Layout 1
Introduction
Yanos, Roe and Lysaker1 proposed a concept termed
‘illness identity’ based on the research findings on the in-
fluence of the experience and diagnosis of mental illness.
Illness identity refers to ‘the set of roles and attitudes that
a person has developed about him or herself in relation to
his or her understanding of mental illness’ (p. 74). Thus,
it is proposed that individuals do not merely experience
symptoms of mental illness but also interpret their expe-
rience of the illness. This concept is applied to cases in
which an individual has decided to characterise his/her
experiences, which might be regarded as psychiatric
symptoms by a mental health professional, as at least
partly caused by mental illness. As such, the concept is
not applied to cases in which an individual has experi-
ences which might be described as symptoms of mental
illness but does not consider himself / herself ill. The con-
cept of ‘illness identity’ was proposed as an alternative to
earlier concepts such as ‘engulfment’.2 Whilst ‘engulf-
ment’ refers to a person’s self-concept and behaviour be-
coming increasingly organised around the psychiatric
patient role, ‘illness identity’ allows for the multiple ways
in which persons might make sense of having mental ill-
ness. Thus, ‘illness identity’ includes, for example, inter-
pretations of having mental illness which do not seem to
fit the patient role, such as ‘empowered’ identities.3,4
In the present study, as in the study by Yanos et al.,1
‘identity’ refers to i) the social categories which an indi-
vidual uses to describe himself/herself and ii) the social
categories which others use to describe the individual.5 It
has been well documented that psychiatric diagnosis and
experiences of mental illness can significantly influence
one’s identity.6 A meta-synthesis of qualitative studies on
the experience of psychosis revealed that whereas people
experienced losses of self-esteem, self-identity and the
sense of having a coherent self at the early stage of psy-
chosis, once recovery was underway, they regained a
sense of having a self and rebuilt identity and self-esteem,
with the ability to regain identity by asserting a unique in-
dividual identity.7
Reviewing the existing empirical literature, Yanos et
al.1 revealed the impact of illness identity on the course
and recovery from severe mental illness; illness identity
can be detrimental to recovery and impacts one’s hope
and self-esteem negatively. However, although a large
body of study has investigated the impact of illness iden-
tity on people with mental health problems, little is known
A qualitative study of illness identity: schizophrenia and depression
Namino Ottewell
School of Social Sciences, Waseda University, Tokyo, Japan
ABSTRACT
Illness identity refers to the interpretation of having mental illness in persons who regard themselves as mentally ill. Illness identity
can impact people diagnosed with mental illness negatively. However, little is known about the background of illness identity. This
study aimed to investigate the process whereby mental health service users accept their diagnosis and develop an illness identity and to
compare the processes between schizophrenia and depression. Twenty persons with schizophrenia and depression were interviewed,
and the data were analysed using grounded theory approach. The major findings were as follows: i) while those with schizophrenia
were shocked by their diagnosis and took time to accept it, this was not true for those with depression; ii) for participants with depression,
it was relatively easy to accept their diagnosis, as they thought that depression was a normal illness; participants with schizophrenia
needed to learn about their illness, know the efficacy of psychiatric medication and reduce their prejudice against mental illness to
accept their diagnosis; and iii) participants’ illness identity encompassed sickness and normality with sickness being related to taking
psychiatric medication and normality being associated with having regular work, acting as other people do or living in the community.
These findings suggest the influence of social attitudes to each illness on illness identity and the complex nature of illness identity.
Correspondence: Namino Ottewell, School of Social Sciences,
Waseda University 1-6-1, Nishiwaseda, Shinjyuku-ku, Tokyo 169-
8050, Japan.
Tel.: +81.3.3208.0545.
E-mail: ottewelln@ml1.net
Key words: Illness identity; Mental illness; Depression; Schizo-
phrenia.
Conflict of interest: the author declares no potential conflict of in-
terest.
Funding: none.
Received for publication: 16 March 2018.
Revision received: 9 August 2018.
Accepted for publication: 9 August 2018.
This work is licensed under a Creative Commons Attribution Non-
Commercial 4.0 License (CC BY-NC 4.0).
©Copyright N. Ottewell, 2018
Licensee PAGEPress, Italy
Qualitative Research in Medicine & Healthcare 2018; 2:84-93
doi:10.4081/qrmh.2018.7420
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Qualitative Research in Medicine & Healthcare 2018; volume 2:84-93
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about the process whereby illness identity develops. It is
important to investigate the process, because by doing
that, it is possible for us to clarify the background of ill-
ness identity. Furthermore, understanding the process will
also provide us with a more comprehensive picture of
mental illness experience and influences of mental illness
and psychiatric diagnosis on one’s identity.
The present study, therefore, aimed to examine the
process whereby people with psychiatric diagnosis de-
velop illness identity. In doing this, the present study also
investigated how they accepted their psychiatric diagno-
sis, since it is necessary for one to accept that they have a
mental illness in order to develop illness identity. Accept-
ance was defined as an individual coming to consider that
their somatic and/or psychological changes have been
caused by mental health problems. While mental illness
includes various categories, this study focussed upon two
specific illnesses, schizophrenia and depression. This is
firstly because these two illnesses are perceived differ-
ently by lay people, with schizophrenia being more stig-
matised.8,9 The second reason is that the studies on the
impact of psychiatric diagnosis and experiences of mental
illness on one’s identity have mainly focussed on people
with psychosis, and the impact on the identity of people
with depression has been relatively unexamined. By com-
paring the process whereby persons diagnosed with schiz-
ophrenia develop their illness identity with that of persons
with depression, this study analyses the affinities and dif-
ferences in the processes whereby they develop their ill-
ness identity between these two illnesses.
Materials and Methods
Participants
The data for this study were derived from 20 inter-
views conducted primarily to explore the experiences with
stigma among people with mental illness. After obtaining
the university’s ethical approval, I recruited participants
from community activity support centres for psychiatric
patients and psychiatric hospitals in Tokyo, Japan.
The inclusion criteria were as follows: i) people diag-
nosed with schizophrenia or depression by health profes-
sionals; ii) people over the age of 20 years.
The following exclusion criteria were applied: i) peo-
ple experiencing acute symptoms of mental illness; ii)
people experiencing dementia, intellectual disability or
substance abuse; iii) people having problems with inter-
actions with an interviewer.
A total of 20 people, including 10 men and 10 women,
participated in this study, twelve of whom had been diag-
nosed with schizophrenia and eight with depression. The
average duration of treatment was 14 years (ranging from
1-40 years). The age and employment status of partici-
pants are presented in Table 1.
Procedure
Interviews were semi-structured and face-to-face, and
each interview lasted between 25 and 50 minutes. While
the majority of the questions were related to stigma
against mental illness, participants were also asked about
their feelings and thoughts concerning their psychiatric
diagnosis. The questions regarding their feelings and
thoughts about diagnosis included the following: i) When
and how were you first diagnosed with mental illness? ii)
How do (or did) you feel about your diagnosis? iii) If you
were not told your diagnosis by your doctor initially, when
and how did you learn about your diagnosis and how did
you feel about it? iv) Do you find it easy or difficult to
mention your diagnosis to others? v) Do you think if your
diagnosis were different (for example, if it were not schiz-
ophrenia but depression), it would be easier to disclose it
to others? and vi) Do you accept your diagnosis? If so,
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Table 1. Age and employment status of participants.
Age 20-25 1
26-34 11
35-44 5
45-54 1
55+ 2
Employment status Job training 5
Sheltered job 1
Special employment positions for people with disabilities 4
Employed (full time) 5
Employed (part time) 1
Looking after home and family 1
Unemployed 3
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how did you accept it? Participants were also asked to talk
about their experiences of receiving and accepting psy-
chiatric diagnosis freely. All participants provided a writ-
ten informed consent form prior to an interview and
agreed to their interviews being recorded.
Data analysis
I analysed interview data by employing the grounded
theory approach.10 I transcribed the recording of each in-
terview verbatim, and divided the transcripts into segments
using natural breaks as cut-off points to code them. Codes
and categories were reviewed as the results of the analysis
were accumulated, following which they were accepted,
modified, discarded or replaced with new ones. I examined
relationships between categories by comparing them with
one interview case, contrasting them across other cases as
well as by reviewing analysis memoranda. Clarifying these
relationships led to the emergence of a core category,
namely ‘living with the self that has changed because of
the mental illness itself and because of the psychiatric di-
agnosis label’. In the process of the analysis, comments and
advice from three other researchers were reflected in order
to increase validity of the analysis.
The interviews were designed primarily to explore
stigma experiences among participants, and as such, this
core category is mainly related to participants’ experi-
ences after they accepted their diagnosis (e.g. how they
concealed their condition). However, for the purpose of
this study, the sections below focus on how they came to
accept their diagnosis and develop an illness identity.
Results
Receiving a psychiatric diagnosis
The participants’ reports indicated two broad patterns
in terms of how they came to be diagnosed as mentally
ill. With regards to the first one, participants noticed re-
current changes in themselves, including insomnia, suici-
dal thoughts and/or hearing voices. They thought that
these changes might be caused by mental health problems
and sought a diagnosis. The second pattern involved other
people (in most cases, participants’ families) noticing
changes in participants and taking them to a doctor. In this
case, even if participants had been aware of the changes,
which had been mostly cognitive changes such as auditory
hallucinations and delusions, before their first visit to hos-
pital, most of them had not thought of these changes as
psychiatric symptoms. In most cases of the second pat-
tern, participants had not been informed of their diagnosis
for several years (ranging from 2-11 years), although their
families were informed of it. Participants were usually un-
aware of their diagnosis while receiving psychiatric treat-
ment. Apart from one, these participants first became
aware of their diagnosis when they saw their patient
record or application forms for benefits. Although they
stated that they had been shocked at the discovery of their
diagnosis, no participants expressed dissatisfaction with
their family for not having told them.
Whilst all eight participants with depression went to
hospital of their own free will, the majority with schizo-
phrenia (66% or 8/12) were taken to hospital by other peo-
ple for the initial consultation. There was a marked
contrast in the reaction to their diagnosis between those
with depression and those with schizophrenia, with the
former generally being convinced and the latter being
puzzled or shocked. Two participants were puzzled be-
cause they knew nothing about schizophrenia, whereas
other participants were shocked because they regarded it
as a serious illness or thought it was related to violence.
One of the participants (Anna) stated, ‘I was shocked
when my doctor told me I had schizophrenia, not depres-
sion, because I thought that schizophrenia was much
worse than depression and incurable’.
All participants, except for three, were reluctant to dis-
close their diagnosis to others. The majority of partici-
pants with schizophrenia felt that it would be easier to
disclose their condition if it were not schizophrenia but
depression, as they thought that depression was well-re-
garded among lay people, whereas schizophrenia was not
understood properly and related to images of madness or
violence. Participants with depression shared this view,
stating that they would never disclose their diagnosis if it
were not depression but schizophrenia. In terms of the di-
agnosis of depression, none of the participants with de-
pression considered that their diagnosis itself mattered.
For all the participants with depression, except for one, it
was the fact that depression was a mental illness which
made them consider whether they should disclose it to
others, because they were aware that people were often
prejudiced against people with mental illness, regardless
of their diagnosis.
Acceptance of diagnosis
At the time of the interviews, all 20 participants be-
lieved that they did indeed have a mental illness. Of the
participants with depression, four stated that they had self-
diagnosed their condition before seeing a doctor. Thus,
receiving a psychiatric diagnosis probably implied a con-
firmation of their changes. Three participants with depres-
sion were not certain of what their diagnosis would be,
although all of them did not appear to have been puzzled
by it. They often heard the word depression in the media,
and more importantly, they agreed with the information
about depression which they saw in the media. Thus, they
had already accepted that there was indeed an illness
called depression even before receiving a formal diagno-
sis. One participant was not initially convinced by her di-
agnosis and thought that she had a borderline personality
disorder because of her self-harming behaviour; however,
she eventually came to think that she had depression. She
(Ruri) stated:
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In the initial period when I began receiving treat-
ment, I wondered if I was experiencing a personality
disorder or depression. My doctor expressed that de-
pressive symptoms could’ve been leading to self-in-
jurious behaviour, but as the self-injuries were so
frequent, I wanted to reduce them; thus, I asked for
medication that would enable me to reduce self-injury.
However, my condition didn’t improve, and so, it was
eventually decided that receiving medication for de-
pression would be better. I began taking SSRI, and it
really seemed to suit me. I became mentally stable,
and my self-injuries also decreased. Therefore, I
thought that since SSRI was effective, it must’ve been
depression.
Her statement indicates that psychiatric medication
played an important role in her acceptance of her diagnosis;
she thought of the changes she was experiencing to be
symptoms of depression, because SSRI, a widely used an-
tidepressant medication, worked for her. Furthermore, in
addition to the effectiveness of psychiatric medication, par-
ticipants’ recognition of depression made it easier for them
to accept their diagnoses. As mentioned above, participants
shared the view that depression did not hold a very negative
image in Japan. Takuya, who had been diagnosed with de-
pression, described how mental illnesses were viewed in
Tokyo, after commenting on the intense stigma against
mental illness in general in the countryside:
In Tokyo, it’s a given – it ’s not rare. There didn’t
seem to be that bad of an image regarding things that
you frequently hear about like depression and panic
disorders. As might be expected this isn’t the case with
schizophrenia: its image is different. But if a person
is suffering from depression or a panic disorder, it’s
my feeling that people would treat you as normal in
Tokyo.
In his statement, Takuya suggests that depression and
panic disorders are normal illnesses, particularly in Tokyo.
He also situates schizophrenia in a different position from
depression and panic disorders. As can be observed, he
began the last sentence with the word but and went on to
describing the normalization of depression and panic dis-
orders; this indicates his belief that schizophrenia is dif-
ferent from depression and panic disorders in a negative
sense, signifying that schizophrenia is not a normal ill-
ness. Although what Takuya mentioned is his understand-
ing of the images of mental illnesses in Tokyo and not all
over Japan, the differences between schizophrenia and
some other well-known mental illnesses, particularly de-
pression, was recognised by most participants; while hav-
ing depression is considered normal, having
schizophrenia is negatively deviant. For some partici-
pants, depression felt normal owing to the large number
of patients with depression, as the number of patients with
mood disorders, including depression, annually has been
over one million since 2005 in Japan.11 This meant to them
that depression was a common illness that anyone could
get. Overall, participants found it easier to accept a diag-
nosis of depression because depression was indeed an ill-
ness but a normal illness according to them. Furthermore,
the statements of participants reflected a discourse con-
cerning the relationship between depression and stress,
which is widely believed in Japan; if an individual is
under enormous stress, he/she will get depressed.12 When
being asked about the possible reasons for their onsets,
participants with depression clearly expressed their views
that they became depressed because they were under great
stress. By doing this, they also implied that they were nor-
mal, because anyone could get depression if they were
under high stress.
In contrast, participants with schizophrenia, regardless
of how they received information on their condition,
needed some time to accept it. All of them rejected their di-
agnosis at first. They did so because, as mentioned in the
previous section, they did not know about schizophrenia,
or if they did, they rejected their diagnosis because they
thought schizophrenia to be a serious illness or related to
violence. For participants who did not know about schizo-
phrenia, it did not make sense to be told by health profes-
sionals and their families that they were ill. They believed
their experiences, such as someone speaking ill of them, to
be true and that it was impossible for them to have a mental
illness which brings delusions and hallucinations. For par-
ticipants who did know about schizophrenia, schizophrenia
was an illness from which other people suffer. They never
thought that they might suffer from it. Their rejection of
their diagnosis also reflected their recognition, as men-
tioned earlier, that schizophrenia was not a normal illness.
All participants with schizophrenia eventually accepted that
they did have schizophrenia, but even after that, most of
them maintained that having schizophrenia was negatively
deviant. For them, whereas it was normal to suffer from de-
pressed mood, anxiety or insomnia when under stress, it
was far from normal to have delusions and hallucinations
under any circumstances.
When accepting their diagnosis, the majority of par-
ticipants with schizophrenia found it helpful to read books
about the subject to convince them that they did indeed
have the illness. These people then noticed that what they
had been experiencing, e.g. hearing voices, matched the
symptoms of schizophrenia, which made them think that
they might actually be suffering from it. Kei described his
experience below:
When I was first hospitalised, other patients in-
formed me about my illness. As I didn’t recognise I
was ill, I went to the door and banged on it, saying,
‘Get me out of here!’ At this point, other patients asked
me various things including what I was thinking
about. Subsequently, I was told, ‘You are schizo-
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phrenic and if you take medication, you’ll be cured’,
and I thought, ‘Oh, really, that was what it was’; this
explanation gradually became a reality for me. They
also lent me books regarding the illness. I read them
and thought, ‘Oh, this is the type of illness it is.’ About
three months after hospitalisation, I understood the
type of illness I was suffering from.
Kei’s statement clearly shows a process whereby he
accepted that he had schizophrenia: although he did not
understand what was wrong with him at first, he gradually
came to believe that he suffered from schizophrenia by
listening to other patients’ explanations, realising that
what they said was right, and studying about the illness
in books. This pattern was seen in some other participants
with schizophrenia as well. Kei’s statement also reveals
that other people played a significant role in his charac-
terising his problems as schizophrenia, and that simulta-
neously, he also regarded his problems as mental illness
himself.
Participants with schizophrenia also accepted their di-
agnosis by realising that psychiatric medication was ef-
fective in dealing with their problems. Knowing that
psychiatric medication reduced their symptoms, they
came to think that what they had been experiencing might
have been caused by mental illness. Participants also had
the opportunity to contact other people with mental afflic-
tions once they had become patients themselves. Although
some participants had been prejudiced against this type
of illness, particularly schizophrenia, which made it dif-
ficult for them to accept their diagnosis, through these ex-
periences with other patients, they realised that not all
psychiatric patients were as violent and unpredictable as
they had thought them to be and found that there were
many patients who were gentle, sensitive and well-func-
tioning. Thus, participants’ perception of people with
mental illness changed, which helped to reduce their hes-
itation or sense of shame in regarding themselves as suf-
fering from one.
Developing an illness identity
The major characteristic in participants’ illness iden-
tity was the coexistence of sickness and normality; whilst
participants thought that they were ill, they also thought
that they were normal. This characteristic was shared be-
tween participants with schizophrenia and those with de-
pression. Normality consisted of their illness identity
because it was one of their interpretations of having men-
tal illness; in their thoughts, having mental illness did not
necessarily mean becoming completely different from
other people or losing a normal life.
In terms of their recognition of being ill, it was notable
that taking psychiatric medication was strongly related to
their illness identity. Participants stated: ‘I can’t live with-
out psychiatric meds, so I’m ill (Kana, depression)’, ‘I
recognise I’m ill by taking medicine (Momo, schizophre-
nia)’ and ‘I’m so ill that I have to rely on medicine. If I
didn’t need medicine, I wouldn’t have the identification
booklet’ [which are given to those with mental illness]
(Misa, depression). Participants were generally positive
about taking psychiatric medication, except one who was
ambivalent about it – positive about improvement in
symptoms but negative about side effects. The main rea-
son why participants were positive about medication was
that they felt that it was helpful in reducing symptoms and
that they were not experiencing any troublesome side ef-
fects. Although some participants stated that they had suf-
fered from severe side effects such as sursumvergence
before, it was no longer the case at the time of interview,
since they were getting new medication which was un-
likely to cause severe side effects; they had changed their
medication with their doctor’s agreement. Consequently,
all participants could pass for normal unless they them-
selves revealed that they had been diagnosed with mental
illness. None of them looked different from other people.
Some participants were reluctant to take medication
at first, because they believed that ‘if you took medication,
you’ve admitted you’re ill’ (Riku, schizophrenia). In their
recognition, taking or needing psychiatric medication
meant being mentally ill. They were not concerned about
the actual effects which psychiatric medication might
bring to them physically and psychologically, but they
were concerned about the connotations which psychiatric
medication carried for them and other people, such as
being considered sick and abnormal. Although this is not
what participants actually experienced, some participants
stated that they knew some other people who took their
psychiatric medication at work, while telling their col-
leagues and bosses that the medication was for physical
illness, or who changed their medication to new ones
which they did not need to take during the day, because
they did not want to do so at work. Participants who hes-
itated to take medication at first shared this concern that
they would be thought of as mentally ill.
However, at the time of interview, all participants were
taking medication as suggested by their doctor. In partic-
ipants’ characterisation of their experiences qua symp-
toms of mental illness, not only the fact of taking
psychiatric medication itself but also the recognition of
the efficacy of psychiatric medication played an important
role. For example, Tatsuya had been diagnosed with
schizophrenia but denied having the illness and did not
take medication suggested by his doctor at first. Tatsuya
did not want to take psychiatric medication because he
thought, ‘I’m not like those with mental illness’. He
thought of psychiatric medication as something which
people with mental illness should take. As seen above, the
connotations which psychiatric medication carried mat-
tered to him. However, he realised later that the medica-
tion worked well in terms of reducing auditory
hallucinations when taken properly. As such, he eventu-
ally felt that, ‘it may be true that I’ve been ill’. In other
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words, Takuya thought that what other people, including
health professionals and his family, had told him was
probably right, and that his problems had been caused by
schizophrenia, which was treatable with psychiatric med-
ication. Conversely, participants also recognised the effi-
cacy of psychiatric medication when they stopped taking
it or reduced their dose, since they experienced a relapse
or deterioration of symptoms. Participants with schizo-
phrenia, in particular, were careful about continuing to
take medication, as they thought that they would have a
relapse otherwise.
Other reasons for their recognition of being ill included
having an identification booklet for those with mental ill-
ness. In Japan, people with mental illness can apply for an
identification booklet if they have difficulties in everyday
life or social life because of their illness, with which they
can receive preferential treatment such as reduction of taxes
and fees for public transport. Participants with the booklet
stated, ‘I have the booklet, so I’m officially mentally ill’
(Kana, depression) or ‘When people don’t understand I’m
mentally ill, I show them the booklet so that they can un-
derstand I’m actually ill’ (Misa, depression).
Their recognition of being ill was also associated with
their viewing themselves as different from other people.
Those with schizophrenia tended to use the terms ‘normal
people’, ‘the normal’ or ‘regular people’ when they meant
people without mental illness, whereas those with depres-
sion were more likely to use the phrases ‘people not hav-
ing mental illness’ or ‘people who have never had mental
illness’. For example, Masa, who was diagnosed with
schizophrenia, stated:
Earlier, I thought it’d be unimaginable for me to
go to work again; however, after going through several
interviews, I could find work that could be done even
though I had this illness. Now, I’m receiving a salary
and also paying taxes. I feel that I may have come
closer to living the life of a normal person; this gives
me immense happiness.
His statement shows that he regards ‘the life of a nor-
mal person’ as having work, receiving salary and paying
taxes. Kae, who was diagnosed with depression, on the
other hand, stated:
It’s hard for me that my husband doesn’t understand
that I’m ill, but at the same time, I think it’ll be impossible
for those who have never had depression to understand
that [how being depressed feels like].
In her statement, Kae clearly expresses her recognition
of her being ill, and yet she also thinks that maybe nothing
can be done about her husband’s lack of understanding of
her illness, as he has never been depressed. In contrast to
Masa, who used the word ‘a normal person’, Kae uses the
word ‘those who have never had depression’.
As their descriptions of people without mental illness
show, participants with schizophrenia seemed to feel more
distant from those without the illness than those with de-
pression. For participants, ‘being different from other peo-
ple’ meant being unable to work as other people do or
having experiences which other people would not have
such as hearing voices or self-harming behaviour.
However, all participants thought that they were also
normal while simultaneously thinking they were ill. As
stated in ‘Acceptance of diagnosis’, participants under-
stood depression as a normal illness. As such, participants
with depression thought that they had an illness but that
it was a normal illness and that they were normal in that
sense. For instance, Kaito (depression) stated, ‘It’s a brain
illness, and it’s not different from other illnesses. In addi-
tion, for participants, a normal life generally meant having
regular work. As such, it was understandable that partic-
ipants with regular work, most of whom were those with
depression, regarded them as normal.
In contrast to participants with depression, participants
with schizophrenia tended to use the words normal people
and regular people to distinguish themselves from those
without mental illness. However, participants with schizo-
phrenia also recognised that they were ill but simultane-
ously normal and they were not different from those
without mental illness. Ken (schizophrenia), for example,
stated that he did not have an image of himself as quite dif-
ferent from other people. At the time of interview, most par-
ticipants with schizophrenia did not have regular work.
Therefore, they did not think of themselves as normal be-
cause they had work, as did many of participants with de-
pression, but they regarded themselves as normal in the
sense that they ‘act as other people do (not act strangely)’
or ‘live in the community and lead a life as other people
do’. With respect to the factor, ‘acting as other people do’,
the invisibility of their symptoms was key. Participants with
schizophrenia, in particular, regarded themselves as normal
based on comparisons with their past selves. While they re-
garded their past selves, who had difficulties leading their
everyday lives because of severe symptoms of mental ill-
ness, as far from normal, they regarded their present selves,
who had recovered to a level that other people could not
tell from the participants’ appearance or behaviour that they
had mental illness, as normal. Participants also compared
themselves with people suffering from severe symptoms of
mental illness. With the same logic as their comparison be-
tween past and present selves, they regarded themselves as
normal compared to people having difficulties in leading
their everyday lives because of severe symptoms of mental
illness. Meanwhile, ‘living in the community and leading
a life as other people do’ meant that participants lived in
normal places where other people lived, not in special
places such as hospitals, and participated in activities during
the day. All the participants lived at home, with their family
or alone. These living environments could be one of the
reasons for their recognition of being normal. Furthermore,
six of participants belonged to the community activity sup-
port centre, which they visited on all weekdays, and they
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were not treated as patients there. At the centre, all the peo-
ple, including the staff, used the word members and not pa-
tients. Members were encouraged to think about what they
want to do at the centre themselves and the staff paid re-
spect to members’ voluntary thoughts and acts. This envi-
ronment could also have contributed to their thought that
they were normal.
As mentioned above, one of the participants’ criteria
of being normal was having regular employment. While
participants without regular employment thought them-
selves as normal based on some other criteria, this did not
mean that they had abandoned hope about obtaining work.
All the participants without regular employment at the
time of interview thought that they would like to apply
for regular employment in future. Some participants in-
tended to apply for a job without disclosing their illness,
while others wished to apply for the special employment
positions for people with disabilities. In Japan, organisa-
tions with 45.5 or more employees (one part-time em-
ployee is counted as 0.5 person) are legally obliged to
employ people with disabilities, including those with
mental illness, as 2.2% of their workforce. Organisations
with this obligation, therefore, recruit people with disabil-
ities. The number of people with mental illnesses who
were newly employed in the special employment posi-
tions has been rapidly increasing (from 14,555 in 2010 to
41,367 in 2016),13 and participants were aware of this. Be-
cause of this situation, participants thought that they
would eventually be able to have a job in the special em-
ployment positions for people with disabilities even if
they could not obtain normal work, which meant work
which people without mental illness do.
Regardless of their diagnosis, participants’ recognition
of being normal shared this characteristic: they are normal
as long as they are on medication, but they are sick given
that they have to take medication to be normal. For par-
ticipants with schizophrenia, in particular, it was almost
obligatory to take medication. However, the obligation
did not come from others but from themselves. They
thought that they had to take medication to stay normal.
In participants’ recognition, they were not entirely differ-
ent from other people except that they had to take med-
ication to be normal. As such, psychiatric medication was
related both to participants’ recognition of being sick and
to their recognition of being normal.
Discussion
This study examined the process whereby persons
with schizophrenia and depression accept their diagnosis
and develop illness identity. With respect to acceptance
of their diagnosis, participants with depression seemed to
have agreed with their diagnosis relatively easily because
they understood that depression was a common and treat-
able illness that people did not have very negative feelings
about. Participants also thought that depression was a nor-
mal illness, which could have led to their acceptance of
their diagnosis and their recognition of being normal. In
contrast, participants with schizophrenia found it difficult
to accept their diagnosis, since they did not have knowl-
edge about the illness or they had negative perceptions of
it. They were also aware that people had distorted views
on the affliction. These findings indicate that social atti-
tudes to mental illness affect an individual’s thoughts
about their condition. In Japan, the old term for schizo-
phrenia ‘Seishin Bunretsu Byô’ (mind-split-disease) was
renamed to ‘Tôgô Shitchô Shô’ (integration disorder) in
2002, as it was not conceptually appropriate and gave a
negative impression.14,15 Although research has shown that
the new term gave a more positive impression than the
old one to the general public,16,17 the study findings sug-
gest that negative connotations continue to be attached to
schizophrenia. In fact, in the present study, both partici-
pants who received their diagnosis before the renaming
and after found it difficult to accept. Although this phe-
nomenon is not unique to Japan,18,19considering that the
Japanese general public were found to be more prejudiced
against schizophrenia than those in other countries,8,20,21
it may be more difficult for Japanese people with schizo-
phrenia to come to terms with their diagnosis.
For most participants with schizophrenia, their families
were the first people who were informed of their diagnoses.
The main reason for this practice could be the psychiatrists’
concern that their patients might be shocked by the diagno-
sis. Indeed, some participants stated that their families had
been told by their doctor not to disclose the information for
this reason. Although many patients have been informed of
their diagnosis of schizophrenia recently,22 the practice of
not disclosing these results to patients appears to be a com-
mon practice in Japan, particularly before the new term was
introduced. According to Nishimura,23 who conducted a sur-
vey on disclosure of psychiatric diagnosis to their patients
amongst psychiatrists in Japan, most of the contacted 1,000
psychiatrists refused to participate in the study stating that
they ‘do not give a diagnosis to patients in our hospital’. Al-
though none of participants complained about the practice,
this raises the issue of ethical and human rights which needs
to be discussed. However, the problem concerning provid-
ing the patient with a diagnosis of schizophrenia is not lim-
ited to Japan; research conducted in other countries showed
that mental health professionals had concerns for the patient
regarding giving a named diagnosis of schizophrenia and
found it problematic, unproductive and harmful,24,25 indicat-
ing that the problem is of universal nature.
Participants thought themselves to be simultaneously
sick and normal. Their recognition of being sick was
strongly related to their taking psychiatric medication,
which meant that they regarded medicine taking as an act
of sick people. Furthermore, participants understood their
illness in a biological manner, given that they believed
that medication could reduce their problems or symptoms.
The studies conducted in other cultures also found that
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psychiatric medication implied more severe illness for
people diagnosed with mental illness and facilitated or re-
inforced conceptualisation of one’s problems in terms of
mental illness.26,27 Tucker28 notes that biological under-
standing of mental illness functions as a way to move
away from negative perceptions against any unspecified
mental abnormality. Whilst this may be true in an aspect,
a large body of studies has revealed that this is not always
the case. In fact, research has shown that people with a
belief of biological aetiology of mental illness showed
more stigmatising attitudes to people with mental illness
than did people with a belief of psychosocial aetiology of
mental illness.29-31 Participants’ biological understanding
of mental illness may reflect the fact that they were re-
ceiving psychiatric treatment. However, it is unknown
whether they chose this type of treatment because they
originally endorsed biological understanding or they have
a biological understanding because they received psychi-
atric treatment. Participants with depression accepted their
diagnosis relatively easily probably because they believed
that their depression had been caused by a psychosocial
factor, namely stress.
Whereas Yanos et al.1 note that illness identity can
lead to detrimental consequences such as lower self-es-
teem and loss of hope, the findings of this study show that
illness identity does not necessarily lead to negative re-
sults. Participants’ illness identity did not lead only to neg-
ative consequences, because their illness identity
encompassed two contradictory-looking elements, nor-
mality and sickness. In this sense, study participants were
different from the clients of the Programme of Assertive
Community Treatment (PACT) programme described in
Estroff’s ethnographic study.32 In the case of PACT
clients, they thought themselves as sick or different from
other people, and people around them also treated them
as sick people. Estroff notes that clients received a direct
and indirect message that they were sick and never got
well daily, and were simultaneously reminded of their de-
fects and differentness through interactions with people
without mental illness. It is possible that participants in
this study also daily received messages such as you are
sick and you are different from others, given that they
were on psychiatric treatment. However, they did not look
different from others, and they interacted with those with-
out mental illness such as colleagues, friends and neigh-
bours in their everyday lives. Participants might have been
reminded of their own deficits and differentness in com-
parison with people without mental illness daily in the in-
teraction with them, but they also confirmed their
normality in the interactions as they behaved normally,
thought normally, and worked normally.
Goffman33 argues about the relationships and interac-
tions between the normal and the stigmatised. People di-
agnosed with mental illness are often stigmatised,34,35 and
in this sense, study participants can be regarded as the
stigmatised. In fact, most of them experienced and per-
ceived stigma because of their diagnoses, although this
article did not deal with this topic in detail. Goffman33 re-
gards stigma as ‘an attribute that is deeply discrediting’
(p. 4), but what is really needed for stigmatisation is not
attributes, but language of relationships; someone can be
stigmatised in social interactions and attributes in them-
selves do not cause stigmatisation. Participants were
aware of the discredited nature of mental illness, particu-
larly schizophrenia, while they were also aware that de-
pression was less discredited and even regarded as a
normal illness. Their awareness partly explains the rejec-
tion of diagnosis of participants with schizophrenia and
acceptance of diagnosis of participants with depression.
Participants ensured that they appeared normal in their
everyday lives in order to avoid being stigmatised, and
they knew that it was important for them to appear nor-
mal. This was one of the reasons why they adhered to
medication. Although it may sound contradictory, partic-
ipants took medication to appear normal and to not be
stigmatised, while being aware the negative connotations
of psychiatric medication and how others could stigmatise
them for taking medication.
Participants’ recognition of ‘being sick’ was both self-
labelled and labelled by others. Thoits36 argues that people
are likely to label themselves as mentally unwell and seek
professional help when they experience non-normative
feelings which are persistent or recurrent and when they
lack social support. Others can help them think that it is not
unusual to have those feelings by confirming that said feel-
ings have understandable origins in objective conditions.
However, she also notes that others can label people expe-
riencing non-normative feelings as mentally unwell. Thoits’
theory seems to be largely applicable to the experience of
participants with depression. On the one hand, they thought
that they were ill because of recurrent changes in them-
selves, including insomnia and suicidal thoughts. On the
other hand, they thought that it was normal for them to have
depression because they were under great stress, although
this was rather influenced by the media than by those
around them. Labelling by others, in contrast, is largely ap-
plicable to the experiences of participants with schizophre-
nia. In Scheff’s theory,37 when an individual’s deviance
becomes a public issue, both this individual and those
around him/her try to deal with the situation using stereo-
types of mental illness, which they have learnt in everyday
life since childhood, as a guide. When other people react
to the deviance of this individual in this way, his/her un-
structured rule-breaking tends to crystallise in conformity
to these stereotypes. In the case of participants with schiz-
ophrenia, most were taken to a hospital by other people for
their initial consultation, as other people thought the par-
ticipants to be mentally ill because of their problems such
as auditory hallucinations and delusions. These participants
were also influenced by other people’s views in accepting
that they were ill. However, their ‘unstructured rule-break-
ing’ did not crystallise, as Scheff argues, but they learned
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to appear normal. This can be partly explained the facts that
they lived in normal environments and most others around
them, including the staff of the community activity support
centre, did not treat them as sick people.
The present study defined acceptance of diagnosis as
the process where an individual comes to consider that their
somatic and/or psychological changes have been caused by
mental health problems, which is similar to the idea of in-
sight. However, research has indicated problems in this
idea. Tucker28 indicates that the idea of insight should be
more diverse, as acceptance of a diagnosis is a complex
process where individuals interpret mental illness and re-
construct the category. Hamilton and Roper38 criticise the
notion of insight, stating that it reduces the dynamic of
opinions to a contest between individual and professional
opinion. Furthermore, insight is problematic not only as a
concept but from the perspective that recognising oneself
as mentally ill can also lead to negative consequences such
as self-stigma and lower satisfaction with life.39 The litera-
ture suggests that it is important to develop an identity as a
person, not as a patient, when thinking about recovery.40
However, the findings of this study suggest that having in-
sight or recognising oneself as mentally ill is not necessarily
detrimental to those diagnosed with mental illness. This is
in accordance with the findings of prior studies which
showed that some individuals had expressed relief at having
been given a diagnosis.19,41 In this study, participants
thought that having mental illness did not necessarily mean
becoming completely different from other people or losing
a normal life, and they regarded themselves as normal,
while simultaneously thinking of themselves as ill. Al-
though it is true that some participants with schizophrenia
were shocked at their diagnosis and took time to accept it,
this was mainly because they were prejudiced against the
illness, thinking that, for example, those with schizophrenia
were violent. It is also true that most participants concealed
their diagnosis from others, not because they wanted to
deny having a mental illness but because they wished to
avoid being stigmatised. These results suggest that negative
connotations of mental illness, namely stigma, rather than
recognising themselves as mentally ill, affected partici-
pants. In fact, while research has shown that having insight
can lead to negative consequences such as low self-esteem
and quality of life,42 there is also evidence that rather than
‘insight’ itself impacts people diagnosed with mental illness
negatively, other factors such as shame proneness and self-
stigma mediate the associations of insight and negative con-
sequences.43-45
Another limitation of this study was that the partici-
pants were recruited from community activity support
centres for psychiatric patients and psychiatric hospitals,
which probably led to the exclusion of persons with men-
tal health diagnoses who rejected their diagnoses or who
did not wish to be involved with the mental health system.
Research has shown that persons with psychiatric diag-
noses who do not regard themselves as mentally ill have
their own interpretations regarding their issues, including
‘having a bad temper not an illness’,46 ‘family problems’
and ‘outbursts’.27 Whilst the findings of the present study
contribute to an understanding of illness identity in people
who have accepted their psychiatric diagnoses, future re-
search will need to investigate perspectives of people with
mental health diagnoses who do not regard themselves as
ill, since interpretation of mental illness varies.
Conclusions
The present study described the process whereby men-
tal health service users accept their diagnosis and develop
an illness identity and compared the processes between
schizophrenia and depression. One of the significant dif-
ference was that while those with schizophrenia were
shocked by their diagnosis and took time to accept it, this
was not true for those with depression. This difference re-
flected social images of schizophrenia as negatively de-
viant illness and depression normal illness. Participants’
illness identity encompassed sickness and normality, with
sickness being strongly related to taking psychiatric med-
ication and normality being connected to having a regular
job, acting as other people do or living in the community.
Taking psychiatric medication, however, was related both
to participants’ recognition of being sick and to their
recognition of being normal, in the sense that they thought
that they were normal as long as they were on medication.
Whilst research on the lives of people diagnosed with
mental illness mainly focuses on their sick side, the find-
ings of the present study clearly reveal that recognition of
being normal simultaneously exists in them. It should be
important for people diagnosed with mental illness to
have this recognition, even if it is partial recognition as in
the case of the study participants, because this recognition
will help them in a variety of ways, including sustaining
self-esteem and keeping or expanding social networks. As
we know little about the recognition of being normal in
people diagnosed with mental illness, future research is
needed to explore this topic further.
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