Intersex Euphorias! Positive Experiences of Intersex Variations on and After Diagnoses

Abstract

People with intersex variations are mostly framed within conservative psycho-medical research challenging their autonomy, or critical empowerment Intersex Studies literature noting discrimination. Resisting deficit-based framings, this chapter uses the concept ‘euphoria’ to investigate when, why and how 272 Australian online survey participants (aged 16-87yrs) had positive experiences of their intersex variations. Upon diagnosis, under one fifth described what this piece calls Category Validation, Difference Legitimisation, Knowledge Integration, Medical Sense-making or Sudden Hope euphorias. Post-diagnosis euphorias were more common, most often Body Positivity euphoria. Also, Acceptance, Autonomous Control, Relative Gains, or Fitness Edge euphorias emerged. Euphorias had different feelings, stimuli, processes, and impacts. Body Positivity euphoria was most connected and conducive to other euphorias, and has external stimuli which could be invested in further.

FormalPara Key Points:

• Under a fifth of people with intersex variations had diagnoses-related euphorias.

• Most people with intersex variations had post-diagnoses euphorias, especially Body Positivity and Acceptance euphorias.

• This cohort often experienced enforced interventions during the developmental stage ideally establishing autonomy; Autonomous Control euphoria may help redress developmental impacts.

• Body Positivity euphoria was most linked and conducive to other euphorias, and could be learned.

• Body Positivity euphoria may aid individuals’ health-care and social engagements.

Introduction

I spent so much time revising everything they had taught us in school, in the media, in daily life about bodies (…) more than anything it helped to know some intersex people who loved their bodies and believed I too could love mine (Fernanda, female/X with PAIS, 25yrs, on how Body Positivity euphoria evolved from contact with intersex community and exposure to resourcing countering body normative messages across her Micro and Macrosystems).

Intersex is an umbrella term for the over 1.7% of people born with atypical sex characteristics; including over 40 variations to chromosomes, hormones or hormone sensitivity, and/or anatomy [1]. Intersex variations discussed in research most commonly include partial or complete androgyn insensitivity syndromes (PAIS or CAIS), congenital adrenal hyperplasia (CAH), Klinefelter’s Syndrome (KS)/47XXY, Poly-Cystic Ovary Syndrome (PCOS)-related hyper-androgyny and Turner’s Syndrome (TS) [1, 2]. This chapter explores people’s positive experiences of their intersex variations. It firstly summarises how people with intersex variations are framed in the literature. It secondly uses ‘euphoria’ to report on positive experiences from an online survey of 272 Australians with intersex variations. It discusses these data using Chap. 2’s ecological model.

Problematising Intersex Health Research

Most research literature on people with intersex variations is from the American-Canadian region [2, 3], Asia-Pacific [4, 5], and Europe [6]. People with intersex variations were historically largely framed within traditional institutional expert-centred psycho-medical lenses, constructing them as disordered and requiring ‘normalising’ bodily interventions without consent [5, 7]. Clinical studies privileged constructions of this group as having ‘Disorders of Sex Development’ (DSD) pathologizing their anatomy, endocrinology, genealogy and/or urology. The group was thus cast as needing expert-centred clinically/institutionally based analysis, diagnosis and often so-called corrective hormone therapies or genital surgeries. Medical researchers were thus interrogative over their patients’ perceived disorders rather than the biases behind their medical practices.

Contrastingly, recent community-centred Critical Intersex Studies sociological survey work and Bioethical Narrative Inquiry work [4, 8] has framed people with intersex variations as marginalised within discriminatory contexts (or medical and education institutions). These narrative or sociological survey argue for reforms involving people with intersex variations agentively and aligning with rights-based consensus statements [9], privileging a critical view of people with intersex variations as members of a marginalised community collectively at risk of poor access to medical information or discriminatory medical structures limiting bodily autonomy. Medical views on intersex variations are interrogated for discriminatory binary ‘norm’ biases, problematic ethics, and impacts. Given ‘euphoria’ suggests ‘pleasure’ within ‘difficulties’ in condition/s, a non-academic ‘Gender Euphoria’ book included people with intersex variations (e.g. Mari Wrobi) in stories of moving from a birth-assigned gender [10], casting euphoria in relation to ‘dysphoria’. The DSM-5-TR sub-section ‘Gender dysphoria with a disorder of sex development’ claims individuals may experience ‘uncertainty about their gender, as opposed to developing a firm conviction that they are of another gender’ as they become aware of ‘their condition and medical history’ [11], but does not consider euphorias. Whilst 8.5–20% of people with intersex variations experience dysphoria [12], there is a research gap on the cohort’s euphorias.

Redressing Intersex Euphoria Research Gaps

An affirming sociological study solely exploring people with intersex variation experiences of euphoria was needed, to complexify deficit frames of disorder and discrimination in research, and extend on Wrobi’s anecdotal euphoric account. The study aimed to consider:

• 1. How can we characterise typical euphoric (happy or comfortable) experiences of people with intersex variations, and their influences?

• 2. How do these euphorias typically change over time, and what influences changes?

Methodology & Method

Online Survey

An anonymous online survey was used to collect data on people with intersex variations aged 16yrs+. Informed by Critical Intersex Studies, the researcher formed a reference group (with AISSGA, OII and other representatives), who assisted around sensitivities. The survey hosted by Survey Monkey at a URL that included the term ‘ausvariations’, contained 10 pages including 61 forced-choice and open-ended questions. Completion times varied greatly (between 15min-2hrs). Ethical approval was obtained for this project from the UNE Human Research Ethics Committee. Participants self-selected to join the research, had the right not to answer any question. Employing post-modern deconstructive work the researcher enabled participants’ own self-definitions and descriptions through a focus on open-choice written response questions around positive experiences in the questionnaire. Younger participants (16-17yrs) were not required to seek parental approval for their participation, in recognition of anecdotal reports of discrimination or abuse. The survey also supplied links to related help lines and support groups. It opened in May 2015, and closed after two months. Various media were used to promote the project, such as intersex groups, networks, services, various media, social networking sites, websites, e-lists, advocates, and word-of-mouth.

Data Analysis

Final survey quantitative data were downloaded from the Survey Monkey site and then transposed into quantitative computer programs (SPSS v10, Excel). The data were screened and cleansed and those participant surveys that did not fit the target group were excluded. Descriptive statistical analyses were undertaken for the participants with intersex variations, and grounded thematic analyses of their written responses. There were no significant test results by age, sex, or location.

Initial codes were developed from the survey written responses around euphoria using Grounded Theory. Two fluid coding stages placed a focus on emergent categories/strategies [13]. The automated content analysis programme Leximancer, was firstly applied to analyse participants’ comments on two questions where they explained why they felt ‘good’ or ‘very good’ about their intersex variations on diagnosis, or ‘now’ (post-diagnosis). All positive answers for each question were collated into PDFs, and uploaded to Leximancer, applied to ensure dominant thematic concepts and their ‘typical’ quote samples were identified and examined systematically based on data representativeness (see Ch:3). Equivalent concepts in different tense or quantity were merged in concept-editing stages. Map settings were kept at ‘100% visibility’ and ‘50% theme size’ to show common themes and overlaps. All Leximancer-identified themes were secondly elevated for theoretical sampling, tracing euphorias’ feelings, stimuli, processes, and outcomes. Open coding processes included line-by-line coding, so different euphorias within a single story were separated out for concept-level and individual-level ‘meanings’. Finally, connections between euphorias were explored. Leximancer-selected typical quotes are reported using gender-congruent pseudonyms.

Results

Demographics

The average age of the 272 people with intersex variations aged 16-87yrs who completed the survey was 36yrs. Most came from the three most populated Australian states [NSW (32%), VIC (21%) and QLD (18%); or WA (6%), SA(10%), TAS (2%), the ACT (5%) and NT (4%)]. Around one fifth of the participants were living outside of Australia, commonly in the United States (31 people), England (7), and Canada (3). There were no ‘statistically significant’ comparative findings for international groupings. Whilst 4% of people with intersex variations in the study were Australian Aboriginals or Torres Strait Islanders, they had no distinct trends. Many participants (65%) were working (full-time, part-time, or casually); 12% were unemployed—a higher portion than for Australians broadly. The majority (63%) earned an income under $41K per year. Most had not disclosed their variations at work.

Whilst 52% were allocated a female sex at birth and a similar portion used that marker now; 41% were allocated a male sex at birth yet only 23% used that marker now (Fig. 7.1) Only 8% of participants were transgender; changes in sex markers (mostly to ‘X’) mainly related to individuals’ fundamental disagreement with medical practitioners’ assessment of their sex characteristics (not gender identity). Whilst 27% of the group had disabilities (e.g. anosmia, osteoporosis etc.), only 12 reported gender dysphoria diagnoses. Over half the participants had experienced two medical interventions for their intersex variation, commonly hormonal treatments and genital surgeries when aged under 18yrs. Most experienced at least one negative impact from surgeries (from scarring, decreased genital sensation, depression, anxiety, PTSD, to life-threatening septicaemia). Participants were asked to select variations that they were born with from an alphabetised list. On average, they selected two (Table 7.1).

Fig. 7.1

Comparing people with intersex variations’ sex marker assigned at birth and used now (N=272)

Table 7.1 Variations experienced by participants (N=272)

Positive Feelings Upon Diagnosis

Most participants (64%) learned of their variation aged under 18yrs, a third as adults, and a few remained unsure of the details. Participants were asked how they felt about their intersex variations upon diagnosis. From the options provided 7% selected ‘Very Good’, 12% ‘Good’, 33% ‘Neutral’, 20% ‘Bad’ and 28% ‘Very Bad’ (Fig. 7.2). Euphoria was possible but unlikely on diagnosis: 19% of participants felt positively about their variations on diagnosis. Of the 51 participants who had positive feelings on diagnosis (19 very good and 32 good), six also reported gender dysphoria. Leximancer found five themes in their 50 comments about participants’ positive feelings on diagnosis: felt, different, knew, medical and due (Fig. 7.3).

Fig. 7.2

How participants felt about their intersex variation/s when they first learned of them, compared to now (N=270)

Fig. 7.3

Leximancer map for people with intersex variations’ diagnosis euphoria descriptions (N=50)

‘Felt’: Category Validation Euphoria

The largest Leximancer-identified theme was ‘felt’ (27 hits, 100% relationality to—co-occurrence with—all other concepts). It focussed on participants’ elation, relief and reduced loneliness upon finally having a category or group they belonged to (sub-concepts: felt, finally, people, life, female, having, time, relieved, able, children, sex, alone). Zoe (intersex woman with CAIS, 53yrs) felt good learning about her intersex variation; ‘I was relieved to understand why my body was the way it was’. It helped her to connect socially, ‘I had felt very alone with it for a long time, so it was good to put the pieces of the puzzle together and then to be able to meet others with AIS was a huge relief’. Dylan (man with PAIS and Hypospadias, 24yrs) had experienced suicidal ideation and sex/gender confusion. Diagnosis made him feel ‘very good’, relief, and elation:

It was entirely life affirming and so brilliant to have the truth out and to know why I am how I am (…) why I felt like I could be female sometimes. I had thought I was crazy. I am not crazy. I am intersex!

Dylan said participating in the survey and affirming himself as ‘intersex’ was also ‘energising’. Similarly, Jamie (X intersex individual with CAH/21 hydroxylase deficiency, 39yrs) was raised male but used an ‘X’ category. Upon diagnosis, Jamie felt relief joining the intersex category for several reasons:

First, there were others (…) I was not alone. Secondly, it explained to me why I was like I was, most of my issues are common with my condition, it was like a breath of hope. Finally, I am able, if I get help, to live a somewhat normal life and not have to be something I’m not.

Cary (intersex woman with Classic CAH and Clitoromegaly, 19yrs) felt ‘good’ when diagnosed; saying it aided her use of more categories; ‘Sometimes queer when I feel like I am genderqueer or feeling more like a boy. Baby butch is ok too’. She commented on her gleeful feelings over the ‘serious’ diagnoses time:

It seemed right. It was sort of funny and sort of our joke, and then it was more serious but it was not a problem, it made sense. I think having my girlfriend there makes things special and sort of something we are doing together, it is tied to our sex life...

She rejected her doctor’s recommendation for reducing the size of her clitoris; ‘if anything I feel a bigger clit would be more fun’. Similarly, Clara (trans-woman with KS/47XXY, 21yrs) was overjoyed when she learned of her KS/47XXY diagnosis: ‘I felt that I now had a reason for how I felt growing up, I have always felt more like a girl than a boy’.

Karma (transgender non-binary intersex person with PCOS/Hyperandrogenism, 25yrs) felt ‘good’ about having PCOS/Hyperandrogenism because it helped them identify as non-binary; ‘I never identified as female, and was relieved that I did not develop wide hips or breasts’. Similarly, Celine (female with XXY/47, 50yrs) felt ‘very good’ upon diagnosis and ‘elated that I finally had a confirmation my gender was genetically different to anything ‘standard’. She resisted the suggestion from medical professionals that most people with XXY/47 are male; feeling her karyotype further validated her female category. The Category Validation euphoria identified within the ‘felt’ theme was overall the most central euphoria uncovered by Leximancer for participants’ comments on diagnosis. It had connections to the ‘medical’ and ‘knew’ themes, and overlaps with the ‘due’ and ‘different’ themes.

‘Different’: Difference Legitimisation Euphoria

‘Different’ (10 hits, 35% relationality) depicted feeling legitimised as unique or special in the moment of learning of one’s intersex variation/s, and was especially associated with people who were allocated a ‘Male/M’ sex on their birth certificate and celebrated having a differentiation from typical male bodies or identities (sub-concepts: different, male). Ahmed (intersex man with micropenis, 29yrs) felt good about his diagnosis because of: ‘a combination of being different and legitimised. I also think it's very interesting (…) Part of me also likes that T [testosterone therapy] enhances my erections rather than being responsible for growth’. Selma (intersex woman with 47XXY, 24yrs) ‘felt good’ about the difference implied by her diagnosis, because it legitimised her feelings of difference from the sex she was raised in:

I knew something was different and I related more to girls than boys as a child. So given that I had learned in school that girls are xx and boys xy. This was kind of a proof to why I felt like such an outsider.

Jordan (intersex individual with KS/47XXY, 56yrs) also said diagnosis legitimised his sense of difference from other boys, because it: ‘Merely confirmed my androgynous, non-sexual sense of self. Had known I was different to the other boys since early childhood, but didn't have an explanation’.

For several participants however, their initial joy at difference dissipated. Bailey (intersex non-binary individual with KS/47XXY and ovo-testes, 25yrs) found diagnoses made them initially feel ‘very good’, commenting ‘it was a relief to me to learn that I was neither male nor female, or that perhaps I was both or something in between’. However, Bailey later was pressured by parents and doctors to be more masculine, and experienced phases of hiding their difference. Similarly, for Angelina (intersex female with PAIS, 35yrs) initially on diagnosis: ‘I felt really good about it, because it explained so much. It was like everything in my life finally clicked’. Her family ‘accepted it without question’. However, the initial euphoria left; ‘once it sunk in I was Intersex, I got depressed for nearly two months’. Scarlet (female with 3BHSD Late Onset CAH, 40yrs) similarly initially felt ‘very good’ about not being traditionally male, but nonetheless her euphoria was complicated since her diagnosis included fertility issues ‘it was bad enough having a female gender identity and consequent Gender Dysphoria due to a male body, but to have a ‘defective’ one with very limited fertility seemed very unfair’. Scarlet’s euphoria over differentiation from male identity was temporary, and complicated by dysphoria. Noreen (transgender intersex woman with Cryptorchidism, 61yrs) felt ‘good’ about her variation on diagnosis later in life, because it explained her feelings of difference. However, it also created difficult impacts (contributing to her divorce), and evoked hard memories. So her euphoria mixed with anger and bitterness:

I didn’t know whether to be angry or to have a good cry. It was good though to finally know why I’d always felt like a fish out of water all my life. After years of my young life spent blaming myself as I grew up for not being able to measure up as a male, I now knew the reason why.

The Difference Legitimisation euphoria in the ‘different’ theme overlapped with Category Validation euphoria and other types. It especially overlapped where several participants had ‘always felt’ different.

‘Knew’: Knowledge Integration Euphoria

The stand-alone theme ‘knew’ (7 hits, 30% relationality) covered the pleasure of having a pre-existing subliminal knowledge about one’s intersex variations confirmed on diagnosis; often coupled with yearning to have had the direct knowledge earlier. Victor (male with Kallman Syndrome, 28yrs) felt ‘good’ upon diagnosis because it confirmed an indistinct ‘inner knowing’:

I knew there was something about me, but I did not know what it was. Knowing you have KS helps and I wish I had known earlier. It sounded weird to other people but it did not sound weird to me as it fit so many parts of me.

Nadine (female with Clitoromegaly/Classic CAH, 53yrs) felt ‘good’ upon diagnosis because ‘It just felt like a useful revelation that put words to feelings and answered questions, and made sense of memories like the hospital visits, and the pills conversation’. She was pleased she had avoided genital surgery and declined hormone pills; ‘I loved my lean body while lots of my girlfriends were fatter and had big baggy breasts slowing them down. Mine were cute and perky’.

Cameron (male with KS/47XXY, 66yrs) said his diagnosis made him feel ‘good’ because it meant, ‘I knew why I had the lumps and to some extent, I felt special’. He found out about the variation when investigating his sterility later in life, and so wished he had learned about it earlier to confirm his previous suspicions about his hormonal differences and enable earlier hormonal interventions. Mia (intersex woman with clitoromegaly and unknown variation, 24yrs) felt ‘good’ upon diagnosis, because ‘I knew I was a bit different. I have no desire to be a man but I do not feel or look like a girly girl either’. It also helped that she had experienced pre-diagnosis positive exposure to people with intersex variations at LGBTI events: ‘I did not know it at the time, but seeing those intersex people at Mardi Gras meant a lot to me when I was first getting the results (…) those people and how happy they were’.

Mia’s story showed how some participants both knew, and didn’t know, about their intersex variations simultaneously pre-diagnosis. The ‘knew’ theme overlapped with the ‘different’ theme, through stories like Jordan’s (intersex individual with KS/47XXY, 56yrs) where the participant always knew they were different. Knowledge Integration euphoria also had relationships to individuals’ past exposures to communities, people or traits related to intersex variations.

‘Medical’: Medical Sense-making Euphoria

‘Medical’ (3 hits, 13% relationality) comprised the joy of sense-making upon medical intersex diagnosis, with two sub-concepts (medical and sense). It particularly linked to the ‘felt’ theme through stories like Cary’s and others’, where one or more medical diagnoses made sense of a feeling that the participants already had, that they aligned with a sex category or social cohort different to the one they were assigned at birth. Clara (trans-woman with KS/47XXY, 21yrs) commented that her diagnosis provided medical sense-making of her sense of self as female: ‘With the diagnosis I felt I could finally be myself as I now had a medical excuse as to why I felt this way’.

Drew (intersex person with Cloacal Exstrophy, 36yrs) commented that their diagnosis gave them ‘good’ feelings, because it made sense of their identity. Despite later difficulties and challenges around their identity, they argued that because they had positive support and experiences of care around the initial medical explanations, the initial positive sense-making processes mediated relations with family, and harder times later, and ‘due to having two ostomies and other medical complications I was brought up to be resilient and independent’. So, participants’ comments revealed that Medical Sense-making euphoria identified within the ‘medical’ theme potentially had a relationship to positive treatment by medical professionals and family, and Category Validation euphoria.

‘Due’: Sudden Hope Euphoria

The smallest stand-alone theme ‘due’ (3 hits, 13% relationality) expressed respondents’ sudden hope upon diagnosis for understanding or envisioning a better future occurring due to its contrast against preceding negative contexts of confusion or difficulties. Blake (male with XXY/47, 49yrs) described a ‘good’ sudden hope upon diagnosis, because it gave him the knowledge to overcome sexual issues he was experiencing with his wife and some context for the bad treatments he had experienced without explanation during childhood. Information was hope-inducing for Blake, in the context of having previously lacked it, since ‘Knowledge helps us to live well. Research must continue to allow everyone a better quality of life’.

Reese (intersex female with CAIS, 40yrs) described a sudden euphoric ‘very good’ hopeful feeling upon diagnosis:

There was a name, and other people who had this, and an answer as to why I felt different to other female friends. Definitely shock and confusion at first due to not understanding or knowing of these variations prior to now, however a feeling of finally understanding myself. Lack of support for myself and my family at this time however affected our relationships (…) This new information allowed me to be involved in the (intersex support group) which then gave support...

Being diagnosed in a context of negative prior understanding and relationships meant Reese saw the diagnosis as hopeful and a pathway towards alternate supports. The ‘Due’ theme thus suggested that Sudden Hope euphoria may occur for some individuals upon diagnosis. It especially was due to a break from prior hopelessness, negativity, and/or confusion. Though it strikes fleetingly, Sudden Hope euphoria appeared more impactful the greater the intensity of the pressures it relieved. Even in memory it appeared to have sustained or sustaining effects.

Positive Feelings Now/post-diagnosis

Asked how they felt about their intersex variations at the time of taking the survey/post-diagnosis; 23% of participants selected ‘Very Good’, 33% ‘Good’, 22% ‘Neutral’, 15% ‘Bad’ and 7% ‘Very Bad’ (Fig. 7.2). Most (56%) participants felt positively about their intersex variations now (on average over a decade post-diagnosis); over twice as many felt good post-diagnosis than on diagnosis. Thus, the cohort felt better about their variations over time and ultimately had mostly positive feelings towards them, despite initial negativities. Of the 56% of participants who had positive feelings post-diagnosis (62 very good and 89 good), nine also reported gender dysphoria. Leximancer found five themes across the 150 comments provided about participants’ positive feelings post-diagnosis: body, accept, surgery, makes and fit (Fig. 7.4).

Fig. 7.4

Leximancer map for people with intersex variations’ post-diagnosis euphoria descriptions (N=150)

‘Body’: Body Positivity Euphoria

The largest Leximancer-identified post-diagnoses theme was ‘body’ (86 hits, 100% relationality). It captured participants’ increased experiences of body positivity across life, often after negative diagnoses experiences (sub-concepts: body, people, life, feel, intersex, love, read, helped, need, changed, gender, hormones, medical, happy, sex, age, care). For some this shift to body positivity was inspired by other people with intersex variations. Lily (intersex female with Mayer Rokintanky Kuster Hauser Syndrome—MRKH/congenital absence of vagina, 31yrs) had ‘very good’ feelings about her intersex variation now, years after ‘traumatic’ medical treatment incidents upon diagnosis in her teens and periods of self-harm. Connecting to other people with intersex variations was life-changing for Lily, creating connection to her body and those who loved it:

The intersex community changed my life. Becoming connected and becoming an activist and educator changed everything. I love my intersex body and have found partners that do, too. My fears about being a freak and being rejected simply haven’t played out.

Fernanda (female/X with PAIS, 25yrs) also felt ‘very good’ about her intersex variation and body now. Fernanda’s comment, opening this chapter, explained that this shift was inspired by intersex community groups that ‘affirmed intersex body-positive ideas’; reading ‘feminism, gender theory’ and time spent revising school curricula, media, and daily life body normativity messaging. Fernanda thus reframed her body as, ‘one of many possibilities, and one of the many body types that is not accepted or celebrated as it should be’. Jannali (intersex female with CAIS, 25yrs) also now shifted to feeling ‘very good’ about her body due to online intersex contacts who:

caused a complete and radical shift in my thinking and wellbeing. Seeing that they had come out about being intersex, and that they liked themselves, that some had partners... BEST. THING. EVER!

Warren (intersex man with unexplained scarring, 38yrs) felt ‘good’ when ‘I started to meet other intersex people and find social support’ around his body. This inspired positive changes:

I started to find medical professionals who treated me with respect and care, instead of bullying me into hating my body or doing interventions that I didn’t want to do. I take better care of my body and am more likely to seek medical care now

For some participants, Body Positivity euphoria was inspired by reading body positive texts. Edwina (woman with MRKH Syndrome, 27yrs) had negative schooling and medical experiences which initially made her feel ‘very bad’ about her body. However, body positive reading often created ‘very good’ feelings of validation of her body and:

helped me to see the pressure placed on women’s bodies (…) The more I read and talk to other people with bodies like me, the more I know the stories we are sold about living up to sex ideals are the stories that make us feel we cannot live. I have let those old ideas go now.

The Body Positivity euphoria evident in the ‘body’ theme was the most central and dominant euphoria in the study. It had relationships to the most euphorias in Leximancer’s post-diagnosis comments map, including those within the ‘surgery’, ‘fit’, and ‘accept’ themes.

‘Accept’: Acceptance Euphoria

‘Accept’ (26 hits, 31% relationality) explored increased individual self-acceptance or social acceptance over time (sub-concepts: accept, time, able, friends, look). Ralph (man with KS/47XXY, 42yrs) had a history of negative experiences including being bullied, around his low testosterone. However, he increasingly had moments where he felt ‘good’ about himself as he became more self-accepting, and more accepted by family and friends. He stopped using drugs and increasingly disclosed identity elements to others: ‘Since 'coming out' couple years ago to my family and friends about my cross dressing, I have been able to accept who I am today’. Raj (male with 17-beta-hydroxysteroid dehydrogenase deficiency, 26yrs) said he felt ‘good’ now because ‘I am getting the look I want and accept what happened [to my body] and why’. He also became increasingly able to discuss his variation or body with accepting colleagues; ‘That kind of acceptance feels good and I like being able to talk to them about it’. Jonah (male with XY/XO Mosaics, 63yrs) commented: ‘I'm content with my body. When I first found out that my XO cell line was responsible for my feminine face (due to micrognathia) I was angry. (…) It took some time, but I grew to accept my body’.

Younger people in this theme group especially commented on satisfaction about body parts they accepted. Giana (female with PAIS, 17yrs) commented: ‘I like my body, how I look, how boys like it. Girls get jealous that I am not hairy, and don't have to wax all the time’. Vita (intersex female with Kallman Syndrome, 18yrs) commented: ‘I like my little boobies! I am still a bit skinnier than most girls’. The Acceptance euphoria in the ‘accept’ theme had an overlap with the ‘body’ and ‘makes’ themes.

‘Surgery’: Autonomous Control Euphoria

‘Surgery’ (19 hits, 19% relationality) described feelings of achievement over increased autonomy and personal choice/control around identity, information, hormonal and/or surgical treatments (sub-concepts: surgery, woman, female, and chest). Sloan (individual with PCOS/hyperandrogenism, 45yrs) had felt ‘very bad’ upon diagnosis but felt ‘good’ and happy after engaging in a chosen surgery, and aimed at feeling ‘very good’ in future: ‘living in the appropriate gender for me has made me happier with my body more than medical interventions. I would choose very good, but I need to go to the gym for that’. Sherry (woman with PAIS, 55yrs) felt ‘very good’ and happy about her increased control over her surgical and hormonal interventions now. Chris (intersex individual with 47/XXY, 44yrs) felt ‘Very Bad’ about the initial experience of receiving minimal information about their diagnosis as a teen. However, having recently gained full access to their medical records on their chromosomes and greater control over interventions, Chris now felt ‘Very Good’: ‘Finally being able to realise and say who I am, and doing what I wanted to do about that has made a massive difference to every aspect of my life’.

Dana (woman with XXXY chromosomes, 45yrs) felt ‘good’ and satisfied due to increased information access around her variation; ‘initially, I was gendered female, then they sealed that and made it look as if no previous record had existed. I have now been able to get the original with the original registration date reinstated’. She also increasingly felt self-love after controlling her surgeries: ‘You just learn to love yourself, made it a lot easier after recent surgery to undo damage done’. Andy (intersex man with Jacobs/XYY Syndrome, 34yrs) felt ‘Very Bad’ upon diagnosis as a teen, because he did not know exactly ‘what’ he was. After exposure to intersex support groups online, he now feels ‘Very Good’ about his variation and has more information and treatment control; ‘When you know what you are, you can learn to live with it’. Elaine (trans intersex woman with KS/47XXY, 31yrs) shifted from feeling ‘bad’ upon diagnosis to ‘good’ now. Raised as male, she transitioned to female later in life and she was forced to divorce, lost her mortgaged home and family and began couch-surfing. However, increased control over bodily interventions made her ‘happier than ever’. Nina (intersex female with 3beta hydroxysteroid dehydrogenase deficiency, 32yrs) now felt ‘good’ but had experienced many difficulties when younger. Her happiness increased around becoming ‘in control’ over her interventions:

I have a designer vagina! Very perfect body, my friends say. My regrets are just that it needs to be perfect. You never stop being seen as intersex or trans (…) I feel more pressure.

The Autonomous Control euphoria evident in the ‘surgery’ theme overlapped with Body Positivity and Fitness Edge euphorias in the ‘body’ and ‘fit’ themes through several stories, illustrated in the Leximancer map.

‘Makes’: Relative Gains Euphoria

‘Makes’ (11 hits, 19% relationality) denoted positive feelings on relative gains people had around having intersex variations compared to their own or others’ experiences (sub-concepts: makes, tall). Gains included height, strength, uniqueness, or positive social differentiations. Some participants experienced gains relative to others. Gabriel (male with XY/XO Mosaics, 19yrs) used to find being shorter than others difficult, but now he feels ‘good’ about being intersex, as it ‘makes you stick out’. Stewart (male with KS/47XXY, 39yrs) said HRT helped him to look masculine and he felt it gave him advantages his brother did not have that made him feel ‘Very Good’. He commented: ‘Like being tall, like being on T. My brother did not have this. He's not as good looking. ;’. Siobhan (girl with TS, 16yrs) described a special feeling around giving a speech at her school on her Turner’s Syndrome, when the students gave her a standing ovation: ‘It makes me feel so much more special’. She also liked getting taller; ‘I'm growing a bit! It is exciting’. Vincent (male with XXY/47, 49yrs) enjoyed feeling ‘Very Good’ now when realising he was more interesting than if he had been endosex: ‘It is now a point about me I find interesting and unusual. There is not much else about me that makes me unique’.

Some participants experienced gains relative to their own earlier or compartmentalised experiences. Marcia (intersex woman with Turner’s Syndrome, 27yrs) got ‘happier as I get older’. Barbara (trans intersex female with PAIS, 40yrs) had felt ‘Very Bad’ about her intersex variation growing up due to poor socialising, but now felt ‘Very Good’ as ‘Hormones and hair removal have made a huge difference’. Gordon (male with KS/47XXY and micropenis, 21yrs) felt ‘good’ about his height relative to his other body features: ‘Being tall makes up for so much. Unhappy about my teeth’. Briony (female with Turner’s Syndrome/One X Chromosome, 30yrs) had felt bad earlier but now enjoyed her gains from TS, feeling:

Very good about the body, I am old enough to know you only get one and everyone has some complaint or another. My complaint is the infertility, TS itself just makes me special and more open-minded. I think it made me stronger.

The ‘makes’ theme had a link to the ‘accept’ theme and revealed a connection between Relative Gains and Acceptance euphorias.

‘Fit’: Fitness Edge Euphoria

The smallest theme ‘fit’ (8 hits, 14% relationality) comprised participants’ positive feelings around how their intersex variations enhanced fitness, litheness, muscle-tone, or masculinity (sub-concepts: fit, masculine). Kelly (intersex woman with clitoromegaly and CAH, 19yrs) felt ‘very good’ about their fit body and masculinity, saying:

I’m happy with it, I am fit and strong. I like sex a lot and would not want to wreck that. I don’t have big boobs or anything so I look androgynous which is what I like and what my partner finds attractive.

Nina (intersex female with 3beta hydroxysteroid dehydrogenase deficiency, 32yrs) enjoyed being ‘very pretty, very fit, very easy on the eye’. Sherry (woman with PAIS, 55yrs) felt masculinity aided her looks:

I love that even middle-aged I have remained fit and lean. My chest is not sagging, my hips are not large, I have no stretched belly having carried no children. It is ironic that the ideal woman is like a man.

Marnie (intersex woman with gonadal dysgenesis, 58yrs) felt ‘good’ having realised that, ‘Overall I am fit and healthy and there are people with much more significant and incapacitating conditions, so I count my blessings’. Tina (woman with 17-beta-hydroxysteroid dehydrogenase deficiency, 33yrs) sometimes felt ‘very good’ now, based on ‘intersex advantages’ including, ‘I have some masculine traits within my personality that are a real gift - they contribute to my success at work, and in my personal relationships’. The Fitness Edge euphoria seen within the ‘fit’ theme had an overlap with the ‘body’ theme/Body Positivity euphoria, and ‘surgery’ theme and Autonomous Control euphoria according to the Leximancer map.

Discussion

Dominant Intersex Euphorias

This study uncovered intersex diagnosis-specific (1) Category Validation, (2) Difference Legitimisation, (3) Knowledge Integration, (4) Medical Sense-making, and (5) Sudden Hope euphorias; and post-diagnosis (1) Body Positivity, (2) Acceptance, (3) Autonomous Control, (4) Relative Gains, and (5) Fitness Edge euphorias. For these participants Category Validation euphoria most reflected a joyful feeling of rightness in existing studies; whilst Difference Legitimisation euphoria most reflected relationships to identity struggles and dysphoria, though 10 of 12 participants with dysphorias experienced euphorias overall [10, 14]. The four most dominant euphorias upon diagnosis (Category Validation, Difference Legitimisation, Knowledge Integration and Medical Sense-making euphorias) each appeared linked to overcoming adolescent Stage 5 identity formation crises [15, 16]—see Fig. 7.5. Stories cited in this paper underlined theories that without identity formation achievement in adolescence adults can experience barriers to happiness and role confusion. Body Positivity, Acceptance and Autonomous Control euphorias reflected how euphoria related to redress [17], extending this to health-care institutional redress. Body Positivity and Autonomous Control euphorias linked to the focus on will in Stage 2 of Erikson’s psycho-social development model [15, 16]; though redress of coerced or enforced bodily intervention around Stage 2 and subsequent (will-related) developmental difficulties occurred in later adulthood (post-infancy). For people with intersex variations their bodies (particularly sex characteristics not aligned with binary sex) can become objects health-care providers and families collectively projected unhappiness upon [18]; and literally moved participants away from [19] through coerced removal or reshaping ‘for (repressive) happiness’. Autonomous Control and Body Positivity euphorias for this group, then, acknowledged but subversively countered body negations. These euphorias celebrated transference of subjective control and de-objectification to non-traditional euphorically queer(/intersex) [19] identities and bodies.

Fig. 7.5

Ecological model of psycho-social influences on people with intersex variations’ diagnoses and post-diagnoses euphorias

Dramatic Change-trends

Intersex diagnosis euphorias included sudden, temporary, longer, or recurrent shifts away from pre-existing negative feelings from youth; sometimes followed by depression or mixed emotions. Post-diagnosis euphorias often a decade later evolved at a dramatic increase across the cohort’s reporting, changing with absorption of external ideas and social stimuli; the passing of time and/or increased positive feedback; monumental increases in control over social and medical treatment; and/or changing perception around how one fared relative to physical, socio-cultural and workplace ideals. Core changes in Microsystems and Macrosystems over the Chronosystem supported euphorias, reflecting relationships with material expressions of identity and possibilities of material change, and socio-cultural contexts, seen in TGD literature [14, 20]; and extending these findings to include time and perspectival-shifts. Euphorias also related to participants’ self-estimations compared to others, reflecting Ahmed’s argument that happiness is relative to social hierarchies [19, 21], and whether bodies belong to ‘insider’ versus ‘outsider’ groups—the fit versus unfit, loved versus unloved. Relative Gains and Fitness Edge euphorias expressed radical re-orderings of people with intersex variations’ bodies and identities in socio-cultural hierarchies above other types. These re-orderings fit Butler’s notion that transference of norms—in this case, of happiness associated with norms—to atypical bodies showed intersex euphorias do disruptive socio-cultural work [22, 23]. In sharing these disruptive euphorias for publication, participants ensured their wider re-ordering value, offering templates for euphorically intersex perspectives.

Significance & Limitations

This first study of people with intersex variations’ euphorias showed they may support wellbeing as for TGD people [20], and contributed towards undoing the identity-based foreclosures and stagnations theorists warn against [15, 19, 24]. Intersex diagnosis euphorias may aid people’s relationships to sex/gender development; and mediate knowledge and community seeking behaviours. Post-diagnoses euphorias may aid disclosures, overall contentedness, and positivity in self-accounts or comparisons. Body Positivity euphoria may aid people in pursuing improved personal treatment of their bodies, supportive health-care, and sexual/romantic and social engagements. The findings support existing calls for bodily autonomy protection in the Exosystem [8, 9]; body diversity positivity in the Micro and Macrosystems [25,26,27]; more affirming category and body information in Microsystem institutions [1, 4, 28]; and funding for support groups that promote positive body messaging and health autonomy [1, 9]. The cohort’s high representations of Androgen Insensitivities, PCOS-related Hyperandrogenism, and KS/47XXY reflect their wider prevalence [2]. However, this sample had low rates of dysphoria compared to other samples [12], limiting exploration of euphorias’ associations with dysphorias. There were no endosex participants and small diverse international cohorts; thus the study could not compare Australian intersex people’s impacts from Body Positivity (or other) euphorias, to endosex or international cohorts’ impacts.

Conclusions

Most people with intersex variations had euphorias usually after, not at, diagnosis. Euphorias aid more affirming feelings, relations, accounts, and actions around having intersex variations. Given that Body Positivity euphoria was most dominant for this intersex cohort, most linked to other euphorias, and a response to external ideas and social stimuli; it may be promoted. Increased body positivity themed intersex community events and texts; government funding and supports; and messaging in psycho-medical approaches and texts (e.g. revising the DSM-5-TR’s deficit-based frames for intersex people) may aid earlier and wider exposure to Body Positivity euphoria and its benefits. Future studies could consider if the euphorias seen here present for other cohorts, and explore body positivity resourcing interventions.