Short Report

Psychopathology 2014;47:127132 Received: December 12, 2012

Accepted after revision: March 6, 2013
DOI: 10.1159/000350505
Published online: July 5, 2013

Self-Perceived Stigmatization in Female Patients

with Anorexia Nervosa Results from an Explorative
Retrospective Pilot Study of Adolescents
A. Maier a J.-P. Ernst a S. Mller c D. Gross a F.D. Zepf b, d, e
B. Herpertz-Dahlmann b U. Hagenah b
a
Institute of History, Theory and Ethics in Medicine, and b Department of Child and Adolescent Psychiatry,
Psychosomatics and Psychotherapy, University Hospital Aachen, RWTH Aachen University, Aachen, c Department
of Psychiatry and Psychotherapy, Division of Mind and Brain Research, Charit Universittsmedizin Berlin, Berlin,
d
Institute for Neuroscience and Medicine, Jlich Research Centre, Jlich, and e JARA Translational Brain Medicine,
Aachen and Jlich, Germany

Key Words were reported. A remarkable degree of self-stigmatization,

Anorexia nervosa Stigmatization Discrimination
Adolescents
Abstract
Background: The stigma of mental illness has been identi-
fied as an important barrier to treatment and recovery. Previ-
ous research reported the stigmatization of individuals with
eating disorders by both health professionals and the gen-
eral public. The aim of this pilot study was to empirically as-
sess the previous stigmatization and discrimination experi-
ences of young female patients with anorexia nervosa (AN)
using a retrospective explorative approach. Methods: An in-
house questionnaire that was developed to survey experi-
ences of stigmatization was mailed to 75 former adolescent
patients with AN. The mean time of assessment after dis-
charge was 5.6 1.2 years. The patients were asked to re-
spond anonymously. The response rate was approximately
48% (n = 36). Results: Feelings that society held negative
stereotypes of individuals with AN, concrete experiences of
stigmatization and discrimination, and rejection by peers
as indexed by high rates of agreement to stigmatizing state-
ments, was detected. Approximately one third of the par-
ticipants reported delayed initiation of treatment due to fear
of stigmatization and discrimination. Conclusion: Stigmati-
zation plays a decisive role in young patients with AN and
impacts their motivation to seek professional help and en-
gage in treatment. Clinicians should be aware of the stigma-
tization related to eating disorders and its burden for affect-
ed patients. Copyright 2013 S. Karger AG, Basel
Introduction
Anorexia nervosa (AN) is considered to be one of the
severest psychiatric disorders. It is associated with a sig-
nificantly increased morbidity and mortality rate com-
pared to other psychiatric disorders [1] and is the third
A. Maier and J.-P. Ernst contributed equally to this work.

2013 S. Karger AG, Basel Dr. J.-P. Ernst

02544962/13/04720127$38.00/0 Institute of History, Theory and Ethics in Medicine
RWTH Aachen University
E-Mail karger@karger.com
Wendlingweg 2, DE52074 Aachen (Germany)
www.karger.com/psp
E-Mail jernst@ukaachen.de
most common chronic illness in adolescence [1, 2]. Early
treatment is associated with an improved prognosis, par-
ticularly in regard to beneficial outcomes [3]. A recent
community-based follow-up study indicated that 18 years
after the onset of AN, 20% of patients had not received psy-
chiatric treatment or other professional support for eating
disorder symptoms or comorbid psychiatric disorders [4].
In addition to a lack of evidence-based treatment options,
stigmatization is associated with a delayed initiation of
treatment [5]. In general, the term stigmatization refers to
the process of applying certain negative stereotypes to spe-
cific groups of individuals and establishing a demarcation
line between insiders and outsiders [6]. The relevance of
stigmatization in the context of psychiatric disorders was
demonstrated in several studies [7, 8]. Common conse-
quences of stigmatization are disadvantages in finding
partners [9] and jobs [10], problems with employment and
income [11], low self-esteem [12], a reduced quality of life
[13], and a reduced usage of medical care [14]. Most pub-
lished studies on stigmatization focused on patients with
schizophrenia and depression. There is a scarcity of data on
the role of stigmatization in patients with eating disorders.
Preliminary evidence indicated that blame might serve
as an important factor in stigmatization. In line with this,
laypeople may think that people with eating disorders
could pull themselves together if they really want[ed] it
[1518], have only themselves to blame [1519], and
might only wish to get attention [17, 19]. Research
showed that even physicians blame patients with AN for
their eating disorder symptoms and associated behaviors
[20]. Furthermore, the severity of AN is often underesti-
mated by laypeople [21]. Consequently, as shown by re-
search conducted with patients with depressive symp-
toms, stigmatization poses a major obstacle to seeking and
attending therapy and treatment [14, 22, 23]. Thus far,
previous studies primarily addressed aspects of stigmati-
zation in patients with AN from the point of view of unaf-
fected people. This is the first pilot study to target stigma-
tization from the viewpoint of patients with AN and assess
the consequences of stigma using an explorative approach.
This study uses an in-house questionnaire that was devel-
oped to survey adolescent patients experiences with stig-
matization and discrimination on a descriptive level.
Methods
Study Sample
Seventy-five former in- and outpatients of a major child and
adolescent mental health service who had previously been diag-
nosed as suffering from AN (DSM-IV criteria) were invited to par-
128 Psychopathology 2014;47:127132
DOI: 10.1159/000350505
ticipate in the study. Further inclusion criteria were a minimum age
of 12 years and female sex. The period between treatment initiation
and the beginning of the study ranged from 29 to 90 months (mean:
52.5, SD: 14.7). Invitations to participate were delivered to the pa-
tients anonymously. A total of 36 former patients participated in
the study, reflecting a response rate of approximately 48%. The av-
erage age of the analyzed sample at the time of the survey was 19.3
years (SD: 2.0 years, min.: 15 years, max.: 24 years). Concerning
education, 16% of the participants indicated that their educational
level was low or medium (10 years of education) and 58% that it
was high (minimum of 13 years of education), and 26% of the par-
ticipants were studying at university (16% of the participants did
not answer this question). No detailed information on these former
patients current state of health, weight or height was available. The
study protocol was evaluated and approved by the Ethics Commit-
tee of the Faculty of Medicine at the RWTH University Aachen.
Assessment Tool
An in-house preliminary pilot questionnaire entitled Ques-
tionnaire on stigmatization in patients with anorexia nervosa
(QSAN, developed by U.H., J.P.E. and S.M.) was implemented. In
addition to questions on stigmatization, the QSAN comprised
items on the course of the illness. Some of the questions were ex-
tracted from well-established scales and questionnaires such as the
Devaluation-Discrimination Scale [12], the Consumer Experienc-
es of Stigma Questionnaire [24], the Opinions Scale [15] and the
Revised Illness Perception Questionnaire [25]. These questions
were adapted and specifically modified for people with AN. Most
of the questions had a closed format, with only a small number of
open response questions. For most of the closed questions, a
4-point Likert scale was used to determine either the frequency of
the item (never, rarely, often, very often) or the degree to which a
patient agreed with a statement (totally disagree, rather disagree,
rather agree, totally agree). The questionnaire included 100 ques-
tions, some of which are not relevant to the current issue and,
therefore, are not presented in this paper.
Data Analysis
The data were analyzed on a descriptive level. When partici-
pants placed a mark between two response options, the more stig-
matizing value was counted. The relative frequencies (valid per-
cent) were calculated for all questions. Missing data were not im-
plemented in a pairwise manner.
Results
Participants reported receiving considerable criticism
because of their eating disorder symptoms. Such criticism
was mainly formulated by the patients parents (68%),
was less commonly verbalized by their boyfriends, physi-
cians, strangers/in the public, siblings, classmates/col-
leagues and friends, and was not expressed by their teach-
ers and other superiors (fig.1). A substantial group of re-
spondents reported that they were (very) often treated as
less competent, primarily by their parents (33%), but not
by their friends (fig.2).
Maier/Ernst/Mller/Gross/Zepf/
Herpertz-Dahlmann/Hagenah
 Who has criticized you for your eating disorder?

Parents 12.9 19.4 41.9 25.8

Boyfriend 50.0 25.0 5.0 20.0

Siblings 34.6 50.0 7.7 7.7

Physicians 59.3 18.5 14.8 7.4

Friends 48.1 44.4 3.73.7

Strangers/in public 70.4 11.1 14.8 3.7

Classmates/colleagues 69.2 23.1 7.7

Teachers/superiors 92.3 7.7

0% 20% 40% 60% 80% 100%

Never Rarely Frequently Very frequently

Fig. 1. The descriptive response data obtained from former patients with AN to questions on criticism related to
eating disorder symptoms as assessed with the QSAN.

Are you treated as being less capable once people learn about your eating disorder?

By parents 36.7 30.0 16.7 16.7

By physicians 42.3 34.6 15.4 7.7

By teachers/superiors 61.5 23.1 11.5 3.8

By strangers/in public 72.0 4.0 24.0

By classmates/colleagues 66.7 25.0 4.2 4.2

By boyfriend 70.0 15.0 15.0

By siblings 68.0 24.0 4.04.0

By friends 65.4 34.6

0% 20% 40% 60% 80% 100%

Never Rarely Frequently Very frequently

Fig. 2. The descriptive response data obtained from former patients with AN to questions on reactions of the
environment to eating disorder symptoms as assessed with the QSAN.

Stigmatization and Anorexia Nervosa Psychopathology 2014;47:127132 129

DOI: 10.1159/000350505
 Participants reported that they received both the
most criticism and the most support from their parents.
Teachers or superiors were often described as ignoring
the patients problems. Admiration and jealousy were
also observed, but only from friends and classmates/col-
leagues. Respondents also reported withdrawal, particu-
larly by classmates/colleagues, siblings, and friends.
More than 50% of participants confirmed that criticism
because of their eating disorder symptoms was a great
burden. More than 25% of respondents agreed with the
statement that others thought negatively about them be-
cause they had received psychiatric or psychotherapeu-
tic treatment. At least 50% of the participants felt stig-
matized by the public opinion, resulting in disadvan-
tages in everyday life. Online supplementary tables S1
and S2 (for all online suppl. material, see www.karger.
com/doi/10.1159/000350505) present the descriptive
data on such aspects of stigmatization.
Most of the patients reported feelings of alienation
and self-blame. Stereotypes toward AN were affirmed
to a considerable degree (online suppl. table S3). More
than one quarter of respondents (29%) indicated that
patients with AN were to blame for their condition
(question 37) and could pull themselves together if
they wished to do so (30%, question 38). Nearly half of
them (49%) held the opinion that girls and young wom-
en with AN were attempting to receive attention with
their symptoms. Furthermore, participants agreed with
negative stereotypes about the character and behavior
of girls and young women with AN. A significant por-
tion of participants stated that their mothers (27%) and
(to a lesser degree) fathers (21%) were (very) often held
responsible or criticized for the adolescents eating dis-
order. Many former patients believed that their parents
felt responsible for the disorder (mothers: 55%; fathers:
39%). Most participants assumed that their mothers
(77%) and (to a lesser degree) fathers (58%) experi-
enced stress due to disease-related accusations and crit-
icism.
Approximately one third of participants (31%) re-
ported that they waited a considerable time before visit-
ing a physician due to fear of being criticized and
blamed. A similar proportion of participants waited to
undergo treatment due to fear of being excluded or de-
graded (34%; see online suppl. tables S4S6). The aver-
age period between the onset of the disease and thefirst
contact with a physician was 8.2 months (SD: 6.1
months). The average delay between the onset of dis-
ease and the start of treatment was 9.3 months (SD: 6.0
months).
130 Psychopathology 2014;47:127132
DOI: 10.1159/000350505
Discussion
The present pilot study surveyed the stigmatization
and discrimination experiences of former patients with
AN. Questions about stigmatization and discrimination
in general were more often affirmed than those about
concrete personal experiences of prejudicial factors. Most
participants described positive experiences with friends
who knew about the disorder, but only half agreed with
the statement that most people would accept someone
with AN as a close friend. Such inconsistencies might in-
dicate that stigmatization is not limited to concrete expe-
riences, but is also associated with a more general percep-
tion of stigma related to mental illness. Here, a retrospec-
tive approach was implemented, which may be an
advantage for this particular research question because
acutely ill patients with AN often deny their illness and
thus might not be willing to be confronted with its conse-
quences, including stigmatization. The results of this
study suggest a substantial amount of perceived stigmati-
zation and discrimination toward patients with AN, de-
spite the relatively young age of the subjects. Addition-
ally, a remarkable degree of self-stigmatization, as in-
dexed by high rates of agreement with stigmatizing
statements, was detected. These rates were similar to or
even higher than rates in the general population [15, 16]
or among students [19]. The high rates of patients feel-
ings of responsibility for their disorder and concealing
their symptoms suggest that they applied at least some of
these stereotypes to themselves.
Approximately one third of the participants stated that
they had experienced delayed treatment due to fear of
stigmatization or discrimination. These results provide
preliminary evidence that the stigmatization of patients
with AN can lead to delayed treatment initiation. Similar
effects were found in studies on stigmatization toward
patients with depression [22, 23]. The average delay be-
tween disease onset and the first consultation with a doc-
tor was shorter than that in previous studies [2628], pos-
sibly because participants in the present study were mi-
nors at that time and their parents could persuade them
to visit a doctor. Nevertheless, one third of the patients
had waited to consult a doctor or initiate treatment due
to fear of stigmatization. This finding supports the hy-
pothesis that stigmatization is an underlying reason for
the fact that more than 20% of patients with AN remain
untreated until 5 years after the onset of the disorder [28].
Several important limitations must be considered. Due
to the anonymity of the study, the results could not be
linked with previous patient data. However, because some
Maier/Ernst/Mller/Gross/Zepf/
Herpertz-Dahlmann/Hagenah
of the questions were quite private, anonymity may have
been an advantage and perhaps the most convenient way
to elicit accurate answers. No information was obtained
about current psychiatric diagnosis, e.g. presence of an
eating disorder. Recall bias may have led to an over- or
underestimation of the amount of perceived stigmatiza-
tion. Previous research demonstrated that depressive pa-
tients, for instance, recall negative events better than pos-
itive events [29]. Therefore, patients psychopathology at
the time of the study may have biased the present results.
Additional limitations of this study are related to the
QSAN, which has not yet been validated. However, the
QSAN was conceptualized and developed for this pilot
study to gain preliminary knowledge of the stigmatization
experiences of young women with AN on a descriptive
level. Nevertheless, some questions may not differentiate
between the consequences of stigmatization and those of
an eating disorder. The number of participants in this
analysis is low compared to that in recent studies on stig-
matization among people with other mental disorders,
such as affective disorders and schizophrenia [30, 31].
However, the prevalence rate of AN is relatively low in
comparison to affective disorders, and this pilot study was
restricted to only one department. Young people with AN
might be particularly reluctant to accept the diagnosis of
AN and consider its consequences. In addition, dropout
rates are very high in treatment and follow-up studies of
patients with AN [32, 33], which was also found in the cur-
rent investigation. Regarding the rather extensive QSAN
questionnaire, the response rate of nearly 50% (which is
only slightly lower than that in comparable studies [21,
27]) seems somewhat acceptable. The reasons for nonre-
sponse and the direction of possible distortions can only
be assumed. Subjects with fewer problems with stigmati-
zation may have been less motivated to complete the ques-
tionnaire, resulting in the overestimation of stigmatiza-
tion. Not all participants answered all questions. In par-
ticular, some questions on discrimination experiences had
response rates below 50%, which could be ascribed to the
young age of the participants but also somewhat reduces
the validity of these findings. Because only girls and young
women with AN were surveyed, the results cannot be gen-
eralized to other groups of patients with eating disorders
(older patients, male patients, untreated people). Adults
with a more chronic course of the disorder may report a
greater amount of experienced discrimination. Follow-up
studies with these groups could offer a broader view of
stigmatization toward patients with eating disorders.
In summary, there is preliminary evidence for stigma-
tization and discrimination toward young patients with
Stigmatization and Anorexia Nervosa
AN. An important implication for clinical practice is to
raise professionals awareness of the importance of this
issue for affected patients and their families. A better un-
derstanding of the relationship between stigmatization
and the delay or avoidance of therapeutic actions could
help to reduce treatment barriers. Interventions should
be developed to provide assistance to both patients and
their families. The results of this survey suggest the need
for further research in this particular area.
Acknowledgements
The study received funding by the Medical Faculty of the
RWTH Aachen University (START research program). We thank
the participants of this survey. We also thank B. Delheid, M.-L.
Cox-Hammersen, A. Dongauser, C. Parisi, and J. Senderek for
their assistance with this project.
Disclosure Statement
In the past 5 years, F.D.Z. was the recipient of an unrestricted
award donated by the American Psychiatric Association, the
American Psychiatric Institute for Research and Education, and
AstraZeneca (Young Minds in Psychiatry Award). He also re-
ceived research support from the German Federal Ministry for
Economics and Technology, the German Society for Social Pedi-
atrics and Adolescent Medicine, the Paul and Ursula Klein Foun-
dation, the Dr. August Scheidel Foundation, and the IZKF of
RWTH Aachen University and a travel stipend from the GlaxoS-
mithKline Foundation. He was the recipient of an unrestricted ed-
ucational grant, travel support and speaker honoraria from Shire
Pharmaceuticals, Germany. In addition, he received support from
the Raine Foundation for Medical Research (Raine Visiting Pro-
fessorship) and editorial fees from Co Action Publishing, Sweden.
B.H.D. received research support from Vifor Pharma and was a
member of an advisory board for atomoxetine by Lilly. The other
authors have no conflicts to disclose or report concerning this area
of research.
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