Running head: BODY-SPECIFIC GENDER DYSPHORIA

"Certain parts of my body don't belong to me":

Trans individuals' descriptions of body-specific gender dysphoria

Manuscript Accepted for Publication, Sexuality Research and Social Policy

Pulice-Farrow, L., * Cusack, C., * & Galupo, M. P. (In Press). “Certain parts of my body don’t belong to
me”: Trans individuals’ descriptions of body-specific gender dysphoria. Sexuality Research and Social
Policy.
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ABSTRACT

Gender dysphoria has historically been explained through both a clinical lens and the narrative of body

dissatisfaction. Because clinicians serve in a gatekeeping role for gender affirming medical services, trans

clients may feel the need to report symptoms consistent with diagnostic criteria. Clinicians’ accounts of

dysphoria, then, may not be the most comprehensive descriptions of gender dysphoria. The present study

aimed to understand how trans individuals describe their experience of dysphoria in relation to their body

and appearance. Using a non-clinical sample, qualitative data were collected online from 463 participants

who identified as transgender, transsexual, non-binary, or having a transgender history, and ranged in age

from 18 to 74 (M = 26.89 SD = 8.03). The sample was predominantly White (84.9%), with 15.1%

identifying as a racial or ethnic minority. Participants answered an open-ended prompt describing their

experience of body dysphoria. Three overarching themes emerged via thematic analysis: 1) Disconnection

from Body; 2) Manifestations of Distress; and 3) Changes in Dysphoria. Participants' responses clearly

disaggregated the concept of gender dysphoria by independently describing their body (Disconnection

from Body) and their distress (Manifestations of Distress). Our participants also specifically described

how their dysphoria changed over time and fluctuated in other ways (Changes in Dysphoria). The present

findings suggest that trans individuals’ experience of dysphoria is heterogeneous and highlight the ways

that lived experiences both support and extend current understandings of gender dysphoria. Discussion

focuses on the implications for current clinical practices regarding assessment and diagnosis of gender

dysphoria.

KEY WORDS: Gender Dysphoria, Gender Identity, Transgender, Qualitative

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"Certain parts of my body don't belong to me": Trans individuals' descriptions of body-specific gender

dysphoria

The present study explores the way trans1 individuals describe their experiences of gender

dysphoria specifically in relation to body and appearance. Gender identity is typically conceptualized as a

person's inherent sense of their2 own gender, and how they identify with being female, male, both, or

neither (Tate, Youssef, & Bettergarcia, 2014). The term cisgender refers to an individual who identifies

closely with their assigned sex (Tate et al., 2014), and transgender (or trans) refers to an individual who

identifies with a gender different than their assigned sex (Bilodeau & Renn, 2005). Although trans

identities have been traditionally conceptualized as binary (e.g., trans women or trans men; American

Psychiatric Association [APA], 2000), many trans people do not identify with a binary gender. There are

many trans individuals who conceptualize their gender as non-binary, and identify as a blend of genders,

vary or fluctuate among multiple genders, or do not align closely with a male or female gender (Galupo,

Pulice-Farrow, & Ramirez, 2017; Webb, Matsuno, Budge, Krishinan, & Balsam, 2015).

Gender dysphoria refers to the distress that may occur when a person’s assigned sex is different

from their felt gender identity (Priest, 2019). Historically, the clinical field has largely characterized

experiences of trans individuals via a diagnosis. Today, that diagnosis is Gender Dysphoria3, which is

understood through feelings of distress. Gender Dysphoria is defined by the Diagnostic and Statistical

Manual, 5th Edition (DSM-5), as a person’s experience of desiring the bodily characteristics of another

gender, as well as the deep belief that the individual is another gender than their assigned sex (APA,

2013). To clinicians, doctors, and others within the field, the diagnosis of Gender Dysphoria is seen as

1We use the word trans as a term inclusive of all individuals who do not identify with the sex/gender they were assigned at
birth, and to also represent individuals who do not identify as transgender but describe their transgender experience as a
status or medical history

2 We use the singular they/theirs to acknowledge non-binary identities that are expected within our sample.

3 We use Gender Dysphoria (uppercase) to refer to the diagnosis, and gender dysphoria (lower case) to refer to the
feeling, experience, or state of discomfort that is endorsed by some trans individuals.
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categorical – either a client fits the diagnostic criteria, or they do not. While experiences of trans

individuals have been primarily interrogated through this lens in the clinical literature, it is important to

note that gender dysphoria does not universally apply to all trans individuals (Bouman, de Vries, &

T’Sjoen, 2016; Byne et al., 2018; Chen et al., 2016; Drescher & Pula, 2019).

Clinical Conceptualizations of Gender Dysphoria

When Gender Dysphoric Syndrome was introduced in the early 1970’s, Fisk (1973) highlighted

that it was distressing and difficult to bear, and advocated that people needed to transition from their

assigned sex (Davy & Toze, 2018). The centrality of distress has remained consistent with the

conceptualization of gender dysphoria, as the DSM-5 specifically states that diagnosis is “associated with

clinically significant distress or impairment in . . . areas of functioning” (APA, 2013, p. 452). The

majority of the criteria focuses on the body (e.g., primary and secondary sex characteristics, such as

genitals, body and facial hair, or breasts) as a central role in the experience of distress and diagnosis

(APA, 2013). Clinicians also utilize clinical measurements of Gender Dysphoria that conceptualize

dysphoria on a continuum, and are meant to facilitate an understanding of gender dysphoria that allows

for more variability than a categorical diagnosis. Specifically, clinical scales focus mainly on bodily

attributes (e.g., what attributes a client desires vs. what they deem undesirable), and have been utilized as

a tool in helping clinicians diagnose Gender Dysphoria in clients (Cohen-Kettenis & van Goozen, 1997;

Schneider et al., 2016). However, recent research suggests that some trans individuals do not feel as

though these scales are reflective of their personal experiences of gender dysphoria (Galupo & Pulice-

Farrow, 2019).

Trans individuals’ experiences of gender dysphoria may be highlighted by feelings of distress.

This distress, coupled with feelings of body dissatisfaction, may be due in part to the desire to have the

primary or secondary sex characteristics of another gender (Feusner et al., 2016; Turan et al., 2018). This

dissatisfaction with body and appearance has led to Gender Dysphoria being conceptualized by some

scholars as a body image disorder instead of a mental health disorder (Money, 1994). However,
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experiences of body dissatisfaction in trans individuals have been linked to negative mental health

outcomes such as suicidal ideation and self-harm (Peterson, Matthews, Copps-Smith, & Conard, 2017).

Further, as experiences of body dissatisfaction and gender dysphoria are highly interrelated (Peterson et

al., 2017), feelings of dissatisfaction may be lessened with medical transition steps (e.g., cross-gender

hormones or gender affirmation surgeries; Bandini et al., 2013; Becker et al., 2016; Simbar et al., 2018;

van de Grift et al., 2016).

Clinical Conceptualizations and Personal Experience of Gender Dysphoria

Although some scholars debate whether there should be a diagnosis of Gender Dysphoria at all

(e.g., Lev, 2013; Vance Jr. et al., 2010; Zucker & Duschinsky, 2015), clinicians play an integral role in

the process of an individual obtaining access to medical transition steps (Olson, Schrager, Belzer, Simons,

& Clark, 2015). In order for an individual to have medical transition expenses covered by insurance, they

must have a formal diagnosis of Gender Dysphoria given by a mental health professional (White Hughto,

Rose, Pachankis, & Reisner, 2017). However, obtaining a diagnosis of Gender Dysphoria may be fraught

with difficulties: under the guidelines set by the World Professional Association for Transgender Health

(WPATH), it is the duty of a mental health provider to act as a ‘first contact’ with an individual seeking

medical transition steps (Coleman et al., 2012). In essence, this denotes that mental health providers

should seek to assess whether or not a client is ready and eligible for medical transition steps (Schulz,

2018). This standard complicates the role of the mental health provider, and may unintentionally place

them in a ‘gatekeeping’ role, creating difficult relationships among trans individuals and their (primarily

cisgender) clinicians, as clients may perceive clinicians as potentially blocking them from medical

transition (Collazo, Austin, & Craig, 2013). Trans clients are likely to experience therapists’ gatekeeping

efforts as microaggressions (Morris, Lindley, & Galupo, 2019) that invalidate their identity and thus harm

the therapeutic alliance (Nadal, Skolnik, & Wong, 2012).

The concept of gender dysphoria has been defined not by individuals who actively experience it,

but by the (mostly cisgender) clinicians who interact with them (Anzani, Prunas, & Sacchi, 2019), and
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may be filtered through client self-monitoring (Budge, 2015). Since clinicians have historically been

placed in gatekeeping roles, it is likely that some individuals may be reluctant to fully describe their

experience of gender dysphoria, and instead repeat clinical criteria in order to access medically necessary

transition services (Nelson, 2016; Serano, 2007). Therefore, more research outside of the clinical context

is needed in order to fully understand how gender dysphoria is experienced.

Recent research highlights the way clinical conceptualizations of gender dysphoria may be

limited. When asked to provide their subjective ratings of how well clinical scales capture their

experience of gender dysphoria, only 52.5% of the trans participants either agreed or strongly agreed that

the scales reflected their experiences of gender dysphoria (Galupo & Pulice-Farrow, 2019). These ratings

were independent of whether participants had a clinical diagnosis of Gender Dysphoria. In addition,

participants who identified as non-binary or agender were even less likely to feel as though these scales

reflected their experiences of gender dysphoria. These findings reveal the way clinical scales of gender

dysphoria have been normed on individuals with more binary identities (specifically trans women) to the

exclusion of non-binary individuals (Galupo & Pulice-Farrow, 2019).

In a recent qualitative study centering on trans individuals’ experience of gender dysphoria,

Galupo, Pulice-Farrow, & Lindley (2019) analyzed the way that gender dysphoria is experienced in a

social context. Participants described their dysphoria as being elicited by external triggers, characterized

by internal processing, and often leading to an interruption of functioning (Galupo, Pulice-Farrow, &

Lindley, 2019). This study emphasized two main findings. First, that experiences of gender dysphoria are

interpersonal in nature, and are deeply connected to the social context within which they are experienced.

Second, it emphasized that when trans individuals are asked directly about their gender dysphoria, it is

conceptualized in ways that expand upon strict clinical definitions. Thus, similar qualitative research

describing trans individuals’ experience gender dysphoria in relation to their body and appearance is also

needed.
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Statement of Purpose

The present study utilizes a convenience sample of trans individuals and focuses directly on their

descriptions of dysphoria surrounding body and appearance. While present ideas of gender dysphoria

center on the body, these conceptualizations have been filtered through cisgender clinicians’ views of

their trans clients (Anzani et al., 2019). When trans individuals have been asked directly about their

experiences of dysphoria (e.g., Galupo et al., 2019), new understandings of gender dysphoria have

emerged. Due to the historical centering on clinical conceptualizations (Anzani et al., 2019), the primary

purpose of the present study is to root our understanding of gender dysphoria in the lived experiences of

trans individuals. To do this, we take a qualitative approach in order to explore the full scope of how trans

people describe their dysphoria in relation to their body and appearance. The present analysis focuses on

addressing the following research question: How do trans individuals describe their body dysphoria?

Method

Participants

To be eligible to participate in this study, participants had to be over the age of 18, and identify as

transgender, transsexual, non-binary, or as having a transgender history. Our sample was comprised of

463 participants between the ages of 18 and 74 (M = 26.89, SD = 8.03), including 166 transfeminine

individuals, 158 transmasculine individuals, 101 non-binary individuals, and 38 agender individuals. Of

the 463 participants, 19 participants also identified as intersex. Demographics for age, assigned sex,

clinical diagnosis, and primary sexual identity across gender identity are presented in Table 1.

The present sample represents participants from the United States. The majority of participants

reported their racial identity as White (84.9%) and 15.1% identified as a racial and/or ethnic minority

(two participants declined to answer). Of the participants who identified as racial or ethnic minorities, 20

identified as biracial or multiracial, 17 as Hispanic or Latinx, 11 as another race, eight individuals as

Black/African-American and as Asian/Asian American, and four identified as an American Indian or

Alaska native. When reporting their highest level of education, 40% of our participants had a high school
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degree, 44% had a bachelor’s or associate's degree, and 15% had a graduate level or doctoral degree. A

more comprehensive view of the demographic information, including sexual orientation and socio-

economic status, is presented in Table 1.

Measures

The current study explores body-focused gender dysphoria among transgender individuals. Prior

to answering the question of focus for this study, participants answered two specific questions about their

gender identity. The first was a write-in response which accompany the qualitative quotes in the Results.

The second was a forced choice question where participants were provided four gender categories and

were asked to choose the one that best fit their experience (transfeminine, transmasculine, non-binary,

agender). These were used for describing the sample and exploring patterns across demographic

information. The most commonly used write in responses for each of the categories were as follows.

transfeminine (female, trans woman, woman), transmasculine (FtM, man, trans man), non-binary (non-

binary, genderqueer), and agender (agender, genderless). Our participants then provided demographic

information, including race, ethnicity, sexual orientation, and level of education, and answered each

question once. Participants were then asked to answer qualitative questions regarding various aspects of

their feelings of gender dysphoria. The question of interest for this study was: “Some people experience

gender dysphoria, or distress surrounding their own thoughts about their body/appearance. Please

describe a typical instance of what this kind of distress looks like for you.” This prompt was asked within

the bounds of a larger online survey, in which context for experiences of gender dysphoria was made

obvious to the participants. This survey, as well as participant responses, were written in English.

Procedure

Participants were recruited through posts on social networking sites, online message boards, and

using snowball sampling. Some of these online forums focused on topics specific to transmasculine,

transfeminine, or non-binary individuals, while others served gender and sexual minority communities

more broadly. Participants were predominantly recruited through Reddit (55.9%) and Facebook (28.1%),
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with other online venues (7.6%) being the next most frequently reported method of access. The remainder

of the participants learned about the survey through Tumblr (3.9%) and through referrals from friends

(3.9%). Although the researchers did not have established relationships with the participants prior to data

collection, they had maintained active membership on specific trans-related forums. For example,

recruitment for both Reddit and Facebook was made on specific forums and pages geared toward specific

trans populations or issues (e.g., FtM Men, Transgender Support Network, and Trans International).

Participants completed an online survey aimed to examine gender dysphoria in transgender individuals,

and initially read and signed an informed consent form. The survey took approximately 25 minutes to

complete. Our analysis focused on the responses to the prompt provided above.

Data Analysis

Thematic analysis (Braun & Clarke, 2006; 2013) was used to evaluate participants’ descriptions

of distress surrounding their experiences with body-specific gender dysphoria. Thematic analysis was

chosen as it provides a structured framework for organizing large datasets into clear themes that

accurately captures a range of experiences (Nowell, Norris, & White, 2017). In order to ensure

trustworthiness within the dataset, we used random assignment to split the sample into two subsets. The

thematic structure was developed using the first half and then confirmed on the second. This also allowed

us to both ensure that the data were fully saturated and to establish trustworthiness of the findings

(Nowell et al., 2017).

Our research team was comprised of three members: a doctoral student in Counseling Psychology

who identifies as a White queer non-binary person (first author); a master’s student in Clinical

Psychology who identifies as a White queer cisgender woman (second author); and a Biracial professor of

psychology who identifies as a bi/pansexual cisgender woman. As a team, we have varying personal

experiences around gender identity, gender expression, and gender/body dysphoria. In addition, our

collective professional experience includes both research and clinical training around gender-related

issues including gender dysphoria. Thus, we came to our coding discussions with different perspectives.
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In order to increase the rigor of our coding process, we engaged in bracketing (Tufford & Newman,

2012). At the beginning of the project and at each coding meeting we actively reflected as a group on our

potential biases on the topic and our reactions to the data.

Members of the research team initially coded the data independently while considering potential

themes of body dysphoria. The research team met to discuss salient and frequent concepts within the

dataset and agreed after meeting several times and coming to confirmation. The final thematic structure

included three overarching themes, all with sub-themes (see Table 3). Two members of the research team

(the first and second author) coded the data set into these categories. Prior to reaching consensus, the

coders had 92% inter-rater reliability with one another. The coders reached consensus via discussion with

the third/senior author serving as an external auditor. The team selected quotes that functioned as

exemplars for each of the sub-categories, and final quotes were chosen that depicted the breadth of

experiences across the dataset as well as represented a range of gender identities.

The research team made conscientious decisions during data analysis to increase the validity and

quality of our findings. Before coding, data were checked to ensure that there were no duplicate IP

addresses. Researchers coded data without having identifying or demographic information as context.

Researchers independently coded data twice. Additionally, the authors reached consensus on clear

operational definitions for subthemes by discussing themes thoroughly. Because all of the authors have

varied experiences with dysphoria, this diversity was a strength in coding and choosing themes.

Results

Thematic analysis of one open-ended prompt revealed three main themes conceptualizing

participants' thoughts and distress surrounding body dysphoria: 1) Disconnection from Body; 2)

Manifestations of Distress; and 3) Changes in Dysphoria. Table 2 illustrates the thematic structure,

including both themes and subthemes, and the percentage of the sample expressing each theme. It is

important to note that the themes are not mutually exclusive, and participants may have endorsed more
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than one theme in their response. The results are described using direct quotes from the participants, and

are accompanied by the participants’ self-identified race, gender identity label, and age.

Disconnection from Body

The first theme that participants described was the disconnection they felt from their body. This

theme was expressed in three main ways: general disconnect from body; location-specific disconnect

from body; and disconnection from masculine and feminine ideals. The theme of disconnection from body

was seen most frequently in this dataset and was reported by 69.8% of our participants.

General disconnect from body. Participants described a general disconnect from their own

bodies. This theme of disconnection was described by participants as feeling "jarring," "wrong," "off," or

"uncomfortable." Our participants described how their body dysphoria made them feel as though there

was something viscerally wrong with their bodies. One participant stated:

Best metaphor I have to describe this is it’s like looking at one of those ugly bone breaks that

leaves a limb at an unnatural angle. There’s a sense of visceral wrongness that can’t be

deconstructed. (White woman, 26)

Other participants described feeling as though their physical appearances were unfamiliar: “An aching

feeling in my chest when I see other people that look how I want to, a sense that certain body parts are

not meant to be there, a sense of disconnect from my voice and physical appearance” (White

transmasculine person, 32). Another participant described the feeling of wishing to be cisgender as a way

to name a general disconnection.

[I wish] I was a biological woman- it hurts. I don't know if this feeling of incongruence are

genetic/biological, psychological or even spiritual (a soul "trapped" in the wrong body). All I

know for sure is that this horrible feeling exists and if there was a magic sex/gender change

button I would hit it hard. (White woman, 46)

Location-specific disconnect from body. Some participants related the sense of disconnection to

a specific body part or area of their bodies. In this subtheme, our participants described a disconnect from
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these body parts, feeling as though they belonged to another person, or felt alien or wrong to touch or see.

One participant noted that they felt as though “what I see doesn't match what's in my head” (White man,

23). Another described themselves believing their genitals "were deformed (they're not, the sight and feel

of them just seemed wrong - they don't work like I expect them to)” (White man, 19).

Other participants saw this disconnect as something that was inherently wrong with their bodies

and named body parts that may have been overtly gendered (such as primary or secondary sex

characteristics).

I am mostly uncomfortable with my chest and voice. They feel inherently wrong and

embarrassing (as if it’s something to hide, something that shouldn’t be there) and I bind to avoid

my chest (way longer than suggested but deformed ribs are a con I am taking) and try to speak as

little as possible. (White non-binary person, 20)

Some participants named this disconnect as typically occurring in situations or environments that

were highly gendered, such as locker rooms or bathrooms. Gender was called into focus as a result of our

participants' body dysphoria.

When I use the men's room, I pee sitting down and it makes me feel like less of a man. I've tried

the devices made for trans men to pee standing up but they don't stay put in my pants. It makes

me feel like a "fake" man or something. (White man, 22)

Disconnection from masculine or feminine ideals. Some participants described their dysphoria

as manifesting in parts of their bodies that were typically read by others to be masculine or feminine.

These body parts were compared to stereotypical ideals of masculinity or femininity. Some participants

described how they felt as though their bodies would never reach a stereotypically masculine or feminine

ideal. One participant noted that "I get discouraged when I don't have the energy or time to put into

looking feminine and beautiful" (White non-binary feminine-spectrum transperson, 46).

Some discussions of these physical features were more generalized (e.g., height), while other

discussions described specific body parts, such as hands, ribs, eyes, and shoulders. While these specific
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body parts do not typically have gender attached to them (e.g., they are not primary or secondary sex

characteristics), our participants saw them as not being ideal for their affirmed gender. This led to concern

that the presence of these features would cause others to only see them as their assigned sex. One

participant described "feeling hopeless because I’ll never be taller than 5’2" and am very much seen as

feminine because of it" (White transmasculine person, 28). This caused our participants to feel

disconnected from their bodies. As one participant stated:

My eyes are huge, my wrists are small, my shoulders are narrow and my hips wide. The joints in

my fingers are so goddamn delicate. I can’t escape these things. My ribcage is small. It’s not

really about how these things look, entirely. Plenty of men have small ribs, or big eyes. It’s about

how those things came to be. It’s about how they mark me. (Latino transmasculine person, 23)

Manifestations of Distress

The second theme that participants used to describe their body dysphoria was through overt

descriptions of distress. Through these descriptions, participants highlighted how their body dysphoria

was affecting them physically, emotionally, and psychologically. This theme was acknowledged by

52.5% of our participants and was expressed through four subthemes: physical symptoms of distress;

emotional descriptions of distress; efforts to manage dysphoria; and managing distress through self-

harm.

Physical symptoms of distress. Physical symptoms, such as aching, panic attacks, or stomach

aches, were one way that participants noted their distress arising from their body dysphoria. This may

have been present through "skin hurt[ing]", a "sore stomach," or "genitalia and breasts feel hot." One

participant noted these feelings of physical symptoms as happening coincidentally with “panic attack[s],

appearing deep in thought, but also scared simultaneously, heightened sensory sensitivity as well as

stress sensitivity” (White agender person, 23). Another participant mentioned the way physical and

emotional connections were connected.

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Often I get sensory issues surrounding body parts (e.g., hyperfixate on the feeling of having

breasts, not necessarily the gendered connotation, and end up having trouble

breathing/focusing/etc.). (Ashkenazi man, 19)

Another participant described these physical symptoms as more of a sensation over their entire body,

noting that "When I was first transitioning it felt like a wet suit full of weight was over my whole body"

(Black female, 18).

Emotional descriptions of distress. Participants also described their distress through emotional

descriptions or reactions. One participant mentioned how their dysphoria factored into their mental health.

Physically, my eyes stop whenever they see my shoulders. My face, in particular my chin and

jawline cause me more distress, and for a while I felt like I could feel my jaw getting worse and

worse with there being nothing I could do to stop it. It's like wearing a mask made of coarse

sandpaper over my soul that just saps my ability to do anything. (White woman, 46)

Other participants echoed this sentiment, stating that their dysphoria felt like "a feeling of despair

that things will never change" (White woman, 36). Another participant acknowledged the psychological

toll that dysphoria took on their mental health. "Severe depressive episodes, strong feeling of

worthlessness, imposter syndrome and suicidal thoughts” (White man, 21).

Efforts to manage dysphoria. Our participants also described the way their distress led them to

self-impose limitations on their behavior. Some participants described an inability to leave the house or to

perform tasks that were essential to day-to-day living in order to avoid triggering or intensifying their

dysphoria.

[I] feel uncomfortable bathing because it feels, to me, like I am washing someone else's body and

someone else is washing mine, as well as never liking to see my own body because it feels wrong.

(White woman, 37)

Participants described inhibiting individual activities (e.g. daily grooming and hygiene), as well

as social interactions with others, including sexual intimacy. For instance, one participant noted "not
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being able to look at myself directly in the mirror because my body just looks wrong" (White genderfluid

woman, 20). Finally, one participant noted the impact that this type of dysphoria had on their day-to-day

routines:

Showering and dressing are particularly difficult. I understand that this is "my" body, but I can't

relate to it due to a conflict between what I expect to be there (a male body) and what I actually

have. When I shower and dress, I've got to look at and touch (and thereby feel) parts of my body

that shouldn't be there. This creates a literally nauseating dissonance that kind of throws me out

of my own head. I'm shocked by what's happening (seeing/feeling my body), because it's so far

from the(/my) truth and I don't understand how it happened. I felt the same way towards hearing

myself speak before my voice dropped--there was not a single time I wasn't surprised by the

sound of "my" voice. It's a scary feeling to /physically/ know yourself one way but for the physical

world not to reflect that. I believe my dysphoria also plays into my lack of coordination due to a

generally strained relationship to my physical body. (Jewish male-adjacent person, 33)

Managing distress through self-harm. A final way that participants acknowledged the distress

associated with their body dysphoria was through mentions of self-harm. While not all of these statements

may have alluded directly to non-suicidal self-injury, our participants consistently described desiring

forcibly removing body parts or extreme dieting. One participant described their self-harm urges as

“Silent scream tearing myself up on the inside using my nails to claw at the parts of my body that JUST

DON’T FIT. . .that's one of them. . .” (White woman, 36). Another participant saw extreme dieting as a

way to manage their distress:

Most of my dysphoria is centered around any perceived femininity in my body/face shape. It feels

like a deep disgust, that I am physically repulsed by the way I look. It often leads to more

hardcore dieting that day, sometimes not eating anything. (White man, 23)

Descriptions of self-harm were provided by participants who were assigned male and assigned

female alike; however, the descriptions focused on different areas of the body. Many of the self-harm
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descriptions that came from our participants who were assigned female centered on the removal of

breasts. One participant noted, "When I didn't want my breasts, I would want to tear them off so strongly I

would cry" (Hispanic/Latinx trans non-binary person, 33). Another mentioned:

The first dysphoria I was able to recognize was my physical dysphoria about my chest. Since

puberty, I have felt uncomfortable. . . I do have days where I wish I could just rip them off with

my bare hands. (White non-binary person, 25)

Participants who were assigned male similarly described their self-harm urges and practices with

removing facial and body hair. One participant noted self-harming during hair removal, saying:

Although I've had several laser hair removal sessions, dealing with facial hair is still a HUGE

source of dysphoria. I would often end up crying while shaving, and going over the same spot 20-

30 times because I just wanted the hair to be gone. This often left me bleeding quite a bit, with

raw patches all over my chin and neck. (White woman, 40)

Another participant who was assigned male noted that the presence of facial hair was the source of their

self-harming behaviors. “I still have facial hair post laser. I still have gray facial hair and can't afford

electrolysis right now. I have self-harmed over it” (White non-binary trans*femme, 55).

Changes in Dysphoria

The final theme that participants utilized to describe their dysphoria was through changes over

time. Some participants described the ways in which their body dysphoria changed, fluctuated, or how it

manifested differently over time. This theme was expressed by 13.4% of our participants, and through

acknowledgement of three different subthemes: general fluctuations in dysphoria; changes associated

with developmental milestones; and changes associated with transition milestones.

General fluctuations in dysphoria. One way our participants described changes in their levels of

distress was through their descriptions of general fluctuations or changes in their experiences of

dysphoria. Some participants noted that these fluctuations were derived from shifts in their own gender
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(e.g., they identified as both genders simultaneously or genderfluid), or simply due to random chance and

fluctuations. One participant described:

As someone who identifies as genderfluid, there are times where I am fine with my AFAB4 body.

Other times I really feel that my body isn’t what I desire to be. Most of my dysphoria revolves

around a lack of penis. I have a lot of body hair (might even be considered a lot for AMAB5) and

there are times when I am feeling more of the feminine side of the spectrum that it bothers me.

(White genderfluid person, 28)

Other participants simply described the fluctuations that occurred as a result of their dysphoria.

One participant noted, “Sometimes, I don't mind my body, and sometimes I cry thinking about it” (White

transmasculine person, 19). Another echoed the sentiment, mentioning, “it doesn't happen much, but

sometimes I see myself in the mirror and feel disgusted that I look the way I do” (White non-binary

person, 29). One participant noted their intersex status as playing a factor in their gender dysphoria:

Being intersex, my gender dysphoria is not that I am one or the other. I feel I should be equal

parts. My dysphoria comes because I look more male than female. And after being this way for so

long I want the pendulum to swing the other way. (White transgender person, 49)

Changes associated with developmental milestones. Some participants saw their dysphoria as

something that had changed due to a developmental hormonal milestone, such as the onset of puberty.

These participants acknowledged being happy until the onset of puberty, or not understanding why their

bodies seemed to be betraying them through the start of puberty. Some participants noted the difference in

their demeanor that they felt before and after starting puberty, and the changes that occurred during this

time:

I was a generally happy kid until puberty. I looked at my boobs and wanted them gone--same with

my hips. (White transgender man, 19)

4 AFAB = Assigned Female at Birth

5 AMAB = Assigned Male at Birth
BODY DYSPHORIA 18

Other participants noted that they began to feel disconnected from their bodies and wrong in their bodies

at the onset of puberty.

From the time of the onset of puberty, my body repelled me as it began to develop breasts and

hips. I "prayed" every night that god would make my body stop doing what it was doing, i.e.,

turning into a female/woman. (White trans man, 63)

Changes associated with transition milestones. Describing body dysphoria in relation to a

transition milestone was another way that our participants described how their dysphoria changed.

Typically, this came in the form of a medical transition step toward affirming gender identity. Some

participants named transitioning in general as the catalyst for their change in dysphoria.

After transitioning medically for a while most dysphoria surrounding other parts of my body have

sort of moved on. (Biracial woman, 19)

Before I transitioned it often felt like my body and the trappings of my life were largely foreign,

and at times, performative. (White woman, 26)

Other participants described their feelings of dysphoria before and after receiving top surgery. One

participant noted that “Before top surgery I felt like my breasts didn’t belong in my body”

(Hispanic/Latinx non-binary person, 40). Another participant described:

Before I got top surgery, I had a lot of chest dysphoria. I felt that my breasts didn’t really belong

on me and my ‘real’ chest was flat somehow, similar to how you might feel with tumor or another

part of your body that is not supposed to be there. (Black man, 32)

Integration of Themes

Through thematic analysis (Braun & Clarke, 2006), themes were created based both on frequency

and salience. Disconnection from Body was the most frequent theme, followed by the Manifestations of

Distress theme, and finally, Changes in Dysphoria. Themes were not mutually exclusive, with 56.6% of
BODY DYSPHORIA 19

participant responses expressing at least two of the three themes. For example, the following is a powerful

account of body-based dysphoria that encompasses each of the themes:

When I’m dysphoric, I lose connection to my body. It feels like I’m piloting a meatsuit that I’m

stuck in, with parts unfamiliar and weird and bumpy. And then because of those parts, people

identify me as something I am not. That feeling is like ice cold water and my gut clenches up. This

fatigue settles in. I feel trapped, as if forced to perform on stage in an ill-fitting costume in a

character role I can’t understand the motivation of, doing uncomfortable things in the scene.

Some days the costume is ok, but it’s still not me. The role is not me. Sometimes I try to say lines

or do things that are more me and not the costume but often people get angry and I feel worse off.

But really the disassociation relating to dysphoria is awful. It can lead to panic or numbness and

depression. I don’t feel in control, because I am not me and because people see me as something

completely not me. So how can they understand me? As a person? My words, experiences? My

being? It’s lonely. It’s an emotional and body reaction on a fundamental level. I can CBT myself

through the anxiety but the disassociation to my body stays. The nausea stays. The feeling of

feeling like an alien stays. I almost wish they would call me alien. It is better than “girl”. (White

non-binary person, 30)

The quote above highlights the way the three themes are not independently experienced. In our

coding of the data we identified three conceptually distinct themes. However, for many participants, their

description of each theme was integrated into a cohesive narrative. In the above example, the participant

described important ways in which they felt a clear Disconnection from Body, referring to their body as a

“meatsuit” and “costume.” The participant also described Manifestations of Distress, that were both

physical ( “gut clenches up” and “fatigue”) and emotional (“panic” and “depression”). Although

experienced together, the above participant’s description disaggregates the body dissociation from the

distress when stating “I can CBT myself through the anxiety but the disassociation to my body stays.”

Discussion
BODY DYSPHORIA 20

The present study utilized a non-clinical sample of trans individuals in order to directly assess

how they experience dysphoria that centers on body and appearance. When describing their experiences,

participants' responses clearly disaggregated the present conceptualization of gender dysphoria by

discussing both their body (as exemplified in the Disconnection from Body theme) and their distress

(exemplified in the theme Manifestations of Distress). Our participants also specifically described how

their dysphoria changed over time and fluctuated in other ways (exemplified in the Changes in Dysphoria

theme).

The primary purpose of the present study was to understand trans individuals’ experiences of

their own gender dysphoria with regard to their body and appearance. Given that our participants

described experiences that were outside of typical clinical conceptualizations of Gender Dysphoria, we

consider how the results relate to present diagnostic criteria. Due to the fact that our sample was derived

from the United States, and that 72.6% of participants noted they had a diagnosis of either Gender

Identity Disorder or Gender Dysphoria, we contextualize the results with how present findings work to

both support and extend our current understanding of DSM-5 criteria.

Alignment with Previous Conceptualizations of Gender Dysphoria

Our participants’ descriptions of dysphoria aligned with clinical conceptualizations of Gender

Dysphoria in some important ways. According to the DSM-5, one of the criteria necessary for a diagnosis

is “a significant incongruence between one's experienced or expressed gender and one's secondary sex

characteristics” (APA, 2013, p. 452). In the present study, participants described this incongruence

through the first theme, Disconnection from Body. Participants described feeling as though their body was

not theirs, and specifically described how their dysphoria caused them to feel disconnected from their

body and appearance. Previous literature has concentrated on the body as the central focus of gender

dysphoria (Lovelock, 2017), perpetuating the narrative that the experience of being trans centers on a

deep-seated desire to obtain the primary and secondary sex characteristics of a gender other than one's

assigned sex (Fisher et al., 2014). In some ways, this resonated with our participants; 68.9% of our
BODY DYSPHORIA 21

participants described specific parts of their bodies feeling alien to them and acknowledged feelings of

distress surrounding primary and secondary sex characteristics.

The DSM-5's distress criterion (APA, 2013) specifies that the pain derived from the disconnect

between an individual’s assigned sex and their gender identity is key to being diagnosed with Gender

Dysphoria (Priest, 2019). The Manifestations of Distress theme aligned with this conceptualization. Our

participants often described their dysphoria by referencing their emotional reactions. The gender

dysphoria that our participants experienced had a negative impact on their day-to-day lives, and their

body and appearance hindered the way they moved throughout the world. This was specifically seen in

the subtheme Efforts to Manage Dysphoria. Our participants described dysphoria-based limitations in

their daily lives, such as refusal to look in mirrors or avoiding interacting with individuals who do not

know about their trans identity. Some participants described taking extreme measures to attempt to create

an appearance that aligns with their affirmed gender; a finding that supports the literature on trans

individuals’ unique motivations for engaging in self-harm based on attempts for gender dysphoria

reduction (Morris & Galupo, 2019). These findings support the notion that our participants’ distress

impaired important areas of functioning through avoidance or self-harm (APA, 2013).

Extending Previous Conceptualizations of Gender Dysphoria

Although there were clear ways that our participants’ descriptions of dysphoria aligned with

previous conceptualizations of Gender Dysphoria, there were other notable ways that they did not. Our

participants described dysphoria about their body and appearance in ways that diverged from traditional

theories of gender dysphoria that are rooted in binary conceptualizations of gender. While some of our

participants acknowledged binary identities, as well as cross-gender experiences, other participants

described their identities and dysphoria in ways that upended binary conceptualizations. For example,

some participants described that their dysphoria was not linked to rejecting their assigned gender and

wanting the “opposite” gender; instead some participants (including non-binary and agender individuals)
BODY DYSPHORIA 22

attributed their dysphoria to not having the desired balance between masculinity and femininity or

wishing to de-emphasize gender in general.

Current clinical models (APA, 2013) and measures (Cohen-Kettenis & van Goozen, 1997;

Deogracias et al., 2007) conceptualize gender dysphoria as fixed, constant, and relieved through social,

medical, and legal gender transition. However, our participants described their experience of dysphoria as

changing across time and social context. This is supported by the literature that suggests that many trans

individuals do not take a fixed or linear approach to their gender transition (Hager, 2016), and may

instead approach it as a series of asynchronous, mutually exclusive medical, social, and legal steps (Clark,

et al., 2018). In addition, the current findings of dysphoria changing across social context reflects also

support the fact that dysphoria is not static or fixed (Galupo et al., 2019). Instead, an individual’s gender

dysphoria may be triggered by an external circumstance, or may vary randomly with a gender transition

(Galupo et al., 2019).

While the present findings support recent changes in the DSM-5, they also support the

suggestions that existing clinical measures are outdated (Shulman et al., 2017) and fail to represent non-

binary experiences of dysphoria (Galupo & Pulice-Farrow, 2019). By studying experiences of gender

dysphoria outside of the demand characteristics present within a clinical context (Anzani et al., 2019;

Serano, 2007), it is likely that participants were able to be more transparent in their descriptions.

Limitations and Directions for Future Research

While the present study extends the current understanding of gender dysphoria in important ways,

it is not without limitations. Consistent with other online convenience samples (Christian, Dillman, &

Smyth, 2008), our participants were disproportionately White, educated, and middle class and our results

should be interpreted within these demographics in mind. Future research should seek to specifically

understand the unique ways that trans people of color experience dysphoria. As there are presently few

studies that center trans people of color, the majority of what is understood about experiences of trans

individuals is from a White-dominated framework (de Graaf, Manjra, Hames, Zitz, & Tellier, 2019).
BODY DYSPHORIA 23

Further, the use of social media sites such as Reddit, Facebook, and Tumblr may have limited the age of

our participants, as participants recruited via online social media platforms are likely to be younger

(Frandsen, Thow, & Ferguson, 2016) and White (Murthy, Gross, & Pensavalle, 2015). As with many

single-question, online studies, it was also not possible to verify with our participants that we had

correctly interpreted their responses. It is important to note that despite their limitations, online surveys

are useful with groups that have concerns regarding privacy, such as trans individuals who are not out

publicly. The internet may also reach potential participants who are not connected to the trans community

and/or who cannot be easily accessed off-line (Riggle, Rostosky, & Reedy, 2005). The present findings

highlighted the changing nature of dysphoria, mentioned by more than as 13% of participants in the

study. However, our methodological choice of surveying participants at a single timepoint may not have

been the best method to capture changes across time. Changes in dysphoria may be better understood

through a longitudinal design allowing an analysis of the same participants at different stages in their

social, medical, and legal transition. Finally, while we asked trans individuals to describe their gender

dysphoria regarding body and appearance, we did not ask about specific DSM-5 criteria for Gender

Dysphoria. Future studies should focus on participant responses to specific criteria, and how well they do

and do not align with their lived experiences.

Implications for Health Professionals and Social Policy

The present findings have implications for health professionals working with trans individuals.

Within the current model of treatment, therapists need to have an understanding of diagnostic criteria for

trans clients in order to write letters of support for obtaining access to medical transitions steps (Budge,

2015; Olson et al., 2015) and for insurance purposes (Budge & Moradi, 2018). It is important to

acknowledge, however, that trans clients’ experiences may both align with and diverge from diagnostic

criteria of Gender Dysphoria. Since clinicians have traditionally served in gatekeeping roles for access to

medical services (Burnes et al., 2010), trans individuals may feel the need to report symptoms consistent

with diagnostic criteria (Budge, 2015), or may defer service altogether (Cruz, 2014). Specifically, trans
BODY DYSPHORIA 24

individuals may report the symptoms of gender dysphoria that they believe that clinicians want to hear in

order for them to obtain access to services (White Hughto et al., 2017). The present findings support the

fact that clients who feel more disconnected from their body, as well as experience high levels of

dissatisfaction with their bodies, are ideal targets for clinical interventions (Fisher et al., 2014; van de

Grift et al., 2016). Even though clinicians may have to act as gatekeepers within the present medical

model of trans health care, their expertise and knowledge are necessary; as access to medical transition

steps, such as cross-gender hormones and gender affirmation surgery, has been found to decrease overall

dissatisfaction with the body and appearance (Fisher et al., 2014). The present findings also support the

recent research that questions the utility of current clinical scales of dysphoria (Galupo & Pulice-Farrow,

2019; Shulman et al., 2017).

Clinicians should also be aware of the changing nature of dysphoria. As described by our

participants, a client’s dysphoria may not manifest in the same way each day. Dysphoria might shift based

on a client’s gender identity, or due to external triggers. It may also be experienced as disconnection and

distress that present at some times, but not others. Dysphoria in and of itself may be contextual:

sometimes, it may be triggered by situational, gendered expectations, or due to having to negotiate a

specific identity (Galupo, Pulice-Farrow, & Lindley, 2019). Clinicians should keep in mind that trans

individuals may need help to navigate these experiences. APA (2015) guidelines should be implemented

in order to affirm trans clients and allow them to make the transition steps that feel most authentic for

them. Clinicians should be knowledgeable of a wide range of transition choices (social, medical, and

legal) and experiences of dysphoria, and should let clients drive the conversations and decisions regarding

their own gender transitions (APA, 2015).

Finally, it should be noted that within the present healthcare system, an individual typically must

have a formal diagnosis of Gender Dysphoria in order for insurance to pay for any medical transition

steps (White Hughto et al., 2017). Consequently, some trans individuals may attempt to describe their

gender dysphoria as coinciding with the criteria in the DSM-5, in order to receive a diagnosis (Bockting,
BODY DYSPHORIA 25

Robinson, Benner, Scheltema, 2010). The results of the present study show that trans individuals

experience gender dysphoria in ways that extend our current conceptualizations of Gender Dysphoria.

Thus, clinicians should use their judgement in conjunction with the DSM-5’s criteria. Within this context,

and through understanding how trans individuals’ experiences may differ from what is described in the

criteria for Gender Dysphoria, we suggest that the role of healthcare providers may need to be revisited.

Specifically, the movement of clinicians to an informed consent model of trans healthcare may provide

clients with more autonomy, and create less implied pathology around experiences of being trans (Schulz,

2018). This model seeks to uphold a trans clients’ autonomy through the discussion of the risks and

benefits of medical transition steps without necessitating a clinician (Cavanaugh, Hopwood, & Lambert,

2016). The use of the informed consent model will allow trans individuals to feel less pressured to have

their experiences fall directly in line with the DSM-5’s criteria of Gender Dysphoria, and minimize the

gatekeeper role that clinicians may inadvertently play.

Conclusion

It has been suggested (Galupo, 2017) that we need to adopt research approaches that invite trans

individuals to reflect upon the theories and scientific concepts that ultimately impact their lives. By giving

trans individuals a space to describe their gender dysphoria in relation to their body and appearance, the

present research expands our understanding of gender dysphoria in important ways. Participants described

experiences of gender dysphoria that both aligned with and extended currently-held conceptualizations.

These findings illustrate the value of conducting research that centers on trans voices, particularly when

investigating constructs that are critical to their health and well-being.

Conflict of Interest:

The authors declare that they have no conflict of interest.

Ethical Approval:
BODY DYSPHORIA 26

All procedures performed in studies involving human participants were in accordance with the ethical

standards of the institutional and/or national research committee and with the 1964 Helsinki declaration

and its later amendments or comparable ethical standards.

Informed Consent:

Informed consent was obtained from all individual participants included in the study.
BODY DYSPHORIA 27

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