The role of gendered constructions of eating disorders in delayed help-seeking in men: A qualitative interview study

Abstract

To understand how young men recognise eating disorder (ED) symptoms and decide to seek help, and to examine their experiences of initial contacts with primary care.
A qualitative interview study.
Men from across the UK were interviewed as part of a study of 39 young men's and women's experiences of having an ED.
10 men aged 16-25 years with various EDs including anorexia nervosa and bulimia nervosa.
The widespread perception of EDs as uniquely or predominantly a female problem led to an initial failure by young men to recognise their behaviours as symptoms of an ED. Many presented late in their illness trajectory when ED behaviours and symptoms were entrenched, and some felt that opportunities to recognise their illness had been missed because of others' lack of awareness of EDs in men. In addition, the men discussed the lack of gender-appropriate information and resources for men with EDs as an additional impediment to making sense of their experiences, and some felt that health and other professionals had been slow to recognise their symptoms because they were men.
Although increasingly common in young men, widespread cultural constructions of EDs as a 'women's illness' mean that men may fail to recognise ED symptoms until disordered behaviours become entrenched and less tractable to intervention. Men also report that such perceptions can affect the reactions of their families and friends, as well as health and educational professionals. Primary care professionals are well placed to challenge inappropriate perceptions of EDs.

Full text

The role of gendered constructions
of eating disorders in delayed
help-seeking in men: a qualitative
interview study
Ulla Räisänen,
1
Kate Hunt
1,2
To cite: Räisänen U, Hunt K.
The role of gendered
constructions of eating
disorders in delayed
help-seeking in men: a
qualitative interview study.
BMJ Open 2014;4:e004342.
doi:10.1136/bmjopen-2013-
004342
▸
Prepublication history for
this paper is available online.
To view these files please
visit the journal online
(http://dx.doi.org/10.1136/
bmjopen-2013-004342).
Received 26 October 2013
Revised 5 February 2014
Accepted 13 February 2014
1
HERG Health Experiences
Research Group, Nuffield
Department of Primary Care
Health Sciences, University of
Oxford, Oxford, UK
2
MRC/CSO Social and Public
Health Sciences Unit,
University of Glasgow,
Glasgow, UK
Correspondence to
Ulla Räisänen;
Ulla.Raisanen@phc.ox.ac.uk
ABSTRACT
Objectives:
To understand how young men recognise
eating disorder (ED) symptoms and decide to seek
help, and to examine their experiences of initial
contacts with primary care.
Design: A qualitative interview study.
Setting: Men from across the UK were interviewed as
part of a study of 39 young men’s and women’s
experiences of having an ED.
Participants: 10 men aged 16–25 years with various
EDs including anorexia nervosa and bulimia nervosa.
Results: The widespread perception of EDs as
uniquely or predominantly a female problem led to an
initial failure by young men to recognise their
behaviours as symptoms of an ED. Many presented
late in their illness trajectory when ED behaviours and
symptoms were entrenched, and some felt that
opportunities to recognise their illness had been
missed because of others’ lack of awareness of EDs in
men. In addition, the men discussed the lack of
gender-appropriate information and resources for men
with EDs as an additional impediment to making sense
of their experiences, and some felt that health and
other professionals had been slow to recognise their
symptoms because they were men.
Conclusions: Although increasingly common in
young men, widespread cultural constructions of EDs
as a ‘women’s illness’ mean that men may fail to
recognise ED symptoms until disordered behaviours
become entrenched and less tractable to intervention.
Men also report that such perceptions can affect the
reactions of their families and friends, as well as health
and educational professionals. Primary care
professionals are well placed to challenge inappropriate
perceptions of EDs.
INTRODUCTION
Eating disorders (EDs) are an increasingly
common form of mental ill health and have
been highlighted as a clinical priority area for
Youth Mental Health in 2013–2016 by the
UK’s Royal College of General Practitione rs.
Early diagnosis and intervention can prevent
the development of long-term, potentially
life-threatening, psychiatric morbidity with
estimated costs to the National Health Service
(NHS) of £50 million in inpatient care, and
an additional £5–20 million for outpatient
and primary care.
1
Anorexia nervosa (AN)
has the highest mortality rate of all psychiatric
conditions in adolescence.
2
Diagnostic guide-
lines
3
recognise four types of EDs: AN,
bulimia nervosa (BN), binge eating disorder
and eating disorder not otherwise specified
(EDNOS).
4
Environmental and genetic
factors impact the risk of developing an ED.
Up to 70% of cases of AN and BN have been
estimated to be triggered by an adverse life
event, such as abu se.
256
Existing psychiatric
conditions
7
or substance abuse in the
family,
89
certain personality traits (such as
perfectionism and low self-esteem),
8–10
and
complex sociocultural factors around body
image are also risk factors.
211
Treatment can
include psychological and pharmacological
interventions as well as dietary advice, but
early diagnosis and intervention is important
for long-term prognosis.
12
Strengths and limitations of this study
▪ The study utilised well-developed and rigorous
qualitative data collection and analysis methods.
▪ We succeeded in recruiting men with eating dis-
orders, a hard-to-reach and under-researched
group, who were prepared to talk openly about
their experiences.
▪ Because these young men's experiences were
collected as part of a study that recruited and
interviewed both young men and young women
using the same methodology, we are able to
identify what is specific to young men’s accounts
of having an eating disorder.
▪ The study is limited to young people and does
not contribute to understanding the experiences
of older people with eating disorders.
Räisänen U, Hunt K. BMJ Open 2014;4:e004342. doi:10.1136/bmjopen-2013-004342 1
Open Access Research

EDs are commonly characterised as conditions affect-
ing teenage girls
13 14
but there are many similarities in
symptoms,
15–17
treatment response
18–20
and prognosis in
men and women with EDs.
17
Although evidence on
gender differences in prognosis is limited, one recent
cohort study found treatment outcomes in all EDs were
better for men than women, when remission was mea-
sured by weight restoration and self-reported relapsing.
21
Some studies suggest that men with EDs are more likely
to engage in obsessive exercise
15 17 19 22
and have more
psychiatric morbidity as a result of an ED.
15 19
Homosexuality has also been cited in some studies as a
risk factor for men.
15 17 23
Estimates of the prevalence of EDs in men and
women vary widely, depending in part on whether full
or partial diagnostic criteria are applied and whether
studies have been community or hospital based.
However, all studies suggest lower rates of EDs among
men. It has been estimated that 1 in 250 women, and 1
in 2000 men in the UK have AN, and the prevalence of
BN and other types of EDs is considerably higher
2
; with
BN and EDNOS thought to be more common in men
than AN.
24 25
A commonly cited estimate, whose proven-
ance is unclear, is that 10% of clinical ED cases occur in
men,
226
but some data suggest that this prevalence
could be as high as 25%.
27
Despite this uncertainty
about prevalence, the incidence of EDs in men is
rising,
23
although it is thought that statistics still under-
represent the prevalence of EDs among men.
13 23 28 29
This is, in part, because a lack of public awareness of
EDs in men may delay or prevent men from recognising
early signs of EDs and seeking help.
14 30
Lack of under-
standing and training among health professionals may
also contribute to delays in diagnos ing and treating EDs
among men,
13 21
in part because men with EDs might
accoun t for symptoms regarding weight and dieting
behaviours differently from women with EDs.
13
General
practitioners (GPs) and other primary healthcare profes-
sionals play a pivotal role in recognising early symptoms
of EDs and early referral for specialist care.
31
Yet, to date, very little is known about how men recognise
ED s ymptoms and decide to seek professional help.
Qualita t iv e studies of men’sexperiencesofEDsaresparse
and have focused mainly on EDs and exercise, body image,
dieting practices and sexual orientation.
32–36
One recent
study explored men’s experiences of recovery
20
and
another examined men’s experiences of specialist ED ser-
vices.
22
This paper presents a qualitativ e study of the experi-
ences of 10 young men with EDs, whose accounts wer e
collected within the conte xt of a larger study of y oung
people’s experiences of EDs. We aim to understand how
young men recognise ED symptoms and decide to seek
help, and their experiences of initial contacts with primary
care. We focus on the follo wing resear ch questions:
▸ How do men make sense of their early (and later)
signs and symptoms of disordered eating?
▸ How do they realise something might be wrong and
require intervention?
▸ Are there perceived barriers to accessing primary
care (or other) services for men with EDs?
▸ What are men’s experiences of health professionals’
responses to their initial presentations of ED signs
and symptoms?
METHODS
Sample and data collection
The findings reported are part of a larger qualitative
interview study with 39 young people (29 women and
10 men) with EDs in the UK, conducted to inform
an online patient information resource (http://www.
healthtalkonline.org/young-peoples-experien ces/eating-
disorders). In this paper we focus on the experiences of
the 10 men who took part (table 1).
All interviews took place in the UK, either at the inter-
viewee’s home or a meeting room. Using maximum vari-
ation sampling,
37
participants were recruited using a
variety of channels, including patient organisations,
social media, healthcare practitioners and snowballing
to elicit a wide range of experiences across the illness
spectrum. Inclusion criteria for the participants were:
(1) aged 16–25, (2) living in the UK, (3) experience of
an ED (most participants had been diagnosed but also a
couple of as yet undiagnosed cases were included) and
Table 1 Characteristics of the male study participants
Pseudonym Age at interview Age at diagnosis Type of ED Employment status Ethnicity Sexuality
Participant 1 19 14 AN Student White British Heterosexual
Participant 2 18 15 AN and EDNOS Student White British Heterosexual
Participant 3 25 16 BN Employed White British Homosexual
Participant 4 17 N/A BN* Student White British Homosexual
Participant 5 19 18 BN and AN Student White British Heterosexual
Participant 6 17 14 AN Student White British Heterosexual
Participant 7 22 19 BN Employed White British Homosexual
Participant 8 20 N/A AN and EDNOS* Student Latino Heterosexual
Participant 9 21 20 AN Unemployed Mixed Heterosexual
Participant 10 25 22 AN Unemployed White British Heterosexual
*Undiagnosed, but self-identified ED type(s) listed in the table.
AN, anorexia nervosa; BN, bulimia nervosa; ED, eating disorder; EDNOS, eating disorder not otherwise specified.
2 Räisänen U, Hunt K. BMJ Open 2014;4:e004342. doi:10.1136/bmjopen-2013-004342
Open Access

(4) not currently receiving inpatient treatment. In-depth
interviews (conducted by UR) followed a bipartite struc-
ture. Initially, interviewees were invited to talk through
their experiences of having an ED in as much detail as
they wished. The researcher interrupted this free narra-
tive as little as possible. In the second part of the inter-
view, semistructured questions explored emerging and
anticipated themes further. Questions around emerging
themes probed topics initiated by the interviewee in the
early narrative and anticipated themes examined topics
from existing literature. Interviews lasted between
50 min and 2 h, were audio/video recorded with
consent and transcribed verbatim. Transcripts were
checked against recordings for accuracy and sent to the
participants for editing and approval. For research pur-
poses all transcripts were anonymised and pseudonyms
are used.
Method of analysis
Earlier analysis (by UR) of all the 39 interviews informed
the development of the online patient information
resource. At this stage, the 39 transcripts were closely
and repeatedly read (by UR). A coding structure was
developed and the data coded to anticipated and emer-
gent themes using the Nvivo V.9 software. Based on
these themes, 27 topic summaries were written and pub-
lished on the http://www.healthtalkonline.org website.
This paper is based on a more detailed analysis by
both authors of men’s experience of the process from
symptom recognition to consultation and (potential)
diagnosis. A qualitative interpretative approach was
taken.
38 39
Combin ing the methods of inductive close
reading and constant comparison, subthemes in relation
to the process of symptom recognition and help-seeking
were examined in the accounts of the 10 men. Each
coded data extract was read line by line to identify sub-
themes. Four subthemes were identified and analysed in
more detail: (1) accounting for early signs and symp-
toms; (2) recognising the problem; (3) routes to help-
seeking and (4) initial contact with healthcare services
and information. These subthemes were summarised
schematically and each occurrence of every subtheme
was noted and compared with data from subsequent
data extracts, using the ‘One Sheet Of Paper’ method to
explore patterns and ‘deviant cases’,
40
the results of
which are discussed below.
RESULTS
Accounting for early signs and symptoms
All of the men took some time to recognise their experi-
ences or behaviours as potential signs and symptoms of
an ED. Those who were subsequently diagnos ed with AN
described how they started to skip meals, sell their
school lunches, restrict calorie intake and eventually go
for days without food. Those with BN described starting
to comfort eat or pur ge after an unusually large meal.
These behaviours usually developed over months,
eventually becoming habitual. The men described devel-
oping daily routines around eating and weight manage-
ment, such as obsessive calorie counting, exercise and
self-weighing. Their problems ofte n also manifested in
other ways, such as self-harming or increasing isolation.
Men accounted for their initial inability to attribute
their feelings and behaviours to possible signs and symp-
toms of an ED through gendered understandings of
EDs. Participant 1 ‘didn’t think for one moment [he]
could be ill with an ED’ and participant 2 said the possi-
bility of an ED ‘had not entered my head’. Participant 3
made sense of his developing routine of bingeing and
purging as a personal coping mecha nism rather than an
indication of underlying pathology. He had never heard
of BN and thought bingeing and purging was something
he had ‘made up’:
I thought I made it up myself … you know, something
that only I did, you know, I never thought in a million
years this was something that lots of people did, and
deliberately did to cause damage to themselves. You
know, it wouldn’t have crossed my mind. Participant 3
Participant 4 thought of EDs as affecting ‘fragile teenage
girls [who are] very emotional’. He identified himself as
‘one of the lads’ in the rugby team and not someone who
could have a problem with eating. Participant 2 had always
thought EDs were ‘something girls got’. Participant 1
framed his lack of awareness of EDs as congruent with
society’s understanding of EDs in men:
I didn’t know men could get eating disorders then ... ‘cos
that would be like five years ago and there wasn’t really
much said about men with eating disorders then ... I
didn’t know the symptoms, didn’t know anything, it was
just, to me it was just happening. I didn’t really know
what was going on. Participant 1
Participant 1 did not at first interpret his disordered
eating behaviours as symptoms of an illness, or as any-
thing recognisable and treatable; rather he saw his symp-
toms as mundane aspects of his life, something that ‘was
just happening’. Indeed, all the men described having
no or very little awareness of EDs in men; hence, the
possibility that their symptoms could be caused by an
ED, rather than reflecting idiosyncratic behaviours, was
not readily considered as an explanation by men.
Men described a simila r inability in friends, family and
teachers to recognise their ED. Participant 5 was investi-
gated for gastric problems for nearly a year during
which time no-one, including parents and clinicians,
suggested psychological reasons for his vomiting and
weight loss. Participant 6 thought that people in school
‘knew’ he had a problem but it ‘was not something that
was ever discussed’ :
There was never any intervention by anyone [er] at
school. I mean I think people knew something was
wrong. I think since talking to some of my friends …
Räisänen U, Hunt K. BMJ Open 2014;4:e004342. doi:10.1136/bmjopen-2013-004342 3
Open Access

they knew I was depressed. They didn’t know that I had
an eating disorder because I don’t think any of us knew
anything about eating disorders really. It wasn’t some-
thing that was ever been discussed. Participant 6
Participant 2 described family tensions when his
parents suggested that he was just being ‘silly’ about his
eating issues.
[They] picked up on it every now and then, like my Dad
would get angry if I hadn’t had my breakfast. But it was
never associated with any kind of eating disorder, ever, it
was just, ‘Stop being silly’. Participant 2
Thus, a lack of awareness of EDs in men meant that
unusual behaviours could be misinterpreted as personal
choices. Men presented themselves as lacking the kinds
of responses from their immediate surroundings which
might have aided earlier recognition and help-seeking.
Recognising the problem
Symptoms and behaviours commonly continued for
months or years before men began to recognise their
behaviours as a problem; for many, they had become an
entrenched routine. Some men described the realisation
that something could be wrong as a gradual process,
others as a sudden event. For some, once their problems
could no longer be contained as a private ‘daily thing’
and impeded their social life or well-being, they began
to recognise things were not right. Participant 7 ‘knew’
for a long time his habitual bingeing and purging was
causing problems but had no name, nor understanding,
to make sense of it. Participant 8 said his ‘personality
changed’ and he became more ‘introverted’ and ‘iso-
lated’, and participant 3 described how obsessions
around eating started to ‘hold [him] back’ from ‘every-
thing [he] wanted to do’. Participants 7 and 8 described
a gradual realisation that things were ‘not normal’.
For others, initial awareness of their ED was precipi-
tated by a crisis point that led to a hospital admission or
emergency referral. These crises were often linked to
marked deterioration in physical health which for many
functioned as a more tangible measure of their well-
being. Participant 9 described how he became ‘gaunt’,
his ‘spine was protruding’ and he was growing lanugo
hair. During an emergency GP home visit, participant 9
was told he required immediate hospital admission,
otherwise he could be sectioned under the Mental
Health Act:
He [GP] was like, ‘Either you come with me within the
next twenty four hours, or I’m going to take you against
your will.’ And it hit me at that point that you know, from
Monday to that Tuesday when I was admitted to hospital
it was a case of you know you’re working, you’re earning
a living, you, you know you’re enjoying life, you know,
well what, what I thought was life. But then from that
Tuesday on you know, you, it’s, a complete flip side to
everything. Participant 9
The trigger to recognise their ED could be precipi-
tated by others. Participant 10 had been restricting his
food intake and losing weight for a long time before his
girlfriend ‘broke down’ and confronted him about his
behaviour, forcing him to re-evaluate the gravity and
impact of his behaviour and recognise ‘it was something
I had to challenge’.
Routes to help-seeking
In addition to the delay in help-seeking attributed to a
lack of self-recognition, young men discussed fears of not
being taken seriously by healthcare providers or not
wanting to be a ‘burden’ on services. Sometimes these
fears were represented as imagined, sometimes as borne
out of past experiences. Before his emergency GP refer-
ral, participant 9 had seen a GP twice with AN symptoms.
He says ‘when they did see me they didn’t do anything’.
He goes on to explain that the GPs had wanted to weigh
him, which he refused to do in a manner typical of
people with AN, but nothing then followed.
As men often recognised their problem late in their
illness trajectory, when disordered behaviours were
embedded, they could be hesitant to seek help because
they had become reluctant to relinquish behaviours
which they felt had a purpose and function in their
lives, something they couldn’t ‘live without ’.
It [ED] created a significant barrier for me for everything
that I wanted to do or wanted to achieve. Absolutely I
knew that it was creating problems at the time. It was just
very difficult because you know at the same time you know
I can’t live without it ‘cos I wouldn’t be able to cope, so
that it was very much a conflict. Participant 3
Over time, men commonly became secretive about
their behaviours, fearing judgement, forced interven-
tions or hurting others’ feelings. This secrecy, typical of
ED sufferers, could also contribute to reluctance to
consult, even once people realised their behaviour was
not normal. Men also described uncertainty about how
and where to seek help once they became concerned
about their eating:
I didn’t really know what, where to go or what to do to be
honest. [Um] We’ve all heard of the like female anorexia
and all of that. And everyone, I think I’d heard of anor-
exia [um] that isn’t what I was going through as such. And
I didn’t really know what it was or where to go…
I did start googling it and I came across [um] eventually
on Facebook the ‘Men have eating disorders too’, as well,
and there was a couple of other websites that I looked at.
[Um] But there’s still in my opinion there’s still no real
information of what you do or where you go. Participant 7
Men also referred to generalised beliefs about gender-
appropriate expressions of emotion and help-seeking
when explaining their reluctance, as men, to seek help:
4 Räisänen U, Hunt K. BMJ Open 2014;4:e004342. doi:10.1136/bmjopen-2013-004342
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You’ve still got this again stigma attached to it [anorexia
nervosa] that it’s a woman’s illness. But it’s not. And it
really really annoys me because it’s not a woman’s illness,
and it affects men. And I don’t know, I can’t obviously say
oh [um] it’s harder for men, but there’s different experi-
ences for men because, you know, ‘No I don’t get ill, I’m
a man’. You know, ‘I don’t get ill, don’t need treatment, I
don’t have emotions.’ Blah, blah, blah. Things like that.
They, which could make it harder for a man to open up
about it. Participant 5
Initial contact with healthcare services and information
Eight of the men had been formally diagnosed with an
ED. The other two identified with prolonged ED beha-
viours over years but neither had yet chosen to seek
diagnosis. The route to diagnosis could be complex and
lengthy, even when men presented late in their illness
and were in need of specialist psychiatric services. Men
could face a lengthy waiting list, during which time their
symptoms escalated further. Even when men had made
the decision to seek help, commonly someone else, typ-
ically their mother, took them to the first appointment.
Usually the first contact with formal services was with
their GP, although participant 3 preferred to see a
locum GP because ‘obviously [I] didn’t have a relation-
ship with that doctor, so that made it a bit easier to talk
about stuff and I think I was so desperate anyway I just
wanted to tell somebody’ and partici pant 4 chose to see
the school counsellor.
Once in the healthcare system, men recounted mixed
experiences of interacting with health professionals. The
initial appointment could dictate how willing men were
to stay in touch with services. Some described positive
experiences of their initial consultation. Participant 7’s
GP quickly realised that he was suffering from BN, gave
him information about the illness, offered a referral and
wanted to monitor him but participant 7 ‘was not happy
it going any further’:
I did make contact with my doctor … I just said that what
I had done and what had happened… he talked through
the whole process [er] with me and explained that, the
very serious side effects to doing that to myself. [Um]
Obviously encouraging me you know for it not to con-
tinue doing what I can. [Er] He was happy to refer me
[um] to someone, but you know that was my choice.
[Um] I remember at the time not wanting anything to
go as far as that. And so I declined that. Participant 7
Participant 1 described his first GP contact as ‘very
helpful’, acknowledging his GP’s willingness to offer
support, but ultimately frustrating because:
Her [GP] struggle was that they haven’t got the services
to give to you. They want to but they just haven’t got
them. Participant 1
However, several men described having to go to the GP
repeatedly before they felt they were being taken seriously
or referred, and in a few instances an ED had been missed
or misdiagnosed. Participant 2 was initially told he was
‘going through a teenage fad’ until his mother went to see
the GP on her own; this precipitated a Child and
Adolescent Mental Health Service (CAMHS) referral.
When participant 3 first consulted and detailed his long-
standing bingeing and purging, a locum GP actively
rejected a diagnosis of BN, told participant 3 he was
depressed and prescribed antidepressants, a clinical judge-
ment which participant 3 attributed to his male gender:
At eighteen I went to the doctor, [um] I didn’t know the
doctor ‘cos I was obviously new to the area, [um] and I
spoke to her quite confidently about my, what I was
going through, because by then I was very aware and the
doctor said to me, [um], ‘You haven’t got bulimia, you’re
just depressed , … I’m probably quite confident in
saying that that was probably because you know I was
male, you know I didn’t live up to the stereotype of being
young and female, [um] and because my, it had sort of
had nothing to do with body image or weight or anything
like that. I think that might have confused the doctor a
little bit you know. Participant 3
Instances of misdiagnoses in specialist care were also
reported. Participant 5 was told by a gastroenterologist
after prolonged vomiting, severe weight loss and lengthy
physical investigations that his problems were not phys-
ical. Rather than referring him for psychological treat-
ment he was, in his words, told to ‘man up’ and ‘not be
weak but be strong and deal with the problem’.
Participant 5 describes his reaction:
I didn’t say anything. I was dumbfounded, like I couldn’t
believe a physician would say something like that,
because I just thought, you know, if there’s nothing phys-
ically wrong but something’s happening surely that
means there’s something psychological. And if it’s to the
extent where I’ve lost three stone at this point, you know,
shouldn’t I be getting referred. … basically I walked
outside and punched a wall and broke my knuckle
because I was so angry. That he’d sat there and called me
weak and blah blah blah…
Right now it makes me so angry ‘cos there was another
two weeks after that where my life went, well it didn’tgo
downhill but it just dropped off the edge. [Er] I wasn’t
talking to anyone, I was just angry all the time, exercising
more, cut myself off, and then the suicidal thoughts
started coming in. And I hurt myself quite a, in quite a
few different ways, and I eventually tried to kill myself.
Whereas quite possibly if he’d referred me to even a psy-
chiatric nurse I’m pretty certain they could have gone
like that [clicked fingers], and this is what’s wrong.
Participant 5
Only after an admission to accidents and emergency
department following a suicide attempt were participant
5’s problems recognised and he was immediately referred
to an ED clinic for intensive outpatient treatment.
Men’s accounts of the readiness and capability of GPs to
provide relevant and appropriate information about EDs
Räisänen U, Hunt K. BMJ Open 2014;4:e004342. doi:10.1136/bmjopen-2013-004342 5
Open Access

varied. Participant 7 was given information and advice, but
still felt that ‘Idon’tthinkthere’sanyrealinformationout
there particular for men or any even awareness that it
exists.’ Participant 6 received no information until he was
admitted under CAMHS, describing it as ‘sod’slaw’ as he
‘needed it earlier’. Information that was made available
was often viewed to be gender-blind or gender-
inappropriate. Participant 1 thought the information was
directed at women and described how the lack of male-
specific information could provide a false sense of security
for male patients. He wanted specific information on the
impact of EDs on men:
like you hear like the side effects of having an eating dis-
order on like women. Like they can become infertile and
stuff like that, but I’ve never seen any for men. So I like
went and was like, ‘Look, well what are they for men?
‘Cos like that I could like have a side effect and I
wouldn’t know.
I think I read somewhere that men can become infertile
by it, and I’m like, ‘Yeah but no one tells you that’. They
need to like tell you ‘this could happen, that could
happen’. Like you can get, I know you can get like osteo-
porosis which I’ve only seen like written about women,
which is obvious it could happen in men as well. So it
could lead like some people to think, ‘ Oh there’s no side
effects for men.’ When there is and it’s just not, you just
can’t, I think, I had to like scroll through the whole of the
Internet trying to find bits of information. Participant 1
Only participant 5 mentioned being given male-
specific information. He described the information as ‘a
scare sheet’ which focused on the physical side-effects
and symptoms of AN, and highlighted the possibility of
impotence or lack of sex drive:
The only information I got was [er] a scare sheet basic-
ally. It was this was going to happen if you keep going.
Basically the big one that they circled was, ‘Oh you won’t
be able to be sexually active’ for men. And that was the
biggest thing. I got about five or six different sheets from
them, and basically the main fact was, ‘Oh yes, your
organs won’t work, you know. You’ll lose nails, hair will
thin. You cannot have sex’, big massive writing basically.
Participant 5
Men expressed a strong desire for balanced, gender-
tailored information. They felt that gender-blind infor-
mation reflected wider societal constructions of EDs as
predominantly or only affecting women.
DISCUSSION
Men with EDs are underdiagnosed, undertreated and
under-researched.
13 23 28 29
In particular, there is a lack
of qualitative research on men’s experiences of EDs and
a continuing perception of EDs as a ‘female’
illness.
13 17 22
Our findings suggest that men may experi-
ence particular problems in recognising that they may
have an ED as a result of the continuing cultural
construction of EDs as uniquely or predominantly a
female problem. The culturally prevalent view that EDs
largely affect teenage girls meant that many of these
young men only recognised their behaviours and experi-
ences as possible symptoms of an ED after a protracted
delay, mitigating possibilities of early intervention and
improved prognosis. Models of help-seeking recognise
that, when bodily or social functioning is disrupted,
people evaluate their experiences in relation to ‘illness
representations’ or ‘stocks of knowledge’ that help them
make sense of their symptoms and decide on appropri-
ate actions.
41–43
Thus, inappropriate understandings that
EDs only affect young women can mean that men delay
seeking medical advice, even when they recognise a sig-
nificant deviation from the ‘healthy normal’. Wyke
et al
44
suggest that symptoms, responses and actions are
simultaneously interpreted and evaluated in the light of
this accumulated knowledge and through interactions
with others. Thus, cultural expectations of health are an
important influence on people’s own attributions of
symptoms and actions, and others’ reactions. These
young men’s accounts suggest their own lack of knowl-
edge was compounded by a similar lack of recognition
in their social networks. Hence, many first presented
late in their illness trajectory when their ED had
become well established and less tractable to treatment.
This reticence could be further consolidated by broader
cultural assumptions about culturally appropriate beha-
viours, which render young men particularly reluctant to
discuss symptoms of mental or emotional ill-health.
45–49
Reflecting on these findings on men in the light of
the broader interview study with men and women with
EDs, particular traits specific to the men’s experience
seem apparent. Men and women recounted an inability
in themselves and others to recognise their behaviours
as symptoms of EDs but dieting and losing weight were
conceptualised as more ‘normal’, unremarkable and
‘socially acceptable’ behaviours in young women.
Women failed to recognise their behaviours as an ED by
normalising early changes in eating and mood and dis-
carding an ED as a ‘too severe’ diagnosis. Women did
not reject an ED diagnosis as a wholly inappropriate
diagnosis for them unlike men, who did not come to
consider the possibility of having an ED because of the
inappropriateness of an ED as a socially available explan-
ation for them as men. Men and women recounted a
reluctance to seek help which stemmed from their
ambivalence towards recovery
50
and both had experi-
enced a prolonged diagnostic process. However, it was
only men who recounted stories of explicit dismissal of
their symptoms due to their gender and also reported
additional challenges in lacking access to relevant and
gender-appropriate information about EDs.
22
The study has a number of strengths and limitations.
It utilised well-developed and rigorous qualitative data
collection and analysis methods.
40
Although men with
EDs are a hard-to-reach group, we succeeded in recruit-
ing men prepared to talk openly about their
6 Räisänen U, Hunt K. BMJ Open 2014;4:e004342. doi:10.1136/bmjopen-2013-004342
Open Access

experiences. The open narrative structure at the outset
of the interview allowed men to spontaneously express
their views about EDs as inappropriately characterised as
a female-specific disease. However, since the remit of the
wider study was to explore the experiences of young
people with EDs; our research does not contribute to
understanding the experiences of older men with EDs.
This is an area that requires further research, especially
in order to examine men’s developing understandings
of EDs across a longer illness trajectory.
The later an ED is diagnosed, the smaller the possibil-
ity of recovery and effective therapeutic interventions,
leading to increased risk of serious sequelae including
mortality.
12
Other studies note that barriers to early diag-
nosis include difficulty or reluctance of men to recog-
nise their ED
21 51
and a lack of confidence about how
best to seek help. This is compounded by widespread
assumptions that EDs are largely, or exclusively, the pre-
serve of women,
13 28 52
particularly teenage girls.
Furthermore, gender differences in primary care con-
sultation rates are most evident in late adolescence and
early–mid adulthood
53
; hence, GPs may have fewer
opportunistic encounters in which to identify symptoms
in young men.
The construction of EDs as a ‘woman’s illness’ has
also been embedded in clinical practice. International
Classification of Diseases (ICD) 10 and DSM IV (up to
2013) included amenorrhoea as a diagnostic criterion of
AN
13 28
and much patient information on EDs fails to
feature men or discusses issues for women, such as the
impact of food starvation on female fertility. This
gender-bias might also be reinforced by current
National Institute of Health and Care Excellence
(NICE) clinical guidelines for the treatment and man-
agement of EDs which make no specific reference to
EDs among men.
54
In order to improve prognosis for men wit h EDs, early
detection is imperative. Primary care clinicians have a key
role in recognising early symptoms. U ntil information
resources are made more appropriate for men with EDs,
health service providers need to be particularly sensitive
to men’s needs in relation to an illness so strongly asso-
ciated with women. Raising awareness of EDs more widely
in society is also crucial to help men (and women) to rec-
ognise and seek help before their symptoms and beha-
viours become intractable. It is important to decouple
the experience and (self-)management of EDs from fem-
inised cultural imagery, resources and clinical practice if
we wish to prevent men from (dis)missing signs and
symptoms themselves, and prevent health and other pro-
fessionals (eg, teachers) from overlooking signs and
symptoms in boys and young men that they may readily
recognise as indicative of EDs in young women.
Acknowledgements The authors would like to thank all the study participants
for sharing their experiences for the study and Comic Relief for funding the
original data collection. They also thank Sara Ryan, Sue Ziebland, Louise
Locock and Helen Salisbury for comments on an earlier draft of the
manuscript.
Contributors UR designed the study, collected the interview data, coded the
data into NVivo software. UR and KH analysed the data and wrote the
manuscript. UR and KH decided to submit the study to the BMJ Open. UR
and KH revised the manuscript in the light of the reviewers’ comments. UR
and KH will act as guarantors for the work.
Funding This work was supported by Comic Relief grant number
GR001-01521-MGYK.
Competing interests KH is funded by Medical Research Council
(MC_UU_12017/3). UR received financial support for the study from which
this manuscript arose via a grant from the DIPEx charity. KH was employed
by UK MRC until 31 May 2013 and was seconded 0.2 FTE to Oxford
University during 2013.
Ethics approval The study ‘Narratives of health and illness for http://www.
healthtalkonline.org (formerly DIPEx) and http://www.youthhealthtalk.org’
was granted ethics approval by Berkshire Research Ethics Committee
(09/H0505/66).
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement Participants were invited to review their interview
transcript and mark any sections they did not want used, before transferring
copyright to the University of Oxford for use in research, teaching,
publications and broadcasting. These carefully anonymised transcripts form
part of a University of Oxford archive which is available to other bona fide
research teams for secondary analysis. All researchers had full access to all of
the data in the study and take responsibility for the integrity of the data and
the accuracy of the data analysis.
Open Access This is an Open Access article distributed in accordance with
the Creative Commons Attribution Non Commercial (CC BY-NC 3.0) license,
which permits others to distribute, remix, adapt, build upon this work non-
commercially, and license their derivative works on different terms, provided
the original work is properly cited and the use is non-commercial. See: http://
creativecommons.org/licenses/by-nc/3.0/
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