Eating Disorder Attitudes, Behaviors, & Life Quality Scores: Survey Results

What is it like to live with an eating disorder? Narratives that attempt to explain the ED life inevitably contradict one another; for example, some may describe one’s disorder as a source of pride that one wishes would be recognized, while some may portray it as a shameful secret that one tries to hide. While eating disorders’ diagnostic criteria include certain behaviors and attitudes toward weight and eating, they don’t require any set of attitudes towards those disordered behaviors. This means different individuals with similar symptoms have quite different attitudes—and their EDs thus serve very different functions in their lives.

Of course, every eating disorder case is unique, but discussion, research, and clinical practice require some generalization from one individual’s experience to another’s. By better exploring these attitudes in the ED population, we can identify more specific patterns. This survey seeks to identify how ED attitudes correlate with one another, recovery status, disordered behaviors, and quality of life scores, and suggest those relationships’ possible implications.

Respondents

Women aged 18–30 with ongoing self-reported eating disorders were the target population for the survey. (Age and gender may confound the relationship between attitudes and ED characteristics, so it was confined to a common demographic.) With these constraints, it received 517 eligible responses, mainly from advertisement posts on MyProAna, r/EDAnonymous on Reddit, and a Facebook recovery group.

BMI Distribution

• Median highest: 25.1
• Median lowest: 18
• Median current: 20.25
• Percent who have been underweight: 54.6%
• Percent who have been overweight: 44.6%

Behavior Distribution

Figure 1

Restriction: Nearly all respondents engage in restriction, and when asked to place themselves on a scale of 1 (“not trying to quit at all”) to 7 (“trying to quit completely”), a majority reported not trying to quit.

Purging: Over half of respondents engage in purging, and they were split between those trying to quit and those not trying to quit.

Binge eating: Over two-thirds of respondents engage in binge eating, and a large majority reported trying to quit.

ED Attitude Scores

The survey included 20 questions measuring agreement with ED-related attitudes, from 1 (“strongly disagree”) to 7 (“strongly agree”), for “what was TYPICAL for your eating disorder when your eating disorder was a firm part of your life.” These questions were sorted into five scored clusters: historicist-purposefulist, egosyntonic, deliberate, validation-seeking, and self-motivated.

Historicist-Purposefulist

In “Book Review: All Therapy Books,” Scott Alexander points out that most therapies analyze disordered symptoms through a lens of historicism — “symptoms are the result of something that happened in a patient’s life history” — and purposefulism — “symptoms serve some quasi-logical purpose relating to the life history.” Although this narrative seems to make sense for many disorders, it may not always be the best explanation; after all, as Alexander points out, this once-common stance toward autism and schizophrenia has now been rejected.

Eating disorder therapy is typically historicist-purposefulist, but some treatment centers approach it differently. Mando Clinic in Stockholm, for example, emphasizes normalizing eating behaviors, rather than addressing supposed underlying psychological causes, and its recovery statistics are impressive. Similarly, Kartini Clinic rejects the concept of “arguing with the illness,” and its medical program has a low re-hospitalization rate.

Knowing this, does historicist-purposefulist therapy seem necessary for ED recovery? Is it even helpful? One may hypothesize that higher historicist-purposefulist attitudes are less associated with recovering. Perhaps if one believes that her past is driving her ED, it may be harder to change because she cannot change her past and might never fully recover from past traumas; she may be more successful by simply focusing on addressing behaviors in the present.

Responses to the following questions contributed to the historicist-purposefulist score:

• + My ED functions as my coping mechanism.
• + I know how my past has contributed to my ED.
• - I cannot really explain why I engage in ED behaviors.
• - My ED didn’t develop for a clear reason.

Figure 2

Scores ranged from -12 (strongest possible agreement with - statements and strongest disagreement with + statements) to 12. With an average of about 4.08, most respondents were in the positive range, agreeing with pro-historicist-purposefulist attitudes.

Egosyntonic

Many mental disorders provoke feelings of shame for being so “different” and engaging in behaviors that do not feel right. This may be true for eating disorders, but they can also make one feel the opposite — that one is successful, doing things properly, worthy of pride.

The more egosyntonic an eating disorder feels, the harder it is to want to recover. Although self-destructive ED behaviors seem undesirable to ordinary people, one would be understandably hesitant to abandon them when they make her feel better about herself, especially if hardly anything else in her life makes her feel that way. Becoming more recovered would make her feel weak, as if she is “giving in,” rather than strong. However, overly egodystonic attitudes may also hinder recovery, keeping one trapped by stigma and secrecy.

Responses to the following questions contributed to the egosyntonic score:

• + My ED gives me a sense of pride and accomplishment.
• + Recovery would feel like giving up what makes me “special.”
• - I am ashamed to admit I have an ED.
• - I criticize myself for my ED behaviors, wishing I could just be “normal.”

Figure 3

Egosyntonic scores are distributed nearly symmetrically, with an average of 0.12. Many respondents report strong agreement with a mixture of egosyntonic and egodystonic attitudes.

Deliberate

Eating disorders’ appeal largely stems from a desire to feel in “control.” However, many report that their ED compulsions have made them feel less in control than ever. As much as ED behaviors may feel like effortful choices, those with EDs may still find themselves turning to them even when trying not to.

One could hypothesize that the ED-as-compulsive attitude is positively associated with recovery status; those seeking recovery have realized that resisting behaviors is not as simple as wanting not to do them, while those who insist that their ED is under control feel less motivated to seek help. If ED-as-deliberate attitudes were positively associated with recovery, though, this might be because those who feel compelled feel less autonomous, less capable of changing themselves.

Responses to the following questions contributed to the deliberate score:

• + I put a lot of effort into my ED behaviors.
• + I seek motivation, help, and/or new methods to meet ED-driven goals.
• - I engage in ED behaviors even when I wish not to.
• - I wouldn’t know how to avoid ED behaviors even if I tried.

Figure 3

Deliberate scores are distributed fairly symmetrically, with an average of -0.12, and are more narrowly concentrated around 0 than other scores. No respondents scored -11 or -12; even the most compulsive respondents reported some deliberate component of their EDs.

Validation-Seeking

Eating disorders are often conceived as a “cry for help,” a way of showing pain that one cannot express. Even regardless of motivations for one’s ED, one would surely want her lived experiences to be understood, not trivialized, and may even feel that being seen as “sick” is a measure of success.

At the same time, though, people with EDs may hide their behaviors and deny having any problem. After all, if well-meaning loved ones notice, they will often try to interfere, keeping one from her ED-driven goals.

Responses to the following questions contributed to the validation-seeking score:

• + I wish the behaviors and health effects of my ED would become more severe so I would feel more legitimate.
• + I wish people would notice my ED and take it seriously.
• - I hope others don’t realize I have an ED.
• - I wish my ED behaviors weren’t seen as a problem to fix.

Figure 4

Validation-seeking scores were slightly concentrated toward the negative side, with an average of -0.13 and no respondents scoring +11 or +12. Overall, though, most respondents reported a mixture of seeking and avoiding recognition. The two statements “I hope others don’t realize I have an ED” and “I wish people would notice my ED and take it seriously” seem to be the most directly conflicting pair in the questionnaire, yet plenty reported agreement with both.

Self-Motivated

Loved ones of those with EDs may insist that even if one with an ED does not feel like recovering, she should try for their sakes, knowing that it is the “right” thing to do. One could hypothesize, though, that this is a poor substitute for genuine motivation; loved ones cannot fully control a person’s inner thoughts and hidden behaviors when she is alone. Therefore, higher levels of self-interest in recovery may be positively associated with recovery status and higher life quality.

Responses to the following questions contributed to the self-motivated score:

• + If I were to recover, it would be for my own benefit, not for others’ sake.
• + I know I’ll eventually have to recover if I want to live my happiest life.
• - I would engage in recovery behaviors to satisfy loved ones, even if I didn’t feel motivated to recover.
• - I would be most likely to recover if loved ones pushed me.

Figure 5

Clearly, feeling compelled by others to recover is not a common experience. Most responses leaned positive, with an average of +2.79; in fact, statements indicating less self-motivation were among the least agreed-to attitudes.

Overall Responses

The following table lists attitude statements in order from highest to lowest average agreement.

Figure 6

Higher historicist-purposefulist scores are associated with higher deliberate scores (p = 0.021); naturally, one who feels as if she chooses ED behaviors would believe these choices make sense to her. Higher egosyntonic scores are also associated with higher deliberate scores (p = 0.0007), suggesting that pride is linked to sense of self-control, and higher validation-seeking scores (p = 0.002), possibly because one less affected by stigma is more likely to admit a problem and seek help and/or seeking help validates that one indeed has a problem.

Quality of Life Scores

To measure “quality of life,” this section included questions from the AQoL-8D instrument and additional similar questions, chosen as most relevant to EDs:

Figure 7

Here, 1 indicates “very little” or “very rarely,” and 7 indicates “very much” or “very often.” Most strikingly, 80.7% of respondents reported agreement more often than not with “How often do you feel worthless?” and 66.5% of respondents reported it with “Do you ever feel like hurting yourself?”

No respondent answered as high or as low as possible to every question. The lowest response in the dataset is set as 0 and the highest is set as 44.

Figure 8

The only attitude score associated with a higher total quality of life score is a higher deliberate score (p = 0.048). This could be because lower life quality drives more strongly compulsive ED behaviors, and/or because feeling more in control of one’s ED makes one feel better about life overall.

The survey additionally included three original questions measuring ED symptoms:

Figure 9

A large majority of respondents report feeling upset with their bodies and criticizing themselves very often. Reported physical health is distributed more widely; still, most do not report often feeling in good health.

Recovering vs. Not Recovering

A commenter on MyProAna remarked that she wished there were an in-between answer for whether one is recovering, rather than a simple “yes” or “no.” The response, however, was that most people with EDs are in such a position, torn between continuing and recovering, but which side one ultimately reports if required to choose one is what’s telling; she and others agreed.

Figure 10

Selecting “yes” to this question has statistically significant associations with the following, compared to the “no” group:

• higher quality-of-life score (p = 0.026) — As predicted. Recovering improves one’s quality of life and/or those with lower quality of life are less inclined to seek recovery.
• lower egosyntonic score (p = 0.0001) — As predicted. Deriving self-worth from ED behaviors makes one less interested in “giving up” these benefits by recovering and/or those who feel distress at the fact that they are not “normal” are more inclined to seek recovery.
• lower deliberate score (p = 0.037) — As predicted. Those seeking recovery have confronted the reality that their behaviors are out of control when they’ve tried to quit and/or those who feel as if they work hard for their ED feel more reluctant to quit.
• higher validation-seeking score (p = 0.047) — As predicted. Feeling inclined to hide behaviors makes one less inclined to recover and/or those who wish their EDs would be seen as valid feel more inclined to have their EDs treated as such.
• lower response to “Do you ever feel like hurting yourself?” (p = 0.0001) — Upon finding that recovery status was surprisingly not associated with ED-specific quality of life questions, every question in this section was tested for statistical significance, and this is the most striking one. Those with more frequent desires to hurt themselves feel less inclined to quit self-destructive ED behaviors and/or those who are trying to recover currently feel less inclined to self-harm.
• higher response to “How much hope do you have in your future?” (p = 0.014) — Recovery improves one’s sense of hope and/or those with more hope see more value in trying to recover.

Recovery status is not significantly associated with the following:

• historicist-purposefulist score (p = 0.19) — Whether historicist-purposefulist therapy is best for EDs is still worth investigating, but clearly, historicist-purposefulist attitudes do not seem to hinder one’s possibility of recovering.
• self-motivated score (p = 0.21) — Most respondents, recovering or not, feel more self-driven than others-driven to recover, so there is not much of a real difference between the groups.
• response to any other particular question in the “Quality of Life” section:

▹ “How often do you feel upset with your body?” (p = 0.098), “How often do you criticize yourself?” (p = 0.53), and “How often do you feel worthless?” (p = 0.076)— One might expect that responses to these would be associated with recovery status; otherwise, what is the goal mental state of recovery? What it suggests, though, is that even as poor body image and self-worth persist, one may be trying to avoid ED behaviors. Such strong feelings do not necessarily prevent one from doing so.

▹ “How much do you feel you can cope with life’s problems?” (p = 0.36) and “How often do you feel in control of your life?” (p = 0.78) — Not everyone recovering has found better coping mechanisms to replace their ED, but at least, despite common agreement with “My ED functions as my coping mechanism,” those trying to quit do not find it harder to cope. Similarly, although people with EDs often cling to them for a feeling of self-control, trying to quit does not make one feel less in control.

▹ “How much energy do you have to do the things you want to do?” (p = 0.75)

▹ “How often do you feel physically in good health?” (p = 0.96 — WOW!) — The mean score in the “yes” group is 3.45, and for “no,” it is 3.44.

▹ “How satisfying are your relationships with others?” (p = 0.32)

▹ “How content are you with life?” (p = 0.50) — Clearly, while current life satisfaction is not a predictor of recovery status, the hope of a satisfying future is.

Binge Eating vs. Not Binge Eating

While attitudes toward purging are split, as seen in Figure 1, respondents’ attitudes toward restricting and binge eating show clear directionality — most who restrict are not trying to quit restriction, while those who binge are trying to quit binge eating. Therefore, although both are seen as compulsive disordered behaviors, they are likely not mere “opposite sides of the coin,” as people without EDs may describe them. The typical attitudes and feelings for each are likely quite different from each other.

Compared to responses that do not report binge eating, EDs involving binge eating have statistically significant associations with the following:

• lower quality of life (p = 0.0077), higher response to “How often do you feel worthless?” (p = 0.018), higher response to “How often do you feel upset with your body?” (p = 0.0041), and higher response to “Do you ever feel like hurting yourself?” (p = 0.0091)— Binge eating lowers one’s quality of life, sense of self-worth, and body image, and drives one to hurt oneself and/or those with EDs with lower life quality, lower self-esteem, worse body image, and more frequent self-harm desires are more driven to binge.
• lower response to “How often do you feel in control of your life?” (p = 0.04) — Binge eating makes one feel less in control of life and/or those with EDs who feel less in control of life are more driven to binge.
• lower egosyntonic scores (p = 0.0007) — Binge eaters feel less “successful” in their EDs and/or more ashamed of their behaviors.

Binge eating is not significantly associated with the following:

• deliberate scores (p = 0.73) — Although binge eating is more of an out-of-control egodystonic behavior, the average deliberate score is actually slightly higher for respondents who binge; restriction feels less compulsive for them, and they put effort into avoiding binges.
• historicist-purposefulist scores (p = 0.51)
• validation-seeking scores (p = 0.33)
• response to “How often do you criticize yourself?” (p = 0.19) — Responses were very high overall, so there is not much of a real difference between the groups.
• response to “How often do you feel physically in good health?” (p = 0.30)
• response to “How content are you with your life?” (p = 0.29) and “How much hope do you have in your future?” (p = 0.12) — Lower overall quality of life scores for binge eaters may be more due to lower self-image and sense of self-control rather than worse life circumstances.

Summary of Findings

This survey reveals common threads in individuals’ ED attitudes:

• belief that EDs stem from one’s past to serve a purpose in one’s present
• a mixture of egosyntonic and egodystonic attitudes
• a mixed sense of control and compulsion
• both seeking and avoiding recognition of the seriousness of one’s ED
• feelings of worthlessness
• frequently criticizing oneself

Where individuals vary, there are some statistically significant relationships between attitudes and ED characteristics:

• egosyntonicity: positively associated with deliberation and validation-seeking; negatively associated with recovery and binge eating
• attitude of ED as deliberate: positively associated with quality of life, historicist-purposefulist attitudes, and egosyntonicity; negatively associated with recovery
• validation-seeking attitude: positively associated with both egosyntonicity and recovery (even though these two factors are negatively associated with each other!)
• historicist-purposefulist attitude: positively associated with attitude of ED as deliberate (thus negatively associated with attitude of ED as compulsive)
• binge eating: positively associated with feelings of worthlessness and self-harm; negatively associated with egosyntonicity, quality of life, body image, and feeling in control of life

Discussion

In survey responses from 517 women age 18–30 with self-reported ED behaviors, significant relationships were found among ED attitudes, behaviors, and life quality measures. While there is much agreement upon “historicist-purposefulist” and “self-motivated” attitudes, respondents are conflicted about whether their EDs feel egosyntonic or egodystonic, whether their behaviors feel deliberate or compulsive, and whether they seek or avoid recognition of their serious ED behaviors — and which way one leans for each of those can predict other characteristics of her ED.

One implication is that binge eating, a seemingly under-discussed component of the ED experience compared to restricting and purging, deserves more serious attention. The presence of binge eating predicts worse mental health symptoms, such as self-harm desire, poor body image, and feeling worthless, but desire to recover is less hindered by egosyntonic attitudes. Therefore, those who report binge eating may be better able to benefit from treatment.

Thank you to everyone who participated. I wish you health and happiness.