was controlled by the ED. Well…when they are as strongest it is all about that, more or less, I mean it is, all about getting as perfect of a day as possible. Yeah, and everything else is a little bit in the way because I have to have it my way. And only my way. (LYDIA 23 years) Hard to see a life without the ED It was difficult for the participants to imagine a life without the ED. They could however describe moments of meaning and engaging contexts; both professionally and in their spare time, where they, for a while, could shift focus to other areas in life, like spending time with loved ones, being out in nature or focusing on something bigger than oneself. It makes things easier to have things to do that are not connected to the anxiety-triggering things. To maybe be outside on a long walk with the dogs or meeting a friend for a chat. (KAYA 22 years) There was a longing to approach life with a broader perspective, and they felt that the ED impeded this goal. However, these moments were described like brief pauses, and the idea of what life would be like without the ED seemed hypothetical and incomprehensible. The participants' thoughts about a life without being sick were concrete with reflections embedded in an ED mindset. Naah… hard. Can’t even imagine how that would be like… Would probably have been happier at least… (SARA 19 years) Uhh, I would have managed my studies in another way maybe… I would thereby maybe have a better self-esteem... if I would have felt that I had like top-grades in all subjects… which I could have without any problems if I could be focused on my studies. (JENNY 30 years) It would be a lot, a lot better, I mean I know that. I mean I would definitely get involved in things a lot more than what I do now. And really become that outgoing person. I mean… Right now, it has been too little…, before I always let people in, I always wanted to help people and I had all the energy and all that… and now I often feel that I do not have the energy for anyone because I can’t even cope with myself… kind of like this. So, it would be a lot more fun, much easier and much better. (SUE 20 years) Having an eating disorder - a relentless relating This dimension/theme describes having an ED as a relentless relating meaning that the participants’ emotions towards their ED were entangled in a way where the ED was seen as a part of one's own person rather than a condition. The ED was experienced as something ever-present, which they inevitably needed to relate to in every situation. It was described as life doesn't work without the ED, but at the same time life doesn't work because of the ED. We organized this dimension in two themes describing the EDs impact on relating to oneself and the EDs impact on relating to others . The EDs impact on relating to myself. The ED was described as something ego-syntonic, that affected every area in life. It was described as an obvious intertwined part of oneself, like a matter of course. The ED became a way of understanding oneself and a way to take care of oneself, albeit in a harsh and judgmental way. The informants seemed to find it difficult to reflect on themselves without filtering oneself through their ED. This way of relating seemed to make it hard to be close to yourself and your body. The patients reported both an invading closeness to their ED thoughts and at the same time a dismissive distance to themselves in an invalidating way. It is such a big part of how I feel (…) I feel so much better if I am comfortable with my body. If the scale has showed a number that is fine like, or yeah, isn’t that high, then I like myself a lot more and feel so much better and am so much more satisfied… the entire day can be impacted. (…) About feelings it is like, I don’t really know which affects which… if it is the fact I feel fat that makes me sad or the other way around, but if I feel depressed or angry or sad or worried or something like that, then I often feel bigger, often feeling big and fat. It turns into not just me feeling miserable, I´m fat and ugly too. (MARY 24 years) Although the ED had a large negative impact on life, ED behaviours were also described as helpful to create a sense of control, a way to deal with emotions and other inner sensations. Restricting oneself, bingeing and purging could be described as calming and regulating of various difficult experiences. There are quite a lot of different thoughts and feelings. Maybe the inability to feel grounded in myself and notice... now I am mad, now I am mad at this person… or becoming sad or becoming tired or, daring to figure out those feelings. There are quite a lot of feelings being suppressed. (…) The food then becomes an escape, a pleasure and yeah, a refuge, I guess. (JENNY 30 years) However, the ED was not only used to regulate specific negative affects in specific situations, but it was also often described as an automated and natural part of regulating oneself in general. So like when I ate, then I got a kick out if it, but of the opposite kind. And I guess I am still doing that, mostly, when I am, …it could be when I am happy as well … not just when I’m feeling down… but when it turns into strong emotions then, like… then it turns into me wanting to calm myself by eating. ( TILLY 22 years) In contrast to the entanglement between the individual's experience of herself and the ED, the participants described their own bodies as something ego-dystonic outside themselves, something that they were forced to live with. The body was described as separate from oneself, as a subject to invalidate and to judge för letting them down. The informants described their bodies as something disobedient, something that needed to be controlled and regulated. Not that good, I… I think about it very often, I mean myself and the body, like in two parts. I mean it is something that I,.. No but it is like my persona, my personality or my ego.. and then it is like the body…that I am forced to live with. Yes, I feel like that often, like it is always me against my body. (TILLY 22 years) This way of relating seemed to make it hard to be in contact with one´s body. Inner experiences such as vulnerability was described as concrete bodily sensations like heaviness or lightness. The experience of one's own body could be linked to the individual's mood and emotional experiences, for example in the form of the body flowing out or growing, difficulties in moving in different body positions due to how the body felt and a sense of pain in different body parts that the person was dissatisfied with. These experiences were typically described like something to dismiss and disregard. When the body feels unpleasant, I mean when you feel.. it is almost as if, someone is sitting and pinching, I mean like almost phantom pain, someone sitting and pinching the back of the thigh or on the butt or at the belly. (LOU 23 years) A great discomfort was described when other people touched them, leading to difficulties with physical contact and intimacy. Overall, the body dissatisfaction was described as an obstructive barrier between themselves and other people, an inhibitor to build relationships and thus led to increased isolation. The EDs impact on relating to others. Having an ED affected the individual's social interactions and relationships with others to a great extent. The ED was described almost like a harsh partner in a destructive relationship. Each situation needed to be adapted to the requirements of the ED and often the participant chose to refrain from activities with other people in order to avoid lying or compromising with rules linked to the ED. The participants felt the need to defend their ED behaviours in relation to loved ones, which could lead to open or hidden conflicts with important others. I mean I have chosen to end quite a few relationships and it is possibly because of this I can't decide everything when someone else is involved, like what to do, what to eat, when to eat, activities, and stuff like that You have to adapt to others… so I have consciously made these choices to keep relationships short and superficial, because I don't know how I'd react if things got more serious or lasted longer. It's also these feelings of either someone else breaking it off or me doing it, so it's better if I do it myself, because I don't know how I'll feel down the road about my body or food. (CAREN 27 years) This often led to withdrawal and isolation in the long run. The informants described an ambivalence around relational needs to others and presented an experience of feeling lonely, even in the company of others. They also felt that relatives were not able to fully understand the complexity of having an ED. Albeit the participants own choice to be by them self, a fear of being alone was presented because they feared that they couldn´t control the urge to binge. When I am alone it generally gets worse in every way. Either I don’t eat anything and eat very restrictively when I am alone and trying to avoid all types of food I mean. Or if I am alone, it can also turn the opposite way, I might binge eating or yeah, eat and throw up and eat normal-sized portions as well and throw up. And then when it comes to situations with dinners and stuff like that with people, then it is usually the case that I eat but then go and throw up afterwards because I want to in some kind of way show that there aren’t any issues and that I can eat this. (MARY 24 years) The ED was described as the big secret that they were keen to keep hidden. They wanted to be able to talk more openly with loved ones about how they felt, but this was hindered by fear that they would be hindered from engaging in ED behaviours if they were to let other people in. These contradictory desires became an exhausting vicious circle that led to an emotional loneliness and isolation. I don’t think that (that) many people believe I am this unhappy with who I am, I have two sides. The “outside” with others, where you are.. where everything goes very well and there aren’t any problems and like that. So, I think a lot of people would be like, oh, or like are you that unhappy, are you like that…… (LOU 23 years) Relationships with others were also complicated by exhausting social comparisons about looks or achievements. The participants own notion of what others might think of them as a person were filtered through a demand for perfection and food rules. A kind of self - invalidation by proxy . Comments from others could be interpreted as pressing criticism based on one's own high demands on oneself. This made it difficult to relate on others for support and contributed to the feeling of loneliness. It becomes…. I mean I don’t think they actually put that much pressure on me but to me, like me, where I am at the moment it feels like quite a lot and then it very often like, like it triggers it. And then I have some, or mostly one friend who has had an ED themselves but not gotten help with it so with her especially I feel like we trigger each other quite a lot. (TILLY 22 years) Another factor that made it difficult to lean on others for support was a desire to protect those around them from knowing the true nature of the ED. This became an unfortunate vicious circle where withdrawal from others led to loneliness, which in turn made the participants even more dependent on having the ED to turn to. DISCUSSION The aim of this study was to capture the inner experience of living with an ED from a patient perspective. The identified themes could broadly be understood as an unconditional relating with the ED, something that can be described as" “a relentless relating”. The individuals carry the ED with them constantly. Initially, serving as a coping mechanism for other burdensome aspects of life, gradually evolving into something increasingly intricate yet simultaneously inherent and difficult to imagine to be without. When participants speak about themselves, others in their lives, or about the ED, an entanglement between ED thoughts and the individual can be discerned in a manner that could be interpreted as ED becoming integrated into the individual themselves. This is comparable to an inner voice or a kind of harmful relationship that leaves little room for interpersonal relationships. The individual expresses ambivalence towards the desire to feel understood by and to get close to loved ones, while simultaneously feel shame and the need to hide the ED contribute to withdrawal or living a double life. The ED as an integrated part of oneself The finding that the ED becomes increasingly ego-syntonic over time, as an integrated part of the individual, and that they cannot speak about themselves, their self-perception, or their emotions without filtering it through the ED, is consistent with previous ED research, primarily conducted with AN patients, describing the ED as an inner voice a part of the identity, or as a different side of the self ( 25 – 27 ). Research conducted on different ED conditions, such as BN, AN and BED, demonstrates similar findings, even though the inner voice of AN has been studied the most ( 28 ). The experience of symptoms being perceived as an integral part of oneself has been studied in other conditions such as suicidal thoughts in depression ( 29 ), anxiety disorders, and substance abuse ( 30 , 31 ). However, ego-syntonic, and ego-dystonic experiences are primarily described in EDs and Obsessive-compulsive disorders (OCD) ( 32 , 33 ), in the sense that symptoms are both experienced as significant suffering and a lifesaver in distress. This contradictory relationship with the illness is primarily found in compulsive conditions characterized by loss of control, obsession, and affective intolerance ( 33 ). More comparative studies across psychiatric conditions on these issues are recommended. A harmful relationship with no place for others Due to the voice’s coercive nature and impact on self- esteem, patients’ relation to their ED has in previous research been compared to a relationship with elements of physical and emotional abuse that do not allow space for a life outside of the relationship with the ED, forcing the individual into social withdrawal ( 34 ). Forsén Mantilla et al. (2018) showed that comprehensible relationship patterns between patients and their ED emerged in the same way as a real-life relationship. Patients in that study tended to experience their ED as controlling and domineering. These patterns were found to hold true regardless of the ED diagnosis ( 35 ). Despite being harsh and critical, patients often experience affiliation towards their ED, ( 25 ). Similar to our findings, the ED has been described as a helper in dealing with and avoiding negative emotions, providing a sense of safety and protection ( 27 ). Regardless of whether this integrated part of oneself is dominating, demanding, or motivating, patients have been able to attach positive value to their symptoms i.e. consistent with needs, goals, and ideals. This duality could possibly be a contributing factor when trying to explain why patients are often ambivalent about change and recovery. However, it has been shown that the more ego-syntonic thoughts about eating and weight related behaviours were, the more controlling and guiding the symptoms became ( 33 ). Despite negative consequences such as losing relationships with significant others and sacrificing other aspects of life, previous findings indicate an unconditional need to remain close to the ED in an almost symbiotic manner ( 36 ). This aligns well with the findings of our study, which indicate that the relationship with the ED not only affects the individual's relationship with oneself but also their interactions with significant others and social environments. Interactions with family members and friends become strained, with others perceived as threats to or even competitors with the relationship to the ED ( 37 ). The entanglement with the ED makes it difficult to be part of a relational context. Similar to the participants in this study, Levine (2012) highlighted how individuals with EDs may struggle to relate to others when they strongly identify with their ED, although the participants in our study expressed an ambivalent longing for understanding and intimacy ( 38 ). Additionally, Bachner-Melman et al. (2023) discussed the difficulties individuals with EDs face in developing mutuality in relationships, as they tend to either overly satisfy the needs of family members and friends or meet the needs of the ED ( 39 ). In a meta-analysis by Cozi and Ostuzzi ( 40 ) relational competence among individuals with EDs were examined. The results demonstrated an increased challenge for ED patients in developing self-agency and relate to others. Various ED diagnosis tended to exhibit different relational problems, some with ambivalence in relationships or complete withdrawal from oneself and others ( 40 ). As a consequence of the ED, conflicts with significant others, and sometimes other interpersonal vulnerabilities issues of loneliness has been highlighted among individuals with EDs ( 38 ). In the review by Levine ( 38 ), loneliness was accompanied by both intra- and interpersonal conflicts, which manifested somewhat differently across various ED diagnoses. The findings underscore the importance of helping individuals with EDs in developing healthy relationships ( 38 ). The Body as something ego-dystonic In contrast to the ego syntonic entanglement that our study highlights between the patient's perception of themselves and their illness, a division between the self and the body is described, where it becomes as if the patients filter their experiences of themselves, their needs, and their well-being through invalidating disordered thoughts, which serve as the guide for what is right and wrong. Participants' way of discussing their relationship with their own bodies was detached, fragmented, and can be likened to so-called somatoform dissociation, something that has been identified in individuals with ED in previous studies ( 41 , 42 ). It has been suggested that individuals with EDs use their bodies to solve various types of emotional and relational problems, a phenomenon referred to as concretism, linked to difficulties in understanding their own emotional states ( 43 – 45 ). In our study, participants also mention ED behaviours and body contempt as a way to cope with events in life that evoke emotions – the internal seems to be concretized, and emotional words become physical sensations, for example, feeling light when one is happy, etc. Skårderud and Fonagy (2012) further described how the state of pretend mode may manifest in ED patients. The body and emotions feel unreal, as if they do not belong to the person themselves, often leading the patient to experience emptiness and meaninglessness ( 46 ). Clinical implications From a clinical perspective, the results of this study show that ED treatment may primarily need to focus on the individual's ability to see their symptoms from the outside and themselves with their feelings and needs from within. The ego syntonic state of the ED, the vicious bond between the individual and their ED, and the dissociation towards one’s body, could possibly explain the ambivalence in relation to change. It may be difficult for both treatment providers and loved ones to reach the patient, without the communication and understanding of each other is being harmed. It is hard to work with your relationship with yourself and others or be ready for behaviour change if you do not first break the magic of the ED. ED symptoms need to be clarified as symptoms of a condition in an individualized and validating manner ( 47 ), symptoms and behaviours that do not represent who I am, but rather an illness that I suffer from and which I can overcome ( 4 , 5 ). One way to make ED behaviours and ED thoughts more ego-dystonic is through externalization, which can be done in various ways within different treatments. The aim of externalizing a psychiatric disorder is to help patients perceive the disorder as something separate, rather than as a part of the self, but as an illness that has great negative influence on life and requires treatment. Viewing the ED externally can help patients to accept treatment ( 26 ). However, previous research does not solely indicate externalization as helpful; it can be experienced as invalidating, with the patient not feeling seen as a person or being taken seriously unless it is based on the patient's current symptomatology and its unique relation to their ED ( 48 ). By creating a gap between the disordered thoughts and the individual's experience of what they feel and desire, the patient can access mentalization, affect awareness, and what they desire in life together with others. Björk and Ahlström (2008) highlighted how recovered patients no longer perceived the ED as an integrated part of themselves. They expressed a desire to engage in life in terms of social contexts, life goals, and relationships ( 49 ). However, it is a challenging step to become available to let go of your ED. It has taken up most of the patient's living space and has crowded out both relationships, activities, and various development opportunities for many years. This can be a grieving process, where the patient may need to find alternatives to turn to in order not to experience abandonment or go on the impulse to return to the ED in need of support ( 27 ). An important aspect in ED treatment may be to motivate and support the patient in reorienting themselves in life and to recognize which relationships and social contexts are beneficial for their recovery ( 11 ). A systematic review by Leonidas and Dos Santos (2014) examined the importance of social support in recovering from an ED and they argue that treatment also should focus on the relational aspects of EDs rather than solely the eating-related symptoms ( 50 ). It has been suggested that learning to accept oneself and manage conflicted relationships is an important aspect of recovery ( 51 ). In our study, participants expressed experiencing relief from their ED when engaging in meaningful activities with others. However, they also reported feeling a distance or loosing relationships due to their ED. Participants in our study could sometimes compare the ED to a harmful relationship. Previous research, which equates the relationship with the ED with a relationship with a significant other, suggests that ED treatment should encourage patients to rebel against their ED ( 47 ). Seen from this perspective, important factors in breaking up from an ED could include ways to receive a higher level of agency and self-validation, but also building social support, being able to lean on family and friends and move forward. Strength and Limitations A strength of this study is that it presents an in-depth exploration of the perspectives of patients on how they experience having an ED. Similar studies have primarily been conducted after the completion of treatment and have mainly focused on patients' experiences of undergoing treatment, recovering from their ED, and have predominantly involved patients with AN. The participants in our study represent various types of EDs, in different stages, with comorbidity with depression. The interviews were conducted before the start of psychotherapy and focused on the patients' experiences of the illness itself. In these aspects, the study captures areas within the field where there is a knowledge gap. The study, which was conducted on 15 patients, all of whom are Western women, has limited representativity and generalisability. More studies on patients' experiences, unaffected by the healthcare system's views on the illness and its solutions, need to be conducted, preferably from a transcultural perspective. We, the authors, and researchers of this study, are all Western psychotherapists with varying levels of experience working with ED patients. We have substantial theoretical and clinical knowledge regarding the psychological phenomena mentioned in ED research. We are aware that this preunderstanding influences how we interpret and assimilate the data. As explained in the methodology section, we consciously moved between a semantic, inductive analysis where the content stands on its own with a focus on what the participant says, and a more deductive analysis focusing on how the participant describes their experience, involving more reflexive interpretations and capturing themes on a more latent level. Moreover, an interview guide primarily designed to measure reflective function regarding current symptoms, SSRF-ED, was used. The interview highlights different areas that can be affected by ED in various ways. Although the purpose of our study was not to assess participants' ability to reflect on their ED, but rather to capture the experience and impact across different life areas, one cannot rule out that participants' responses could have been influenced by the original content of the interview guide. Nor can we exclude the possibility that as clinical researchers, our findings may have been influenced by the interview guide's focus on studying the concept of mentalization. Finally, the questions in the guide also did not invite reflection on the experience of other co-occurring mental health issues. Conclusions The experience of living with an ED is described as something perpetually present, akin to an entangled and disorganized relationship, creating a distancing alienation both from significant others and from one's own body. It becomes challenging to relate to oneself and the external world without through ED thoughts and ED behaviours. Over time, regardless of the specific ED diagnosis, the disorder becomes increasingly ego-syntonic, making it difficult to envision a life without it. Given that the ED has become the central focus around which their lives revolve, treatment should aim to externalize the disease as something ego-dystonic, to enhance the ability to create new life goals, encourage social engagement, improve interpersonal skills, and fill life with meaningful content beyond the ED. Abbreviations AN – Anorexia nervosa BED – Binge eating disorder BN – Bulimia nervosa ED – Eating disorder IPT – Interpersonal psychotherapy NPR – Swedish national patient register OCD - Obsessive compulsive disorders RF – Reflective functioning SSRF – Symptom specific reflective functioning SSRF-ED - Symptom specific reflective functioning eating disorders TA – Thematic analysis Declarations Ethics approval and consent to participate. Both therapists and informants received written and oral information about the study and have given their consent to participate in the research project. The study has been approved by the Regional Ethics Review Board in Sweden, diary number; 2012/471. Fundings and Acknowledgements This study was part of a larger IPT project in Sweden and is supported by NPT – Swedish national patient register. We want to thank all the therapists, patients, teachers, and supervisors who contributed to the data of this study. Open access funding provided by Linköping University. Gratitude is also extended to Hanna Vosanovic for her assistance with language editing and translation of quotes. No additional funding sources were involved. Authors and Affiliations Malin Bäck; Department of Behavioral Sciences and Learning, Linköping University, Sweden, Futurum: Academy for Health and Care, Region Jönköping County, Sweden Sanna Aila Gustafsson: Faculty of Medicine and Health, University Health Care Research Center, Örebro University, Sweden Karin Jacobson: Faculty of Medicine and Health, University Health Care Research Center, Örebro University, Sweden Theresia Ljung: Faculty of Medicine and Health, University Health Care Research Center, Örebro University, Sweden Rolf Holmqvist: Department of Behavioral Sciences and Learning, Linköping University, Sweden Gerhard Andersson: Department of Behavioral Sciences and Learning, Linköping University, Sweden, Department of Clinical Neuroscience, Karolinska Institute, Stockholm, Sweden Contributions All authors contributed to the planning and design of the study. MB took primary responsibility for the manuscript, including reviewing relevant literature and drafting the paper for publication. MB and SAG collected the data. MB, SAG, CJ and TL performed qualitative analyses. All authors assisted with literature review and editing of the manuscript. All authors read and approved the final manuscript. Corresponding author Correspondence to Malin Bäck. Consent for publication. Not applicable. Competing interests The authors declare that they have no competing interests. References Levine MP, Smolak L. The Prevention of Eating Problems and Eating Disorders: Theories, Research and Applications: Routledge; 2020. Collier DA, Treasure JL. The aetiology of eating disorders. Br J Psychiatry. 2004;185:363-5. Barakat S, McLean SA, Bryant E, Le A, Marks P, National Eating Disorder Research C, et al. Risk factors for eating disorders: findings from a rapid review. J Eat Disord. 2023;11(1):8. Fairburn CG, Cooper Z, Shafran R. 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Experiences of eating disorders from the perspectives of patients, family members and health care professionals: a meta-review of qualitative evidence syntheses. J Eat Disord. 2021;9(1):156. Braun V, Clarke V. Thematic Alalysis. In: Maggino F, editor. Encyclopedia of Quality of Life and Well-Being Research: Springer, Cham; 2022. Bäck M, Gustafsson SA, Holmqvist R. Interpersonal psychotherapy for eating disorders with co-morbid depression: A pilot study,. European Journal of Psychotherapy & counselling. 2017;19(4):378-95. Birgegard A, Forsen Mantilla E, Dinkler L, Hedlund E, Savva A, Larsson H, et al. Validity of eating disorder diagnoses in the Swedish national patient register. J Psychiatr Res. 2022;150:227-30. Wallin A, Samuelsson K. Symptomspecific reflective functioning for eating disorders : associations with affect consciousness, selfreported attachment style and eating disorder symptoms. Linköping University; 2013. 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Rosen C, Jones N, Chase KA, Grossman LS, Gin H, Sharma RP. Self, Voices and Embodiment: A Phenomenological Analysis. J Schizophr Res. 2015;2(1). Belloch A, Roncero M, Perpiñá C. Ego-Syntonicity and Ego-Dystonicity Associated with Upsetting Intrusive Cognitions. Journal of Psychopathology and Behavioral Assessment. 2012;34(1):94-106. Hallam RS, O'Connor KP. A dialogical approach to obsessions. Psychology and Psychotherapy: Theory, Research and Practice. 2002;75(3):333-48. Roncero M, Belloch A, Perpina C, Treasure J. Ego-syntonicity and ego-dystonicity of eating-related intrusive thoughts in patients with eating disorders. Psychiatry Res. 2013;208(1):67-73. T’ierney S, Fox JR. Trapped in a toxic relationship: comparing the views of women living with anorexia nervosa to those experiencing domestic violence. Journal of Gender Studies. 2011;20(1):31–41. Forsén Mantilla E, Clinton D, Birgegård A. Insidious: The relationship patients have with their eating disorders and its impact on symptoms, duration of illness, and self-image. Psychol Psychother. 2018;91(3):302-16. Serpell L, Treasure J, Teasdale J, Sullivan V. Anorexia nervosa: friend or foe? Int J Eat Disord. 199;25(2):177-86. Erriu M, Cimino S, Cerniglia L. The Role of Family Relationships in Eating Disorders in Adolescents: A Narrative Review. Behav Sci (Basel). 2020;10(4). Levine MP. Loneliness and eating disorders. J Psychol. 2012;146(1-2):243-57. Bachner-Melman R, Rom R, Lev-Ari L, Shachar-Lavie I, Krispin O, Tolmacz R. Relational attitudes in adolescent girls with and without a diagnosis of anorexia nervosa or atypical anorexia nervosa. J Eat Disord. 2023;11(1):166. Cozzi F, Ostuzzi R. Relational competence and eating disorders. Eat Weight Disord. 2007;12(2):101-7. Longo P, Panero M, Amodeo L, Demarchi M, Abbate-Daga G, Marzola E. Psychoform and somatoform dissociation in anorexia nervosa: A systematic review. Clin Psychol Psychother. 2021;28(2):295-312. Nilsson D, Lejonclou A, Holmqvist R. Psychoform and somatoform dissociation among individuals with eating disorders. Nord J Psychiatry. 2020;74(1):1-8. Skarderud F. Eating one's words, part II: The embodied mind and reflective function in anorexia nervosa--theory. Eur Eat Disord Rev. 2007;15(4):243-52. Skarderud F. Eating one's words, part I: 'Concretised metaphors' and reflective function in anorexia nervosa--an interview study. Eur Eat Disord Rev. 2007;15(3):163-74. Skarderud F. Eating one's words: Part III. Mentalisation-based psychotherapy for anorexia nervosa--an outline for a treatment and training manual. Eur Eat Disord Rev. 2007;15(5):323-39. Skårderud F, Fonagy P. Eating disorders. In: Bateman AW, Fonagy P, editors. Handbook of mentalizing in mental health practice: American Psychiatric Publishing Inc.,; 2012. p. 347-83. Mantilla EF, Birgegard A. The enemy within: the association between self-image and eating disorder symptoms in healthy, non help-seeking and clinical young women. J Eat Disord. 2015;3:30. Voswinkel MM, Rijkers C, van Delden JJM, van Elburg AA. Externalizing your eating disorder: a qualitative interview study. J Eat Disord. 2021;9(1):128. Bjork T, Ahlstrom G. The patient's perception of having recovered from an eating disorder. Health Care Women Int. 2008;29(8):926-44. Leonidas C, Dos Santos MA. Social support networks and eating disorders: an integrative review of the literature. Neuropsychiatr Dis Treat. 2014;10:915-27. Patching J, Lawler J. Understanding women's experiences of developing an eating disorder and recovering: a life-history approach. Nurs Inq. 2009;16(1):10-21. Additional Declarations No competing interests reported. Cite Share Download PDF Status: Published Journal Publication published 26 May, 2025 Read the published version in Journal of Eating Disorders → Version 1 posted Editorial decision: Revision requested 03 Dec, 2024 Reviews received at journal 24 Nov, 2024 Reviewers agreed at journal 29 Oct, 2024 Reviews received at journal 06 Oct, 2024 Reviewers agreed at journal 19 Sep, 2024 Reviewers agreed at journal 15 Jul, 2024 Reviewers agreed at journal 10 Jul, 2024 Reviewers invited by journal 10 Jul, 2024 Editor assigned by journal 03 Jul, 2024 Submission checks completed at journal 03 Jul, 2024 First submitted to journal 29 Jun, 2024 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-4658825","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":327036671,"identity":"b3321da0-374d-48a2-abeb-ba7f005b1d3a","order_by":0,"name":"Malin Bäck","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA0ElEQVRIiWNgGAWjYFAC5oYDDAxAxMN8gEGigCgtjDAtbAkMEgZEamGAaOEBqidGi277wcbDBQx35Pl7znz7YGHAYM9PSIvZmcSGwzMYnhnOONu7eQbQYYkzGwhpOQDUwsNwmHEDP+9mkF8SDA4Q0nL+IViL/QZ+nscgLfb2BLXcgNiSuIG3hxmkhXEDQb/cANli8Cx5xpljxkAtEokzCDss+fBnnoo7tv09yY+ZJSps7PkbCFkDBtDoYJZgkCBKPQIwfiBRwygYBaNgFIwMAAAM8ECXdjAK3AAAAABJRU5ErkJggg==","orcid":"","institution":"Department of Behavioural Sciences and Learning, Linköping University","correspondingAuthor":true,"prefix":"","firstName":"Malin","middleName":"","lastName":"Bäck","suffix":""},{"id":327036675,"identity":"e75eeb81-112b-4628-8a88-c1eff399af10","order_by":1,"name":"Sanna Aila Gustafsson","email":"","orcid":"","institution":"Faculty of Medicine and Health, University Health Care Research Center, Örebro University","correspondingAuthor":false,"prefix":"","firstName":"Sanna","middleName":"Aila","lastName":"Gustafsson","suffix":""},{"id":327036676,"identity":"e178acaa-9d37-48da-ab56-2a091e1a4fc4","order_by":2,"name":"Karin Jacobson","email":"","orcid":"","institution":"Faculty of Medicine and Health, University Health Care Research Center, Örebro University","correspondingAuthor":false,"prefix":"","firstName":"Karin","middleName":"","lastName":"Jacobson","suffix":""},{"id":327036677,"identity":"bb251500-bf88-4cb9-8c21-cd59a662dd4a","order_by":3,"name":"Theresia Ljung","email":"","orcid":"","institution":"Faculty of Medicine and Health, University Health Care Research Center, Örebro University","correspondingAuthor":false,"prefix":"","firstName":"Theresia","middleName":"","lastName":"Ljung","suffix":""},{"id":327036678,"identity":"da232661-5092-4f32-b144-df6a16619722","order_by":4,"name":"Rolf Holmqvist","email":"","orcid":"","institution":"Department of Behavioural Sciences and Learning, Linköping University","correspondingAuthor":false,"prefix":"","firstName":"Rolf","middleName":"","lastName":"Holmqvist","suffix":""},{"id":327036679,"identity":"76f3526f-afbd-4e05-acff-c587559153fb","order_by":5,"name":"Gerhard Andersson","email":"","orcid":"","institution":"Department of Behavioural Sciences and Learning, Linköping University","correspondingAuthor":false,"prefix":"","firstName":"Gerhard","middleName":"","lastName":"Andersson","suffix":""}],"badges":[],"createdAt":"2024-06-29 10:21:08","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-4658825/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-4658825/v1","draftVersion":[],"editorialEvents":[{"content":"https://doi.org/10.1186/s40337-025-01291-1","type":"published","date":"2025-05-26T15:57:23+00:00"}],"editorialNote":"","failedWorkflow":false,"files":[{"id":61193969,"identity":"f7259f7e-a16d-4169-8940-9331cb57f2f6","added_by":"auto","created_at":"2024-07-26 21:07:37","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":145608,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cem\u003eTwo Dimensions of the experience of living with an ED.\u003c/em\u003e\u003c/p\u003e","description":"","filename":"1.png","url":"https://assets-eu.researchsquare.com/files/rs-4658825/v1/eab7d8da5e0b7418041ad4c0.png"},{"id":83782863,"identity":"f75e0a55-306c-4527-94c6-cd50c4b754d3","added_by":"auto","created_at":"2025-06-02 16:07:42","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1115418,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-4658825/v1/6625da59-ec26-4a12-ad3e-a56a0a0784bb.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"A way of relating to life; myself and others - a thematic analysis of patients' experience of having an eating disorder","fulltext":[{"header":"Plain English Summary","content":"\u003cp\u003eTo capture the meaning and experience of living with an eating disorder from the patient\u0026apos;s perspective, 15 women with eating disorders and depressive symptoms were interviewed before treatment. Reflexive thematic analysis was used to analyse the data. Two main dimensions of relating to the eating disorder were identified. The first dimension, \u0026quot;Having an eating disorder - a relentless relating,\u0026quot; described the present experience and included themes about how the disorder affects their relationships with themselves and others. The second dimension, \u0026quot;Relating to the eating disorder over time,\u0026quot; followed a timeline with themes showing how the disorder evolved from a coping strategy to a pervasive force affecting their entire existence. Living with an eating disorder means constantly experiencing a chaotic relationship with the disorder that distances individuals from others and their own bodies, making it challenging to imagine life without the disorder. Treatment should help individuals see the disorder as separate from themselves, reconnect with their bodies, and acknowledge their needs. It should also foster new life goals, social engagement, and improved interpersonal skills for a meaningful life beyond the eating disorder.\u003c/p\u003e\n"},{"header":"BACKGROUND","content":"\u003cp\u003eEating disorders (ED) is a category of psychiatric disorders for which different theoretical perspectives have been used (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e) and are usually regarded as multifactorial diseases (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e). How certain vulnerability factors can increase the risk of developing an ED or what problems arise due to EDs has also been a topic of research (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e). Studies have reported that living with an ED is not only about weight, body, and shape. It also involves difficulties in the fields of emotions, self-esteem, interpersonal and cognitive function (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e). Furthermore, comorbidity with other psychiatric disorders such as depression is common (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e). Hence, there are various factors affected by an ongoing ED, which in turn impact on the perception and experience of living with an ED and the individual's life and self-consciousness. Understanding the meaning of living with an ED on a deeper level is relevant from a theoretical point of view. It is also crucial to capture relevant aspects of maintaining and inhibiting factors from a clinical perspective. Research on what maintains an ED or what hinders recovery, regardless of the reasons behind its occurrence, can be complemented and enriched by research from the patient\u0026rsquo;s perspective on the experience of living with an ED, how the ED can be influenced by and affect various phenomena in life.\u003c/p\u003e \u003cp\u003ePrevious qualitative studies on the experiences of ED patients or their relatives have primarily been conducted during or after ED treatment, and mainly included patients suffering from Anorexia nervosa (AN) (\u003cspan additionalcitationids=\"CR7\" citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e). The studies have suggested that ED may be experienced as all-encompassing. Some patients compare it with living with an internal coercion where the ED is dictating the terms of the patient's life as well as the lives of their loved ones (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e, \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e). These studies have mainly focused on experiences of receiving ED treatment or the experience of moving towards recovery from an ED in the context of treatment. In a qualitative study by Lindstedt et al (2018), AN adolescents reported that their lives were put on hold during their time in the ED treatment, and that relationships and social contexts became crucial factors in the recovery process (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e). Regarding the experiences of living with an ED, women aged 18\u0026ndash;36 years living with Bulimia nervosa (BN) reported experiences like having a secret inner war with the mind, where ED behaviours carried out in order to calm one's inner self. In shame and with worries of being judged by those around them, they lived in fear of being discovered with isolation from others as a result. They also described a fear of letting go and living without BN, as the ED had become a significant part of their identity (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e). In a study by Bremer et al. (2023), patients with Binge eating disorder (BED) perceived living with BED as a challenging addiction. They presented the BED like living in a negative spiral, with the most inhibiting impact of the ED being thoughts and feelings. The patients struggled with low self-esteem and experienced a lack of understanding from others, resulting in shame. Being diagnosed with an ED was however perceived as a relieving validation (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e). In a systematic synthesis of qualitative findings Gustafsson et al. (2021) covered experiences of the ED and ED treatment from both patients, family members and health care professionals, and concluded that there were important differences in views regarding treatment approaches and expectations between staff, loved ones and, the patients. The authors suggested that more studies are needed regarding patients\u0026rsquo; perspective of living with different forms of EDs and which factors facilitate or hinder recovery (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e).\u003c/p\u003e"},{"header":"METHOD","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eDesign\u003c/h2\u003e \u003cp\u003eThe aim of this qualitative study was to capture the meaning and the experience of living with an ED from a patient perspective. For the identification of themes related to the experience of having an ED, a reflexive thematic analysis was employed (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e), based on interviews with patients who had been diagnosed with an ED and were awaiting the start of treatment.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003eParticipants\u003c/h2\u003e \u003cp\u003eThe participants in this study were Swedish women (aged 17\u0026ndash;39 years) with an ED and co-occurring depression, who were awaiting the start of treatment, as part of a naturalistic study on Interpersonal Psychotherapy (IPT) (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e, \u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e). Forty-eight patients participated in the IPT-study, of which 25 were interviewed using the SSRF-ED. The participants were interviewed by their assigned therapists at their regular ED unit prior to the start of therapy. They had previously been assessed within the Swedish national patient register (NPR) framework (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e), and encompassed a mixed group of EDs, predominantly BN or related conditions, along with a mild to severe depressive episode.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003eInterview\u003c/h2\u003e \u003cp\u003eThe data analysed in this study were derived from interviews conducted before the start of treatment in the previously mentioned study. The symptom specific reflective functioning interview for eating disorders (SSRF-ED) by Sk\u0026aring;rderud et. al. 2012, contains 13 questions focusing on the individual's experience of the connection between the ED and thoughts, feelings, bodily sensations, situations, and relationships. The interview also includes questions about the ED's function and impact on life (\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e, \u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e). SSRF-ED, is rooted in the mentalization tradition (\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e), and is an adaptation of the symptom specific reflective functioning interview (SSRF) (\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e, \u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e). The interview was part of the study project's comprehensive pre, mid, and post measurements with the intention of evaluating any changes in reflective functioning (RF) in relation to their ED during the therapy process. However, the purpose of this present study was not to rate RF. Nevertheless, a qualitative analysis of the interview responses in SSRF-ED was considered feasible in order to document the participants\u0026acute; experience of having an ED. The questions in SSRF-ED and its semi-structured format makes it possible to capture relevant phenomena related to experiencing. However, the strength of this choice of data is that it is taken from a mixed group of individuals with EDs, and the interviews are conducted before the treatment begins. Considering that previous qualitative research mainly has examined experiences of ED treatment or views on the ED after recovery, we view this design as a relevant addition (\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e).\u003c/p\u003e \u003cdiv id=\"Sec6\" class=\"Section3\"\u003e \u003ch2\u003eSelection of interviews\u003c/h2\u003e \u003cp\u003eOf the interviews conducted, 15 were deemed to have sufficient technical quality to be used for the study's purpose. Regardless of the saturation principle in qualitative research, all the initial SSRF-ED interviews were selected for this study. During the analysis, saturation was deemed to have been reached after just over half of the interviews, but we nevertheless chose to include all the chosen 15 interviews in the analysis. The interviews were approximately 30 minutes long, except for two interviews which were 65 minutes and 15 minutes respectively.\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec7\" class=\"Section2\"\u003e \u003ch2\u003eThematic analysis\u003c/h2\u003e \u003cp\u003eIn order to capture the informants' subjective experiences of having an ED, the interviews were processed and analysed with Braun and Clarke's model for reflexive thematic analysis (TA)(\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e). In Table \u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e follows a description of how the collected data has been processed and analysed is presented.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eProcess of Reflexive Thematic Analysis\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eStep 1: Familiarization with the data\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eThe 15 recorded interviews were reviewed several times and were transcribed. Notes were taken regarding what caught the interest, both during the review of the interviews and during the transcription process. In an inductive approach, the interviewer's questions (based on the SSRF-ED-interview) and comments then were removed from the transcripts so that further analysis would only be based on what the patients talked about regarding experiencing their ED. An earlier version of this analysis was conducted by Jacobsson, Ljung and B\u0026auml;ck (2023) in accordance with stage three in the TA-model (\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e). A deepened analysis of the data (stage 3\u0026ndash;5) was then made by B\u0026auml;ck and Gustafsson.\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eStep 2: Coding\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eTranscripts were carefully read through, and with focus on the research question, segments in the text were summarized into relevant codes that described the meaning of the data (semantic codes) Some latent codes were also identified on a more interpretive level. All codes were finally compiled together with the data relevant to each code.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eStep 3\u0026ndash;5: Generating initial themes, developing, and reviewing themes, refining, defining and naming themes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eOnce the codes had been identified, work began on developing initial themes. The codes that resembled each other were merged, after this the merged codes were examined to see what they had in common. It became clear that there were several ways to thematize the data material based on the coding. After further processing, initial themes were designed with the purpose and question of the study in mind. All codes were then read through to see how frequently they recurred in each theme. When relevant themes and sub-themes were determined, these were given names and descriptions, which were subsequently refined.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eStep 6: Writing up\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eWriting the result section, to describe the themes and sub-themes and to select suitable quotes that illustrated each theme provided a final opportunity for refining the analysis, such as determining the best order in which to present the themes.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e"},{"header":"RESULTS","content":"\u003cp\u003eThe analysis of the participants' experiences resulted in two different of living with an ED. One theme; \u003cb\u003eHaving an eating disorder- a relentless relating\u003c/b\u003e, is about the direct experience in the present, and was divided in two parallel subthemes dealing with relating to oneself and relating to others. These two parallel subthemes highlight the participants' experience of an entrapment in relation to themselves, others, and the ED. The ED was experienced as something ever-present, which they inevitably adapted and related to. The other dimension/theme was described through an overarching theme of \u003cb\u003eRelating to the ED over time.\u003c/b\u003e This theme follows a timeline where the informants experiences of having an ED changed over time, from initially seeing the ED as a coping strategy, but where a feeling of control changed to loss of control as the complexity of ED symptoms increased over time and finally impinged the entire existence to an extent where it was hard to imagine a life without the ED. The results are summarized and illustrated in Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e, and each themes and subthemes are described in more detail below.\u003c/p\u003e \u003cdiv id=\"Sec9\" class=\"Section2\"\u003e \u003ch2\u003eRelating to the ED over time\u003c/h2\u003e \u003cp\u003eThis dimension describes how the participant's relationship to the ED changed over time, often initially being perceived as a solution to some other problem in everyday life. Over time, however, the ED became more cemented, as a part of the person, which created an uncertainty about what a life without the ED would be like. This contributed to an ambivalence around the way forward towards a healthy life without the ED. Based on these descriptions, we organized this theme as a timeline with four \u003cem\u003elinear\u003c/em\u003e subthemes.\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cp\u003e \u003cem\u003eThe ED as a way to handle other difficulties.\u003c/em\u003e \u003c/p\u003e \u003cp\u003eThe onset of the ED was described in the context of external stressors, disputes, losses, or adjustments, which became hard to handle. ED behaviours emerged as a way to cope and were described as a temporary consolation in the interest of the informants own safe space to control their body when other things in life were out of their control.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eI fell into a depression, and, because of the circumstances, I imagined taking a little better care of myself by eating more regularly but yeah\u0026hellip; And eventually it went overboard somehow and in retrospect I have figured that it became a way to eventually feel in control, a terrible control issue\u0026hellip;which I applied to food and through workouts. It was not foremost about being unsatisfied with my body or it did not begin as a result of that\u0026hellip; instead it was about control I presume. There was a lot of losses and pressure around me back then... (JENNY 30 years)\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eThe ED was described as something else to focus on, a comfort or a way to regulate emotions around problems in family or peer relations.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eLike later when I began, you know, like when it got too much for me emotionally in life, then it turned into me putting like, I had to put my feelings somewhere and then it turned into like an obsession with working out and focusing on my body. (SARA 19 years)\u003c/em\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003eI know, like I believe a lot of it comes down to me having high expectations on myself\u0026hellip; But also, with\u0026hellip; both dad and mom too I believe... Because how do I put it\u0026hellip; Mom is all about to pull one\u0026acute;s weight and to perform well and yeah, very, very much so, she has always been like that. And with dad, \u0026hellip; (KAYA 22 years)\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec10\" class=\"Section2\"\u003e \u003ch2\u003eFrom control to consistent loss of control\u003c/h2\u003e \u003cp\u003eThe initial experience of control seemed to change over time as the pursuit of control became too demanding and inevitably led to a perceived loss of control. An increasing entanglement where strict self-imposed standards and over controlling was viewed as an integrated part of the personality in an unreflective way.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eYeah, it feels like you aren\u0026rsquo;t enough, whatever I do like, like yeah\u0026hellip; This thing with me eating rigidly and working out a lot\u0026hellip;it is a lot about this thing with control..., the fact that I want to keep track of what I do, and I want to see, yeah, simply put control myself. In some way\u0026hellip; Yes, because then I feel... yes, but then I lose control and then I start binge eating. Because I don\u0026rsquo;t have the energy to stay in control for so long because it is wearing that as well. It just happens. (LYDIA 23 years)\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003e \u003cem\u003eThe whole existence is impinged.\u003c/em\u003e \u003c/p\u003e \u003cp\u003eThe participants described how handling the ED became their primary concern, and that school or work became a secondary task that also had to be taken care of. Being in a competitive or stressful occupational context tended to lead to stricter and more dichotomous ED-rules. This created a vicious circle where the participants withdrew from important areas in life when they did not feel that they could perform according to their own standards, and thus their whole existence was controlled by the ED.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eWell\u0026hellip;when they are as strongest it is all about that, more or less, I mean it is, all about getting as perfect of a day as possible. Yeah, and everything else is a little bit in the way because I have to have it my way. And only my way. (LYDIA 23 years)\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003eHard to see a life without the ED\u003c/h2\u003e \u003cp\u003eIt was difficult for the participants to imagine a life without the ED. They could however describe moments of meaning and engaging contexts; both professionally and in their spare time, where they, for a while, could shift focus to other areas in life, like spending time with loved ones, being out in nature or focusing on something bigger than oneself.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eIt makes things easier to have things to do that are not connected to the anxiety-triggering things. To maybe be outside on a long walk with the dogs or meeting a friend for a chat. (KAYA 22 years)\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eThere was a longing to approach life with a broader perspective, and they felt that the ED impeded this goal. However, these moments were described like brief pauses, and the idea of what life would be like without the ED seemed hypothetical and incomprehensible. The participants' thoughts about a life without being sick were concrete with reflections embedded in an ED mindset.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eNaah\u0026hellip; hard. Can\u0026rsquo;t even imagine how that would be like\u0026hellip; Would probably have been happier at least\u0026hellip; (SARA 19 years)\u003c/em\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003eUhh, I would have managed my studies in another way maybe\u0026hellip; I would thereby maybe have a better self-esteem... if I would have felt that I had like top-grades in all subjects\u0026hellip; which I could have without any problems if I could be focused on my studies. (JENNY 30 years)\u003c/em\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003eIt would be a lot, a lot better, I mean I know that. I mean I would definitely get involved in things a lot more than what I do now. And really become that outgoing person. I mean\u0026hellip; Right now, it has been too little\u0026hellip;, before I always let people in, I always wanted to help people and I had all the energy and all that\u0026hellip; and now I often feel that I do not have the energy for anyone because I can\u0026rsquo;t even cope with myself\u0026hellip; kind of like this. So, it would be a lot more fun, much easier and much better. (SUE 20 years)\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec12\" class=\"Section2\"\u003e \u003ch2\u003eHaving an eating disorder - a relentless relating\u003c/h2\u003e \u003cp\u003eThis dimension/theme describes having an ED as a \u003cem\u003erelentless relating\u003c/em\u003e meaning that the participants\u0026rsquo; emotions towards their ED were entangled in a way where the ED was seen as a part of one's own person rather than a condition. The ED was experienced as something ever-present, which they inevitably needed to relate to in every situation. It was described as life doesn't work without the ED, but at the same time life doesn't work because of the ED. We organized this dimension in two themes describing the EDs impact on \u003cem\u003erelating to oneself\u003c/em\u003e and the EDs impact on \u003cem\u003erelating to others\u003c/em\u003e.\u003c/p\u003e \u003cp\u003e \u003cem\u003eThe EDs impact on relating to myself.\u003c/em\u003e \u003c/p\u003e \u003cp\u003eThe ED was described as something ego-syntonic, that affected every area in life. It was described as an obvious intertwined part of oneself, like a matter of course. The ED became a way of understanding oneself and a way to take care of oneself, albeit in a harsh and judgmental way. The informants seemed to find it difficult to reflect on themselves without filtering oneself through their ED. This way of relating seemed to make it hard to be close to yourself and your body. The patients reported both an invading closeness to their ED thoughts and at the same time a dismissive distance to themselves in an invalidating way.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eIt is such a big part of how I feel (\u0026hellip;) I feel so much better if I am comfortable with my body. If the scale has showed a number that is fine like, or yeah, isn\u0026rsquo;t that high, then I like myself a lot more and feel so much better and am so much more satisfied\u0026hellip; the entire day can be impacted. (\u0026hellip;) About feelings it is like, I don\u0026rsquo;t really know which affects which\u0026hellip; if it is the fact I feel fat that makes me sad or the other way around, but if I feel depressed or angry or sad or worried or something like that, then I often feel bigger, often feeling big and fat. It turns into not just me feeling miserable, I\u0026acute;m fat and ugly too. (MARY 24 years)\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eAlthough the ED had a large negative impact on life, ED behaviours were also described as helpful to create a sense of control, a way to deal with emotions and other inner sensations. Restricting oneself, bingeing and purging could be described as calming and regulating of various difficult experiences.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eThere are quite a lot of different thoughts and feelings. Maybe the inability to feel grounded in myself and notice... now I am mad, now I am mad at this person\u0026hellip; or becoming sad or becoming tired or, daring to figure out those feelings. There are quite a lot of feelings being suppressed. (\u0026hellip;) The food then becomes an escape, a pleasure and yeah, a refuge, I guess. (JENNY 30 years)\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eHowever, the ED was not only used to regulate specific negative affects in specific situations, but it was also often described as an automated and natural part of regulating oneself in general.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003eSo like when I ate, then I got a kick out if it, but of the opposite kind. And I guess I am still doing that, mostly, when I am, \u0026hellip;it could be when I am happy as well \u0026hellip; not just when I\u0026rsquo;m feeling down\u0026hellip; but when it turns into strong emotions then, like\u0026hellip; then it turns into me wanting to calm myself by eating. (\u003cem\u003eTILLY 22 years)\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eIn contrast to the entanglement between the individual's experience of herself and the ED, the participants described their own bodies as something ego-dystonic outside themselves, something that they were forced to live with. The body was described as separate from oneself, as a subject to invalidate and to judge f\u0026ouml;r letting them down. The informants described their bodies as something disobedient, something that needed to be controlled and regulated.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eNot that good, I\u0026hellip; I think about it very often, I mean myself and the body, like in two parts. I mean it is something that I,.. No but it is like my persona, my personality or my ego.. and then it is like the body\u0026hellip;that I am forced to live with. Yes, I feel like that often, like it is always me against my body. (TILLY 22 years)\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eThis way of relating seemed to make it hard to be in contact with one\u0026acute;s body. Inner experiences such as vulnerability was described as concrete bodily sensations like heaviness or lightness. The experience of one's own body could be linked to the individual's mood and emotional experiences, for example in the form of the body flowing out or growing, difficulties in moving in different body positions due to how the body felt and a sense of pain in different body parts that the person was dissatisfied with. These experiences were typically described like something to dismiss and disregard.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eWhen the body feels unpleasant, I mean when you feel.. it is almost as if, someone is sitting and pinching, I mean like almost phantom pain, someone sitting and pinching the back of the thigh or on the butt or at the belly. (LOU 23 years)\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eA great discomfort was described when other people touched them, leading to difficulties with physical contact and intimacy. Overall, the body dissatisfaction was described as an obstructive barrier between themselves and other people, an inhibitor to build relationships and thus led to increased isolation.\u003c/p\u003e \u003cp\u003e \u003cem\u003eThe EDs impact on relating to others.\u003c/em\u003e \u003c/p\u003e \u003cp\u003eHaving an ED affected the individual's social interactions and relationships with others to a great extent. The ED was described almost like a harsh partner in a destructive relationship. Each situation needed to be adapted to the requirements of the ED and often the participant chose to refrain from activities with other people in order to avoid lying or compromising with rules linked to the ED. The participants felt the need to defend their ED behaviours in relation to loved ones, which could lead to open or hidden conflicts with important others.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003eI mean I have chosen to end quite a few relationships and it is possibly because of this I can't decide everything when someone else is involved, like what to do, what to eat, when to eat, activities, and stuff like that You have to adapt to others\u0026hellip; so I have consciously made these choices to keep relationships short and superficial, because I don't know how I'd react if things got more serious or lasted longer. It's also these feelings of either someone else breaking it off or me doing it, so it's better if I do it myself, because I don't know how I'll feel down the road about my body or food. (CAREN 27 years)\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eThis often led to withdrawal and isolation in the long run. The informants described an ambivalence around relational needs to others and presented an experience of feeling lonely, even in the company of others. They also felt that relatives were not able to fully understand the complexity of having an ED. Albeit the participants own choice to be by them self, a fear of being alone was presented because they feared that they couldn\u0026acute;t control the urge to binge.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eWhen I am alone it generally gets worse in every way. Either I don\u0026rsquo;t eat anything and eat very restrictively when I am alone and trying to avoid all types of food I mean. Or if I am alone, it can also turn the opposite way, I might binge eating or yeah, eat and throw up and eat normal-sized portions as well and throw up. And then when it comes to situations with dinners and stuff like that with people, then it is usually the case that I eat but then go and throw up afterwards because I want to in some kind of way show that there aren\u0026rsquo;t any issues and that I can eat this. (MARY 24 years)\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eThe ED was described as \u003cem\u003ethe big secret\u003c/em\u003e that they were keen to keep hidden. They wanted to be able to talk more openly with loved ones about how they felt, but this was hindered by fear that they would be hindered from engaging in ED behaviours if they were to let other people in. These contradictory desires became an exhausting vicious circle that led to an emotional loneliness and isolation.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eI don\u0026rsquo;t think that (that) many people believe I am this unhappy with who I am, I have two sides. The \u0026ldquo;outside\u0026rdquo; with others, where you are.. where everything goes very well and there aren\u0026rsquo;t any problems and like that. So, I think a lot of people would be like, oh, or like are you that unhappy, are you like that\u0026hellip;\u0026hellip; (LOU 23 years)\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eRelationships with others were also complicated by exhausting social comparisons about looks or achievements. The participants own notion of what others might think of them as a person were filtered through a demand for perfection and food rules. A kind of \u003cem\u003eself\u003c/em\u003e-\u003cem\u003einvalidation by proxy\u003c/em\u003e. Comments from others could be interpreted as pressing criticism based on one's own high demands on oneself. This made it difficult to relate on others for support and contributed to the feeling of loneliness.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eIt becomes\u0026hellip;. I mean I don\u0026rsquo;t think they actually put that much pressure on me but to me, like me, where I am at the moment it feels like quite a lot and then it very often like, like it triggers it. And then I have some, or mostly one friend who has had an ED themselves but not gotten help with it so with her especially I feel like we trigger each other quite a lot. (TILLY 22 years)\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eAnother factor that made it difficult to lean on others for support was a desire to protect those around them from knowing the true nature of the ED. This became an unfortunate vicious circle where withdrawal from others led to loneliness, which in turn made the participants even more dependent on having the ED to turn to.\u003c/p\u003e \u003c/div\u003e"},{"header":"DISCUSSION","content":"\u003cp\u003eThe aim of this study was to capture the inner experience of living with an ED from a patient perspective. The identified themes could broadly be understood as an unconditional relating with the ED, something that can be described as\" \u0026ldquo;a relentless relating\u0026rdquo;. The individuals carry the ED with them constantly. Initially, serving as a coping mechanism for other burdensome aspects of life, gradually evolving into something increasingly intricate yet simultaneously inherent and difficult to imagine to be without. When participants speak about themselves, others in their lives, or about the ED, an entanglement between ED thoughts and the individual can be discerned in a manner that could be interpreted as ED becoming integrated into the individual themselves. This is comparable to an inner voice or a kind of harmful relationship that leaves little room for interpersonal relationships. The individual expresses ambivalence towards the desire to feel understood by and to get close to loved ones, while simultaneously feel shame and the need to hide the ED contribute to withdrawal or living a double life.\u003c/p\u003e \u003cdiv id=\"Sec14\" class=\"Section2\"\u003e \u003ch2\u003eThe ED as an integrated part of oneself\u003c/h2\u003e \u003cp\u003eThe finding that the ED becomes increasingly ego-syntonic over time, as an integrated part of the individual, and that they cannot speak about themselves, their self-perception, or their emotions without filtering it through the ED, is consistent with previous ED research, primarily conducted with AN patients, describing the ED as an inner voice a part of the identity, or as a different side of the self (\u003cspan additionalcitationids=\"CR26\" citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e). Research conducted on different ED conditions, such as BN, AN and BED, demonstrates similar findings, even though the inner voice of AN has been studied the most (\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e). The experience of symptoms being perceived as an integral part of oneself has been studied in other conditions such as suicidal thoughts in depression (\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e), anxiety disorders, and substance abuse (\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e, \u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e). However, ego-syntonic, and ego-dystonic experiences are primarily described in EDs and Obsessive-compulsive disorders (OCD) (\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e, \u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e), in the sense that symptoms are both experienced as significant suffering and a lifesaver in distress. This contradictory relationship with the illness is primarily found in compulsive conditions characterized by loss of control, obsession, and affective intolerance (\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e). More comparative studies across psychiatric conditions on these issues are recommended.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec15\" class=\"Section2\"\u003e \u003ch2\u003eA harmful relationship with no place for others\u003c/h2\u003e \u003cp\u003eDue to the voice\u0026rsquo;s coercive nature and impact on self- esteem, patients\u0026rsquo; relation to their ED has in previous research been compared to a relationship with elements of physical and emotional abuse that do not allow space for a life outside of the relationship with the ED, forcing the individual into social withdrawal (\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e). Fors\u0026eacute;n Mantilla et al. (2018) showed that comprehensible relationship patterns between patients and their ED emerged in the same way as a real-life relationship. Patients in that study tended to experience their ED as controlling and domineering. These patterns were found to hold true regardless of the ED diagnosis (\u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e). Despite being harsh and critical, patients often experience affiliation towards their ED, (\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e). Similar to our findings, the ED has been described as a helper in dealing with and avoiding negative emotions, providing a sense of safety and protection (\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e). Regardless of whether this integrated part of oneself is dominating, demanding, or motivating, patients have been able to attach positive value to their symptoms i.e. consistent with needs, goals, and ideals. This duality could possibly be a contributing factor when trying to explain why patients are often ambivalent about change and recovery. However, it has been shown that the more ego-syntonic thoughts about eating and weight related behaviours were, the more controlling and guiding the symptoms became (\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e). Despite negative consequences such as losing relationships with significant others and sacrificing other aspects of life, previous findings indicate an unconditional need to remain close to the ED in an almost symbiotic manner (\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e). This aligns well with the findings of our study, which indicate that the relationship with the ED not only affects the individual's relationship with oneself but also their interactions with significant others and social environments. Interactions with family members and friends become strained, with others perceived as threats to or even competitors with the relationship to the ED (\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e \u003cem\u003eThe entanglement with the ED makes it difficult to be part of a relational context.\u003c/em\u003e \u003c/p\u003e \u003cp\u003eSimilar to the participants in this study, Levine (2012) highlighted how individuals with EDs may struggle to relate to others when they strongly identify with their ED, although the participants in our study expressed an ambivalent longing for understanding and intimacy (\u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e). Additionally, Bachner-Melman et al. (2023) discussed the difficulties individuals with EDs face in developing mutuality in relationships, as they tend to either overly satisfy the needs of family members and friends or meet the needs of the ED (\u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e). In a meta-analysis by Cozi and Ostuzzi (\u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e) relational competence among individuals with EDs were examined. The results demonstrated an increased challenge for ED patients in developing self-agency and relate to others. Various ED diagnosis tended to exhibit different relational problems, some with ambivalence in relationships or complete withdrawal from oneself and others (\u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e). As a consequence of the ED, conflicts with significant others, and sometimes other interpersonal vulnerabilities issues of loneliness has been highlighted among individuals with EDs (\u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e). In the review by Levine (\u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e), loneliness was accompanied by both intra- and interpersonal conflicts, which manifested somewhat differently across various ED diagnoses. The findings underscore the importance of helping individuals with EDs in developing healthy relationships (\u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec16\" class=\"Section2\"\u003e \u003ch2\u003eThe Body as something ego-dystonic\u003c/h2\u003e \u003cp\u003eIn contrast to the ego syntonic entanglement that our study highlights between the patient's perception of themselves and their illness, a division between the self and the body is described, where it becomes as if the patients filter their experiences of themselves, their needs, and their well-being through invalidating disordered thoughts, which serve as the guide for what is right and wrong. Participants' way of discussing their relationship with their own bodies was detached, fragmented, and can be likened to so-called somatoform dissociation, something that has been identified in individuals with ED in previous studies (\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e, \u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e). It has been suggested that individuals with EDs use their bodies to solve various types of emotional and relational problems, a phenomenon referred to as concretism, linked to difficulties in understanding their own emotional states (\u003cspan additionalcitationids=\"CR44\" citationid=\"CR43\" class=\"CitationRef\"\u003e43\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e). In our study, participants also mention ED behaviours and body contempt as a way to cope with events in life that evoke emotions \u0026ndash; the internal seems to be concretized, and emotional words become physical sensations, for example, feeling light when one is happy, etc. Sk\u0026aring;rderud and Fonagy (2012) further described how the state of pretend mode may manifest in ED patients. The body and emotions feel unreal, as if they do not belong to the person themselves, often leading the patient to experience emptiness and meaninglessness (\u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e46\u003c/span\u003e).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec17\" class=\"Section2\"\u003e \u003ch2\u003eClinical implications\u003c/h2\u003e \u003cp\u003eFrom a clinical perspective, the results of this study show that ED treatment may primarily need to focus on the individual's ability to see their symptoms from the outside and themselves with their feelings and needs from within. The ego syntonic state of the ED, the vicious bond between the individual and their ED, and the dissociation towards one\u0026rsquo;s body, could possibly explain the ambivalence in relation to change. It may be difficult for both treatment providers and loved ones to reach the patient, without the communication and understanding of each other is being harmed. It is hard to work with your relationship with yourself and others or be ready for behaviour change if you do not first break the magic of the ED. ED symptoms need to be clarified as symptoms of a condition in an individualized and validating manner (\u003cspan citationid=\"CR47\" class=\"CitationRef\"\u003e47\u003c/span\u003e), symptoms and behaviours that do not represent who I am, but rather an illness that I suffer from and which I can overcome (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e). One way to make ED behaviours and ED thoughts more ego-dystonic is through externalization, which can be done in various ways within different treatments. The aim of externalizing a psychiatric disorder is to help patients perceive the disorder as something separate, rather than as a part of the self, but as an illness that has great negative influence on life and requires treatment. Viewing the ED externally can help patients to accept treatment (\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e). However, previous research does not solely indicate externalization as helpful; it can be experienced as invalidating, with the patient not feeling seen as a person or being taken seriously unless it is based on the patient's current symptomatology and its unique relation to their ED (\u003cspan citationid=\"CR48\" class=\"CitationRef\"\u003e48\u003c/span\u003e). By creating a gap between the disordered thoughts and the individual's experience of what they feel and desire, the patient can access mentalization, affect awareness, and what they desire in life together with others. Bj\u0026ouml;rk and Ahlstr\u0026ouml;m (2008) highlighted how recovered patients no longer perceived the ED as an integrated part of themselves. They expressed a desire to engage in life in terms of social contexts, life goals, and relationships (\u003cspan citationid=\"CR49\" class=\"CitationRef\"\u003e49\u003c/span\u003e). However, it is a challenging step to become available to let go of your ED. It has taken up most of the patient's living space and has crowded out both relationships, activities, and various development opportunities for many years. This can be a grieving process, where the patient may need to find alternatives to turn to in order not to experience abandonment or go on the impulse to return to the ED in need of support (\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eAn important aspect in ED treatment may be to motivate and support the patient in reorienting themselves in life and to recognize which relationships and social contexts are beneficial for their recovery (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e). A systematic review by Leonidas and Dos Santos (2014) examined the importance of social support in recovering from an ED and they argue that treatment also should focus on the relational aspects of EDs rather than solely the eating-related symptoms (\u003cspan citationid=\"CR50\" class=\"CitationRef\"\u003e50\u003c/span\u003e). It has been suggested that learning to accept oneself and manage conflicted relationships is an important aspect of recovery (\u003cspan citationid=\"CR51\" class=\"CitationRef\"\u003e51\u003c/span\u003e). In our study, participants expressed experiencing relief from their ED when engaging in meaningful activities with others. However, they also reported feeling a distance or loosing relationships due to their ED. Participants in our study could sometimes compare the ED to a harmful relationship. Previous research, which equates the relationship with the ED with a relationship with a significant other, suggests that ED treatment should encourage patients to rebel against their ED (\u003cspan citationid=\"CR47\" class=\"CitationRef\"\u003e47\u003c/span\u003e). Seen from this perspective, important factors in breaking up from an ED could include ways to receive a higher level of agency and self-validation, but also building social support, being able to lean on family and friends and move forward.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec18\" class=\"Section2\"\u003e \u003ch2\u003eStrength and Limitations\u003c/h2\u003e \u003cp\u003eA strength of this study is that it presents an in-depth exploration of the perspectives of patients on how they experience having an ED. Similar studies have primarily been conducted after the completion of treatment and have mainly focused on patients' experiences of undergoing treatment, recovering from their ED, and have predominantly involved patients with AN. The participants in our study represent various types of EDs, in different stages, with comorbidity with depression. The interviews were conducted before the start of psychotherapy and focused on the patients' experiences of the illness itself. In these aspects, the study captures areas within the field where there is a knowledge gap. The study, which was conducted on 15 patients, all of whom are Western women, has limited representativity and generalisability. More studies on patients' experiences, unaffected by the healthcare system's views on the illness and its solutions, need to be conducted, preferably from a transcultural perspective. We, the authors, and researchers of this study, are all Western psychotherapists with varying levels of experience working with ED patients. We have substantial theoretical and clinical knowledge regarding the psychological phenomena mentioned in ED research. We are aware that this preunderstanding influences how we interpret and assimilate the data. As explained in the methodology section, we consciously moved between a semantic, inductive analysis where the content stands on its own with a focus on what the participant says, and a more deductive analysis focusing on how the participant describes their experience, involving more reflexive interpretations and capturing themes on a more latent level. Moreover, an interview guide primarily designed to measure reflective function regarding current symptoms, SSRF-ED, was used. The interview highlights different areas that can be affected by ED in various ways. Although the purpose of our study was not to assess participants' ability to reflect on their ED, but rather to capture the experience and impact across different life areas, one cannot rule out that participants' responses could have been influenced by the original content of the interview guide. Nor can we exclude the possibility that as clinical researchers, our findings may have been influenced by the interview guide's focus on studying the concept of mentalization. Finally, the questions in the guide also did not invite reflection on the experience of other co-occurring mental health issues.\u003c/p\u003e \u003c/div\u003e"},{"header":"Conclusions","content":"\u003cp\u003eThe experience of living with an ED is described as something perpetually present, akin to an entangled and disorganized relationship, creating a distancing alienation both from significant others and from one's own body. It becomes challenging to relate to oneself and the external world without through ED thoughts and ED behaviours. Over time, regardless of the specific ED diagnosis, the disorder becomes increasingly ego-syntonic, making it difficult to envision a life without it. Given that the ED has become the central focus around which their lives revolve, treatment should aim to externalize the disease as something ego-dystonic, to enhance the ability to create new life goals, encourage social engagement, improve interpersonal skills, and fill life with meaningful content beyond the ED.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003eAN \u0026ndash; Anorexia nervosa\u003c/p\u003e\n\u003cp\u003eBED \u0026ndash; Binge eating disorder\u003c/p\u003e\n\u003cp\u003eBN \u0026ndash; Bulimia nervosa\u003c/p\u003e\n\u003cp\u003eED \u0026ndash; Eating disorder\u003c/p\u003e\n\u003cp\u003eIPT \u0026ndash; Interpersonal psychotherapy\u003c/p\u003e\n\u003cp\u003eNPR \u0026ndash; Swedish national patient register\u003c/p\u003e\n\u003cp\u003eOCD - Obsessive compulsive disorders\u003c/p\u003e\n\u003cp\u003eRF \u0026ndash; Reflective functioning\u003c/p\u003e\n\u003cp\u003eSSRF \u0026ndash; Symptom specific reflective functioning\u003c/p\u003e\n\u003cp\u003eSSRF-ED - Symptom specific reflective functioning eating disorders\u003c/p\u003e\n\u003cp\u003eTA \u0026ndash; Thematic analysis\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate.\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eBoth therapists and informants received written and oral information about the study and have given their consent to participate in the research project. The study has been approved by the Regional Ethics Review Board in Sweden, diary number; 2012/471.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFundings and Acknowledgements\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis study was part of a larger IPT project in Sweden and is supported by NPT \u0026ndash;\u0026nbsp;Swedish national patient register. We want to thank all the therapists, patients, teachers, and supervisors who contributed to the data of this study. Open access funding provided by Link\u0026ouml;ping University. Gratitude is also extended to Hanna Vosanovic for her assistance with language editing and translation of quotes. No additional funding sources were involved.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors and Affiliations\u003c/strong\u003e\u003c/p\u003e\n\u003col start=\"1\" type=\"1\"\u003e\n \u003cli\u003eMalin B\u0026auml;ck; Department of Behavioral Sciences and Learning, Link\u0026ouml;ping University, Sweden, Futurum: Academy for Health and Care, Region J\u0026ouml;nk\u0026ouml;ping County, Sweden\u003c/li\u003e\n \u003cli\u003eSanna Aila Gustafsson: Faculty of Medicine and Health, University Health Care Research Center, \u0026Ouml;rebro University, Sweden\u003c/li\u003e\n \u003cli\u003eKarin Jacobson: Faculty of Medicine and Health, University Health Care Research Center, \u0026Ouml;rebro University, Sweden\u003c/li\u003e\n \u003cli\u003eTheresia Ljung: Faculty of Medicine and Health, University Health Care Research Center, \u0026Ouml;rebro University, Sweden\u003c/li\u003e\n\u003c/ol\u003e\n\u003col\u003e\n \u003cli\u003eRolf Holmqvist: Department of Behavioral Sciences and Learning, Link\u0026ouml;ping University, Sweden\u003c/li\u003e\n\u003c/ol\u003e\n\u003col start=\"6\" type=\"1\"\u003e\n \u003cli\u003eGerhard Andersson: Department of Behavioral Sciences and Learning, Link\u0026ouml;ping University, Sweden, Department of Clinical Neuroscience, Karolinska Institute, Stockholm, Sweden\u003c/li\u003e\n\u003c/ol\u003e\n\u003cp\u003e\u003cstrong\u003eContributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAll authors contributed to the planning and design of the study. MB took primary responsibility for the manuscript, including reviewing relevant literature and drafting the paper for publication. MB and SAG collected the data. MB, SAG, CJ and TL performed qualitative analyses. All authors assisted with literature review and editing of the manuscript. All authors read and approved the final manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCorresponding author\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eCorrespondence to Malin B\u0026auml;ck.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication.\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare that they have no competing interests.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eLevine MP, Smolak L. The Prevention of Eating Problems and Eating Disorders: Theories, Research and Applications: Routledge; 2020.\u003c/li\u003e\n\u003cli\u003eCollier DA, Treasure JL. The aetiology of eating disorders. Br J Psychiatry. 2004;185:363-5.\u003c/li\u003e\n\u003cli\u003eBarakat S, McLean SA, Bryant E, Le A, Marks P, National Eating Disorder Research C, et al. Risk factors for eating disorders: findings from a rapid review. J Eat Disord. 2023;11(1):8.\u003c/li\u003e\n\u003cli\u003eFairburn CG, Cooper Z, Shafran R. Cognitive behaviour therapy for eating disorders: a \u0026quot;transdiagnostic\u0026quot; theory and treatment. Behav Res Ther. 2003;41(5):509-28.\u003c/li\u003e\n\u003cli\u003eB\u0026auml;ck M, Falkenstrom F, Gustafsson SA, Andersson G, Holmqvist R. Reduction in depressive symptoms predicts improvement in eating disorder symptoms in interpersonal psychotherapy: results from a naturalistic study. J Eat Disord. 2020;8:33.\u003c/li\u003e\n\u003cli\u003eOketah NO, Hur JO, Talebloo J, Cheng CM, Nagata JM. Parents\u0026apos; perspectives of anorexia nervosa treatment in adolescents: a systematic review and metasynthesis of qualitative data. J Eat Disord. 2023;11(1):193.\u003c/li\u003e\n\u003cli\u003eWhitney J, Murray J, Gavan K, Todd G, Whitaker W, Treasure J. Experience of caring for someone with anorexia nervosa: qualitative study. Br J Psychiatry. 2005;187:444-9.\u003c/li\u003e\n\u003cli\u003eSibeoni J, Orri M, Colin S, Valentin M, Pradere J, Revah-Levy A. The lived experience of anorexia nervosa in adolescence, comparison of the points of view of adolescents, parents, and professionals: A metasynthesis. Int J Nurs Stud. 2017;65:25-34.\u003c/li\u003e\n\u003cli\u003eMac Donald B, Gustafsson SA, Bulik CM, Clausen L. Living and leaving a life of coercion: a qualitative interview study of patients with anorexia nervosa and multiple involuntary treatment events. 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Experiences of eating disorders from the perspectives of patients, family members and health care professionals: a meta-review of qualitative evidence syntheses. J Eat Disord. 2021;9(1):156.\u003c/li\u003e\n\u003cli\u003eBraun V, Clarke V. Thematic Alalysis. In: Maggino F, editor. Encyclopedia of Quality of Life and Well-Being Research: Springer, Cham; 2022.\u003c/li\u003e\n\u003cli\u003eB\u0026auml;ck M, Gustafsson SA, Holmqvist R. Interpersonal psychotherapy for eating disorders with co-morbid depression: A pilot study,. European Journal of Psychotherapy \u0026amp; counselling. 2017;19(4):378-95.\u003c/li\u003e\n\u003cli\u003eBirgegard A, Forsen Mantilla E, Dinkler L, Hedlund E, Savva A, Larsson H, et al. Validity of eating disorder diagnoses in the Swedish national patient register. J Psychiatr Res. 2022;150:227-30.\u003c/li\u003e\n\u003cli\u003eWallin A, Samuelsson K. 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Change in reflective functioning in interpersonal psychotherapy and cognitive behavioral therapy for major depressive disorder. Psychother Res. 2023;33(3):342-9.\u003c/li\u003e\n\u003cli\u003eKnott E, Rao AH, Summers K, Teeger C. Interviews in the social sciences. Nature reviews mehods primers. 2022;2(73).\u003c/li\u003e\n\u003cli\u003eJacobson K, Ljung T. Att ha en \u0026auml;tst\u0026ouml;rning \u0026ndash; en del i relaterandet till mig sj\u0026auml;lv och andra \u0026ndash; en tematisk analys ur ett patientperspektiv: Link\u0026ouml;pings University; 2023.\u003c/li\u003e\n\u003cli\u003eTierney S, Fox JR. Living with the anorexic voice: a thematic analysis. Psychol Psychother. 2010;83(Pt 3):243-54.\u003c/li\u003e\n\u003cli\u003eGregertsen EC, Mandy W, Serpell L. The Egosyntonic Nature of Anorexia: An Impediment to Recovery in Anorexia Nervosa Treatment. 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Social support networks and eating disorders: an integrative review of the literature. Neuropsychiatr Dis Treat. 2014;10:915-27.\u003c/li\u003e\n\u003cli\u003ePatching J, Lawler J. Understanding women\u0026apos;s experiences of developing an eating disorder and recovering: a life-history approach. Nurs Inq. 2009;16(1):10-21.\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"journal-of-eating-disorders","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"joed","sideBox":"Learn more about [Journal of Eating Disorders](http://jeatdisord.biomedcentral.com)","snPcode":"40337","submissionUrl":"https://submission.nature.com/new-submission/40337/3","title":"Journal of Eating Disorders","twitterHandle":"@JEatDisord","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"BMC/SO AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Eating disorder, Patient perspective, Lived experience, Qualitative study, Ego-syntonicity, Harmful relationship, Alienation, Social withdrawal, Self-observation, Externalization","lastPublishedDoi":"10.21203/rs.3.rs-4658825/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-4658825/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003eBackground: Eating disorders are psychiatric conditions involving not just weight, body, and shape concerns but also self-esteem, emotional, interpersonal, and cognitive difficulties. Understanding the deeper meaning of living with an eating disorder is significant from a theoretical standpoint and crucial for identifying factors that maintain or inhibit these disorders. Patient-centred studies offer valuable insights into the lived experience of eating disorders, highlighting their impact and interaction with various life phenomena. This qualitative study aimed to capture the meaning and experience of living with an eating disorder from a patient perspective.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eMethods: Interviews were conducted with 15 women suffering from eating disorders and comorbid depressive symptoms prior to the start of treatment. Data were analysed using reflexive thematic analysis.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eResults: Two dimensions of relating to the eating disorder were identified. The first dimension, \"Having an eating disorder - a relentless relating,\" described the present experience and was divided into two themes: “The eating disorders impact on relating to myself” and “The eating disorders impact on relating to others”. The second dimension \"Relating to the eating disorder over time” followed a timeline with four themes; “The eating disorder as a way to handle other difficulties”, “From control to consistent loss of control”, “The whole existence is impinged” and “Hard to see a life without the eating disorder”.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eConclusions: Living with an eating disorder involves a constant, disorganized relationship to the eating disorder that creates alienation from significant others and one's own body, making it challenging to relate to oneself and the world without eating disordered thoughts and behaviours. Over time, the eating disorder becomes increasingly ego-syntonic, making it hard to envision life without it. Therefore, treatment should highlight interventions to help individuals view the disorder as distinct from themselves, in reconnecting with their bodies, and acknowledging their needs and wishes. Given that eating disorders often become the central focus of life, treatment should also aim to foster new life goals, social engagement, improve interpersonal skills, and develop a meaningful life beyond the eating disorder.\u003c/p\u003e","manuscriptTitle":"A way of relating to life; myself and others - a thematic analysis of patients' experience of having an eating disorder","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-07-26 21:07:32","doi":"10.21203/rs.3.rs-4658825/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2024-12-03T05:39:11+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2024-11-24T15:12:03+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"305123575972187253436341835842675271576","date":"2024-10-29T10:06:46+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2024-10-07T03:19:12+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"122246802926261449296233069350917807674","date":"2024-09-19T16:21:10+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"138372094238743003361882317600779551739","date":"2024-07-15T09:38:17+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"113665742832304526184553656887164284845","date":"2024-07-10T04:11:59+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2024-07-10T04:06:15+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2024-07-03T12:31:53+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2024-07-03T12:30:49+00:00","index":"","fulltext":""},{"type":"submitted","content":"Journal of Eating Disorders","date":"2024-06-29T10:17:48+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"journal-of-eating-disorders","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"joed","sideBox":"Learn more about [Journal of Eating Disorders](http://jeatdisord.biomedcentral.com)","snPcode":"40337","submissionUrl":"https://submission.nature.com/new-submission/40337/3","title":"Journal of Eating Disorders","twitterHandle":"@JEatDisord","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"BMC/SO AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"222482fa-c08c-4859-bcc2-2bd706dec3bc","owner":[],"postedDate":"July 26th, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2025-06-02T16:00:49+00:00","versionOfRecord":{"articleIdentity":"rs-4658825","link":"https://doi.org/10.1186/s40337-025-01291-1","journal":{"identity":"journal-of-eating-disorders","isVorOnly":false,"title":"Journal of Eating Disorders"},"publishedOn":"2025-05-26 15:57:23","publishedOnDateReadable":"May 26th, 2025"},"versionCreatedAt":"2024-07-26 21:07:32","video":"","vorDoi":"10.1186/s40337-025-01291-1","vorDoiUrl":"https://doi.org/10.1186/s40337-025-01291-1","workflowStages":[]},"version":"v1","identity":"rs-4658825","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-4658825","identity":"rs-4658825","version":["v1"]},"buildId":"qtupq5eGEP_6zYnWcrvyt","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}