Untreated recovery from eating disorders.

Woods, Susan

Eating disorders are the third most common chronic condition among adolescent females in the United States (Fisher et al., 1995). It is estimated that 1% to 3% of adolescent females suffer full syndrome anorexia or bulimia nervosa, and up to 20% of high school and college age females have partial syndrome eating disorders (Sands et al., 1997). Eating disorders are associated with devastating physical, psychosocial, and financial consequences, and have the highest mortality rate of any mental health disorder (Fisher, 2003; Rome et al., 2003).

After two decades of research, there remains limited understanding of the eating disorder recovery process. Approximately 50% of patients do well after inpatient treatment; 20% do poorly; and 30% do reasonably well but continue to have symptoms (Fisher, 2003). These recovery outcome results, however, have been based on studies of patients in specialized treatment centers. Schoemaker (1998) notes, "We don't know in how many cases eating-disordered patients may improve or even recover without professional treatment" (p. 204). The present exploratory study was designed to examine the experience of recovery from an eating disorder without clinical treatment.

METHOD

Instruments

Based upon a review of literature and input from four undergraduate student research assistants, a qualitative, open-ended, electronic email survey was developed for this study. This format allows respondents to describe events, perceptions, and experiences in their own words. The survey questions were reviewed by a panel of four experts in eating disorder treatment and research, and was revised based upon panel suggestions. Following human subject research approval, eight survey questions were made available on the study e-mail address: (1) When did your eating disorder symptoms begin/emerge? (2) How did they start? (3) What factor(s) led to the development of your behavior? (4) What behaviors did you engage in? (Please list or describe all behaviors.) (5) Was there a key turning point in the initiation of your recovery? (6) Did you see/consult with any of the following: physician(s) therapist(s) or dieticians(s)? If yes, please describe: Who was consulted? How often? Length of treatment? (7) Do any physical and/or psychological aspects of your eating disorder persist? Please describe. (8) What and/or who do you find most helpful in keeping you from your former behaviors?

The survey cover page contained the study purpose, an explanation of confidentiality, a short demographic section, instructions on paper mail-in for anonymity assurance, and a statement thanking the participant for his or her time and generosity. Respondents were given information on obtaining study results, and were encouraged to contact the researcher by e-mail, or faculty telephone, with any questions, suggestions or thoughts.

Procedure

Several hundred survey flyers were placed on bulletin boards throughout the campus. The bold headline, "Recovery from Eating Disorder Study," was followed by, "If you have recovered from an eating disorder without extensive outpatient or inpatient clinical treatment, and would assist with a study on your experience of recovery, please contact (e-mail address). This eight-question e-mail study is confidential and can be answered anonymously. Your input is important and greatly appreciated." At the bottom of the survey were tear-off e-mail address tab strips. Throughout the semester student assistants monitored and replaced the flyers. Surveys were collected for three months.

Design

Ground theory (Glaser & Strauss, 1967) was employed to sort through themes and connections in the data. This qualitative process attempts to discern the mechanisms and pathways of experience, and the understanding of phenomena in the generation of theory.

RESULTS

Demographics

Twenty-two respondents completed the e-mail survey. Four respondents had been in hospital and inpatient treatment programs prior to recovery. The recovery following inpatient treatment surveys were reviewed as a comparison group, but are not included in the main analysis. Of the 18 respondents who reported recovery without treatment, 16 were female (89%), and 2 (11%) were male. Seventeen of the respondents were white, and one female respondent was Black. All respondents were 18-21 years of age and full-time students at one midsize, midwestern university. All respondents met the DSM-IV (American Psychiatric Association, 2000) diagnostic criteria for full syndrome anorexia nervosa or purging type bulimia nervosa prior to recovery. Eight females and one male (50%) reported suffering from purging type bulimia, six females and one male (39%) reported restricting type anorexia, and two females (11%) reported binge-eating/ purging type anorexia nervosa. All respondents reported regular or intermittent excessive exercise throughout the duration of their disorder.

The respondents began their disordered behavior between the ages of 12 and 17 (modal age = 15). All respondents were competitive high school athletes in the following sports: gymnastics/cheerleading (10 females), elite junior level figure skating (1 female), cross-country/ track (4 females, 1 male), softball (1 female), and football (1 male).

Onset and Duration

The period from onset of symptoms to the first steps toward recovery ranged from 6 months to 4 years, with a mean duration of 1.94 years.

Onset and Behavior Reinforcement Factors

A web of factors leading to onset was reported. The need to lose weight for sport performance/appearance, critical "fat for your sport" comments from family members, coaches and peers, and self-comparison to the "ideal" were common themes in all respondent narratives. No respondent in the recovery without treatment group reported abuse or sexual assault as a factor. Only two respondents (one female softball player and one football player) reported being "a little" overweight prior to disorder onset. All other respondents noted they were within, or slightly below, the ideal recommended weight range for their height prior to initial weight loss.

All respondents reported that their behaviors were reinforced and maintained through successful weight loss/control, and the initial compliments of parents, coaches, boyfriends and peers on their appearance and/or weight loss achievements.

Recovery Turning Point

Four female respondents reported that an early empathic and supportive intervention by their mothers was the key turning point toward recovery. These respondents met the criteria for restricting anorexia prior to intervention, and reported the shortest duration from symptom onset to the beginning of recovery, with a mean of 9 months. Two females reported that after a long period of confrontive anger, a heartfelt, emotional plea from their fathers was the turning point in their disorder. Both respondents met the criteria for restricting anorexia. The father intervention group had a disorder onset to turning point duration of 1.4 years. Five female respondents, all meeting the criteria for bulimia nervosa, reported that their boyfriends provided the key turning point in their recovery. The mean duration of their disorder onset to turning point was 2.1 years. Two females and one male listed a "best college friend" as the key to their recovery initiation. These three respondents were bulimic, and reported the duration of their disorder to initial recovery turning point as approximately 3.0 years. Three female respondents reported that a combination of dental and gastrointestinal problems, along with the realization that they wanted to have an authentic life, not just the disorder, led to their recovery. Two respondents met the criteria for binge-eating/purging anorexia nervosa and one respondent was bulimic. One male restricting anorexic reported that his key turning point followed several months of constant fatigue, and the subsequent inability to perform academically and physically. The four self-initiated recovery respondents reported the longest duration of their disorders, with a mean duration from onset to turning point of approximately 3.9 years.

Professional Consultation

Two former restricting anorexic females reported that due to parental insistence, they had a physical exam with their primary care physician at the beginning of their recovery. One of these respondents also reported that her primary care physician arranged a two-session family consultation with a dietician. No other respondent reported clinical treatment during their recovery process.

Physical Outcome

The nine respondents reporting recovery from bulimia noted that they experience some intermittent gastrointestinal symptoms, including constipation, pancreatitis, acid reflux, and heartburn. Dental damage, requiring root canals and/or major tooth restoration, were common to all recovering bulimics. Of the two recovering binge-eating/purging anorexics, one reported all of the above symptoms, and one reported that despite a year of restricting and intermittent purging, she seems to have no signs of physical damage at this time with the exception of occasional heartburn.

One former restricting anorexic and one recovering binge-eating/ purging anorexic noted that recent bone scan testing has revealed that they are at high risk for osteoporosis. The six female and one former male restricting anorexics reported that, to their knowledge, they evidence no residual physical damage from their disorder. The male respondent attributed his lack of symptoms to the use of daily vitamin, mineral, and protein supplements throughout his disorder, and the careful nutritional balancing of his exact 1,200 calorie/day food intake before beginning his recovery.

Psychological Outcome

Most respondents noted that some cognitive aspects of their disorder persist. Feeling "too full" after a large meal sometimes reactivates the two former binge-eating/purging anorexics and nine bulimics urge to purge, and stimulates anxiety for one former male and three former restricting anorexics. These fifteen respondents report that by increasing their aerobic exercise the day after overeating, and by engaging in positive self-dialogue, they are able to avoid the reactivation of further disordered thinking or behavior. (All study respondents exercise daily, but noted that their levels of exercise are now within recommended levels.)

All but three females noted that accepting a higher weight or larger clothing size remains difficult and troubling even after recovery. Both the male and thirteen female respondents describe that recovering, or discovering, a sense of authentic identity remains an ongoing process. The three females reporting no residual "disordered thinking" were all former restricting anorexics whose turning point for recovery was early empathic intervention by their mothers prior to age 15.

Recovery Sustaining Factors

Fourteen respondents reported that the sustained and supportive reinforcement from a parent, boyfriend or friend is most helpful in sustaining their recovery. The four respondents whose recovery was self-initiated reported that the need to experience and enjoy an authentic life is the most helpful factor in sustaining their recovery. Both female former binge-eating/purging anorexics reported that their current primary care physician had recently prescribed a serotonin reuptake inhibitor after they described their history and current anxiety symptoms. These two respondents reported that the medications seem to have a positive impact on their continuing recovery.

DISCUSSION

The results of this exploratory study support the feminist/sociocultural theory that eating disorders are culturally produced and culture-bound syndromes (Gordon, 2000; Bordo, 1997). A common theme in all female respondent narratives was the importance of being exceptionally slender and fit in order to compete, gain positive attention, and win love and admiration.

 Respondent 2: I feared gaining weight because I didn't want to be
 one of those girls that looked fat in their leotard.

 Respondent 11: Being small and skinny in gymnastics and dance, to
 look good in general.

 Respondent 9: I was the only Black cheerleader at my mostly white
 high school. I heard remarks from the crowd about my big butt and
 size compared to the white girls. That's when my disorder started.

 Respondent 3: My parents were critical no matter how well I did. I
 thought I could please them by becoming the thinner daughter they
 wanted, but nothing changed.

As Bordo (1997) notes, "Families exist in cultural time and space. So does 'peer pressure,' 'perfectionism,' 'body-image distortion,' and all those other elements of individual and social behavior that clinical models have tended to abstract and pathologize" (pp. 119-120). Western adolescents find themselves in a space and time where the demands to perform, measure up and excel seem relentless. The attitudes evidenced in these narratives are far from exceptional. They mirror the normative attitudes expressed by female students at a regional midwestern university. The need to be exceptionally slender and fit seems a given, a vital component for success. (While male students have a differing standard for ideal--low fat but "buff," well-sculpted muscles--the necessity of meeting "ideal standards" seems unquestioned.)

All former bulimics and purging anorecics' narratives emphasized the normative nature of their disorder.

 Respondent 7: Most of my friends and teammates were throwing up and
 using laxatives. Along with my boyfriend, a turning point for me was
 when we taught a younger girl how to throw up at cheeerleading camp.
 It made me kind of realize what we were doing.

Although a meta-analysis of 34 studies found no significant eating disorder risk effects for gymnasts--dancers, and elite athletes in sports emphasizing thinness--were at increased risk (Smolak, Muren, & Ruble, 2000). Most of the athletes in this study felt that their coaches either overlooked, or seemed pleased, with their weight loss. Half of the female respondents and both male respondents reported praise from coaches.

 Respondent 16: My football coaches complimented me on my rapid
 15-pound off-season weight loss, so did my teammates. My speed and
 mobility definitely increased at first.

 Respondent 10: When I'd lost around 10 pounds, my gymnastic coach
 said I looked great. The other girls on the team started to lose
 more weight then.

These respondents were describing events that occurred in the mid 1990s, when eating disorders were well recognized and widely publicized in the general press. The coaching attitudes described by the respondents in this study should be rare exceptions. In classroom discussions, students report that the coaching attitudes reflected in the respondent narratives are not uncommon in their experience. The most disturbing respondent narrative came from a female runner.

 Respondent 15: A teammate told my parents and track coach I was in
 trouble. I was upset, but relieved in a way. But the coach told my
 parents that she had seen anorexic girls before, and I wasn't skinny
 enough to worry about it. So none of them did anything. I'd lost 30
 pounds at that point, and I'd only been 120 pounds before the
 disorder began. My disorder went on for nearly three more years.

Two female respondents, however, reported the critical role their coaches played in initiating recovery.

 Respondent 5: My 9th-grade P.E. [physical education] teacher and
 coach called a conference with my parents. She told them I needed
 help, and that she wouldn't let me participate in P.E. or
 cross-country until I was in much better condition.

 Respondent 6: My parents explained away my weight loss to other
 family members. They just didn't want to deal with it. It took my
 track coach's refusal to let me participate that season to get my
 parents involved. I give her a lot of credit, and will never forget
 her.

The results of this study were striking and consistent. The key turning point for most respondents was the empathic, nurturing support of a patient parent, boyfriend, or friend. The shortest disorder duration and greatest degree of recovery was reported by respondents whose mothers intervened with a firm but loving response early in the course of their disorder.

 Respondent 1: I came home from school and found my mom reading on
 my bed that was covered with books and videotapes. She said she was
 starting to understand, and that we would work through this thing
 together. We did, and are much closer because of the experience.

 Respondent 2: My mom said, "We'll do anything it takes to help you.
 You should go ahead and quit gymnastics and work on getting well."

The key turning point for two respondents was an unexpected, heartfelt expression of love from their fathers. Both described that their eating disorder symptoms had been a source of anger and confrontation, a battle of wills, with their fathers for over a year.

 Respondent 5: My dad came into my room and started crying. He told
 me he couldn't live if he lost me. It was like, this is it. It's over
 now.

 Respondent 6: I had never seen my father cry before. He told me he
 loved me, and didn't know what to do, how to help me. I realized he
 really cared about me. That was the first day of my recovery.

The realization that they were loved for themselves, not solely their achievements, and the empathic parental expression of a determination to work with the child on overcoming the disorder, were the key recovery initiators for six respondents. Sadly, twelve respondents de scribed that their parents "explained away," overlooked, or seemed to ignore the symptoms of their eating disorder. Eight respondents found that the expression of love and support they needed to begin their recovery came from boyfriends or close friends. These nurturing friends were not only supportive, but active intervention participants.

 Respondent 13: My friend acted more like a mother. She encouraged me
 to talk about feelings, monitored me at our sorority house, and
 accompanied me to the Ladies Room for over a year.

One boyfriend took a somewhat novel approach.

 Respondent 8: At his house, my boyfriend had his mother or sister
 hide in the bathtub and "surprise" me whenever I used their
 bathroom after eating. In public he loiters outside the women's
 restroom door without embarrassment. I guess that's love. He never
 looks at skinny girls, and when I compare myself to them, he always
 tells me how beautiful I am.

Friends and boyfriends in this study appear to function as parental surrogates, providing a safe harbor for recovery. The pattern found in this study was consistent. The shortest disorder durations, with the most complete recoveries, were reported by respondents whose parents provided loving and supportive early interventions, followed by the respondents whose recovery was initiated and sustained by a significant other. The longest disorder duration occurred among the respondents whose recovery was self-initiated.

In a study of 1,171 patients, Kordy et al. (2002) reported that the mean duration of the illness for patients seeking clinical treatment at 43 German clinics was 8.2 years for bulimic and 5.7 years for anorexic patients. The four respondents in the present study (2 restricting anorexica, 2 binge-eating/purging anorexics) who had received inpatient treatment in the present study reported multiple hospitalizations, extensive and ongoing psychotherapy, and chronic physical outcomes, including osteoporosis, heart abnormalities, gastrointestinal disorders, and diminished memory and ability to concentrate. They reported the longest period from onset to initial recovery turning point, ranging from 4 to 7 years (mean 6.1 years), and considered themselves to be in the process of recovery, not recovered. These respondents reported that "disordered thinking" remains a constant and challenging aspect of their daily lives. Sadly, three of these four inpatient treatment respondents expressed the belief that they will always battle their disorder.

The findings of this exploratory study would suggest that recovery from eating disorders, with minimal clinical treatment, can occur when early symptoms are recognized by an empathic parent or significant other committed to a collaborative, participatory approach to recovery. The need for further research with a population reporting recovery without clinical treatment is critical in advancing the working knowledge of eating disorder prevention and treatment.

Implications

Pressures for achievement can create and reinforce devastating, self-destructive behavior. It is critical for parents to consider Reindl's (2001) proposal that "the opposite of an eating disorder is accepting and respecting oneself as one is, and yet striving to develop one's potential as an increasingly whole, complex person" (p. 290).

The results of this study support Rome et al.'s (2003) conclusions that early detection and treatment helps decrease eating disorder morbidity in the adolescent population. School systems, administrators, athletic directors, coaches, and teachers must make every effort to ensure that their policies, programs, and personnel support a healthy environment for their students. Through primary prevention dialogue with parents, students, health professionals and community members, the prevention and early detection of eating disorders could be better realized. Within the limits of what is possible, every effort must be made to create an environment that counteracts a toxic culture.

In memory of Randy Woods. The author gratefully acknowledges the assistance of Jeanette Wilson, and students, Stefanie Boiling, Erin Hardiek, Erinn Kuebler, and Allison Flores, Eastern Illinois University.

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