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.