The aim of this chapter was to describe how respondents understood eating disorders to develop before asking them to react to specific ways of thinking about eating disorders (such as “mental illness”) and before presenting them with the idea of a genetic causal factor. The chapter had two main goals: to illustrate (1) the complex, dynamic causal models put forth by respondents, and (2) their perceptions of their own ambiguous, ambivalent agency in carrying out eating disorder behavior.
Causal stories were complex and dynamic and involved compound, rather than simple, easily disaggregated causes, suggesting that any causal story incorporating genetic causes also will likely be complex rather than simple (their genetic causal models will be described in Chapter 5). To capture common themes in respondents‟ descriptions of causality in eating disorders, I presented three frequently-cited causal categories: valorization of thinness, coping responses, and repetition over time. These were not reducible to biological, “environmental” (e.g., social, cultural, familial factors), nor “individual” (e.g., psychological, agentic) factors and frequently involved elements of all three. In addition to the three broad causal categories, I identified four, more specific causal elements that I hypothesized to be
compatible with genetic ideas (biological factors, enduring individual dispositions such as personality) or incompatible (abuse, trauma, or injustice; gender inequality). Relationships
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of these variables to respondents‟ initial reactions to the idea of a genetic causal factor will be examined statistically in Chapter 5.
As they described causal factors, respondents also directly and indirectly addressed the question of their own agency in the development and continuation of their eating
disorders. In general, I (and they) found it difficult to simply summarize perceptions of their own agency. While respondents did speak in terms that connoted free agency, they always also spoke in terms that connoted either a lack of agency, or a constrained form of agency I labeled “quasi-agency.” I offered four reasons why there might be this mix of agency, non- agency, and quasi-agency: that agency may be different at different phases of the eating disorder (e.g., starts as a choice but goes out of control); that some aspects of the eating disorder can be controlled whereas others cannot (e.g., choosing to avoid triggers that would make one lose control); that in hindsight what seems like agency really was not (e.g., the eating disorder had taken over, but at the time it felt like a choice); and that it may be
difficult to self-interpret behavior as simply non-volitional when one is held responsible for it by others (i.e., others are telling people with eating disorders that it is a choice, which makes them wonder). The interpretation of agency had implications for stigma and guilt. Most respondents said they would ideally like others to see eating disorders as something neither chosen nor easily controllable: a struggle -- or even an illness -- for which compassion was deserved.
The next chapter goes into greater depth about what respondents think eating disorders are. I end with a quote from Karen, an inpatient, to convey the confusion she and others felt as they struggled to explain their experience.
It‟s a disease. It‟s an illness just like a physical – well, it is a physical illness also. To me it‟s mental and physical. Because, it‟s physically killing you. I would like them to
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know that it‟s not something I asked for. It‟s not something I wanted. It just
happened. It just kind of took over me. Because of my weakness. I don‟t know. The stress. OCD. My childhood. Of course the guy I was dating. It just everything kind of just played a part in it. But, I don‟t know if it was going to – it could have came regardless. I mean it just could have happened. I could have started – I told you I was already feeling uncomfortable with my body. My self. I felt at that time just wasn‟t happy with me. I didn‟t have a good relationship with any – my friendships weren‟t that good. They all had boyfriends at that time. And, I didn‟t. Until I met this guy. And, I just – I was thinking to myself “Well, maybe if I put on a little weight. What‟s wrong with me?” Even before it really took place. So, it could be something that just was going to happen. I don‟t know. (Karen, T-AN)
Karen says “I don‟t know” three times in this passage. She offers clearly medical language but is not confident that this explanation is sufficient, so she must explain how it took her over and why. She points to her own “weakness”, OCD, early childhood, the relationship that precipitated the disorder, but also suggests it could have developed without these factors being present. Other respondents also expressed a lack of certainty about causation. The sheer number and variety of causes mentioned was a testament to the complexity of and confusion about causation. As they struggle to explain why they cannot “just stop” the problem behaviors, some find medical concepts useful, as I have already illustrated. As I will show in later chapters, many will use or interpret genetics to be useful for making this case, though there will be dissenters. Now I turn to their models for what eating disorders are.
CHAPTER 4:
UNEVEN, UNCERTAIN MEDICALIZATION: PERCEPTIONS OF EATING DISORDERS
Based on Chapter 3, we know that these respondents conceive of causality and agency in complex ways. But what do they think eating disorders are? Are they diseases, choices, social problems, or something else? In this chapter, I discuss their reactions to several terms to describe eating disorders. First, I briefly discuss their views about eating disorders as a problem generally, and as a “problem with society or culture” specifically. Second, I examine their reactions to five concepts related to medicalization of eating
disorders. Third, I present findings for an index of endorsement for medicalized terminology based on these five concepts. I begin by considering eating disorders as a problem and as a “problem with society or culture” because virtually all respondents endorsed these and they were not included in the endorsement index.