The following four themes were revealed in the interviews:
- Not knowing what one feels
- Switch off, run away, or hide behind a mask
- Emotions in a lifelong perspective
- Using eating behaviours to regulate emotions
Not knowing what one feels
All participants but one described difficulties in distinguishing emotions, which resulted in either chaos and anxiety or confusion concerning which feeling was experienced in different situations. They described anxiety as a state where everything seemed to “fuse”, or as a “cloud of anxiety”. The experience of not knowing the real emotion or not understanding the inner emotional experiences was described as difficult. Only one participant stated that she “could differentiate (her) emotions pretty well” (No 40).
“I find it extremely difficult to distinguish feelings. I think it's very hard to know what you're really feeling” (No 7).
”And then everything just becomes a cloud of anxiety. It's as if everything melts together and you don't really understand what's what, and then everything gets even more difficult” (No 9).
”At times everything's just chaos in my head and I don't really know what I feel. (..) Then my inner self just stares, nothing works, it all somehow freezes up”. (…) ”I usually try to describe it as (…), as I usually say like fireworks in my brain. Because a thought pops up, then becomes two thoughts (…), and then just sort of continues. I can't stop it. So sometimes I wish I had an off switch in my brain” (No 23).
Switch off, run away, or hide behind a mask
Experiencing one’s emotions was described as tiresome and intimidating, thus switching them off was chosen in order to protect oneself. “Switching off” is described as a common and conscious choice to avoid fear or other painful feelings:
”I often turn off what I feel and shut myself in” (No 12)”I'm the kind of person that can easily switch off (…), something's wrong but I don't know what” (No 40).
“I've shut off, or I've wanted to shut down in some way, so I focused on doing things constantly so I wouldn't have to feel all the time” (No 41).
Another metaphor for emotional avoidance was “running away”:
”You don't want to feel (anything), you try to run from it and push everything away (…) I'm more afraid of doing something I shouldn't do. And then it's easier to push away the anxiety and just keep it at a distance, but you get tired of avoiding feelings as well” (No 9).
“when I felt there was too much in my head, when things got too stirred up, I resorted to what I usually resort to (…), I go out for a run” (No 4).
Looking good in the eyes of others through excellent performance, compliance, and obliging (others?) were common descriptions, and associated with feigned joy and switched off feelings. Performance was mostly related to kindred persons, but in a lesser degree also directly to “please” the ED. Showing consideration, appearing happy, and displaying competence to others, or skipping meals and exercising extensively, served both as a way of reassuring others (including the ED), not bothering or burdening others, and escaping emotions. Experiences of “faking joy”, “putting on a mask” or “acting like a robot” were expressed by participants. Sometimes emotions had been repressed or used as a mask outwardly for so long that it was hard to remember how it used to be, and thus difficult to experience naturally:
“I thought I was some sort of perfect person that didn't get angry and didn't show that I was sad, and went around thinking I was happy since I had faked it for so long”(No 4).
”It gets easy to put on that mask and pretend to be happy all the time, I guess (…) I walked around like a robot and just did everything while I helped out around the house and carried on. I was probably scared, I was probably really scared" (No 4).
These strategies had a price in the long run. Even pleasant emotions tended to disappear, and thus complicated the possibility of knowing how real happiness feels.
"I'm so switched off and so used to going around and pretending to be happy all the time, that even joy becomes so charged since I get so I don't really know when I'm really happy"(No 4).
Trying to spare others by hiding behind a mask could also obstruct important relationships, and prevent others from understanding and thus providing support:
"when I just switch off (my feelings) the whole time it's not so fair to others either (…), maybe they get angry "why don't you show anything?" (No 12).
"they deserve to know, too (…), they really have no idea about what's going on inside (me)"(No 30).
Emotions in a lifelong perspective
All kinds of emotions were considered difficult to experience, but shame, fear, and sadness were considered the worst, although it was difficult to keep them apart at times.
"sadness is always so close at hand and I'm often sad (…) when I've been sad I've probably actually been very scared" (No 4).
Participants explained their emotions in a conscious way, and despite their struggle to avoid them they seemed to be able to recognise different emotions.
"Sometimes it feels like I'm ashamed of nearly everything" (No 23).
"I feel shame for so many different things (that) it gets to the point I get stuck in it, that I feel shame more than with those typical eating disorder things like the body or weight or when you eat and so on" (No 4).
Showing the environment and significant others a happy and competent facade and not being detected for the true person within evoked sorrow:
"(I am) sorry that no one saw the person behind (the performance) (No 4).
While all participants talked about shame, fear, and sadness as troublesome emotions, six participants also talked about anger. While the narratives were otherwise coherent, they differed when it came to this emotion. One of them said that she almost never had experienced anger, that this emotion was unimportant to her, while two reported difficulties in expressing anger due to fears of being wrong or fearing rejection from others. One specific reason for anger was the same as for sadness in the example above, anger over not being prevented from continuing the ED. Some felt that they experienced such strong feelings of anger that it was sometimes problematic, although they also considered expressions of anger important.
"You can't just let go if you're at work, then you have to try to withdraw until you've calmed down. But if I'm at home and no one sees me, then I can cry, scream, curse, hit something or something like that” (No 23).
"I guess it's better to be angry and then it's over, than never to be angry so that it boils over and you get so angry you do something stupid" (No 7).
However, beside avoidance of negative emotions, difficulties in experiencing curiosity and joy were also described. Some participants considered joy to be the easiest emotion to handle; as long as you can still feel it. Joy was sometimes related to wearing a mask towards others, acting happy as described in the first theme above, and in that case joy could be lost. Participants remembered themselves as quite easygoing and happy when they were young children. Simple and pure joy was lost during life, something that was, as a contrast to other emotions, mostly noticed when lacking.
"then it's a bit tough if you feel no joy (...) then it's hard if you really have to SEARCH (for it) (…) if you haven’t felt happy for a while then it feels like something’s missing, it’s not like you ‘well now I haven’t been angry for a while, so now I’ve to get a little angry’(No 40).
"I've missed (joy) for most of my life” (No 41).
Losing joy, spontaneity, and interest was a price or a side-effect for remaining in an ED. Something lost, sometimes mourned, and although this loss could have been a motivation to leave the ED it was not motivation enough.
Using eating disorder behaviours to regulate emotions
Eating disorder symptoms were described as regulators of unwelcomed emotions, and were used as emotional controls or an escape route from aversive experiences. Behaviours like over-eating, starving, and exercising prevented emotions and anxiety. The ED was described as a small and safe place.
”it's easier when you can flee to and be ”within” the eating disorder, it's easier when I can reduce my world to this” (No 4).
”the eating disorder has been a kind of control, a (way) to withhold feelings, I suppose” (No 41).
Different emotions were related as associated with ED behaviours, as exemplified below:
”Sorrow is probably, for me, (that which) strikes back on the eating” (No 41).
”The eating disorder is a way to handle anxiety and depression” (No 4).
”Shame triggers eating disorder symptoms. I've thought about not eating because I've felt some feelings and exercised to dampen everything” (No 12).
”Disgust is associated with the eating disorder” (No 4).
Eating disorder symptoms were also described as a help to numb emotions and stay focused. The downside of using ED behaviour to escape from emotions is that the ED does not just make the world narrower and safer but blurs personal experiences with thoughts and emotions that are controlled by the ED:
”that's what makes it difficult sometimes, what I feel and what the eating disorder feels, or what it means” (No 41).