Introduction

Full recovery from an eating disorder is more than physical restoration or behavioral remission. Full recovery includes physical, behavioral, and psychological recovery, defined by Bardone-Cone and colleagues as a BMI equal or greater to 18.5, no bingeing, purging, fasting or other eating disorder diagnoses for 3 months, and within one standard deviation of age-matched community norms on all subscales of the Eating Disorder Examination Questionnaire (EDE-Q), whereas partial recovery does not include the psychological component [1].

Great value lies in eating disorder research which includes words of people in recovery, beyond imposing pre-defined categories on them, which can be overwhelming [2]. Individuals in recovery do not always agree with research-created categories. For instance, differences have been demonstrated between the recovery categories in which researchers place participants compared to those in which they place themselves [3]. Other previous research found that most recovered individuals agreed on six recovery criteria categories, ranked from more to less important: (1) positive relations with others, (2) self-acceptance, (3) autonomy, (4) personal growth, (5) eating disorder remission, and (6) self-adaptability [4]. Without consulting those in recovery, these categories would likely have been ordered differently. The purpose of this study was to add experiential data from individuals with lived experiences of eating disorder recovery regarding their daily habits and attitudes toward eating and self-weighing to the existing research literature.

To extend previous research defining partial and full recovery, it is important to learn from individuals in recovery regarding their routine or daily eating and self-weighing habits. Eating habits in eating disorder recovery lie on a continuum from structured, prescribed meal plans to unstructured intuitive eating. Intuitive eating can be a goal for those in recovery. The four research-based components of intuitive eating are: eating for physical rather than emotional reasons, unconditional permission to eat, reliance on hunger and satiety cues, and body-food choice congruence [5]. Some residential treatment centers scaffold the transition from prescribed meal planning to more intuitive eating [6]. Another daily habit of some in recovery is self-weighing. Self-weighing is discouraged by cognitive behavior therapists in office settings, in favor of weekly in-office weighing [7]. Also, self-weighing has been linked to lower levels of intuitive eating and greater eating disorder symptom severity [8, 9].

This study gathered quantitative and qualitative data via an online survey from the lived experiences of adults (at least age 18) in recovery from eating disorders regarding their habits and attitudes around eating and self-weighing. An anonymous survey was utilized to help participants feel as comfortable as possible in answering the questions truthfully. The findings add to the existing research because routine habits and attitudes among those in eating disorder recovery have not yet been documented using an open-ended online survey.

Method

The current study was approved by Drake University Institutional Review Board, which is charged with the responsibility of overseeing the protections of human subjects. An anonymous, open-ended, online survey was distributed via social media and word of mouth via secure Qualtrics™ survey software. No demographic data were collected to encourage participants to be forthcoming, except it was restricted to individuals in eating disorder recovery aged 18 and older. During the month, the survey was open (October, 2018), 119 people clicked on the link and 32 people completed the survey, a 27% completion rate. The survey was closed one week after the final response was received. One participant’s responses were excluded from analysis because of reported eating disorder behaviors. Participants were told by friends, or more likely, active on Facebook or Twitter during that time. Interest was possibly heightened when the invitation to participate was shared by people in recovery on social media who wanted to be supportive and get the word out about the survey. It is possible that those who clicked the link but did not complete the survey were under 18, not in recovery from an eating disorder, or did not have the time or energy to complete the survey. Those who did complete the survey wrote at length about their personal experiences.

Three groups were determined by participant self-identification through their survey responses: Recovering, Recovered, and Partially Recovered. Those in the Recovering group wrote either that they did not believe in the possibility of being recovered or that they would always be recovering. Those in the Recovered group stated that they were recovered. The Partially Recovered group members wrote that they believed in the concept of being recovered but that they did not feel they had yet reached recovered status.

The online survey contained 14 qualitative and quantitative questions developed by the first author, drawing inspiration from research on full recovery, particularly the work of Dr. Anna Bardone-Cone and colleagues [1, 3] with the goal of adding data from individuals with lived experience of eating disorder recovery to the existing research literature. The responses to five questions selected for this brief report (Table 1) focused on the lived experiences regarding habits and attitudes around eating and self-weighing from respondents in the three self-identified recovery groups.

Table 1 The five open-ended survey questions covered in this brief report
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Quantitative analyses were conducted using SPSS software. The data were not normally distributed. Therefore, instead of ANOVAs, the non-parametric Kruskal–Wallis test was used to compare the three groups regarding differences in years of recovery; and the non-parametric Chi-Square test was used to compare the three groups regarding the nominal variables of self-weighing, attitude toward the scale, practice of intuitive eating, and following a prescribed meal plan.

Following qualitative data coding and manifest content analysis outlined by Bengtsson [10], the qualitative data were reviewed separately by the two authors, both of whom stayed very close to the text of the responses from the open-ended survey. Codes were developed using the text of the written responses. Categories were formed from groups of related codes, and then broadened into content area domains, which are presented below as themes and subthemes. Codes, categories and themes with subthemes were compared by the two authors and differences were discussed and resolved by consensus. Finally, findings were re-reviewed and checked for accuracy with the original responses by a student worker. Qualitative data analysis software was not employed. Member checking was not possible due to respondents’ anonymity. Participants, referred to by gender-neutral pseudonyms, wrote extensively in response to the questions and their words are included as much as possible below to illustrate themes and help readers understand their experiences.

Results

The online survey respondents were 31 adults (age 18 or over) who identified as having struggled with and being in recovery from, or recovered from, an eating disorder. Further demographic data were not collected to encourage respondents to be forthcoming. This was determined to be a successful approach, because most respondents wrote at length and included many personal details of their recovery in their responses. Quantitative and qualitative results are presented separately below.

Quantitative results

Respondents self-identified their eating disorder diagnoses, recovery categories, and years of recovery (see Tables 1 and 2). There were ten respondents who had been diagnosed with Anorexia Nervosa, another ten respondents who had been diagnosed with Bulimia Nervosa, nine respondents diagnosed with both Anorexia Nervosa and Bulimia Nervosa, one respondent with Eating Disorder Not Otherwise Specified, and one other respondent with Avoidant Restrictive Food Intake Disorder (see Table 2).

Table 2 Eating Disorder History and Years of Recovery by Recovery Group
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Table 2 shows that the Recovered, Recovering, and Partially Recovered groups differed from each other regarding years in recovery. The recovery groups had different years of recovery when compared with each other, with the Recovered group averaging 12.28 years in recovery, the Recovering group averaging 4 years in recovery, and the Partially Recovered group averaging 9 years in recovery. The independent-samples Kruskal–Wallis confirmed that the distribution of years of recovery was statistically significantly different across the three categories (2, N = 31) = 6.25, p = 0.04.

As shown in Table 3, there were statistically significant differences comparing all three groups using the Pearson Chi-Square Test regarding the habit of following a prescribed meal plan (2, N = 31) = 11.30, p = 0.004 and having a negative attitude toward the scale (2, N = 31), = 6.09, p = 0.048. Most of the Recovered group had negative attitudes about self-weighing and none of the Recovered group followed a prescribed meal plan, but rather they reported following a regular pattern of meals and snacks and/or intuitive eating. All five members of the Recovering group followed prescribed meal plans or engaged in self-weighing but only one member of the Recovering group had a negative attitude about the scale. Most of the Partially Recovered group weighed themselves regularly, but saw self-weighing as a habit they were working to change. The Partially Recovered group members who followed a prescribed meal plan reported it was a habit they planned to replace with intuitive eating eventually.

Table 3 Attitudes and Habits around Self-Weighing and Eating Frequencies by Recovery Group
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Qualitative results

The analysis of the qualitative survey responses revealed two primary themes: (1) Eating Disorder Recovery Identity and (2) Habits and Attitudes in Eating Disorder Recovery. The first theme includes responses from the Recovering group who identified recovery as a state of being, as opposed to an end goal. Similarly, the Recovered group named “recovered” as part of their identity. The second theme highlights the various recovery habits and attitudes of the participants from all three groups, which sometimes differed by recovery category. Quotations from survey respondents illustrate the habits and attitudes data, and also address respondents’ sense of identity related to their eating disorder recovery.

Theme 1: eating disorder recovery identity

Subtheme 1a: I will always be recovering

All Recovering group respondents stated some variation of, “I will always be recovering.” Emerson shared, “I know that my default coping mechanism is to engage in eating disorder symptoms. I have to consciously choose to use my wise mind and remain in recovery mode. So, I will always be recovering.” Zion added, “I am not sure if I believe in recovered—eating disorders may always appear to be a refuge and solution when life gets tough.”

Subtheme 1b: recovered feels like an identity

From the Recovered group, Riley shared, “I was in recovery for at least 5 years. It was the worst experience of my entire life. It was a living hell. It was so daunting, so depressing in and of itself. Never knowing, failing myself and everyone else over and over again and having to numb that feeling because it was too hard to bare. Being recovered is a breath of fresh air.” Wren was clear about their identity: “I identify as a fully recovered individual. I never thought I would. I never thought I would care about the difference or I thought I would always feel recovering—because I never thought I could heal. And now that I have healed—recovered feels like an identity.”

The Partially Recovered group aspired to a recovered identity in the future. Baily wrote, “I don't feel I've fully recovered. While I no longer binge or purge, the anxiety around food and weight persists.” “I agree with the concept of recovered, but I haven't experienced it,” Alex shared. Gianni added, “As of right now, recovered (emphasis on the part that it's an end point) seems like a hard myth, but I'd like to believe that it's real.” Cameron declared, “I want to be FULLY recovered.”

Theme 2: Indicators of Recovery

Subtheme 2a: I have gone back and forth

Recovering group members either weighed themselves regularly or followed a prescribed meal plan. Fallon admitted, “I have gone back and forth and have owned and donated/thrown away/locked in the trunk of my car multiple scales over the years when I become obsessive. Right now, I check it once a day.” Regarding prescribed meal planning, Frankie conceded, “I do not count my calorie intake, but you can only de-memorize the nutritional content of foods to a certain extent. I'm generally much more fluid in my approach to eating now though.” “My meal plan prescribes three meals per day, morning and afternoon snacks, and a bedtime snack. I try to stick with the plan and the portions recommended,” added Emerson.

Many in the Partially Recovered group either self-weighed regularly or followed a prescribed meal plan. But the Partially Recovered group saw themselves as in transition to fully recovered habits. Gianni commented, “Occasionally if I see a scale, I will step on it. I don’t think the scale is helpful to my recovery.” Ali noted, “I try to eat intuitively and if I can't do that, then I go with three meals and three snacks per day, and sometimes what I eat is planned but mostly it depends on my life situation at that meal.”

None of the Recovered group followed a prescribed meal plan at this point in their lives. They described a structure of regular meals and snacks, or ate intuitively. Valentine explained, “I still eat breakfast snack lunch snack dinner snack, to eat every few hours.” Yoshi wrote, “I just got back into a regular pattern and stuck with it.” Sam’s experience was more gradual: “As I progressed in recovery (and with the help and support of my dietitian) I was able to wean off a prescribed meal plan and learn to intuitively eat again.”

Subtheme 2b: I have slowly released the power of the scale

Most of the Recovered group shared negative feelings about self-weighing and did not weigh themselves regularly. For instance, Dana wrote, “I only get weighed at the doctor. I used to weigh myself multiple times per day which would dictate my mood and my eating disorder behaviors. I threw away my scale years ago. I have slowly released the power that the scale has over me. Anyone in recovery should get rid of their scale. It tells you absolutely nothing. And having the scale dictate your self-worth is absolutely devastating.” Keegan qualified, “Sometimes I weigh myself, maybe every 3 months or so. The actual number doesn't have the power it once did for me.” And Cassidy concluded, “I gave it up years ago when I realized nothing good ever came out of it and it cannot give you any indication of your health status at all. I now help others do the same and it is a good indicator of recovery.”

Conclusions

The results of this open-ended, online, anonymous survey study of individuals in recovery from eating disorders confirm and extend current eating disorder recovery research. This study adds Recovering as a potential distinct recovery category in addition to Recovered and Partially Recovered. People in recovery do not always match their recovery status into the research-based recovery category chosen for them by researchers or clinicians [2], but when asked in an open-ended way, the current survey respondents all categorized themselves as either Recovering, Recovered, or Partially Recovered. These three categories extend current research findings from two categories of Recovered and Partially Recovered [1, 2] to include the understanding that some individuals in recovery feel as though they will never fully “arrive” at a Recovered status, but will always remain in the process of Recovering.

This study also builds on previous research findings by identifying that those who self-identified in the three recovery groups averaged a different number of years in recovery [3, 4]. Those in the Recovered group had the longest number of years in recovery. They were also more likely to report that they did not follow a prescribed meal plan, but instead practiced intuitive eating or ate in a regular pattern of meals or snacks. This further extends the current research on intuitive eating [5, 6] to the Recovered population. Additionally, those in the Partially Recovered group were very aware of their progress but saw it as a stage or phase on their way to becoming fully recovered, so even if they did not currently eat intuitively, they planned to do that sometime in the future.

Previous research shows that self-weighing can have a negative effect, including higher levels of restrained eating and greater concern around shape and weight in both the recovering and general population [8, 9]. The current study supports and extends these previous findings as those in the three groups had different attitudes toward the scale, with the Recovered group most likely to have a negative attitude toward the scale. Recovered group members also commented that it was more helpful for their self-worth to avoid the scale.

Finally, including lived experiences of individuals in eating disorder recovery as other researchers have done, [2,3,4] adds more depth and richness to an understanding of the recovery experience. In the current study, the existence of the Recovering group is proposed, and further data are presented about the differences in habits of attitudes of those in the three recovery groups, which can be helpful for clinicians and researchers.

Limitations, strengths, and future research

Limitations

The anonymous online open-ended survey reached a self-selected convenience sample. It is not known why 87 people who clicked on the survey link did not respond, nor whether these individuals differed in any way from the participants, as no demographic data were collected. The 27% response rate is a limitation. It is also possible that respondents found survey questions ambiguous. For instance, “meal plan” can be interpreted differently. Additionally, the qualitative data were not triangulated with other data sources, which could damage the study’s trustworthiness and credibility.

Strengths

This study investigated routine but under-investigated areas regarding habits and attitudes around eating and self-weighing among people in eating disorder recovery in an open-ended online survey. Including the words of individuals who are in recovery from an eating disorder is a strength. Anonymity was intended to encourage respondents to be forthcoming. The responses were very thorough, indicating a high level of engagement among participants. The online nature of the survey also allowed access to participants worldwide.

Future research

Face-to-face investigations would allow researchers to clarify questions and reduce possible ambiguity. Alternatively, more widely disseminated anonymous surveys would maintain the strengths of the current study while adding to the validity of the responses through a greater number of participants. Continued inclusion of words of individuals in recovery from an eating disorder is encouraged as a valuable endeavor to many stakeholders including clinicians, researchers, and those in recovery.