By Walter Vandereycken, MD, PhD, Catholic University of Leuven, Belgium
Reprinted from Eating Disorders Review
November/December 2006 Volume 17, Number 6
©2006 Gürze Books
In his classic 1873 description of a patient with anorexia nervosa (AN), Charles Lasègue was struck by how readily the patient accepted the symptoms. He noticed that, in contrast to other patients with extreme weight loss and lack of appetite, “hysterical anorexics have an inexhaustible optimism, against which supplications and menaces alike are of no avail. ‘I do not suffer and must then be well,’ is the monotonous formula,” he wrote.1
“Deniers” often maintain a sense of
arrogance and superiority about their
This is still true today for many AN patients. We simply call it denial, but this term is far from simple. Clearly, the concept of denial of illness has been interpreted by clinicians and operationalized by research in so many diverse ways that it not only lost its original psychodynamic meaning as a defense mechanism but also became a heterogeneous and confusing notion. Also, research on denial has been hampered by a lack of agreement as to whether it is unconscious or conscious, a trait versus a state, an indication of psychological disturbance, or a functional coping mechanism.
Pryor, Johnson, Wiederman, and Boswell have defined denial in these patients as (a) meeting the DSM-IV criteria for AN and simultaneously (b) scoring within the normal range of the Eating Disorders Inventory (EDI) symptom scales.2 On instruments assessing personality features, deniers scored higher on scales indicating sociability (histrionic) and confidence (narcissistic) and lower on scales referring to social disinterest (schizoid) and discomfort (avoidant) as well as pessimism (passive-aggressive). In these authors’ experience, “deniers” often maintain a sense of arrogance and superiority about their anorexic symptoms. They seem to view themselves as superior to other people who are “weak” and “give in” to bodily needs and desires.2 Indirectly, research on locus of control also points in the same direction. Adolescent AN patients with more internal locus of control scores showed more rapid weight gain during treatment, whereas those scoring in a more external direction showed greater denial of illness, fear of weight change, rigidity of self-imposed controls, and body image distortion.3
The “inexhaustible optimism” Lasègue noted in his anorexic patients became a basic differential diagnostic criterion for AN. Even physicians who were not too familiar with AN could recognize the patient’s peculiar attitude as a pathognomonic sign—denial of thinness, denial of hunger, and denial of fatigue became a classic diagnostic triad. Denial of illness—scored as “persistent claims to well-being and health”—also was one of four variables, along with amenorrhea, pulse rate and lanugo, which were significant for differentiating those with AN.4
The patient’s attitude toward her own condition became a central topic in the work of Hilde Bruch.5 In her view, the primary or “true” anorexic could be differentiated from secondary forms of the illness on the basis of the central features of the former group: the patient actively pursues thinness and denies being too thin. In contrast, patients who lose weight due to organic conditions or psychiatric disorders will complain about the weight loss or are indifferent to it, but they do not take pride in it. In the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), denial of the seriousness of the current low body weight is one of the three symptoms lumped together in the diagnostic criterion C of AN.6
Neither the measurement of insights in psychosis nor the assessment of denial of serious physical distress has added helpful information to the research in AN. Since denial among these patients is often considered “typical” if not pathognomonic of the illness, judgment about it is usually based on impressions gathered by a healthcare professional dealing with the patients concerned. Some clinicians, for example, have rated patients on “pressure of suffering” (e.g., does the patient accept help because he or she is aware of suffering?) and the understanding and feeling of being ill.
But, as Hilde Bruch said: “It is exceedingly difficult to get objective statements about how anorexics feel.”7 This factor will undermine the reliability of any self-report study and is a serious but often overlooked trap in research. For example, many studies document the use of the Eating Attitudes Test (EAT) to screen eating disturbances in the first part of a two-part diagnostic screening in a variety of cultures. The results of this self-report instrument may be seriously affected by denial and social desirability. In one study, for example, upon admission to a specialized inpatient unit, 13 of 40 anorexia nervosa patients scored below the cutoff score on the EAT. These patients (deniers) significantly differed from those scoring within the pathological range of the EAT (admitters) on the Amsterdam’s Biographic Questionnaire and on the Minnesota Multiphasic Inventory (MMPI).8
Gauging the Patient’s Motivation
One way of assessing denial is to use the concept of precontemplation within the stages of change model. The Stages of Change Algorithm provides a way to determine the stage the individual is in. One version adapted for eating disorders was used with 51 AN patients attending a clinic (mean age: 27 years); 23.5% were found to be in the precontemplation stage.9 Some useful instruments related to gauging motivation have been adapted to assessing patients with eating disorders:
The Readiness and Motivation Interview. This semistructured interview is designed to rate the person’s attitude in four domains: restriction, cognitive, binge eating, and compensatory strategies. The individual is in the precontemplative stage when she “either does not see the symptom as a problem or does not wish to change.” In one study of eating-disordered women, higher precontemplation scores correlated with less likelihood of accepting the offered residential treatment and with greater chances of dropping out during further treatment.10
The Anorexia Nervosa Stages of Change Questionnaire. This self-report instrument rates 20 items (weight, shape, eating behavior, for example) with scores ranging from 1 (precontemplation) to 5 (maintenance). Some of the questions relating to precontemplation include: “As far as I am concerned, I do not need to gain weight” and “My fear of becoming fat is not excessive.” Among 44 inpatients with AN, 9.1% were classified in the precontemplation stage.11
The Motivational Stage of Change for Adolescents Recovering from an Eating Disorder. This brief, simple scale is rated by the individual or a parent or clinician.12 One item is used to define precontemplation: “Other people think I have an eating disorder, but I don’t.” When tested among 34 girls with an eating disorder (15 AN outpatients with a mean age of 16 years), 29.4% were found to be in the precontemplation stage, which also correlated with body image distortion.
Another instrument, the Goldberg Anorectic Attitudes Scale, contains a factor “denial of illness,” which includes four items (for example, “Yes, I did lose some weight but not enough for everybody to get as worried as they did”). In a follow-up study of 105 AN patients, less denial correlated significantly with weight gain.13
Reluctance to Accept Treatment
All too often the idea of denial of illness is automatically linked with refusal to be treated or reluctance to change. It is estimated that only about a third of all AN patients seek treatment. Why do so many patients avoid seeking help or avoid it entirely? The severity of illness seems to be one answer. The results of a study of a semi-structured telephone interview with 78 consecutive patients referred to an eating disorders clinic showed that patients with more severe eating problems tended to avoid treatment.14 When less apparent and less severe symptoms are present, and with the patient’s ability to deny or conceal the illness, the likelihood of detection and referral is low.
In the difficult-to-treat AN patient, one finds a passionate refusal to change, in conjunction with a profound sense of illness. Thus, the link between denial of illness and resistance to treatment seems logical. The patient may say, “I’m not sick; I don’t need help.” In Ryan and Deci’s theory of self-determination, the concept of amotivation is introduced to convey the idea that some clients feel discouraged and helpless about their efforts to change.15 Amotivation, which involves the lack of clear intentions for action, arises in people when they feel incompetent to achieve an outcome, or experience a lack of a connection between their behavior and the outcome, or do not value the behavior or outcome. Denial and amotivation are two very different notions and the refusal or postponement of seeking help may be attributed to lack of recognition of problems.
Among the barriers between patients and seeking treatment are the patient’s fear of disclosure to others and fear of being labeled as having a disorder. The fact that an individual recognizes a problem does not automatically imply the need or willingness to change nor does this lead to seeking help. Denial does not automatically mean lack of compliance; which is a person’s informed decision not to adhere to a therapeutic recommendation.
Another factor to consider is that some healthcare professionals, as well as the general public, may themselves fail to recognize the seriousness of the eating disorder or believe that these patients are willful and not really ill. This myth is reinforced by the denial that comes from the fact that the socioeconomic group at greatest risk for eating disorders parallels that from which the care providers are drawn. Also, our current cultural bias toward thinness is so strong that it adds to the denial that is characteristic of this illness.
Seeking and/or accepting treatment depends on the person’s expectation of gains and losses involved. When asked to describe their anorexia nervosa as either a “friend” or an “enemy,” patients have to reveal the cost-benefit ratio of their eating disorder. Commonly expressed benefits of the illness include feeling looked after or protected, gaining a sense of control, being attractive, avoiding uncomfortable emotions, and feeling special. Perceived costs include constant thoughts about food, feeling taken over, and negative impacts on personal relationships.
AN is highly valued by the sufferer and internal reinforcers appear to play a more powerful role than social reinforcers (such as attention and praise due to weight loss) in the maintenance of the disorder.16
As Eckert and Labeck have said, “Denial may serve a purpose: it may be the glue that holds a shattered self-esteem system together. Hence, high levels of support must be available if the patient is to begin to acknowledge his or her illness.”17 But communicating with someone who has an eating disorder but denies it is not easy. Family and friends surrounding the patient can help by showing support and concern (otherwise they will seem uncaring), expressing empathy and understanding (if not the usual response will be: “You don’t understand”), and finally telling the truth (otherwise the denial will persist). This confrontation within a context of support and understanding may be crucial in the process of recognizing the problem. While very ill people with AN may refuse the truth or rage and bluster, you have said your truth in the most acceptable way. The positive effect may come later.18
With regard to other means for overcoming or bypassing denial in patients with AN, we refer readers to the very useful contributions by Vitousek and colleagues.19,20 In my view, the bottom line of the lesson for the clinicians involved can be summarized as follows: It is first and foremost a matter of positive attitude.
This contribution has been based upon: Vandereycken W. Denial of illness in anorexia nervosa. Eur Eat Disord Rev 2006; 14:341.
- Lasègue EC. On hysterical anorexia. Medical Times and Gazette 1873; 2: 265.
- Pryor TL, Johnson T, Wiederman MW, et al. The clinical significance of symptom denial among women with anorexia nervosa: Another disposable myth? Eating Disorders: The Journal of Treatment and Prevention 1995; 3:293.
- Strober M. Locus of control, psychopathology, and weight gain in juvenile anorexia nervosa. J Abnorm Child Psychology 1982; 10:97.
- Wright, WS, Manwell MK, Merrett JD. Anorexia nervosa: A discriminant function analysis. Brit J Psychiatry 1969; 115: 827.
- Bruch H. Eating disorders: Obesity, anorexia nervosa, and the person within. New York: Basic Books, 1973.
- American Psychiatric Association. Diagnostic and statistical manual of mental disorders (4th ed.) (DSM-IV). Washington, D.C.: APA, 1994.
- Bruch H. The golden cage. The enigma of anorexia nervosa. Cambridge (MA): Harvard University Press, 1978.
- Vandereycken W, Vanderlinden J. Denial of illness and the use of self-reporting measures in anorexia nervosa patients. Int J Eat Disord 1983; 2:101.
- Blake W, Turnbull S, Treasure J. Stages and processes of change in eating disorders: Implications for therapy. Clin Psychol & Psychother 1997; 4:186.
- Geller J, Drab-Hudson DL, Whisenhunt BL, et al. Readiness to change dietary restriction predicts outcomes in the eating disorders. Eating Disorders: The Journal of Treatment and Prevention 2004; 12:209.
- Rieger E, Touyz SW, Beumont, PJ. The anorexia nervosa stages of change questionnaire (ANSOCQ): Information regarding its psychometric properties. Int J Eat Disord 2002; 32:24.
- Gusella J, Butler G, Nichols L, et al. A brief questionnaire to assess readiness to change in adolescents with eating disorders: Its applications to group therapy. Eur Eat Disord Rev 2003; 11:58.
- Steinhausen HC. Attitudinal dimensions in adolescent anorexic patients: An analysis of the Goldberg Anorectic Attitudes Scale. J Psychiat Res 1986; 20:83.
- Burket RC, Hodgin JD. Factors predicting reluctance to seek treatment in patients with eating disorders. Southern Med J 1993; 86:529.
- Vansteenkiste M, Soenens B, Vandereycken W. Motivation to change in eating disorder patients: A conceptual clarification on the basis of self-determination theory. Int J Eat Disord 2005; 37:207.
- Serpell L, Treasure J, Teasdale J, et al. Anorexia nervosa: Friend or foe? A qualitative analysis of the themes expressed in letters written by anorexia nervosa patients. Int J Eat Disord 1999; 25:177.
- Eckert E, Labeck L. Integrated treatment program for anorexia nervosa. In J E Mitchell (ed), Anorexia nervosa & bulimia: Diagnosis and treatment. Minneapolis (MN): University of Minnesota Press, 1985.
- Bock LP. Secrets and denial: The costs of not getting help. In R Lemberg (ed), Controlling eating disorders with facts, advice, and resources. Phoenix (AZ): Oryx Press, 1992.
- Vitousek K, Daly J, Heiser C. Reconstructing the internal world of the eating disordered individual: Overcoming denial and distortion in self-report. Int J Eat Disord 1991; 10:647.
- Vitousek K, Watson S, Wilson GT. Enhancing motivation for change in treatment-resistant eating disorders. Clin Psychol Rev 1998; 18:391.