FACULTY OF ARTS
DEPARTMENT OF CULTURAL SCIENCES
GENDER STUDIES UNIT
“THE GREATER DYSPHORIA I’VE HAD, THE GREATER
DYSMORPHIA – THEY WORK TOGETHER”
An interview study on trans and nonbinary
experiences of seeking and participating in
Swedish eating disorder treatment
Hannah Alvå
Thesis: 30 hec
Program and/or course: Master’s Programme in Gendering Practices
Level: Second cycle
Semester/year: ST/2023
Supervisor: Jeanette Sundhall
Examiner: Signe Bremer Gagnesjö
Report nr: xx (not to be filled in by the student/students)
Abstract
The accessibility of eating disorder treatment for trans and nonbinary individuals has for long
been an overlooked approach within research as well as in practice both internationally and in
Sweden. By analysing four interviews with care seekers who identify as trans and/or
nonbinary, the purpose of this study is therefore to map out the norms and discourses that
shape the accessibility and applicability of Swedish eating disorder treatment. Through a
mixed method of thematic and Foucauldian discourse analysis, the material has been
structured around common themes that make visible power relations and discursive practices
both within and outside treatment. The results show that the societal as well as clinical
discourses of eating disorders are attached with cisnormativity as well as norms of gender and
body shape. This limits other embodiments of the illness and thereby also the possibility of
being recognised both within and outside the treatment. The accessibility and applicability of
eating disorder treatment for trans and nonbinary care seekers is found to be limited by
normative understandings of who gets affected as well as standardised methods of treatment.
Key words: eating disorders, trans, nonbinary, cisnormativity, healthcare
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Acknowledgements
First and foremost, I want to begin with thanking the interview participants of this study that
so generously have shared their experiences. This thesis is for you, and would not have been
possible without your contributions.
Secondly, I want to give a thank you to my supervisor Jeanette Sundhall. Your support and
consistent encouragement has made an incredible difference in moments of doubt. Thank you
for being there throughout this process as a guidance. Thanks also to Erika Alm for giving
inputs and inspiration, it helped me a lot in finding what paths to take. I also want to thank all
the teachers at the program who have throughout these years been sources of inspiration.
Thank you for creating a space at the university that is both comfortable and revolutionary.
Lastly, I also want to show my great appreciation of my friends and fellow students who have
throughout this spring held me company in the many hours spent in those library chairs. Your
company and support has been incredibly valuable.
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Table of contents
1. Introduction_____________________________________________________________ 5
1.1 Research aims______________________________________________________ 6
1.2 Research questions____________________________________________________ 6
2. Background_____________________________________________________________ 7
2.1 A brief terminology of trans health________________________________________ 7
2.2 National guidelines and recommendations__________________________________ 9
3. Literature review________________________________________________________ 11
3.1 Perspectives on trans health in Sweden____________________________________12
3.2 Covering the field of international research________________________________ 14
3.2.1 Weight stigma as a foundational barrier_______________________________14
3.2.2 The adaptability of eating disorder treatment___________________________15
3.2.3 Body shape and gender dysphoria___________________________________ 16
3.2.4 A call for multidisciplinarity_______________________________________ 17
4. Theoretical framework___________________________________________________ 18
4.1 The power of the medical gaze__________________________________________ 18
4.1.1 Biopower and the clinical gaze_____________________________________ 19
4.1.2 Biomedicalization________________________________________________20
4.2 The minority stress model______________________________________________ 21
4.3 Emotions and their movements__________________________________________ 23
4.3.1 Affective economies and stickiness__________________________________ 23
4.3.2 The politics of fear and shame______________________________________ 24
5. Method________________________________________________________________ 27
5.1 Finding participants and designing the interview questions____________________ 27
5.1.1 Semi-structured interviews_________________________________________28
5.2 A mixed method of analysis____________________________________________ 29
5.2.1 Thematic analysis________________________________________________29
5.2.2 Foucauldian discourse analysis_____________________________________ 30
5.3 Limitations_________________________________________________________32
6. Methodology and ethical considerations_____________________________________33
6.1 Positionality and emotions____________________________________________ 33
6.2 A cisnormative history of research_______________________________________ 34
7. Analysis of the material__________________________________________________ 36
7.1 Barriers in the care seeking process______________________________________ 36
7.1.1 Waiting and shame_______________________________________________ 37
7.1.2 Normative embodiments__________________________________________ 39
7.2 Ideas of the body_____________________________________________________ 41
7.2.1 The risky body__________________________________________________ 42
7.2.2 The body identified______________________________________________ 43
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7.2.3 The body becoming______________________________________________ 45
7.3 The stress and the eating disorder________________________________________ 47
7.3.1 Stressors and coping strategies______________________________________47
7.3.2 Identification as a responsibility____________________________________ 49
7.3.3 Previous experiences and expectations_______________________________ 52
7.4 A space for comorbidity_______________________________________________ 53
7.4.1 The hierarchisation of treatments____________________________________54
7.4.2 “Eating disorders trump everything else”_____________________________ 55
7.4.3 Practical standardisation___________________________________________57
7.4.4 An emotional and inclusive focus___________________________________ 59
8. Conclusions____________________________________________________________ 63
8.1 Further remarks_____________________________________________________65
Reference List____________________________________________________________ 66
Appendix 1: Interview guide (Swedish)_______________________________________ 72
Appendix 2: Form of consent (Swedish)_______________________________________ 75
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1. Introduction
The negative health effects of eating disorders have both in research and in media been
repeatedly and extensively stressed. The great impact an eating disorder has on the wellbeing
of the affected individual, as well as the high mortality risk that have been noted of both
anorexia and bulimia, suggests that attention to the illness is a matter of urgency (van Hoeken
& Hoek 2020). The possibility for all care seekers to receive effective treatment in order to
recover from an eating disorder should thereby be regarded as a matter of high priority. In
providing adequate treatment, the arising issue becomes its adjustability to a varied group of
care seekers. As the dominant norm culturally, in research and within healthcare associates
eating disorders particularly with young, cisgender girls and women, there is established an
invisibility of others who are greatly affected by the illness (Coelho et al. 2019). The question
and arising issue therefore becomes who gets left outside the normative and what effect that
invisibility has.
In a survey study on the health of trans persons in Sweden, it is reported that more than half
of the participants told of having “a problematic relationship to food and eating” (The Public
Health Agency of Sweden 2015:48). This can be taken into consideration also with
international research that shows how trans and nonbinary individuals are at a higher risk of
developing eating disorders than cisgender individuals (e.g. Hartman-Munick et al. 2022;
Simone et al. 2022). The access to eating disorder treatment1 for trans and nonbinary care
seekers should therefore be of great interest for care providers as well as researchers. The
field of research covering trans and nonbinary experiences of eating disorders has in the last
couple of years become increasingly present internationally. This growing field for example
shows that discourses concerning gender and identity can be closely intertwined with the
relationship to the body and the prevalence of eating disorders (Coelho et al. 2019). However,
it has also become evident that existing spaces of eating disorder treatment are not sufficient
in meeting trans and nonbinary care seekers’ needs (e.g. Duffy, Henkel & Earnshaw 2016;
Diemer et al. 2018). Hence, even if the research field is growing, the applicability of the
treatment is still addressed as being in need of improvements.
1 Eating disorder treatment in this thesis refers to clinics or units that are specialised at treating specifically
eating disorders.
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As international research repeatedly points to, the possibility to access eating disorder
treatment is to be considered an important aspect in the field of trans health. Though this is a
growing research field, the focus on trans and nonbinary experiences of eating disorders is
lacking in both Swedish research and governmental guidelines. It therefore becomes clear
that it is of essence to further position the research in Sweden as well, directing the focus to
Swedish eating disorder treatment more specifically. As there is a lack in recognising a trans
and nonbinary perspective in relation to eating disorders on several levels in Sweden, the
question becomes how that absence is mirrored also within treatment.
1.1 Research aims
The aim of this thesis is to make visible the discourses and norms that affect the accessibility
of Swedish eating disorder treatment for trans and nonbinary care seekers. By interviewing
care seekers who have sought and participated in eating disorder treatment, the study sheds
light on what discourses either make possible or limit the access to care. This thereby makes
visible ways in which trans and nonbinary experiences are and can be given space within
treatment. The focus on a care seeker perspective will map out lived experiences of the
applicability of treatment methods and possible barriers in seeking care.
The material is intended to function as a stepping stone for considering the applicability of
the practised methods in eating disorder treatment as well as what conditions its accessibility.
It will also raise awareness to the knowledge production and discursive resources that are
produced within and outside the field. Finally, this thesis is structured around the following
questions:
1.2 Research questions
1. How do trans and nonbinary care seekers experience and describe the accessibility
and applicability of Swedish eating disorder treatment?
2. What discourses and norms become apparent in trans and nonbinary care seekers’
experiences of seeking or participating in eating disorder treatment?
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2. Background
As a foundation for the following explorations of the research field, this background chapter
will firstly map out a brief terminology of trans2 health. This becomes a basis for
understanding how historically established discourses both within and surrounding healthcare
affect also its present conditions for trans and nonbinary individuals. To further form a
foundation for the field, the background will also cover governmental reports and guidelines
concerning trans health as well as eating disorders in Sweden. This is done in order to view
what space trans perspectives are given in reports and guidelines about eating disorders, as
well as the space eating disorders respectively are given in reports on trans health. The
purpose is to set a frame for the national conceptualisation of how care should be distributed
and what perspectives it acknowledges. This frame of healthcare discourses will come into
contact with following material further on.
2.1 A brief terminology of trans health
In Understanding Trans Health, Ruth Pearce (2018) accounts for how health, with a specific
focus on trans health, has been made into not only an individual matter but rather a space
negotiated by different power relations. There has historically prevailed two main approaches
to understanding trans both culturally and within healthcare; trans as “condition” and trans as
“movement” (Pearce 2018:9). While an understanding of trans as a condition needing
treatment has historically dominated the medical field, the understanding of trans as
movement stems from activism aiming to replace pathologizing attitudes toward transness.
The movement approach to trans hence centres social norms as the main issue or barrier to
trans health rather than viewing transness as something to be fixed. What is important to note
is that even though there has been a discursive and social shift in the understanding of trans
health, both attitudes still remain, with remnants of pathologizing still recurring. According to
Dewey & Gesbeck (2017), the distribution and accessibility of rights for trans and nonbinary
individuals are negotiated by how legitimation of gender has come to be a matter of
orientation within a field of diagnoses. In this field, medical and juridical instances have the
power of assigning legibility. This practice of inscription is not only a medical but also a
societal one, shaping what becomes the normative on different levels. In a realm of
2 The term trans is here, as well as in some following research investments with the term, used as an umbrella
term for both trans and nonbinary perspectives. As Pearce (2018, 4) describes, this is an “open” usage that refers
to “a wide repertoire of identities, experiences and modes of gender presentations”.
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medicalization, medical professionals are given the power of deeming how bodies should
behave and function. A deviation from the norm intensifies this practice, making as a result
certain bodies “overmedicalized” and particularly monitored (Dewey & Gesbeck 2017:44).
The distribution as well as dependence on diagnoses – that for example are affected by
gender norms – come to shape the power of as well as the accessibility to medical and social
practice. Within this discourse, trans and gender nonconforming individuals become
monitored to a great extent.
To further address the norms that affect the health of trans and nonbinary individuals, two
central terms in mapping out a terminology of trans health are cisgenderism and
cisnormativity. Cisgenderism can be understood as a form of “systemic oppression”, which is
founded on the notion that all individuals have to fit into a transgender/cisgender binary
(Berger & Ansara 2021:118). The term also brings light to how spaces and societies are
organised around an assumption that cisgender experiences are universal and applicable to all
(Pearce 2018). The cisgenderist discourse hence establishes a binary which limits the range of
possible subject positions. The possibility of identification within a cisgenderist discourse is
thereby limited to a cultural understanding of having to be either/or in relation to cis or trans.
The effects of this can be for example misgendering, pathologising or a misrecognition of
nonbinary positionality (Berger & Ansara 2021).
Whereas cisgenderism can be understood as a systematic framework, cisnormativity is a
practice situated within that sphere. Cisnormativity applies to a discursive understanding of
how bodies should or are assumed to behave and look in relation to a set of gendered norms
(Berger & Ansara 2021). Cisnormativity is to a large extent dependent on the interpellation
made by others such as family and social authorities who assign specific genders to specific
bodies based on a norm. The source of cisnormativity is an expectation on how people who
identify as either male or female – which are viewed as the only possible options – need to
also have or desire certain body parts or functions associated to those identities.
Cisnormativity thus has consequences on the health and wellbeing of individuals who do not
align with its ideas, as it ignores “the diverse ways in which people navigate gender norms,
which may include dismissing the legitimacy of transgender experience” (ibid:124).
Cisnormativity is, in sum, a set of normative practices within the discursive field of
cisgenderism.
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As a contrast to cisgenderism and cisnormativity, Pearce (2018:43) argues for an
understanding of cis as well as trans as social categories with “fluid boundaries”. Another
term which Pearce accounts for in relation to this is gender pluralism which, in contrast to a
trans/cis binary, is an approach to identity that enables movement as well as stability. Gender
pluralism questions the discursive fixation of gender as either/or and, as Pearce puts it,
enables a focus on the “liveability of trans lives” rather than an obsession with determining
authentic embodiments (ibid:48). In the healthcare setting, there is recurrently a fixation with
the binary, which is something that gender pluralism questions. This fixation becomes further
exemplified in trans specific health services that tend to be structured around a form of
gatekeeping that finds its foundation in two forms of assessments. Firstly, the “not-trans/trans
distinction” that aims to conclude whether the care seeker fills the normative criteria for
being trans. Secondly, the “male/female binary” that allows the clinician to make assumptions
on the client’s gender identity and how the treatment should proceed in line with this binary
(ibid:60). These limited views on identity as fixed to a binary becomes evident in a range of
different healthcare spaces, as will become apparent in following chapters.
In conclusion, this brief terminology presents some useful terms and discursive
understandings of how trans health is negotiated. It also brings light to how the use of binary
categories and norms regarding authenticity can work as gatekeepers for trans and nonbinary
care seekers, limiting the possibilities of care depending on how a body fits into the norm.
These perspectives on trans health and clinical approaches allows for noticing how discourses
of cisgenderism and cisnormativity remain in action and affect how care is practised today.
2.2 National guidelines and recommendations
I will begin with briefly accounting for how national guidelines concerning trans health
acknowledges the codependency of different forms of treatment. The national guidelines God
vård av vuxna med könsdsyfori was presented by The National Board of Health and Welfare
in 2015. In these guidelines, it is recommended that clients receive psychosocial support
before, during and after gender affirming treatment and evaluation processes. The guidelines
also highlight the importance of that “the diagnostic evaluation is not unnecessarily delayed
by an eventual psychiatric comorbidity”, hence suggesting that additional treatment should
proceed in parallel with the evaluation (The National Board of Health and Welfare 2015:32,
my translation). This would mean that in the case of a client having a need for – to name as
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an example – both eating disorder treatment as well as gender affirming care, it should be
possible to be provided both simultaneously. Eating disorders are not mentioned specifically
as an aspect to take into consideration in these guidelines for treatment of adults. They are
however mentioned in the national guidelines for children and young people with gender
dysphoria as a common form of intersecting psychiatric condition (The National Board of
Health and Welfare 2022:55). The requirement on being under a certain weight does at the
same time play an influencing part on the possibility to receive gender affirming care, as it is
a requirement to have a BMI ≤ 30 in order to be regarded as appropriate for the treatment
(ibid:77). This requirement is not mentioned in the guidelines considering adults, but is
affecting adults as well as can be seen in for example the information provided by one of the
gender affirming clinics in Sweden (Sahlgrenska 2023). The possible demand on weight loss
and the prevalence of eating disorders can hence be present in the same space.
Directing the focus to Swedish eating disorder treatment, there are currently no national
guidelines covering eating disorders to a greater extent. An often referred to set of
recommendations are however the guidelines developed by the Swedish Psychiatric
Organisation. These guidelines do address trans experiences in a section regarding gendered
differences, but only briefly without an extensive discussion (Wallin et al. 2015: 21). In 2019,
The National Board of Health and Welfare did however publish a summary on the current
knowledge production on eating disorder treatment. One finding was the limited reach and
inclusiveness of care depending on regional resources and principles (The National Board of
Health and Welfare 2019). In relation to this, treatment also lacks in providing a combined
resource that covers both eating disorders and other conditions or illnesses. It is thereby
recommended that clients with eating disorders should be evaluated for comorbidity in order
to be offered relevant care. The findings also present a number of research approaches that are
shown to be lacking. It can be noted then that research focusing on other than cisgender
experiences of eating disorders is not mentioned. In relation to gender, it is only mentioned
that there is a lack in research that “covers all ages and both genders ” (ibid:26, my translation
and emphasis). This formulation thus merely covers a binary understanding of gender.
Lastly, several reports have been released over the last couple of years regarding the
accessibility and limitations of Swedish eating disorder treatment. In 2023, the organisation
Frisk & Fri released the first of their now annual reports on clients and close relatives’
perspectives on eating disorder treatment (Levallius 2023). Some of the major themes that the
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study makes apparent are the low level of knowledge particularly in primary care, how long
waiting times become barriers to receiving treatment and that there is a lack in accounting for
comorbidity. The study does not address gender in any particular way other than giving the
participants the options of identifying as female, male or other (ibid.). What can overall be
spotted in the national guidelines, recommendations and reports is a lack of accounting for
trans and nonbinary perspectives on eating disorder treatment. Eating disorders are in
addition not mentioned particularly as affecting the health of trans and nonbinary individuals.
The effects of eating disorders on this group thereby becomes a mainly invisible question on
the level of governmental guidelines and reports. How this intersection is supported or
contrasted in clinical practice becomes the continuing question for the literature review.
3. Literature review
The following literature review will establish a framework for ways that research on eating
disorders and trans health intersect. To find material, I used a set of key words to go through
some of the most relevant databases for this research field. A large set of the material was
found through the Gothenburg University Library search motor. Additionally, I used the same
key words in the databases Scopus, PubMed and Gender Studies Database. Since the separate
fields of “eating disorders” respectively “trans”, “lgbtq+” and “non-binary” in themselves are
extensive, I did my research by combining the medical field with queer studies in order to
find research done from these particular perspectives. This limited the research and made it
possible to cover som of the most crucial material for mapping out the field I am working in.
There can undoubtedly be resourceful material in research on eating disorders as well as
queer studies from more general or different perspectives. Nonetheless, the main focus for
this limited space became the interconnectedness of the two, to the extent it could be found.
The findings have been structured into two main themes and additional subthemes. Firstly, in
Perspectives on trans health in Sweden, I will account for some of the Swedish research
concerning trans health. This sets a frame what has been covered in the Swedish research
field as well as building further on the previously mentioned national guidelines. The second
and major part of the literature review – Covering the field of international research – will
map out the recurring themes and findings in international research done on the thresholds of
eating disorders and trans health. This will present perspectives on and norms within care, its
accessibility and what has been found to be the burning points in improving treatment. Weight
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stigma as a foundational barrier acknowledges diagnostic practises and how stigma interacts
with the possibility to access care. The adaptability of eating disorder treatment accounts for
how cisnormativity within treatment affects trans and nonbinary care seekers negatively. In
Body shape and gender dysphoria, the research maps out how body norms as well as gender
dysphoria possibly interact with the eating disorder. Finally, A call for multidisciplinarity
highlights the intersections of eating disorder treatment with other instances of care.
3.1 Perspectives on trans health in Sweden
To begin with is an outline of some of the themes in Swedish research on trans health and
experiences of healthcare. One of the main focuses within this research field is the
accessibility and functions of trans specific healthcare3. An essential aspect in accessing
Swedish trans specific healthcare has been shown to be the practice of negotiation.
Negotiation is described as “a process in which subjects handle and transact power positions
and resistance in order to increase the room for action” (Linander et al. 2017:10). As legal
and medical evaluations condition the acceptance into trans specific healthcare, it has become
difficult for care seekers to express any critique toward the system as that might risk losing
the right to treatment. Therefore, expressions of concern are negotiated. Another factor
affecting the access to treatment is the impact of how well the material body is “qualified”
and passing according to the diagnostic standards (Bremer 2017:96). Lastly, the process of
accessing trans specific healthcare might also be more or less extensive due to regional
differences in the access to primary healthcare (Repka & Repka 2013). The access to trans
specific healthcare is thus firstly negotiated by location and secondly by primary healthcare,
which in its turn has the position of making a further referral. Primary healthcare therefore
plays a crucial role in enabling the possibility to receive specialised forms of treatment.
As is shown by Bremer (2017), another central aspect in the process of seeking trans specific
healthcare is waiting. The waiting process can situate the care seeker in a form of
“disorientation” as the wait makes it difficult to find stability and comfort in the present
situation (ibid:79). The process of waiting is highlighted also in another study, which
describes how it has become a “diagnostic practice” in gender affirming care (Linander &
Alm 2022:997). Waiting is thereby intertwined with the medical procedure in different ways.
3 Trans specific healthcare, which also can be named as trans healthcare, refers to healthcare services
“accessible for persons experiencing gender dysphoria, meaning both for transmen, transwomen and non-binary
people” (RFSL 2023)
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It is a foundational condition for being applicable for treatment in the first place, as the
evaluation process for gender affirming care is initiated with year-long diagnostic practices
and criterias for evaluating the care seeker’s “motivation” (Bremer 2017:23). The aspect of
waiting therefore functions as a form of delay for receiving care. The delay is upheld further
by a demand on having to recover from other conditions – such as eating disorders – before
being judged as compatible for gender affirming care (Linander & Alm 2022). Waiting hence
creates a form of liminal state for the care seeker of being neither in nor fully outside care,
which creates both uncertainty and powerlessness as other psychosocial support is in addition
lacking in that process (ibid.).
To build further on the Swedish research field, studies on other forms of treatment that are
not trans specific makes evident that cisnormativity often is prominent in clinical practices.
One study highlights psychiatrists’ perspectives on treating gender nonconforming clients
(Traczyck, Wurm & Ahonen 2013). There, the findings show that a heteronormative
framework is dominant in the practice, which further establishes a stigmatisation of
discussing gender identity. This can be connected to another study on how psychological
research and practise is repeatedly limited by its narrow use of theories and methods
(Lundberg, Wurm & Malmquist 2022). Through an interview study on trans experiences, it is
noted that these theoretical frameworks and treatment approaches lack in thoroughly covering
experiences of discrimination and exposure affecting trans and nonbinary individuals. This
creates an injustice due to the difficulties in having their existence acknowledged within the
binary norm. This is something that is not acknowledged enough by the commonly practised
theories and approaches – such as minority stress and coping theories – within psychology
(ibid.). Hence, the traditions of for example psychiatric treatments may be less applicable to
trans and nonbinary care seekers, which becomes a barrier for receiving efficient treatment.
To summarise the Swedish research on trans experiences in healthcare that has been covered
here, there appears some recurring themes that points to a dissonance between the national
guidelines and the practical conditions of care. Waiting times and negotiation are central
practices in accessing specialised treatment, and the receival of support from other instances
is found to be lacking. As is also shown, cisnormativity appears as a prominent norm in
several clinical spaces, which might be a source for further stigmatisation.
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3.2 Covering the field of international research
3.2.1 Weight stigma as a foundational barrier
In previous studies that focus specifically on trans and nonbinary experiences of eating
disorder treatment, a range of barriers to receiving adequate care have been made visible. One
major type of barrier is the medical conceptualisation and recognition of eating disorder
behaviours and diagnoses. Within this, the function of norms regarding eating disorders and
body shape play an essential role in how well one is received within care. In an investment
with how diagnostic practices fail to adhere for bodies outside the norm, with the example of
atypical anorexia4, Harrop et al. (2023) use the term weight stigma. Weight stigma is
described as a “systemic discrimination that values thinner bodies over larger bodies”, which
thus establishes a stigmatisation of fatness (ibid:2). Research on weight stigma highlights
how body shape and weight, intersecting with other forms of stigma such as cisgenderism,
become factors in how likely one is to receive adequate care and treatment. As another study
on LGBTQ care seekers shows, weight stigma can enhance minority stress as caregivers
make wrongful assumptions or directs the focus to the client’s weight or fat instead of what
they are actually seeking care for (Paine 2021). An overemphasis on weight and building
frameworks of healthiness based on norms of thinnes may hence hinder the caregiver in
valuing fat embodiments in for example an eating disorder evaluation.
As an example of weight stigma, Harrop et al. (2023) brings light to how individuals with
atypical anorexia nervosa are less likely to fulfil the diagnostic requirements for receiving
treatment. This can be taken into consideration with other findings showing that OSFED5 and
specifically atypical anorexia nervosa is the most common form of eating disorder among
gender diverse care seekers (Chaphekar et al. 2022). As these findings show, even though the
weight might be higher than the normative, the syndromes and consequences of the eating
disorder for clients with atypical anorexia are relatively the same. Weight stigma therefore
plays one part in creating a hindrance for acknowledging care seekers whose bodies do not fit
the normative embodiment of an eating disorder. In sum, the diagnostic requirements for
what to consider as an eating disorder become one primary barrier for accessing care. With
atypical anorexia as one example, weight stigma along with ideas about what fits into
4 Atypical anorexia adheres to cases of anorexia nervosa that tick the boxes for the normative diagnosis except
for the level of BMI and underweight (Harrop et. al 2023)
5 Other Specified Feeding and Eating Disorder
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standardised forms of eating disorder diagnoses hence are part of the foundations of
(in)accessible care.
3.2.2 The adaptability of eating disorder treatment
As the foundational barriers can be more generally applicable to a wide range of care seekers,
another barrier that to a great extent affects trans and nonbinary care seekers more
specifically is the prevalence of cisnormativity. Cisnormativity affects the field on different
levels. As several studies highlight, a majority of previous research on eating disorders have
prioritised cisgender perspectives (Riddle & Safer 2022; Cusack, Iampieri & Galupo 2022;
Zamantakis & Lackey 2021). Paradoxically, trans and nonbinary individuals are at the same
time found to be at an elevated risk of experiencing body dissatisfaction and developing
eating disorders than cisgender individuals (Hartman-Munick et al. 2022; Simone et al. 2022;
Witcomb et al. 2015). The disregard for trans and nonbinary perspectives has thus failed in
covering an angle that reportedly needs attention.
In addition to affecting the research field, cisnormativity becomes visible also within
treatment. Negative experiences from eating disorder treatment is a common theme in several
studies accounting for care seekers’ own experiences of care. In one interview study on
transgender clients’ experiences of eating disorder treatment in the US, it is notable that none
of the participants claimed to have had positive experiences of the treatment they received
(Duffy, Henkel & Earnshaw 2016). Some examples of negative treatment are the occurrence
of “dismissal, stereotypes, assumptions, and bewilderment from clinicians” (ibid:145). Other
examples are findings showing lacking awareness of terminology among practitioners in the
field as well as tendencies to avoid questions of gender identity in the treatment (Harrop et al.
2023). The requirement for an improved ability in discussing gender identity is further
addressed in another study, which also highlights the need to make space for other than
binary and cisnormative methods (Hartman-Munick et al. 2021). With nutrition
recommendations as an example, it is argued that these methods can be misguiding as they
are based on the client’s birth-assigned sex rather than their present embodiment. Being
shaped by a cisnormative understanding of the body, the applicability of the treatment might
therefore be negatively affected.
As a case series on gender nonconforming adolescents with eating disorders suggests, there
might be additional “complex factors” that affects this group differently than cisgender peers
15
(Donaldson et al. 2018:479). This can for example be the discomfort with and need to deal
with gendering attributes of the body. The limited space that this particular need is given
within eating disorder treatment is discussed in another study, where an example of a
cisnormative method is the “body acceptance” narrative (Hartman-Munick et al. 2021:5). For
clients who are trans or nonbinary, this narrative dismisses the gendering functions of the
body and risks clashing with the needs of shaping it in order to align with identity. The
occurrence of narratives and methods within care that argue for certain body shapes and
functions being “normal” is further addressed as possibly becoming dismissive to the bodily
discomfort of gender nonconforming care seekers (Duffy, Henkel & Earnshaw 2016:140).
This entails a possible clash between the client and caregiver perspective, as the client’s
experience might be “downplayed” due to traditional approaches (ibid.). Hence, with the
body acceptance narrative as an example, cisnormativity is shown to become a limit both in
the conduction of research as well as within eating disorder treatment.
3.2.3 Body shape and gender dysphoria
In viewing factors with which the eating disorder may interact, two dominant themes
addressed in previous research are the intersections with body norms as well as with gender
dysphoria. If starting with addressing the connection to body norms, it is highlighted that
losing weight or to in other ways control one’s eating can be a way to cope with societal and
gendered expectations or ideals. One addressed factor is how femininity and androgyny are
normatively connected to thinness, which gives body shape impact on to what extent
someone is gendered correctly (Cusack, Iampieri & Galupo 2022). Except for thinness,
femininity is also associated with curviness which might be another source for dissatisfaction
(Cusack & Galupo 2021). Additionally, adjusting to gendered norms can be experienced as a
cultural demand which a body is required to adjust to in order to not be questioned in the
legitimacy of its identity (Cusack, Iampieri & Galupo 2022). Connected to this, demands on
passing in line with binary body norms can be experienced as pressuring and therefore
triggering the use of starvation (Zamantakis & Lackey 2021). It should be noted that though
androgyny is normatively ascribed with a thinness ideal, a drive for thinness is not to be
regarded as the only desired nonbinary embodiment (Cusack & Galupo 2021). It should also
be addressed that thinness is not the only body norm which may trigger an eating disorder –
nor are body norms a sole driving force for eating disorder behaviours (ibid.). Nonetheless,
body norms do have noted effects and correlations to identity which are relevant to take into
consideration.
16
The factor of body norms and shape bridges over to how the eating disorder possibly
becomes a form of coping with gender dysphoria. When moving toward a “healthy” weight
and what is regarded as progress in eating disorder treatment, the experiences of gender
dysphoria may increase and therefore result in a heightened feeling of bodily discomfort for
the client (Harrop et al. 2023). Gender dysphoria and body dissatisfaction can therefore in
some cases be regarded as intertwined and difficult to separate. These findings are supported
by research on the interrelationship of gender affirming medical interventions and the effects
of eating disorders. In one study, it is shown that participants who have undergone gender
affirming care show a higher level of body satisfaction than those who are still waiting for
receiving that care (Testa et al. 2017). According to another study focusing on the effects of
cross-sex hormone treatment (CHT), the results show that the transgender participants who
were waiting for CHT showed a higher level of eating disorder symptoms in comparison with
the general population as well as to participants who had already undergone CHT (Jones et al.
2018). If we connect back to what was previously discussed on the subject, the process of
waiting for treatment may then be a trigger for the eating disorder. In conclusion, recovery
from the eating disorder can thereby be helped by the access to other forms of treatments.
3.2.4 A call for multidisciplinarity
As was made apparent in previously mentioned studies, receiving gender affirming care can
have a positive effect on the care seeker’s possibility to also recover from an eating disorder.
However, in order to access gender affirming care, there is in some cases required that one
has to “resolve” one’s eating disorder first as it is taken as an indication that the client is not
“appropriate” for receiving care (Testa et al. 2017:928). Additionally, waiting for gender
affirming care or in other ways having to undergo secondary sex characteristic development
may result in using self harm as a coping mechanism in order to change or control the body
(Donaldson et al. 2018). It is also pointed out that it is essential to practise a continuous
screening for eating disorders in the process of receiving gender affirming care, since
accessing care will not necessarily solve all the client’s possible issues with the eating
disorder (Chaphekar et al. 2022). An eating disorder is thereby not to be considered simply
resolved through one line of treatment.
In the same way that trans specific healthcare can benefit from considering support for eating
disorders, it is also of issue for eating disorder treatment to acknowledge trans and nonbinary
17
positionings. It is thereby noted in research a call for acknowledging a multidisciplinary link
between trans specific and eating disorder treatment, as both fields need to be aware of each
other (Donaldson et al. 2018; Duffy, Henkel & Earnshaw 2016; Diemer et al. 2018).
Important to note though is that even though some research shows that eating disorders can
be a response to gender dysphoria, it is not to be taken as a necessary basis for why trans and
nonbinary individuals develop eating disorders. Eating disorders may exist before or
independent of the gender dysphoria as well and even though body dysmorphia and gender
dysphoria may interact, they are not to be regarded as the same phenomenon (Zamantakis &
Lackey 2021). Hence, there is a risk that providers put too much attention on gender identity
in their treatment of eating disorders, when in actuality the two might not be connected or
dependent (Cusack, Iampieri & Galupo 2022; Duffy, Henkel & Earnshaw 2016). Important
therefore to note are the foundations of the illness that lie not in identity itself but in the
discursive distribution of subject positions, resources and norms that affect bodies.
4. Theoretical framework
The theoretical framework has emerged simultaneously with the material collection. To begin
with, I will account for how the theories of biopower, the medical gaze and biomedicalization
– which all are intimately linked – together are useful for understanding the foundational
power relations both within and surrounding clinical spaces. Secondly, theories of minority
stress function as a tool for viewing possible stressors that may affect trans and nonbinary
individuals, and how these have impact on the everyday life. Lastly, what will be shown in
the empiric data to be prominent in making eating disorder treatment more or less accessible
is how emotions and stigma impact the individual. Thereby, I will lastly account for affective
economies and politics of emotions as a final part of the theoretical framework. Together,
these theories will be used in order to create an understanding of the history, power dynamics
and emotionality of seeking care.
4.1 The power of the medical gaze
In order to grasp structures of power, the work of Michel Foucault (1973; 1978) has been
fundamental for many following investments with clinical discourses. The concepts that are
accounted for in the following chapter will function as a theoretical lens for viewing the
possible ways in which power is, and has been historically, transacted in healthcare settings
as well as in society. Foundational for making visible the power relations in clinical settings
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in this analysis will be the clinical gaze, which conceptualises the clinical practice, and
biopower, which furthers the practice’s impact in the structures of society. To build on these
theories further and their historical movement, biomedicalization theory will be accounted for
using Clarke et al.’s (2003; 2011) view how on an era of medicalization merges with
biopower. This shows how the body in the modern society is negotiated and conditioned
through medical and societal discourses.
4.1.1 Biopower and the clinical gaze
In The Birth of the Clinic (1973), Foucault describes how the relationship between caregiver
and client is riven with power dynamics where the gaze of the clinician is a driving force for
establishing agency and legitimising the conditions of the client. The condition of the body is
not, in this discourse, objective - rather, the client’s condition is negotiated by “the reductive
discourse of the doctor” who views the patient (Foucault 1973:xi). In this sense, the
possibilities of the client is largely determined by the caregiver. Through medical practices, a
“rational language” has become established where believed objective understandings of the
body are in fact negotiated by the clinical practice and gaze (ibid:xiv). Foucault points out
that though there has been a historical shift in how to view illnesses and bodily conditions,
history is yet present in how the body is conditioned in the current time. The clinical
discourse is therefore not separated from history; it is riven with history which in its turn
determines possible ways to view the world (ibid:xvi). The new and present structure of the
clinic is no longer founded in a dialogue where the clinician enquires the client about what
they feel. Instead, the modern clinician is interested in what they themself can see in the body
in order to draw conclusions based on a discursive understanding. This creates a hierarchy in
the clinic, where discourses of health and illness become prioritised over the perspective of
the client.
The clinical gaze plays a function both inside and outside the clinic in a greater web of power
relations. In The History of Sexuality Volume I (1978), Foucault introduces the term biopower
as a means for understanding the functions and distribution of power in society. In the era of
biopower that has been enabled by institutional spaces such as healthcare, Foucault
(1978:139) conceptualises one pole of biopower as the “biopolitics” of the population, which
centres on the body as a vessel for life. The possibility and desire to manage life has gained
an increased relevance in the biopolitical society, with risk management becoming a form of
cultural responsibility. Hence, the foundation for biopower and the biopolitical society is its
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distribution of responsibility and regulation of bodies around a societal norm (ibid:144).
Within this discourse, more specifically a gendered norm has become a tool for how we
structure and create understandings of intelligibility, body and identity.
As a whole, biopower works as a societal structure where bodies and populations are
disciplined around norms through institutions such as the police, family; and medicine. The
theoretical lens of biopower makes visible the dominance that norms, with gendered norms
having a central impact, have been given in the ways cultural and institutional practices come
to shape our views of the body. With the clinical gaze as a central actor in the biopolitical
discourse, it becomes clear that healthcare settings are spaces riven with power relations.
4.1.2 Biomedicalization
The Foucauldian understanding of the clinical gaze and biopower become stepping stones for
further conceptualisations of how society has been shaped around the power of medical
norms. Based on the theory of biopower and as an extension of medicalization theory, Clarke
et al. (2003; 2011) developed the term biomedicalization to make visible the functions of
medicine and cultural power. Like biopower, biomedicalization centres on the ways in which
bodies are expected to become more in line with the norm rather than to look at illnesses per
se. Though biomedicalization theory has an extensive focus on the evolution of scientific
methods of transformation and biomedicine, a prominent part of the theory also refers to the
centrality of “individual responsibility” that is put on modern care seekers (Clarke et al.
2003:162). This individualisation in its turn establishes health as a matter of morality and an
object of personal desire, which becomes apparent in the ways medical care distributes
responsibility to the care seeker.
Fundamental in understanding biomedicalization is its use of risk as a driving force for
surveillance (Clarke & Shim 2011:177). Discourses of the body and health establish some
bodies as being at risk, or some behaviours as particularly risky. By deeming bodies as risky,
a stigma is established, which creates driving forces in either disciplining those particular
bodies or, from a consumer perspective, to consume methods for avoiding being at risk.
These risk technologies hence create “standard models” into which bodies are expected to fit
into (Clarke et al. 2003:172). As a result of standard models, the method of treatment
becomes a fitting into the normative rather than adjusting to individual needs and functions.
This means that illnesses are streamlined into a norm which has one specific cure or
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procedure attached to it, into which all bodies must fit. These standards then become apparent
in the clinical space, establishing expectations on how to move toward healthiness.
As can be seen in these takes on medical discourse, health is woven into the structures of
society and the ways bodies are disciplined and regulated. Though biomedicalization speaks
in one sense of a greater agency of the care seeker due to the increased individual
responsibility, this agency is still negotiated by the expected adjustment to the normative. In
total, both biopower and biomedicalization can be seen to structure the modern clinical
discourse simultaneously. The norms of the body that these discursive understandings
distribute will further be made visible in relation to the space of eating disorder treatment.
4.2 The minority stress model
The minority stress model has become a common theoretical tool for understanding the
intersectional effect on health that different forms of oppression can have on an individual.
For this study, the model becomes effective in viewing the impact that previous experiences
as well as factors within the medical setting can have on the care seeking and treatment
process.
In their adaption of the minority stress model, which originally was conceptualised in relation
to LGB people in 2003 by Ilan H. Meyer, the basis for Hendricks & Testa (2012) is the
increased request for awareness within healthcare trans and nonbinary perspectives. In their
approach to the model, the understanding of distress among trans individuals is oriented
around stressors that affect the general wellbeing of this group. In both Meyer’s and
Hendricks & Testa’s approach to the model, stressors are divided into distal and proximal
stressors. Distal stressors are understood as “objective events and conditions”, whereas
proximal stressors are “subjective” and rooted in personal interpretations (Meyer 2003:676).
Distal and proximal events often share an intimate link; as distal stressors are events that
happen to the individual, proximal stressors are the effects and internalisation of those events.
In Meyer’s (2003) model, proximal events are rooted in self identity and take shape through
for example concealment or expectations of rejection.
Stressors can be managed through different coping mechanisms, which according to Meyer
(2003) can have either relieving or increasingly stressful effects on the individual. An
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effective coping mechanism to handle stress is for example resilience through belonging to a
community or group. However, Meyer (2003:677) also notes the risk of personal coping
mechanisms to enhance stress and names concealment as an example of this. To conceal what
is stigmatised, both for one’s surroundings and for oneself, may result in an enhanced burden
and distress. In close relation to the stress of concealment, Hendricks & Testa (2012:464)
name thwarted belongingness as an additional, proximal source for stress. Thwarted
belongingness refers to how the lack of support, social connections or recognition can
become stressors which establish a feeling of loneliness and thereby a foundation for mental
distress.
The minority stress model has been further expanded through the inclusion of additional
forms of distal and proximal stressors more applicable to trans and gender nonconforming
individuals (Testa et al. 2015). Firstly, a form of distal stressor that is not brought up in the
original model is nonaffirmation. This form of stressor appears when “one’s internal sense of
gender identity is not affirmed by others”, including for example the usage of wrong
pronouns or the lack of a gender neutral language (ibid:66). Another difference between
gender and sexual minority stress is the experiences of concealment. One example of how
concealment functions differently than in Meyer’s (2003) model is the impact that “physical
cues” have on the perceivement of one’s gender (Testa et al. 2015:67). According to the
authors, gender is more physically connected and negotiated based on appearances such as
“body size and shape” compared to sexuality (ibid.). Disclosure of gender does not in the
same way as in the original model become a matter of choice and verbal disclosure but rather
is dependent on bodily appearance and other’s perceptions to a greater extent. Hence, not
having the choice of choosing to disclose one’s identity might become a source for stress.
Another development of the minority stress model, which becomes relevant for this thesis, is
to further its applicability for genderqueer people (Lefevor et al. 2019). One factor that
affects genderqueer people can be a greater frequency of having to come out or inform about
one’s identity, due to a lack of understanding for queerness, combined with experiences of
hostility toward queer identity (ibid:387). Another factor, which is shared with the previously
mentioned models, is the lack of visible representation of genderqueer identities.
Consequently, the lack of representation results in less sources for resilience. Based on these
factors, the authors stress the need for developing studies on minority stress to not always
assume that trans and genderqueer experiences can be summarised into one consequent
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whole. Rather, it becomes important to address how different stressors may function
differently or take unique shapes depending on what individuals they affect. A large part of
the stress that is unique to genderqueer individuals is according to the authors rooted in
language and a cultural understanding of gender that does not acknowledge queerness
(ibid:392). The lack of inclusiveness through available language may then result in less
possibilities for resilience, more experiences of invisibility and barriers to disclosing one’s
identity.
In total, the various takes on the minority stress model clarifies the relevance of taking into
consideration different factors that possibly affect the individual in the care seeking process.
Acknowledging stressors can also highlight the particular impact those stressors come to have
on the accessibility of a particular space – such as the space of eating disorder treatment.
4.3 Emotions and their movements
The historic and discursive distribution of power within and outside the clinical space has
made it more or less accessible for certain bodies. Also, as has been accounted for in relation
to minority stress, emotions play an essential role in shaping the possibilities and orientations
of the individual. To thereby build further on the previously discussed theories, and to dig
deeper into the functions of emotion more specifically, this last section of the theoretical
framework will account for Sara Ahmed’s (2014) understandings of emotions in The Cultural
Politics of Emotion.
4.3.1 Affective economies and stickiness
Rather than originating within a subject, Ahmed (2014) understands emotions to be
transacted between bodies and objects in a form of economy. This is a signifying process
which Ahmed names affective economies (ibid:45). Affect is not inherent in an object or sign
– rather, affect becomes in the circulation of emotions. Emotions are consequently not
attached to singular subjects. Instead, their circulation functions as a “differentiation” of
certain bodies from other bodies or objects (ibid:47). Hence, emotions are circulating in a
relational existence rather than residing within an individual. This is a process that connects
the subject to a communal history of stickiness. Just like emotions, stickiness gains its effect
depending on the relation between the sticky object and the surface upon which it comes in
contact with. As Ahmed (2014:90) emphasises, “stickiness is an effect” which is dependent
23
on the historicity of the object’s surface. As has been previously mentioned also in the
theoretical frameworks of biopower and minority stress, history plays an important part in
understanding the circulation and attachments of different emotions. Stickiness is thereby a
process of relationality between signs and objects where certain signs or emotions attach
themselves in specific ways to certain bodies.
The tendency for objects to become sticky depends partly on their previous encounters with
sticky signs – again, its history – which makes the possibility of emotions to stick onto its
surface more or less possible. To exemplify, if we connect back to the clinical gaze, the
historic pathologizing and stigmatisation of transness establishes a relation between the care
seeker’s body and the clinical space or practitioners. This relation possibly affects the view
on or approach to the care seeker, or attaches the care seeker with emotions that historically
has circulated in that space. With regards to what makes signs or words sticky, Ahmed (2014)
mentions the function of repetition. As certain signs are repeatedly attached to certain objects
or subjects, that sign also gains an increased level of movement between similar objects upon
which it can stick to a greater frequency (ibid:91). It is thereby not only the sign or object
which sticks per se that determines its own effect, but also the history and receptibility of the
object upon which it sticks.
4.3.2 The politics of fear and shame
With affective economies and stickiness as parts of the fundamental understanding of how
emotions move, Ahmed (2014) exemplifies this movement with a range of specific emotions.
In coherence with the emotions that will be addressed in the empiric data of this thesis, the
focus here will be Ahmed’s approach to the emotions fear and shame.
Fear is, just as the theory of affective economies explains, understood as an emotion which
does not reside in an individual body. Rather, fear works as an effect which establishes or
maintains relationships between bodies or objects and creates a distance between them. In the
affective economy of fear, fear “slides” between bodies, making a sign attached temporarily
to the body to then move over to another (Ahmed 2014:64). However, the fear leaves its trails
as it becomes “taken on” by the body with its effect remaining even as the sign has moved
over (ibid.). Hence, fear has a prolonged effect on the body which compromises its mobility
and orientation in different spaces also after the cause of fear has moved over. Even though
fear is built on an idea of what could happen, the possibility of future pain has an effect also
24
on the present body and its reactions. Consequently, Ahmed (2014:66) makes a distinction
between fear and anxiety where fear is “produced by an object’s approach”, whereas anxiety
becomes “an approach to objects”. Anxiety is understood to emerge as objects of fear pass by,
thereby leaving the body with anticipations of future hurt and thus finding other objects to
approach as threatening. The approach of objects that establish fear may then further result in
an increased level of anxiety in the affected subject, as it establishes a range of objects as
fearsome. Just like the minority stress model recognises the effects of previous experiences,
fear as well has an effect on the present orientation within spaces that are made fearsome.
What objects become fearsome and the possible relations of fear is, again, dependent on
historicity. In a process of stickiness, history makes certain objects more fearsome than others
and maintains relationships of fear between objects or bodies (Ahmed 2014:67). Lastly, there
is a codependency between social and bodily space which negotiates the possibility of certain
forms of bodily presences. Fear has the effect of making bodies shrink and thereby take up
less space. Shrinking stands in contrast to openness, where openness allows the world to
interact with and affect the body. Openness can then be understood to make the body more
present in the social space. Being open, though, allows the world to “press against” the body
– where a reaction can be that the body shrinks itself and thereby also its mobility in the
space (ibid:69). For the sticky body, openness thus comes with the risk of an increased
attachment of fear. To conclude, fear is an effect of historic relations, anticipations and bodily
presence.
As fear turns the subject toward other objects as fearful, shame on the other hand has the
function of turning the gaze inward. Even though shame is a feeling that becomes largely
internalised, it emerges in relation to another – which can be both present and absent – before
which one feels ashamed. Shame becomes an “exposure” which makes the individual “turn
away from the other’s gaze” and thereby inward toward itself (Ahmed 2014:103).
Additionally, except for turning away in an event which feels shameful, being explicitly
ashamed as well as having one’s shame observed is also a cause for hiding. It is thereby both
the shameful event and the shame itself that become simultaneously stigmatised. Shame
hence has the effect of decreasing the possibility of movement, as the space for motion
becomes limited by the need to conceal what is deemed shameful, or even the shame itself.
25
As shame directs itself inward, it attaches a feeling of “badness” toward the self (ibid:104).
Shame therefore entails a process of covering and exposure, with taking cover functioning as
a defence mechanism and exposure as that which to avoid. Cover and exposure become a line
of action which repeats itself, as the exposure of that which has been covered causes a need to
“re-cover” (ibid.). As the crucialness of cover and exposure shows, even though shame is an
internalised emotion, it is at the same time dependent on “how the subject appears before and
to others” – thereby, how shame specifically attaches itself to the surface of the body
(ibid:105). Like other emotions, even though shame has a greatly internalising effect, it is as
well grounded in a cultural idea of what and who are normatively deemed as shameful. It
takes shape in relation to norms to which we regard ourselves as socially having to live up to.
Shame therefore has the function of stigmatising certain bodies, which will affect others’
gaze upon those bodies as shameful. In total, shame is as culturally and socially dependent as
other emotions, with the difference that it becomes to a greater extent internalised and
incorporated into a sense of self.
The understanding of emotions as culturally fluctuating entities puts them in dialogue in a
greater theoretical web of how these emotions are distributed. Emotions can be understood
together with the power structures of the clinical gaze and biopower, as well as becoming
closely intertwined with minority stress. In total, all these theoretical perspectives together
create a framework for viewing the complexities of clinical as well as societal discourses.
5. Method
As I now have mapped out the research field as well as the theoretical framework as
foundational perspectives on the topic that is to be explored, the method chapter will account
for how the study was structured. I firstly explain the method for conducting the research.
Secondly, I will describe the method of analysis which is a mixed method of thematic and
Foucauldian discourse analysis.
5.1 Finding participants and designing the interview questions
My approach to the research aim landed in the conduction of a qualitative interview study
with participants who identify as trans or nonbinary and have experiences of seeking eating
disorder care in Sweden. The choice to focus on a care seeker perspective was done after
considering including interviews with both care seekers and caregivers. However, I came to
26
the conclusion that including both would risk making the analysis less coherent and take
space from the perspectives of the care seekers, who are the ones most affected by the
discourses that the study makes apparent. In order to find participants, I posted my call for
participants in several Facebook groups that I found connected to the topic. Before posting, I
made sure to always ask an administrator if the content was suitable for the group, in order to
not claim space without being accepted. I also contacted a couple of lgbtq+ organisations via
email to ask if they could post the request on their platforms or at their physical location. As a
result, the call for participants was spread further on social media as well as in physical
locations. I also sent the request to some of my friends, in order to see whether they could
spread the word further or knew anyone who would be interested in participating. When
looking for participants, I continuously questioned my positionality and considered ethical
perspectives in accessing groups – for example trans specific spaces – as a cisgender woman.
My positionality as a researcher is of great importance, which is something I will go into
more detail with in the methodology chapter.
In the end, four participants wanted to participate in the study. The participants had the option
of doing the interview in person, online or through writing. To offer both physical and online
interviews was convenient in order to enable participants from different parts of Sweden to
take part, as well as enabling a comfortable form of participation. Even though written
responses do not give room for spontaneous follow up questions, I found it important to offer
in order to again make the participation as flexible as possible. The flexibility in the forms of
interviews was proved useful as all three forms were used. All interviews were conducted in
Swedish and transcribed afterward in their full forms. The participants were offered to read
the transcription if they desired, which one of the participants chose to do. Lastly, the quotes
used in the analysis were then translated into English.
5.1.1 Semi-structured interviews
The interviews were semi-structured and based on an interview guide that I prepared
beforehand. In semi-structured interviews, the researcher prepares an interview guide with
generally open questions (Roulston 2010a). The answers to these can then be followed by
complementing questions, depending on what is needed in the specific context. The same
guide was used both for the interviews as well as to create the written questionnaire for
written responses. This means that there was a set framework for all interviews, but that the
directions the interviews took more specifically varied depending on the context and what the
27
participants themselves wanted to talk about. When deciding where to conduct an interview,
there are several aspects to take into consideration in order to facilitate the needs of both the
researcher and the interviewee. According to Roulston (2010b:6), it is generally ideal for the
interview to take place in a setting that feels “safe and comfortable” as well as relatively
private and free of surrounding disturbances. This was taken into consideration both for the
physical and the digital interviews, where I made sure to find spaces that allowed for privacy
as well as felt comfortable for the participants. In the digital interviews, I both conducted
them at home as well as in a private room in the university library. One object of disturbance
was the occasional network problems in the library, which at points disturbed one of the
interviews and gave it less of a flow. However, the room was suitable for the possibility of
privacy and worked overall well.
According to Roulston (2010b), getting acquainted with the research topic and the situation
of the research participant in question may help in conducting relevant interview questions
and thereby avoid wasting time in the interviews. This includes e.g. getting acquainted with
terminology and doing background research before the interview takes place. Hence, when I
structured my work before starting with the interviews, I made sure to give time to get
acquainted with the field of research as well as with discussions on positionality in the trans
and nonbinary community. I also sent the interview guide to a couple of friends who identify
as either trans or nonbinary in order to get their opinion regarding the relevance of the
questions and if there is something that I should add or change. Lastly, when conducting
interviews, the question of making correct identifications is of consideration in relation to the
respondent and their comfort. Vincent (2018:106) points out “self-determination” as an
important aspect, as relations and feelings to different terms may vary between individuals.
Practising linguistic awareness also creates a more respectful approach to the study’s
participants. Hence, one of the starting questions was what pronouns the participant used, as
well as how they wanted to be identified in the thesis. This gives space to individually choose
how to present oneself, and by not giving options to choose from, the identification will not
be done in order to fit a set framework. To make the analysis coherent, if participants used
several pronouns they were asked if they had one that they preferred being used for the
purpose of the thesis.
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5.2 A mixed method of analysis
In order to use an analytic framework which I found gave, to the greatest extent possible,
space to the participants’ stories – rather than fitting the narratives into a framework that
focuses on aspects that become irrelevant for the purpose of the study – I landed in making
my own analytical framework. This framework came to be a mix of thematic analysis and
discourse analysis.
5.2.1 Thematic analysis
Firstly, thematic analysis is useful as it positions the participants’ experiences as the main
material and most central aspect of the thesis’ knowledge production, having them leading
the way for the themes that form the analysis. As Nowell et al. (2017) point out, thematic
analysis works as a method for finding both similarities and differences between the
respondents. It is also a flexible method, allowing for many different kinds of theoretical
frameworks and a more freely structured analysis. When conducting thematic analysis, the
process consists of consistent documentation of the material gathering process, as well as a
rechecking and re-reading of the data in order to find new meanings as they become more
apparent throughout the process of analysis. The data is eventually structured into themes
through coding (Nowell et al. 2017).
The analysis taking shape can either be deductive or inductive. Deductive analysis goes in
line with a specific research and theoretical interest, whereas inductive analysis takes shape
without a previously set framework (Nowell et al. 2017:8). This thesis can be considered as a
dominantly deductive one as it has a clear research aim. Considering the theoretical
framework, it took shape both before and during the gathering of material, making the
theoretical approach not fully deductive. As the aim was from the beginning to analyse
discourses connected to treatment, this aim also affected the codes that were found. However,
it should be noted that the themes that became apparent took directions that I beforehand had
not foreseen. As examples of this, a large part of what was discussed in the interviews were
experiences and examples that were situated also outside of treatment. Hence, I had to further
consider how surrounding discourses were of relevance. I also had to consider how to make
space for the complexity of the experiences. The interview material made evident both
negative and positive experiences, as well as intersecting factors that I had not foreseen such
as a connection to autism. The unexpected findings came to some extent shift the paths and
29
themes that I initially thought the material would cover. This opened up for additional
theories and connections that I beforehand had not considered.
One lack in thematic analysis is the provision of coherent tools for analysis, which are more
central and definite in other forms of analysis. While thematic analysis is more oriented
around structuring what is said in order to make conclusions based on the appearing themes,
discourse analysis can provide tools for a more focused approach to the power relations and
phenomena that become apparent in the data (Nowell et al. 2017). Since the aim of the thesis
is to make visible the discourses and norms that affect the accessibility of Swedish eating
disorder treatment, using discourse analysis becomes helpful in unveiling the power
structures at play. The problem with different forms of discourse analysis is their full
adaptability to the material. I thereby came to the conclusion to make a mixed method
approach to the material. In order to mesh together thematic and discourse analysis, the
coding and thematisation of the data was approached with a discursive analytical lens.
Following is an introduction to a framework for what practises and understandings of
discourse the analysis will consider. The discourse analytical concepts and approaches to the
text that will be used originate from Foucauldian discourse analysis, as interpreted by Carla
Willig (2013).
5.2.2 Foucauldian discourse analysis
Discourse analysis can be used in order to map out how people through e.g. language and
communication establish the social world (Willig 2013). Discourse analysis is used in this
thesis to interpret the participants’ experiences of social expectations both inside and outside
of care in order to navigate different ways its accessibility is shaped. Similar to other forms of
discourse analysis, Foucauldian discourse analysis (FDA) focuses on how language functions
a space for discursive practices. FDA becomes useful for this thesis thanks to the focus on
how discursive resources become available in society and within institutions (Willig
2013:130). Discursive resources can be understood as the availability of different subject
positions as well as language within a society or specific setting. More specifically, this form
of discourse analysis acknowledges institutional practices, in which discourses and
institutions simultaneously establish each other and the discursive resources that become
available (ibid.). The attention to institutional practices that FDA enables becomes a useful
tool in understanding how discourses are established and maintained within and surrounding
the clinical space. It is also useful for making visible ways in which the care seeker is
30
positioned in the clinical discourse, and how actions and agency become enabled depending
on the accessible subject positions. The analysis pays attention to both dominant discourses,
which may be understood as “common sense” or the normative, as well as counter-discourses
that appear in relation to the dominant discourse and which also has a formative impact of the
discursive object (ibid:130).
One aspect of FDA which will be difficult to address if looking simply at the data is the
historicity of discourses, which for this form of analysis is one of the foundational aspects.
The terminology of trans health and previous research that has covered the topic creates a
foundation for how the data correlates to other material concerned with the clinical discourses
established around trans and nonbinary bodies. FDA is, according to Willig’s (2013)
approach to the method, constructed through different stages of coding and approaches to the
material. Initially, FDA centres the discursive object and how it is constructed in the text,
both explicitly and implicitly. To do this, the material is coded with a focus on the discursive
object in question. Secondly, the analysis makes space for how the discursive object is
constructed differently throughout the text, with various forms of discursive constructions. As
FDA is interested in action orientations and analysing why participants for example choose
certain words, it does not to that extent become relevant for my research aim as I am more
interested in the discourses per se. Therefore, I have chosen to focus on the aspects of FDA
which become relevant for directing the view more to the discourses than to what motivates
the participants in their word choice. The terms introduced by FDA can therefore be regarded
as focus points and directives for what the thematically structured analysis will study.
5.3 Limitations
When conducting the research for this thesis, I had to take into account several forms of
limitations. In the initial stage of writing, my intention was to include interviews also with
practitioners within eating disorder care in order to see how discourses become apparent in
their narratives of their work. However, after thinking it through several times, I landed in
only focusing on a care seeker perspective. This is not to say that one needs to exclude the
other – both perspectives are of importance in order to make visible how norms affect the
possibility to seek and the possibility to provide adequate care. Nonetheless, I concluded to
make this particular study a space for the care seeker perspective, as I found that the limited
space would risk making the material difficult to follow otherwise. I thereby landed in
31
centering trans and nonbinary perspectives on treatment, as those are the ones affected by it.
This at the same time turns the gaze partly toward caregivers as their encounters are a crucial
part of the material.
As can be seen in the literature review, previous research calls for an interdisciplinary
understanding of eating disorders and how it co-exists in different sectors of care. Hence, my
initial aim was to include experiences both of eating disorder treatment as well as how eating
disorders are approached in trans specific healthcare. However, I soon realised that this could
risk both making the purpose of the study confusing when searching for participants, as well
as a field too exhaustive to cover for the space of this thesis. I therefore landed in grounding
the thesis in a main focus on eating disorder treatment and letting the possible connections to
trans specific and other forms of care take place in the study if addressed by the participants.
As a qualitative study, the aim has never been to present a fully representative result which
can be seen as all-encompassing for encounters with eating disorder treatment. However, the
initial expectation was to get more respondents to interview. The reason for why I have not
been able to find more participants can be several. It can be a matter of my position as a
cisgender researcher or frankly as a stranger. It can depend on where I have been able to
spread the call for participants or even a matter of luck in having possible respondents
spotting the announcement. The limited number of participants is important to address, as this
study does not cover all available experiences on the topic. On the other hand, this limitation
also becomes a possibility of going more in depth with the gathered material and thereby
giving more space to the narratives at hand. This can also be a strength, as a lot of the
nuances and complexities of the material otherwise could have been lost due to space
limitation.
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6. Methodology and ethical considerations
The conduction of this research requires a range of methodological considerations. Here, I
will discuss my position as a researcher and the emotions that take space in this research. I
will focus more closely on my positionality as a cisgender researcher, based on a historical
understanding of what that position entails. Last is a discussion on the uses of trans narratives
in research and what needs to be taken into consideration when conducting these types of
studies.
6.1 Positionality and emotions
Rather than idealising an insider nor outsider research perspective, Davis & Craven (2016)
highlight the importance of positionality and reflexivity. Practising this entails being clear
about one’s identity as a researcher as well as relation to the community being researched. It
is hence possible that the researcher is positioned as both inside and outside depending on
context (ibid:61). The objective of feminist research is therefore not to determine an ideal
position, but rather to regard the possibilities and limitations of one’s position in the specific
research context. Making an assumption that a researcher is positioned as fully equal if they
identify with the group being studied would eliminate, according to the authors, the aspects of
power and status that come with being a researcher (Davis & Craven 2016). To consider the
functions of being positioned as both inside and outside the research topic is thereby relevant
when understanding my position in this thesis. I come into this research with experiences of
eating disorders as well as having participated in eating disorder treatment several years ago.
Hence, this to some extent gives me an understanding of some of the experiences that me and
the participants possibly share. This also gives me an emotional connection to the subject,
which possibly affects my objectives in the research. However, my personal understanding of
what an eating disorder is, and how the care works, may be completely different from those
of the participants. Having experiences of eating disorders myself does not give me a
thorough understanding of the intersecting experience of being trans or nonbinary with an
eating disorder. Viewing the subject through an intersectional lens, my position as cisgender
intersects with my experience of eating disorders in a specific way that may both resemble
and differ from the research participants.
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6.2 A cisnormative history of research
It has been essential in the process of writing this thesis to consider my position as there are
numerous factors to consider when researching trans and nonbinary communities as a
cisgender researcher. It is important to raise awareness to the “overrepresentation of
cisgender researchers” in trans related fields of research, where traditionally, trans individuals
have been positioned as participants rather than researchers (Galupo 2017:241). Hence, even
though the objective of this research is to centre the participants’ perspectives, it is still I as a
researcher that makes the analysis and conclusions. Further, in an academic culture that
glorifies objectivity, studying transgender experiences as a cisgender researcher may be
interpreted as coming into the field with an “objective” view (ibid.). This is, as feminist
research tradition continuously stress, a misleading and impossible interpretation (Davis &
Craven 2016). According to Galupo (2017), being cis will affect many aspects of one’s
research. For example, it will affect how one constructs interview questions, to what extent
participants will feel comfortable in sharing experiences or whether readers will interpret
one’s work negatively or positively. It is therefore crucial that cisgender researchers actively
acknowledge their “cis-ness” in order to make visible the existence of cisnormativity in
academia and how it impacts research, both historically and today (ibid:241).
As Vincent (2018:104) points out, a large part of the research that has been done on
transgender populations has been based in the clinical field. Rather than structuring it around
the needs of trans and nonbinary people, medical research has a history of pathologizing
transgender identities and using participants’ experiences to validate one’s own theories.
Countering this practise could thereby be to focus on the participants’ perspectives and what
they say rather than using them in order to fit an idea of making a theoretical point. Another
key aspect to conducting research is transparency with one’s position and objectives as a
researcher, which is important in order for the participant to decide whether they are
comfortable in taking part of the study or not (ibid:105). It was thus important to share with
participants at an early stage that I identify as cisgender in order to not create any confusion
regarding my position. I also shared that I have experiences of eating disorders myself and
have sought eating disorder treatment earlier in life, since this is important for the participants
to know in order to decide whether they feel comfortable or not in sharing their experiences.
Something that I have considered is however how the topic of the study contributes to a
continuing association between trans and nonbinary individuals and the medical field or
34
forms of illness. At the same time, as the literature review has shown, the lack in previous
research of acknowledging trans and nonbinary perspectives on eating disorder treatment
gives the topic relevance in order to highlight a gap.
It is not only through medical research and discourse that a contestable use of and approach
to trans individuals has been apparent. The usage of trans narratives also within feminist
studies, as exemplified by Raun (2014) with a focus on queer theory, is worth to criticise.
Raun (2014) points out that the pathologizing view on trans, which generally is believed to be
outdated, does still prevail in feminist and queer research. As an example, trans narratives are
prioritised and celebrated in queer research when they can be used as representations of
“transgression” or “ambivalence” with the aim of proving a point about for example
cisnormativity (ibid:24). This use of narratives then tends to be conducted in the favour of the
researcher’s own theoretical interest rather than adhering to the needs and agency of the
participants. What happens then is that trans experiences are valued as a resource for norm
critique, and devalued when they appear to be in line with the normative that the queer
theorist in question attempts to critique.
These reflections encourage me as a researcher to once again ask why I am doing this study
and to what purpose. One importance in conducting research is to follow the complexities of
the narratives rather than only thematising based on what seems useful for a personal purpose
and idea of where the results should be heading. I can relate to the initial expectation
described by Raun (2014) on the research to be a space of critiquing for example
cisnormativity and highlighting ambivalence. However, ambivalence and cisnormativity are
themes that have undoubtedly become apparent and relevant in the data of analysis when
following the lines of the participants’ stories. What is important then to also acknowledge is
when findings that differ from what I expected appear. Though the data as will be shown
highlights destructive norms and critique to the treatment, there has also been accounts for
positive experiences and situations that relate to cisgender perspectives too. This kind of data
is thereby of equal importance to highlight.
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7. Analysis of the material
The data of analysis consists of quotes and abstracts from the four interviews. The four
participants have been anonymised and given fictional names. The participants were asked
about their identification and pronouns and if the participants used several pronouns, they
were asked which one they preferred being used in the thesis.
Morgan identifies as nonbinary and uses the pronoun she.
Nino identifies as nonbinary and gender fluid and uses the pronoun they.
Liam identifies as a transman and uses the pronoun him.
Juno identifies as nonbinary and uses the pronoun they.
The material has been divided into four themes. Barriers in the care seeking process is an
initial investment with practical as well as emotional barriers for seeking care. Ideas of the
body accounts more deeply for norms of body and health that exist within as well as outside
care. In The stress and the eating disorder, the minority stress model is more thoroughly
applied to the material in order to view the functions of different stressors. Lastly, in A space
for comorbidity, the theme is the correlations of the eating disorder with other aspects of the
individual and how these are given space in standardised methods. The main themes have
further been divided into several subthemes based on the interactions and diversity of the
material. The themes have been decided considering the coherency of the data as well as to
account for the discursive practices that become apparent. Throughout the analysis, theory
and previous research will come into a dialogue with the material in order to draw on
similarities as well as disparities.
7.1 Barriers in the care seeking process
This first chapter of the analysis will focus on some of the foundational barriers that were
described in relation to the care seeking process in itself. Apart from practical barriers, these
will also include the effects of normative embodiments of eating disorders as well as the
shame attached to the illness.
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7.1.1 Waiting and shame
To begin with, the participants discussed general barriers that can be regarded as affecting not
only trans and nonbinary care seekers specifically. All four participants have partaken in
specialised eating disorder treatment. Therefore, they share no experience of not getting
accepted at all. However, they do mention several barriers that exist in general for applying,
which makes the process of seeking care more difficult. Nino believes that previous
experiences of care become a legitimising factor in the application process.
Since I had a history of eating disorders from before, it went very fast. I came
in contact with them immediately [...] There were barriers for others, but not
for me. (Nino)
Nino describes that they know others that have had difficulties in getting accepted at all into
eating disorder treatment, even after having applied several times. For them, they think that
their history affected the waiting time, making them immediately regarded as eligible for
treatment. Waiting times are also addressed by Liam as affecting the treatment’s accessibility.
I would not say that [the eating disorder treatment] is less accessible for trans
and nonbinary persons than for cis persons, but it feels very inaccessible in
general. There is not much information and it is difficult to get in contact or
even know where to turn. (Liam)
Liam describes some of the general barriers that exist in the care seeking process. He further
explains that the long waiting times became a barrier in his process as he had to wait for over
a year before getting his first appointment after having been referred to the treatment. That
there is a long waiting time for beginning with the treatment is something that the national
organisation Frisk & Fri (Levallius 2023) also has addressed as one of the main barriers that
care seekers have pointed to. This barrier thereby applies to all care seekers and does not,
from what can be found in the data, differ in a specific way for trans and nonbinary care
seekers. However, the nature of the eating disorder itself can function as another barrier for
seeking care. Juno did not experience any practical barrier for seeking care as they were
remitted by a psychiatrist. However, they tell of the difficulty in viewing themself as having
an eating disorder before their psychiatrist made it apparent for them.
37
Then they had already found me out, so to say. I mean, an eating disorder is
something you keep secret to the extent that you lie to yourself. To keep hold
of the control I believed to have. So I would probably not have sought on my
own initiative if no one had told me. (Juno)
Before Juno was remitted to specialised treatment, the eating disorder made itself invisible
and was something they thereby had been able to keep secret for several years. Partly, the
dependence on secrecy can be understood as a common function for the eating disorder in
itself. As Juno and also other participants name, the eating disorder creates a sense of control
which makes it difficult to let go. Secondly, the secrecy is further enabled by the societal
discourse of eating disorders as shameful. To further quote Juno:
It is after all society which makes you sick in a way. Then it is also society
which prevents one from seeking care. (Juno)
The eating disorder per se thrives on keeping itself secret to the affected individual as well as
its surroundings. As Juno addresses, it is society that enables that secrecy. The stigmatisation
of talking about eating disorders is something that they further describe as a “mind your own
business” attitude. Eating disorders are not understood, according to Juno, as a serious illness
outside of care but as something one “does to get attention”. Hence, the eating disorder is
made invisible in a societal discourse where there is a stigma attached to it. That society both
makes one sick and prevents one from seeking care mirrors a biopolitical regulation where
the norm signifies eating disorders as shameful – and therefore should be kept to oneself
(Foucault 1978). To quote also Morgan; “we live in an eating disordered society”, where a
fixation with the body is the norm which also makes it well integrated into the everyday life.
As in Juno’s case, the social stigmatisation of eating disorders makes the illness invisible also
for the affected individual. To acknowledge an eating disorder has in the societal discourse
been made into something shameful, resulting in the covering of the illness from others as
well as oneself. As in Ahmed’s (2014) conceptualisation of shame, the eating disorder thrives
on cover and detests exposure. The “mind your own business” attitude signals that the eating
disorder needs to be covered from others in the affected individual’s surrounding. As a result,
the internalisation and hiding away of the eating disorder makes it more difficult to uncover.
38
Though the shame of acknowledging eating disorders is upheld by society, it further makes
itself apparent within care as well. This can be seen in Liam’s experience of seeking
treatment in primary care.
The way that primary care treats people with eating disorders is the biggest
barrier I have experienced. The subject is often very shameful and when I have
sought help on my own initiative it has been because I’ve felt worse in it than I
can handle. To then not be taken seriously has made me not able to fight for the
care that I have needed (Liam)
Also Liam mentions that eating disorders are positioned as shameful, which in itself becomes
a barrier for addressing the issue also in healthcare. The stigma for Liam was deepened as he
sought help in primary care for his eating disorder. To not be taken seriously when seeking
care becomes a discouragement for reapplying. Seeking care or in other ways addressing the
eating disorder becomes a practice of openness where others’ interpretations “press against”
the individual (Ahmed 2014:69). Consequently, as these interpretations do not trust the
individual as having an eating disorder, a doubt is established on the care seeker’s legibility.
As an effect, the discouragement from the clinical practice triggers a “re-covering” of the
shameful object which creates a further feeling of shame (ibid:104). These interpretations and
the shame that is enabled can be understood as what makes the care seeking process a
question of fighting rather than unconditionally accessible.
7.1.2 Normative embodiments
The shame attached to eating disorders can be understood as affecting all embodiments of the
illness to some extent. To build further on the above discussion of distrust in the care seeking
process, it further becomes evident that the stigmatisation establishes itself differently
depending on a discursive understanding of normative embodiments. These norms can be
translated with FDA as the possible “subject positions” within the dominant discourse (Willig
2013). Another experience that Liam shares from seeking treatment for his eating disorder in
specifically primary care shows the practice of ascribing legibility depending on body norms.
39
They have also accused me of using the eating disorder as an excuse for having
an overweight and that treating my relationship to food through therapy will
not fix the problem that they saw in me being overweight. (Liam)
The way that the caregiver distrusts Liam’s legitimacy in having an eating disorder makes
visible a norm regarding eating disorders and body shape or weight. As the disorder becomes
questioned due to weight, a weight stigma becomes visible (Harrop et al. 2023). In this
situation, the normative embodiments of eating disorders do not account for bodies that are
over a certain weight. Instead, the focus is shifted to what the caregiver themself deems to be
a problem which overlooks the actual needs of the care seeker. Here, the caregiver’s practice
of weight stigma becomes a clear example of the clinical gaze (Foucault 1973). The gaze of
the clinician is affected by – and thereby further establishes – a normative conception of what
bodies are regarded to possibly be affected by eating disorders. Understood with Bremer
(2017), the body’s qualification into treatment becomes determined by its embodiment. The
clinical gaze of the caregiver therefore has the power of positioning especially thin bodies as
legitimate, hence determining the available subject positions within the clinical setting. This
has consequences as caregivers in primary healthcare have the possibility to refer clients to a
specialised clinic or in other ways move forward with providing treatment (Repka & Repka
2013). That there is a blockage in that stage of treatment establishes a barrier for accessing
further forms of care.
In addition to weight, another normative embodiment of eating disorders is the feminine
body; or more specifically, the young, feminine body. Several of the participants name that
the eating disorder treatment becomes less accessible due to the normative expectation on
specifically girls to be there. When being asked about whether eating disorder treatment is
accessible for trans and nonbinary individuals, Nino answers:
No, I would not say that it is, because I experienced it as very focused on that
girls were supposed to be there. (Nino)
As Nino addresses, there is an expectation within the eating disorder treatment on the bodies
accessing its space. Within this space, there prevails as also previous research shows a
feminine norm (Hartman-Munick et al. 2021). Juno describes the same norm as existing also
40
outside care, where the invisibility of bodies that are older than the normative becomes an
additional level of stigma.
One does not dare to talk about it today [...] It is like everybody with an eating
disorder are thirteen year old girls, you do not think that someone over thirty
has that diagnosis. (Juno)
To be older than the norm has for Juno contributed to enable the secrecy of the eating
disorder. That no one expected them to have an eating disorder made it easier for the illness
to further establish its secrecy both for their surroundings and for Juno themself. Not only is
the eating disorder in itself shameful. The expectations on affected bodies to be thin, feminine
and young becomes a further covering up and stigmatisation of bodies who are outside that
norm, as they are not recognised as having an eating disorder at all (Ahmed 2014). This
attachment of shame may as an effect trigger concealment, with the eating disorder’s
dependence on secrecy becoming a source for distress (Meyer 2003). In the case that other
embodiments are not recognised socially nor clinically as being affected, the possibility for
those bodies to be acknowledged also by themselves as having an illness becomes limited.
Based on normative embodiments of eating disorders, the discursive resources and possible
subject positionings both within and outside care become negotiated by body size, gender and
age. The shame attached to an eating disorder, if understood as part of an affective economy,
is thus not inherent to the eating disorder per se but established in its relation to other objects
or bodies (Ahmed 2014). The shame thereby interacts with discursive understandings of how
an eating disorder can be embodied, which creates a form of disciplining into a societal as
well as clinical norm (Foucault 1978). This practice creates a foundational barrier for taking
the step of seeking eating disorder treatment in the first place.
7.2 Ideas of the body
Continuing on the above discussion of normative embodiments, this theme will explore a
range of norms regarding the body’s shape and functions. These norms are put in motion both
within and outside care and can together be understood as foundational for how the eating
disorder interacts with identity, ideals and expectations. The material makes it obvious that
one part in understanding how eating disorder treatment can become more accessible is to
41
consider how norms and expectations on the body have effect on the eating disorder itself as
well as the clinical approach to it.
7.2.1 The risky body
The societal expectations on the body and its shape can be understood as part of what triggers
the eating disorder, as well as what makes it invisible. Both Morgan and Liam discuss ways
in which thinness functions as a societal norm. Morgan names this norm a form of privilege.
As a child and teenager, I got compliments for being skinny. And when I then
entered puberty, I was afraid to lose this – I don’t know if I should call it
thinness privilege. I did not understand it then, but that was also when my body
was the most androgyne. (Morgan)
As Morgan exemplifies, thinness is discursively established as a privilege in two dimensions.
Firstly, it has been repeatedly applauded by her surroundings, thereby making thinness per se
rewarding. Secondly, which will be further discussed in the next subtheme, thinness also has
the function of signifying the body as androgyne. If beginning with the first aspect of thinness
as an applauded norm, this is also something that is addressed by Liam.
I have often felt that [the eating disorder] is not taken seriously since I’m not
underweight. When I have lost weight, I have basically only received praise
and that people applaud it, even though I have been open with that it’s been
due to illness and dysphoria. (Liam)
Liam expresses that his eating disorder has not been taken seriously by his surroundings due
to his weight. Even when he himself has addressed the connections to illness and dysphoria, a
thinness privilege makes itself apparent as the main focus for his surroundings is positive
affirmations of weight loss. Hence, even when weight loss explicitly is addressed as
connected to distress, it is still socially commended as the norm. The societal discourse
thereby establishes thinness as the norm over which a responsibility is distributed (Foucault
1978). As health has become a responsibility, the norms of healthiness affect the societal
supervision of what is deemed to be healthy bodies. Thinness can thereby be understood as
the norm before which society feels a form of duty in affirming and regulating bodies after.
42
Understood further, as the responsibility for health has moved from the professional realm
into the individual through biomedicalization, the opposite to the risky body appears in the
societal discourse to be the thin one (Clarke et al. 2003). Thereby, bodies that are not thin are
pushed into aligning with the norm, or the “standard model”, even if that norm has unhealthy
consequences (ibid:172). The establishment of certain bodies as risky resonates with the
affective economies of fear (Ahmed 2014). In the circulation of emotion, certain bodies are
deemed fearsome, which consequently establishes them as risky. Within this counter-relation,
the risky body has to be surveilled and the normative has to be desired. What then becomes a
paradox is how the discourse of thinness and norms of the risky body translates into
accessing eating disorder treatment. As Liam exemplified earlier regarding his experience of
being mistrusted in primary care due to his weight, it becomes visible that thinness has an
authenticating effect. Not only is thinness socially affirmed and applauded – it can also give
certain bodies more access to treatment than others (Paine 2021; Harrop et al. 2023). Within
this discourse, overweight is positioned as risky; but not in the sense of being in risk of an
eating disorder.
As has been discussed throughout the analysis so far, there are dominant discourses that
connect eating disorders specifically to thinness. The consequence thus is that fat
embodiments of eating disorders become disregarded. With regard to what bodies are deemed
as risky or safe, thinness thereby enables both positions depending on context.
7.2.2 The body identified
To build on the discussion above, body shape also becomes a defining aspect in self
identification as the shape of the body has a (de)gendering function. Morgan further describes
how thinness functions as a signifier for an androgynous identity.
When [the body] is as it should be according to my constitution, I have
experienced it as too feminine. That is what causes and triggers gender
dysphoria for me. In a way, it’s like I’m losing my androgyny which after all is
important for me […] Then there is the problem that androgyny for me is
connected to thinness too. (Morgan)
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The constitution of the body can, as Morgan describes, become a trigger for gender
dysphoria. Weight gain thereby results not only in a possible loss of thinness privilege, but
perhaps more importantly a loss of identity. Gender identity becomes strongly connected to
physical presentation, with a curvy constitution being normatively assigned as feminine
(Cusack & Galupo 2021). This means that part of what make identities intelligible are the
norms assigned to those identifications. The normative association with thinness hence
becomes a problem when it is experienced as the only available position for presenting as
androgyne. For Morgan, the experience of the eating disorder treatment was thus riven with
an ambivalence as regaining weight implied for her a loss of androgyny. It is important to
note here, which Morgan herself addresses, that the destructiveness of the eating disorder
itself is not to be dismissed. However, it becomes essential to highlight, in order to make the
care effective, an attention to the ambivalence that may arise in the recovering process. The
idea of accepting the “normal” based on the body constitution in this process can become
dismissive to care seekers who are not at ease with that constitution (Duffy, Henkel &
Earnshaw 2016; Hartman-Munick et al. 2021). What Morgan exemplifies is the importance
of finding ways of being in the body – without the eating disorder – that at the same time
become affirming of identity.
The normative association between thinness and androgyny is supported in previous research
and as has been discussed, the societal or personal expectations on affirming these norms in
order to pass become possible triggers for weight loss (Cusack, Iampieri & Galupo 2022;
Zamantakis & Lackey 2021). The aspect of passing is something that Liam names as a
common foundation for the eating disorder that treatment needs to take into consideration to a
greater extent.
It would probably have been good if there was a more specialised therapy or
treatment for trans persons with eating disorders since the problem in many
way lies in that one does not pass in society, or the feeling that others expect
one to be passing (Liam)
The gendering function of body shape interacts with the possibility to find comfort in the
body and aligning with identity instead of losing it. To not be passing or to be expected to
pass as a trans person, depending on for example bodily appearance, therefore becomes a
44
source for stress (Testa et. al 2015). This stress can further function as a trigger for the eating
disorder (Zamantakis & Lackey 2021).
As is addressed in other research as well, an understanding of the possible loss of identity or
the stress of passing might not be covered merely within a framework of for example body
acceptance (Donaldson et al. 2018; Hartman-Munick et al. 2022). Accepting the body
constitution does not for all care seekers function effectively as a method for finding comfort
in the body. The body constitution might instead clash with the body’s alignment with
identity and it is therefore important to note the identifying function that embodiments have.
7.2.3 The body becoming
To continue on the coexistence of body norms and health ideals, the clinical practice within
eating disorder treatment is found to be structured around as well as structuring a discourse of
the healthy body. That this discourse is established together with ideas of gender becomes
exemplified in Nino’s experience. As a part of their eating disorder treatment, Nino was
required to take hormones in order to start their menstruation.
For me it was specifically this with getting menstruation that has always been
and is a huge thing. I think it is horrible and I experience that it’s been intended
that I should feel a sort of relief, that well, your body is working. And then I
have instead felt that no, it is not at all. This is not how it is supposed to
function. (Nino)
In this situation, there is a division between Nino’s perspective and the caregivers’. What
through the clinical gaze here is regarded as a definite sign of the healthy body does not take
into consideration the perspective and overall well being of the client (Foucault 1973).
Having menstruation was expected from the caregivers as becoming a form of “relief” for
Nino and a symbol for their body functioning correctly. However for Nino, that is not how
their body is supposed to function. The view on the healthy body may hence differ between
the client and the caregiver, placing them in different positions of agency. According to Nino,
their difficulties in the process with the hormones was never brought up as a discussion or
something that they had any choice or say in. Thereby, a distance was established between
them and the caregivers.
45
I experienced it like they were testing whether my body was working [...] Then
it was like yes, my body was working. And I thought it was horrible and it
resulted in me eating less or sliding into the eating disorder further. By that
little experiment. (Nino)
The dominant discourse of a functioning body is in this example, from the caregiver
perspective, the menstruating body. In the clinical view on the body, it is “working” as it
should. However, from Nino’s perspective their body became positioned as a space of
experiment which only worsened their eating disorder. The discursive understanding of the
healthy body does not, in this example, take into consideration the possible discomfort of
menstruation. Rather, menstruation is taken for granted as a source of relief as it aligns with a
discursive understanding of female embodiment. Consequently, the recovery from the eating
disorder might become limited. Nino elaborates further on the lack of understanding for their
discomfort.
There is no one who has connected it to gender identity. Rather, if I have
expressed that I think it is troublesome with menstruation, I have been told:
“but that is something you have to cope with as a woman”. (Nino)
As Nino addresses, their discomfort with the hormone treatment was disregarded by the
caregivers as a necessity to cope with. Part of the argument presented by the caregivers was
the possibility to become pregnant, which for Nino was experienced as a foreign idea. Hence,
Nino was interpellated by the treatment as definitely female, thereby disregarding their
discomfort as something their body has to go through in a linear norm of the body becoming.
Again, here is an example of the body acceptance narrative and the way it can resonate
differently with care seekers who are not cis (Duffy, Henkel & Earnshaw 2016). The
discourses of body acceptance are in this example built on an idea of the body becoming,
which Nino elaborates on further.
I also experienced that the eating disorder treatment has been focused on
making me into a woman. I have experienced that as very, very difficult and I
have not really felt that I have been able to talk about it, or been heard. (Nino)
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The linear understanding of the body establishes a narrative of health in which the female
assigned body is expected to function in a specific way in order to move into a decided
future. The eating disorder treatment can therefore be understood as a practice of production.
Discourses of linearity connected to the gendered body adheres to a form of “streamline” into
a specific norm of how the body is supposed to function and the treatment to be carried out
(Clarke et al. 2003). Further, the care seeker perspective becomes deprioritised due to a
normative idea of gendered becoming, making the client/clinician dichotomy and the clinical
gaze apparent (Foucault 1989). What also becomes apparent in the described situation is a
clinical fixation with the binary, which disregards the possibility for “gender pluralism”
(Pearce 2018:48). The appropriate form of treatment is decided based upon a binary idea of
the healthy body that does not take into consideration the possible discomfort that comes with
that embodiment.
That Nino’s thoughts during the treatment process were not taken into consideration put the
caregivers in an elevated position of power. Circulating around a binary understanding of
gender and becoming, the clinic hence performs the power of deciding what is healthy for the
body, which might not include the care seeker perspective in the process.
7.3 The stress and the eating disorder
To build on past themes, the following chapter explores how the eating disorder correlates
with previous experiences and stress. Understood together with the minority stress model,
this sheds light on how stressors shape both the possibility to seek care as well as experiences
within care.
7.3.1 Stressors and coping strategies
Different forms of stress are shown to interact both with the possibility to seek care as well as
with the eating disorder itself. In the data, there are examples of both distal and proximal
stressors. To recap, distal stressors refer to practical events whereas proximal stressors can be
understood as internalised effects of distal events (Meyer 2003). One of the participants who
explicitly names stress as a factor interacting with the eating disorder is Liam.
I have felt strong connections between my identity and my eating disorder. A
lot of the binge eating that comes with my bulimia is triggered by the
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psychological and emotional stress of living openly as trans. (Liam)
For Liam, bulimia is a response to the stress of living openly as trans. As described in the
minority stress model by Hendricks & Testa (2012), the stress of being openly trans can be
based on distal stressors such as others’ reactions and lived experiences of discrimination.
The proximal stressors can as a consequence take form as an “internalized sense of stigma”
(ibid:462). This internalisation might thus trigger the eating disorder. To be open can have
varying effects, which is further addressed by Juno in relation to seeking care.
I think I’m open everywhere. It’s not really like I’m passing. It’s a bit difficult
to not be open [...] Some spaces are comfortable, others are not (Juno)
As Juno mentions, it can be difficult to choose to not be open. The comfort or discomfort that
is caused by that openness can also vary depending on the space. Hence, openness does not
necessarily lead to stress, but it is however of essence to note it as a possibility. The stress of
being open can, if understood further with Ahmed’s (2014:69) conceptualisation of openness,
be triggered by the world “pressing” against the body. Relating to minority stress and the
discussion on the effects of disclosure, this pressing against can be difficult to counter when
the body does not pass or go by unnoticed (Testa et al. 2015). The stressor of passing might
thus affect both the eating disorder itself as well as the comfort with seeking care and
entering the space of treatment.
Similar to understanding the eating disorder as an outlet for stress, it can also be regarded as a
coping strategy. As mentioned by Meyer (2003), concealment is a common coping strategy
for stress. This can be mirrored in the eating disorder’s function as a source for control, which
as has been discussed is upheld by secrecy. Morgan describes how when she understood that
she was nonbinary, it also made her realise that the eating disorder for her was probably
functioning as a way “to cope with the stress”. Building further on this, she says:
It is pathologic and obsessive and it is not healthy. But I have not been able to
find better coping strategies (Morgan)
Even though Morgan understood the negative aspects of the eating disorder, she names that it
for her was the best coping strategy available. The eating disorder may therefore function as
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an available strategy for coping with different forms of stress when other possibilities are not
in reach. This relates also to Liam who describes this form of coping as becoming a bad
cycle.
[The eating disorder] is also strongly connected to specifically my dysphoria
since many thoughts revolve around looking more masculine and “flatter”,
which in my head has been if I lose weight. So the bad cycle of binge eating
and starvation is strongly connected to my identity (Liam)
As Liam describes, flatness becomes part of a masculine embodiment. The eating disorder
therefore has the function of making the body more in line with a masculine embodiment and
identity. Weight loss hence becomes a way to cope with the stress of the body not aligning
with identity. When the only visible option to become flatter is weight loss, the eating
disorder becomes a substitute for optional methods of achieving certain forms of
embodiments in order to be identified correctly (Cusack, Iampieri & Galupo 2022;
Donaldson et al. 2018). However, an understanding for why this control is needed is missing
in eating disorder treatment, according to Morgan.
What I have experienced as missing is knowledge about how people who are
not cis, trans in this case, use eating disorders as a way to – well actually to
control the body. To have the body conform with one’s gender identity. That
understanding is missing (Morgan)
The importance of the body conforming with gender identity gives the eating disorder a
function which is of essence for the treatment to acknowledge. Again, this function does not
signify the eating disorder as something positive. Nonetheless, to gain awareness of how
stressors might trigger the eating disorder gives the treatment the possibility to become more
applicable and understanding.
7.3.2 Identification as a responsibility
One common phenomenon that the participants speak of is how it becomes their own
responsibility to address trans or nonbinary identification themselves. Hence, language use
comes to play an essential part in the applicability of the treatment and the energy required to
49
access its space (Lefevor et al. 2019). For Morgan, alternatives to cisgender identification
were not available when she sought treatment.
I still identified as a cis woman when I participated in eating disorder
treatment, even though I never had been comfortable with it. That was how it
was then, considering that I was assigned female at birth, I am okay with being
addressed as she… in conclusion, I am a cis woman. (Morgan)
Morgan did not address questions of androgyny and queerness when she participated in care,
which partly was due to that she still identified as cis at that moment. However, she does
address her discomfort with that identification. Her cisness was also something that was taken
for granted by the caregivers. When being asked whether there was any room for her to
identify as nonbinary in the care setting, Morgan answers:
It is difficult to say, because when I was ill in anorexia, the mind was not fully
present [...] I did not have the energy to give any thought to it. Rather it was
about trying to survive. (Morgan)
Here, the treatment process again becomes a space dependent on the distribution of energy. In
this context, it is more specifically the energy to bring up questions of identification or to
“come out” for the caregivers (Lefevor et al. 2019:387). As cisgender identification is taken
for granted, the treatment space aligns with a discourse of cisgenderism in which it becomes
the responsibility of the client to address alternative ways of identification (Berger & Ansara
2021). When cisness is taken for granted by the clinic, there is established a form of
“nonaffirmation” that fails to make space for identifications other than cisgender (Testa et al.
2015:66). A limited language use is therefore a factor that may restrict the possible subject
positions within the discursive space of treatment. This is something that also Nino addresses.
Even though Nino felt during their coming of age and when being in eating disorder
treatment that they were uncomfortable with being identified as female, they describe it as
difficult to apply queerness to themself without first having the language or terms for it.
I felt that this does not work, it is just not possible. But I don’t think I had
maybe the language or terms for that one could be nonbinary until… or it had
50
existed around me for long, but I have still had difficulties with applying it to
myself (Nino)
Though there as in the case of both Nino and Morgan exists a discomfort in identifying as cis,
it becomes difficult to apply queerness to oneself when there is no available language
presented for it. The lack of inclusiveness within the language and terminology used in a
specific space thus becomes a form of stressor that establishes a barrier for disclosing or
exploring a nonbinary identity (Lefevor et al. 2019). By asking about pronouns or in other
ways explicitly showing an openness to other than cisgender identifications can thus enable
the possibility to apply those terms to oneself.
The question of language is not only oriented around how its use can function as an
introduction of terms. Language also becomes a question of making oneself understood.
Connected to Nino’s previously discussed experiences of discomfort during the treatment,
they further name how it became difficult for them to air that discomfort.
I maybe could have brought it up myself, but it was like that step felt very
difficult to take. I felt very scared in that context to address something like
that, because I was afraid that it would not be intelligible there (Nino)
Addressing both the discomfort with the normative understandings of body function as well
as questions of identification becomes a risk factor as that terminology might not be
intelligible in the context. As Lefevor et al. (2019) discuss, the risk in that kind of situation is
the possible hostility, which is why there might be a fear for addressing the topic. Connected
to Ahmed (2014), fear has the function of establishing a distance, which in this case is
established between care seeker and care giver; or even a distance to the clinical space itself.
The fear of not being intelligible that Nino describes becomes a barrier for bringing the
question of identification up. The fear is based on the possibility of rejection and the risk that
the caregivers will not be understanding. It therefore becomes a matter of evaluation for the
care seeker whether or not to address the topic, which comes with a risk being met with
disrespect. Again, a responsibility is put on the care seeker, making the possible discussion of
identity a matter of energy distribution.
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7.3.3 Previous experiences and expectations
Similar to the usage of language and its effect on creating safe spaces, one final stressor that
affects the access to treatment is the influence that previous experiences of seeking care have
on the expectations also on the care one is to receive. Discrimination within healthcare
toward trans and nonbinary individuals has in many ways become integrated or left its traces
in the clinical space (Pearce 2018). The effects of this is discussed also by the participants.
I was very scared of beginning with the treatment since I never know who
would understand or be dismissive [...] I have experienced very derogatory
treatment by doctors in primary care that have misgendered me, calling me “a
woman who thinks she is a man” (Liam)
Due to previous experiences from care, Liam had a fear of being mistreated when beginning
with the treatment for his eating disorder. He connects this to previous encounters with
primary healthcare where caregivers have used the wrong pronouns, been dismissive and
questioned the authenticity of his identity as well as his eating disorder. As Liam further
addresses, this has made him “afraid to seek help again”. The stress and fear of not being
understood is here again based on experiences of nonaffirmation (Testa et al. 2015). The
distal stressors that Liam has been affected by consequently has an impact on his expectations
on future forms of care. The distal stressors of rejection might hence create proximal stressors
in the sense that the care seeker internalises a discouragement from seeking care further due
to experiences of rejection.
If connecting again to Ahmed (2014) and affective economies, fear appears in a relationship
and is the result of a circulation. As the clinical practice has become a space of mistreatment,
the relationship between the care seeker and the space hence becomes attached with fear as
an anxiety arises upon entering it. The lack of understanding within care for trans and
nonbinary embodiments therefore makes these bodies more “sticky” to fear (ibid). Though
stickiness takes into consideration individual experiences, it is also a collective process. This
is exemplified by Juno.
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There are barriers for us in most places and the eating disorder clinic does not
really feel like an exception. Rather, there is that risk of being misgendered,
clocked – everything exists there too. (Juno)
As Juno addresses, there is always a risk for trans and nonbinary care seekers when accessing
spaces such as the clinical. Encounters with misidentification through language use are
mirrored also in Juno’s experiences of being in care settings and how they have been
identified there. At all places that they have sought care, with the exception of trans specific
healthcare, they have not been treated in a confirming way. Even though they have expressed
their preferred pronoun, the caregivers have repeatedly referred to them with the wrong
pronoun in for example their journals. This is something that conditions the care seeking
process itself.
It is one of those things that makes you feel that you do not want to seek care
for example. You have to do that evaluation, whether it is worth it or not.
(Juno)
Seeking care becomes an evaluation of whether the energy – both of having to explain
oneself and to deal with having one’s identification dismissed – is worth the effort. As the
theory of minority stress brings light to, experiences of for example nonaffirmation might
discourage care seekers from seeking future forms of treatment. The stress that is triggered by
nonaffirmation makes the care seeking process a matter of evaluation, where misrecognition
through language use affects the accessibility as well as applicability of care. The clinical
setting thereby becomes a space of negotiation (Linander et al. 2017), where the risk of being
e.g. misgendered affects the individual’s possibility to seek or be comfortable in the
treatment.
7.4 A space for comorbidity
One final theme that became central in the participants’ narratives was the interconnectedness
of the eating disorder with other needs and forms of treatment. The following examples
account for the possibilities that come with establishing the treatment as a space for
comorbidity.
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7.4.1 The hierarchisation of treatments
One primary phenomenon that becomes apparent among the participants is how the eating
disorder treatment becomes prioritised over other forms of care. This establishes a linear idea
of illnesses and treatments, where the eating disorder is required to be treated before anything
else. One first example of this is how the eating disorder both becomes intertwined with and
separated from gender dysphoria.
From the trans specific healthcare, there have been demands on me to “deal”
with [the eating disorder] before being able to continue with my trans
evaluation. They have implied that they believe I’ve imagined that I’m trans,
when in fact I “only have an eating disorder”. They have expected that my
dysphoria will be more manageable or disappear completely if I felt better with
my eating disorder, which was not the case. (Liam)
Liam was referred to eating disorder treatment as a requirement from trans specific healthcare
on him having to “deal” with the eating disorder before being eligible for gender affirming
treatment. This referral was experienced by Liam as a part of questioning the trustworthiness
of his identity, as the trans specific healthcare showed a doubt in the legitimacy of his
dysphoria. The healthcare in this situation establishes a power relation and discourse of
trustworthiness within which they question the care seeker’s credibility (Foucault 1973). This
becomes an example of how the clinic has the power to assign agency by evaluating whether
a care seeker will be accepted into trans specific healthcare or not through diagnostic
practices (Dewey & Gesbeck 2017). To an extent, the eating disorder signifies in this context
the care seeker as less intelligible as trans as it is believed that the dysphoria might disappear
along with the eating disorder.
The questioning of Liam’s identity resonates with what has been written about the
gatekeeping functions in trans specific healthcare, where the caregivers have the power to
assess whether a care seeker is trans “enough” (Pearce 2018; Dewey & Gesbeck 2017). The
demand on an eating disorder treatment becomes a form of delay, which as discussed also is a
common condition for getting access to gender affirming evaluations (Linander et al. 2017;
Testa et al. 2017). It also becomes a way for the care seeker to prove their “motivation” and
seriousness of their identity (Bremer 2017:23). Here, also waiting becomes a diagnostic tool,
where the delay that the trans specific healthcare has put the care seeker in is built on an
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expectation that the waiting will result in not needing to go further with the evaluation
(Bremer 2017; Linander & Alm 2022). Placing the eating disorder treatment as a condition
for receiving other care clashes with findings regarding the decrease in eating disorder
behaviour in clients who undergo for example cross-sex hormone treatment (Jones et al.
2018). The idea of separating the eating disorder as something that one has to recover from
before being eligible for other forms of care thereby becomes counterproductive. This will be
further exemplified by Juno.
I have sometimes not been able to feel what has been body dysmorphia and
body dysphoria. I think they go so much hand in hand. It is like, the greater
dysphoria I’ve had, the greater dysmorphia – they work together. My way to
handle it has been working with both simultaneously because if I focus on one,
the other pulls down anyway. (Juno)
Similar to Liam, Juno names that it is difficult for them to separate body dysmorphia and
body dysphoria. Since the two are codependent, focusing on one over the other becomes
ineffective. Eating disorders and gender dysphoria can thereby be seen to possibly collapse
into each other. This collapse does not transform the two into one single phenomenon,
dismissing one as the other as in Liam’s case where his dysphoria was disregarded as an
eating disorder. Though gender dysphoria and eating disorders can share a relationship, that
codependence is not a necessity (Zamantakis & Lackey 2021). However, in the case that the
two are co-existing, there is a need for simultaneous instead of fragmented attention as
treating one does not solve also the other (Chaphekar et al. 2022). Body dysphoria and body
dysmorphia are not the same, but dismissing their interaction would risk making the
treatment of either less effective.
7.4.2 “Eating disorders trump everything else”
In the same way that trans specific healthcare may require clients to treat eating disorders in
order to be eligible for receiving treatment, also neurodevelopmental disorder treatment
makes the same kind of separation in Morgan’s case.
After I finished my eating disorder treatment, I went through a
neurodevelopmental disorder evaluation. The idea was that I would do it
55
before starting with the eating disorder treatment. But then it was that, well
you have to… eating disorders trump everything else. So I had to go through
[the eating disorder treatment] before I could do my evaluation. (Morgan)
Before being able to start an evaluation for her autism, Morgan was required to first seek and
partake in eating disorder treatment. This situation showcases an additional discourse of
linearity in healthcare, where the eating disorder as Morgan says “trumps everything else”.
The separation of treatments comes to have negative consequences in how effective the
eating disorder treatment becomes. Morgan experienced that the treatment methods were not
always suitable for her as a person with autism. Additionally, the caregivers did not have
knowledge of how the autism possibly interacts with the eating disorder. She names as an
example how they used enhanced cognitive behaviour therapy (CBT-E) as a therapeutic form,
which for her did not function effectively.
Even though I theoretically understand how to use these tools, it is like they
clinch a bit with the autism. It is difficult to integrate and use them in a way
that let’s me know how to handle eating disordered thoughts so that they don’t
disturb the everyday life (Morgan)
With CBT-E as an example, the methods practised within the eating disorder treatment are
adjusted to a normative understanding of effectiveness that is not necessarily adjusted to all
care seekers. Just as this has been exemplified in relation to gender identity (e.g.
Hartman-Munick et al. 2021), the treatment’s applicability for a client with autism might also
be ill adjusted. As the caregivers in Morgan’s example did not show any understanding for or
awareness of autism, the treatment could not fulfil her individual needs. In contrast then, as is
exemplified by Nino, when the treatment does become aware of the aspect of autism, it
creates a positive shift.
After [the autism diagnosis] it was like it opened up for that my eating disorder
or eating behaviour maybe is rooted in something else than the so to say desire
to be thin and pretty. And then I experienced it as perhaps a relief. Because
then it was like the conversation became something different (Nino)
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During their eating disorder treatment, Nino was referred to an external specialist on autism.
After the aspect of autism came into the evaluation, Nino experienced a relief in that the staff
gained an understanding of the eating disorder being rooted in something other than a
normative desire of beauty and thinness. As is a addressed here as well as in previous
research, a desire for thinness is not a necessary foundation for an eating disorder (Cusack &
Galupo 2021). The autism diagnosis hence enabled a positive shift in the clinical approach
and to an extent, it established a bridge between care seeker and care giver. Coming in as a
form of counter-discourse (Willig 2013) into the dominant practice within eating disorder
treatment, the autism diagnosis functions as a form of key for how the care can act
differently.
At the same time as enabling a positive shift, these examples also points to a codependency
between professions in directing the focus to what needs to be considered in the treatment.
The dependency on referrals mirrors the hierarchisation of the clinical gaze and contains to an
extent the dominant power positions in care (Foucault 1973). As Nino further comments, “a
paper on gender identity” could perhaps also have affected the treatment, meaning that the
impact that other professions have can shift the approach within eating disorder treatment on
several levels. Hence, an intersectional approach is not integrated in the treatment. In sum,
the needs or identifications that are different than the “standard models” (Clarke et al. 2003)
of treatment are not taken into consideration before being named explicitly. This naming may
also have greater impact when coming from another healthcare instance.
7.4.3 Practical standardisation
The separation of different excellences bridges into a deeper investment with the
standardisation of methods within eating disorder treatment. When the methods of treatment
follow a normative idea of how an eating disorder should be treated, the individual
perspective and needs might be overlooked (Hartman-Munick et al. 2021; Duffy, Henkel &
Earnshaw 2016). The dominance of a practical focus within the eating disorder treatment is
discussed throughout the data as a contrast to an emotional one. For the participants, there are
varying experiences of how well the practical methods of treatment worked for them. Liam
was helped through the eating disorder treatment in establishing eating routines and he names
the positive impact of regularity, which helped in countering a destructive behaviour. For
Juno as well, the methods during their treatment worked well and they express that they
57
gained tools for dealing with the eating disorder. As a contrast, Morgan on the other hand
experienced the practicality of care as standardised and not adjusted to individual needs.
There was much focus on behaviour, my actions. What it is that I’m doing and
what consequences it gets. It was very “if A then B”. We did not really look at
the primary cause, the motivations to why I continued this. (Morgan)
Morgan was helped to some extent with gaining awareness of her thinking patterns by the
treatment. However, she never got to the foundations and the motivations behind the illness.
She describes the treatment as focusing more on practical aspects related to eating habits than
on the emotional level. For Nino as well, it was difficult to move forward in their treatment
and to find motivations due to the practical methods that were used.
When I was really ill, I just needed someone to prepare food for me, but I’ve
had a very hard time taking in any further treatment. The eating disorder
treatment had very clear methods for how one should learn to eat. I felt that
they didn’t work for me, they didn’t motivate me at all. They just made me sad
and frustrated. (Nino)
To some extent, the practical methods of the treatment were helpful for Nino when they
needed to fulfil a basic need. To further integrate the methods within treatment was however
experienced as more difficult. As is described, the treatment’s dependence on decided
methods mirrors the idea of a “rational language” within treatment which is founded on the
belief of objectivity and universality of treatments (Foucault 1973:xiv). Additionally, to air
frustration toward the practised methods was for Nino met negatively.
Now this is my formulation, but I experienced that I felt like a customer that
was dissatisfied and they were like “okay, well if you do not want what we are
offering you, then you can buy something else”. So it felt like there was no
willingness to try something different or to find something that worked (Nino)
Nino describes the experience of airing critique as being met as a dissatisfied customer who
should buy something else rather than the care adjusting to their needs. As they further
explain it, Nino experienced it like an accusation of not wanting to get healthy. Health, and
58
what it means to be healthy, is here positioned as something which the individual should
strive to achieve in line with the standardised methods. Resonating also with the discourse of
biomedicalization, this positions the client as a form of consumer with a responsibility to act
in line with standard models (Clarke et al. 2003). This again creates a separation of the care
seeker and caregiver, as the clinical methods become an object of consumption for the client
rather than conditioned after their individual needs. If a client then does not adhere to the
treatment, it in that discourse means that they do not want to get healthy.
In both Morgan and Nino’s examples, the standardisation of treatment methods within the
care became a barrier for getting to the foundations and the emotional aspects of their eating
disorders, which could have provided a more effective source of motivation. The practical
focus in care that is problematised in the data resonates with the findings of Frisk & Fri
(Levallius 2023) where a commonly addressed issue is the dominance of a practical focus
rather than an emotional one in Swedish eating disorder treatment. As individual needs do not
fit into the standardised framework of healthcare, they may become dismissed as not adhering
to a willingness to be healthy.
7.4.4 An emotional and inclusive focus
The practical and standardised methods within eating disorder treatment, along with the
separation from other forms of care, risk establishing a distance between the client and the
caregiver as well as offering ill adapted forms of care. Therefore, a positive shift would be a
more emotional and inclusive focus. As positive experiences, both Juno and Liam names the
possibility to talk and being listened to as central practices of affirmation within treatment.
For Juno, though the treatment as a whole has not been able to treat them in a confirming
way, they name positive experiences with their assigned therapist. They describe that even
though she did not fully understand what it means to be trans, the therapist made an effort to
try to understand, hence showing a willingness to listen. The practice of respect and effort
rather than declining perspectives that were new or difficult for the care giver to understand
made a difference also in making Liam’s experiences more positive.
They have used the correct pronoun and have been understanding about the
sensitivity of talking about the body. They have also been very good at asking
in a respectful way about anything having to do with trans specific healthcare
or how it is to be trans that they don’t have knowledge of. (Liam)
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In these positive experiences, there is a shift in the power positionings where the client is
listened to rather than merely supervised, which becomes a contrast to the dominant,
biopolitical discourse (Foucault 1973; 1978). By showing respect through inclusive language
and centering the client’s perspective as important to understand, there is enabled a space for
identification as well as the possibility to proceed with effective treatment. Further, as
“thwarted belongingness” can be a source for minority stress, the practice of recognition and
support within treatment can as a contrast enable a form of relief and feeling of belonging
(Hendricks & Testa 2012:464). Nonetheless, though the treatment has been supportive in his
case, Liam mentions that trans related connections were something that he made mainly on
his own. Therefore, an improvement of the treatment could be a more thorough integration of
different forms of support.
Even though I feel much better after the treatment, the situation with the dysphoria
has not changed and will not do so in a long time due to the trans specific healthcare
being as it is – slow and mentally draining. If there would have been a place where
one could be supported in one’s dysphoria with a focus on eating disorders that come
with it, it would probably have helped me a lot. (Liam)
The eating disorder treatment has been helpful for Liam, but the situation with dysphoria has
for him not changed. He neither expects it to do so in a close future due to the slowness of
trans specific healthcare, which as has been discussed is a common condition for receiving
treatment (Bremer 2017; Linander & Alm 2022). Therefore, a greater support in also gender
dysphoria would be a needed approach in eating disorder treatment in order for clients to
achieve greater health on more than one level. Though trans specific healthcare and eating
disorder treatment might happen in “parallel”, as recommended in the national guidelines
(The National Board of Health and Welfare 2015), this does not make them intertwined nor
sufficient in fulfilling the care seeker’s need. Hence, a more specialised unit or treatment for
clients who need care for both gender dysphoria and eating disorders would according to
Liam be effective. The importance of a greater knowledge of trans perspectives is something
that also Juno addresses.
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At least the eating disorder clinic here needs to practise how to approach trans
persons. Because I’m definitely not alone among trans persons to have an eating
disorder – rather it is something I am aware of is a quite wide problem among us
(Juno)
According to Juno, the eating disorder clinic that they went to needs to practise on how to
approach clients who are trans in order to cover for the wide spread need for receiving eating
disorder treatment. To Juno, eating disorder treatment does not differ from healthcare as a
whole, as they point to how there needs to be improvements in all sectors regarding how to
approach trans and nonbinary clients. They describe healthcare as a “hub for total ignorance
of trans persons”, which as has been discussed in several examples throughout the data
creates a barrier for even making the choice to seek care. Thereby, a greater level of
affirmation both within the clinical setting and outside of care of how eating disorders not
only affect cisgender individuals but is a problem also among trans and nonbinary individuals
would create a safer space for those that are affected to seek care.
In addition to the treatment gaining greater knowledge of trans and nonbinary perspectives,
what also could make the treatment more applicable is the integration rather than separation
of different forms of treatments. As has been discussed in relation to comorbidity, it is
possible to spot an interaction between different clinical instances. What seems to however be
lacking is a cooperation between them. As different forms of treatment act as separate, there
is created a fragmentation of care. As Morgan addresses:
I would have wished that there was some form of cooperation, because now it
felt more like there were different excellences. The eating disorder treatment
does not have as great knowledge of how for example, in my case, the autism
interacts with the eating disorder and how they affect each other. (Morgan)
As different forms of specialised treatments are separated, the possibility for one to take into
consideration the other is limited. As is shown in both Nino and Morgan’s examples with
autism, and Liam’s experience with gender affirming care, the medical field is divided into
different excellences rather than integrating different perspectives. For Morgan, the
separation of treatments was only making her situation with the eating disorder worse.
61
Again, the eating disorder is often used as a coping mechanism. So to be
treated in that way and to hear that “you have to recover from this first” – at
least for me it led to me wanting to act on my eating disorder thoughts even
more, as a way to protect myself (Morgan)
The requirement on Morgan to reduce and recover from her eating disorder before being
applicable for the autism evaluation treatment became a trigger for further using the eating
disorder as a coping strategy. The requirement on recovery in order to receive other forms of
care only triggers the function of the eating disorder as a space of control requiring
concealment or cover (Meyer 2003; Ahmed 2014). Hence, the separation of treatment and the
idea that the eating disorder has to be resolved before being applicable to other forms of
treatment rather becomes counterproductive. If returning to Nino and the positive shift in the
eating disorder treatment as they began to consider the aspect of autism in their practice, this
consideration does not appear to be guaranteed and integrated in the treatment per se.
Instead, it often feels like they have to be separated. That “this is your eating disorder,
it needs to leave the body. This is your gender identity, it needs to be fixed. And this is
your autism that you have to learn how to handle”. So it is like there has to be
different strategies for different parts of you. Everything is supposed to follow
different kinds of norms (Nino)
In the separation that Nino describes, the care becomes fragmented as different aspects of the
individual is approached with separate strategies. Hence, the individual becomes divided into
different parts rather than treated as a whole. As has been exemplified by all four participants,
this dividing view on the individual risks missing the intersecting and overlapping quality of
the eating disorder.
62
8. Conclusions
The aim of this thesis has been to map out discourses and norms that condition Swedish
eating disorder treatment for trans and nonbinary care seekers. These have been found both
within and outside the space of treatment. Connected to the first research question, the
accessibility and applicability of Swedish eating disorder treatment are both found to be
intertwined with previous experiences as well as approaches within the treatment.
Considering its accessibility, the main finding of this study is how emotional barriers such as
shame, fear and the impact of previous experiences affect the possibility to seek treatment.
Not only is the eating disorder in itself established as something shameful – the normative
embodiments of eating disorders create a further limitation as certain bodies become more
visible than others both in a clinical and cultural discourse. As bodies are made invisible or
mistrusted when accessing the discursive space of eating disorder treatment, the availability
of that space also becomes limited. This makes the treatment less accessible for bodies that
do not align with the normative embodiment of an eating disorder.
Also the applicability of eating disorder treatment is conditioned by normative embodiments
and standardised methods of treatment. One of the main findings of this study is the impact of
comorbidity and how greatly it affects the treatment. As both previous research and the
participants of this study bring light to, more attention needs to be directed toward
establishing a multidisciplinary link between eating disorder treatment and other forms of
care (e.g. Donaldson et al. 2018; Chaphekar et al. 2022). It is not sufficient to treat different
conditions or illnesses with separated “strategies”. This separation overlooks the interactions
of the eating disorder with other aspects that in many cases do not follow the normative lines
of traditional treatment methods. One arising question then is why this linearity and
separation has come to be. The findings of this study mirror previous research that has noted
a norm regarding the order conditions should be treated (Linander & Alm 2022; Testa et al.
2017). According to this norm, treating the eating disorder becomes a condition for receiving
other forms of care. As this study also has pointed toward in the example of accessing gender
affirming care, this clinical hierarchisation can function as part of an evaluation process.
Connected further to an autism evaluation, there prevails an idea of the eating disorder as
standing in the way for the care seeker being retentive for – or even trusted as needing – other
forms of care. This linear discourse is encouraged to be further looked into in future research,
63
as the separation of excellences greatly impacts the applicability of the eating disorder
treatment.
Returning to the second research question, the norms that become apparent in the field of
eating disorder treatment are to a large extent oriented around cisnormativity and body shape.
Femininity, youth and thinness are coexisting ideals that both inside and outside care
constitute the normative embodiment of an eating disorder. If connecting back to the lens of
Foucauldian discourse analysis (Willig 2013), the dominant discourse within treatment is
built on cisnormativity and body normativity where the subject positions become limited. The
most dominant norms that have been explored in this thesis has been those of thinness and
femininity, which both have been found to impact the possibility of being interpreted as
having an eating disorder. Further, the discursive resources within treatment become
distributed through available language use where a queer language or understanding of
identity is regarded as inaccessible or risky to approach. Finally, as a counter-discourse, an
emotional and individually adjusted treatment is called for in order to improve treatment. As
has been shown in relation to effective treatment methods, the perspective of the client can
possibly counter the dominant understanding within care of how treatment needs to proceed.
The importance of highlighting the perspectives of trans and nonbinary care seekers has been
repeatedly stressed by this study’s participants and I want to end with pointing at the
crucialness of a continuing uncovering of the gender and body norms within treatment. The
discursive fixation of the body as having to align with a normative idea of male or female
embodiment does not give space for the distress that can arise with that form of limited
embodiment. A critical focus on these norms, and the limited subject positions they entail, is
therefore crucial. As cisnormative discourses are not discussed or addressed as possibly
affecting the treatment in national guidelines nor in Swedish eating disorder research, I argue
that a fundamental aspect of the treatment’s accessibility and applicability is overlooked. It
can at first sight be difficult to spot the barriers that exist for accessing the space of eating
disorder treatment, as these might be more complex than someone saying “no” to a care
seeker entering the space. It is therefore essential to bring attention to that seeking care can
still be a question of fighting in many aspects. Not being affirmed in the prevalence of the
illness in relation to the identity one belongs to makes it difficult to reveal it for oneself as
well as gaining the energy for seeking the care one is in need of.
64
8.1 Further remarks
As additional remarks for where future research can take with, it should be noted that the
participants for this study have all been accepted to and gone through eating disorder
treatment. What this study does not cover is therefore perspectives on not getting accepted
into eating disorder treatment. How more specifically the diagnostic practices are affected by
gender and cisnormativity could therefore be a further interest for future research that might
cover aspects of accessibility that this study does not. Another take on the topic could also be
to centre the perspectives and practices of caregivers in the field. This would give an
additional angle and possibility to analyse the sources of power and discourses within
treatment to an additional extent.
As a final remark, to build on the discussion on normative embodiment, it should be of
interest for future research to invest more deeply with intersecting factors such as weight and
age in addition to gender. This study has touched upon the aspect of weight stigma and
fatness to a certain extent, but further connections to fat embodiment is a needed approach in
the field of eating disorder research, as the dominating focus within it is on thin bodies. As
this thesis has shown, a connection to autism and neurodiversity has also been of great
relevance in order to view the intersections of the eating disorder. It is therefore not enough,
as has been repeatedly stressed, to only focus on one aspect of the individual. A continuing
investment with eating disorder treatment that takes into consideration gender identity along
with other intersecting factors of the body is crucial in order to fully imagine its possibilities.
65
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Appendix 1: Interview guide (Swedish)
BAKGRUND
1. Vad är ditt pronomen?
2. På vilket eller vilka sätt vill du bli identifierad i uppsatsen?
3. Hur gammal är du?
RELATION TILL ÄTSTÖRNING
4. Om du vet, vilken typ av ätstörning är det du har eller har haft (antingen
självdefinierat eller diagnostiserat)?
5. Hur länge har du levt med en ätstörning?
RELATION TILL ÄTSTÖRNINGSVÅRD
6. På vilket eller vilka sätt har du varit i kontakt med vården - som sökande, deltagande
eller på annat sätt?
7. Om du deltog i ätstörningsvård, vilken typ av behandling fick du (terapi,
gruppsessioner, fysioterapi etc.)?
8. Hur länge pågick behandlingen?
9. Om du inte deltagit i eller sökt ätstörningsvård, finns det andra sätt som du fått stöd
för att hantera din ätstörning?
TILLGÄNGLIGHET
10. Varför valde eller övervägde du att söka till ätstörningsvården?
11. Upplever du att det finns, eller har funnits, barriärer till att söka ätstörningsvård? I
så fall, på vilket sätt?
12. Är ätstörningsvården tillgänglig för transpersoner och ickebinära, enligt dig?
72
DISKURSER
13. Har du upplevt en koppling mellan din ätstörning och (förväntningar på) din
identitet? Om du vill, utveckla gärna på vilket sätt och varifrån du upplever att
eventuella förväntningar kommer.
14. Har du upplevt att andra bemöter dig på ett visst sätt eller har förväntningar i
relation till din ätstörning baserat på din identitet?
IDENTIFIERING
15. När du sökt eller deltagit i ätstörningsvård, har du kunnat vara öppen med hur du
identifierar dig?
16. Upplever du att vården kunnat bemöta dig som trans eller ickebinär på ett
bekräftande sätt? Om du vill, beskriv gärna hur/hur inte.
BEHOV
17. På vilka sätt kunde ätstörningsvården bemöta dina behov?
18. På vilka sätt kunde ätstörningsvården inte bemöta dina behov?
19. Upplever du att vården kunnat hjälpa dig i att förstå din ätstörning? Och har
vården i sin tur visat förståelse för din ätstörning och hur den kan behandlas?
FRAMÅT
20. Har du tankar om hur ätstörningsvården skulle kunna förbättras?
21. Har du tankar om hur ätstörningsvårdens tillgänglighet för transpersoner och
ickebinära skulle kunna förändras?
AVSLUTANDE
22. Var det något speciellt du tänkte på när du anmälde dig till studien, som vi inte
pratat om?
73
23. Är det något annat du tänker på som vi inte pratat om?
24. Samtycker du till att delta i studien, och till att uppgifter om mig behandlas på det
sätt som beskrivs i informationsbrevet?
74
Appendix 2: Form of consent (Swedish)
Samtycke för deltagande i masteruppsats i Gendering Practices
Institutionen för kulturvetenskaper, Göteborgs universitet
Uppsats av Hannah Alvå
Studien du deltar i är en masteruppsats på programmet Gendering Practices vid Göteborgs
universitet. Syftet med uppsatsen är att synliggöra diskurser inom och kring
ätstörningsvården för att få en bild av dess tillgänglighet för transpersoner och ickebinära.
Intervjun kommer att ske fysiskt, via en digital plattform eller via ett skriftligt formulär.
Intervjun kommer spelas in, transkriberas och delvis eller helt översättas till engelska.
Skriftliga svar kommer också översättas och utdrag som används i uppsatsen kommer vara på
engelska. Ljudfilerna, intervjuskrifterna och formulärsvaren kommer arkiveras digitalt och
det är bara jag som har tillgång till dessa filer. Materialet kommer anonymiseras och detaljer
som gör att det går att förstå vem du är kommer tas bort.
Det är helt frivilligt att delta och du behöver inte svara på de frågor du inte vill. Du kan även
när som helst avbryta din medverkan eller höra av dig om det är inslag du inte vill ha med.
Samtycke till att delta i studien
Jag har fått muntlig eller skriftlig information om studien och har haft möjlighet att ställa
frågor. Jag får behålla den skriftliga informationen.
75