“A slow and unrewarding and miserable pause in your life”: Waiting in medicalized gender transition

Introduction: turning down without turning off

A spate of international newspaper articles on the glacial pace of transgender health care delivery may have reached its apex with word from New Zealand, where, due to budget limits and the lack of specialists, the waiting list for gender confirmation (or “sex reassignment”) surgeries reached three to five decades long in 2016. The Guardian quotes one anonymous transgender man who said he was “gutted” when the Ministry of Health told him his surgery would be scheduled in 32 years. He tells the newspaper, “I thought maybe the waiting list was 20 years, and I could have accepted that. But 32 years means it is never going to happen: end of the dream, really” (Roy, 2016). At some point, a waiting list can be so long that it voids itself—it is never going to happen, says the waiting subject, who ceases hoping for what he is waiting for. ¹ This article concerns lesser bouts of waiting, or waiting that “delays without destroying hope,” or “turns down without turning off” (Bourdieu, 2000: 228). The bouts of waiting for hormones and surgery I describe in this article, as chronicled by transgender vloggers on YouTube, manage at the same time to keep one out and also to keep one invested in.

Defined by Pierre Bourdieu (2000) as “the interested aiming at something greatly desired,” waiting acts on our relation to time, and thus to ourselves (p. 209). It “modifies the behavior of the person who ‘hangs,’ as we say, on the awaited decision” (p. 209). Of course, waiting is not inherently negative. In waiting, one can linger; one can savor. Waiting may be an opening into what Henri Bergson (1950 [1910]) called duration, the qualitative multiplicity of immediate experience. Waiting can break our routine sense of time and bring us to the uncanny, and even to “deeper dimensions of our being” (Schweitzer, 2005: 778). Slowing down can put a brake on the capitalist economization of time and its acceleration (Bissell, 2007), or on the familial and reproductive obligations of heteronormativity (Edelman, 2004; Halberstam, 2005), or on ableist pressures to be productive laborers and consumers (Kafer, 2013). And yet, waiting—defined as a delayed or deferred expectation of the forthcoming—can also be an experience of inequality. As Bourdieu (2000) has it, waiting can be “one of the privileged ways of experiencing the effect of power” (p. 228). Although experiences with gender transition are diverse, this article highlights the drawn out waiting that is commonly part of medicalized gender transition.

Gender transition can refer to social transition, physical transformation, or both. Many transgender (hereafter: trans) people do not seek medicalized assistance for transition, which can involve delays other than those created by medicine, such as waits involved in legal name and gender marker changes (Baril, 2016; Currah, 2014; Currah and Moore, 2009; Grabham, 2010; Spade, 2008). ² And irrespective of any institutional entanglements, the subjective experience of transition itself may involve waiting (Baril, 2018). But my focus here is on the temporality of trans people’s experiences with prescribed hormones and surgery. Medicine plays a powerful role in shaping the social and legal regulation of sex/gender, governing to a considerable degree not only how bodies can be medically altered (Spade, 2003), but also when. Waiting is both a common experience and a prevailing concern in medicalized gender transition. Advocates for transgender patients warn that waiting lists, structured delays, and other deferrals risk their mental health. The waiting that patients do often takes place in contexts of cisgenderism (transphobia), and reported rates of attempted suicide among trans people have put the livability of waiting into question (James et al., 2016).

Studies of waiting in other contexts raise prescient questions of its meanings and effects (e.g. Auyero, 2012; Conlon, 2011; Cooper, 2015; Turnbull, 2015; Vitus, 2010). How might waiting influence one’s dispositions toward the present, the future, and oneself? How is waiting managed, accepted, and contested by its subjects? What are its costs? This article explores the subjectifying and somatic effects of waiting in trans people’s social media narratives of medicalized transition. I highlight the lists, setbacks, refusals, and other delays recounted in trans video blogs, a form of social media that allows for chronicling experience over time. While the temporal management of gender transition is already a focus of clinical and advocacy discussions (Bauer and Scheim, 2015; Donati-Bourne et al., 2017), my article considers administered waiting from the vantage point of those who wait.

As Latham (2017) notes, knowledge about trans people has mostly been created by cisgender people, especially doctors (I myself am a cisgender scholar). However, in recent years, there has been a widespread proliferation of knowledge created by trans people themselves, especially on the Internet, that challenges “existing hierarchies of voice and agency” (Raun, 2018: 282). The vlogs I describe here are among a number of new genres that offer decentralized accounts of trans experience (Rawson, 2014).

A growing body of trans scholarship has theorized the temporalities of transition. I discuss this literature in the next section and cite some of the structural forces that influence the pace of medicalized transition. I then describe my methodological approach to finding and analyzing vlogs, before presenting key themes raised in these accounts. From the point of view of trans patients, the administration of transgender biomedicine is fraught with inconsistencies, interruptions, and indignities. By looking at the advice generated by trans people on how to wait, I consider some of the modes of subjectivity waiting may produce. These narratives suggest being made to wait is an experience of power relations that is capable of producing weariness, precarity, and “slow death” (Berlant, 2007) as well as resilience.

Transition time

Trans narratives are polyrhythmic, revealing multiple orientations to time (Amin, 2014; Israeli-Nevo, 2017; Sundén, 2015). The most familiar model for transition is the medical model, which holds out the fully transitioned, gender-legible body as its telos. The medical model “promotes regulatory, binary gender expression and denies access to medical procedures to those who fail to perform normative binary gender for their health care providers” (Spade, 2003: 18). Its normativity is temporal: as gatekeepers to medical technologies of transition, clinicians look for evidence of a consistent personal history, a past pointed in only one direction. They look ahead toward a single, legible gendered future that aligns the body with its “true” gender identity (Amin, 2014; Latham, 2017; Pyne, 2017; Spade, 2003; Sundén, 2015). In this model, transition time is supposed to move only forward; it does not “easily capacitate a backward move that undoes what has happened, or is about to happen” (Sundén, 2015: 213). Although trans people take up medicalization in complex ways, Jay Prosser (1998) has argued that the normative force of the medical model has done much to shape autobiographical narratives of trans people. A classic story of transition is a progressive one that reaches an end, with binary gender achieved.

One can find something of this linear temporality in social media narratives of gender transition, including the popular genre of YouTube vlogs on transition. This genre produces narratives of trans experience that reflect the vlog’s specific conventions and mediations. As Tobias Raun (2015) describes, the transition vlog is

a kind of diary with constant and continuous updates that typically focuses on tracking and mapping visible hormonal changes … [and] a site for autobiographical storytelling, and for constructing and archiving bodily changes in the longue durée as a slowly evolving structure (p. 366).

The most popular transition vlogs, which can have hundreds of thousands of viewers, tend to present a transnormative subject who has smoothly and successfully actualized a binary gender presentation through hormones and/or surgery. In her analysis of transition vlogs, Laura Horak (2014) identifies a temporality she calls “hormone time.” The temporal framing of hormone time is established with techniques such as retrospective slideshows, time-lapse videos, and dating systems that compress biographical experience into a progressive, goal-focused trajectory. A video may show the transformative effects of a year, or 6 years, of testosterone in a couple of minutes. “Hormone time” is “linear and teleological, directed toward the end of living full time in the desired gender” (p. 579).

Yet, since the 1990s, the trans movement has openly challenged clinical assumptions that “binary gender was the end goal of transitioning” (Cotten, 2014: 205). Trans subjects may instead embrace the indeterminacy of a transitioning body. Atalia Israeli-Nevo (2017) links trans embodiment itself to untimeliness, to “queer delays and ‘failures’” (p. 41), whose radical potential ought to be affirmed. In her auto-ethnographic account of transition, Israeli-Nevo describes being pushed by others to get on with it, to “advance” toward a more normative femininity that would make her gender intelligible. Israeli-Nevo pushes back, slowing down and staying “in between genders” where she is “not able to be fully read or categorized” (p. 30). She can mindfully embrace the present. In taking time, she writes, “one has a chance to halt and delay his or her futural aspirations regarding his or her identity and explore them” (p. 30). Eva Hayward (2010) describes this lingering in Bergsonian terms as emergence. Drawing from her experience on hormones, Hayward describes the transitional body as a “reactivated, refreshed, and resourced sensuous body” where new states are felt and experienced (p. 240). Hormone treatments can instantiate a new rhythm that refashions the body’s “tone, pulse, and pacing” in unpredictable ways (Hayward, 2010). ³ The temporal modes described in these accounts linger in the duration of becoming. As Jenny Sundén (2015) explains, “a focus on transition as a continuous, unresolved open-ended process enables an understanding of gender as parallel and overlapping temporalities” (p. 199).

However, gender liminality is not appealing for all trans subjects, and as Israeli-Nevo acknowledges, “Some trans subjects unwillingly take their time in transition because of a lack of resources, social neglect, and marginalization” (p. 45, emphasis mine). Not everybody who transitions wants surgery or hormones, but among those who do, many are denied outright through economic marginalization, legal barriers, poverty, or criminalization (Bauer and Scheim, 2015; Spade, 2008). For example, according to the United States Transgender Survey, the vast majority of trans people in the United States want hormones (78%), and less than half (49%) have ever been able to get them (James et al., 2016). Some use unlicensed hormone treatments and other do-it-yourself (DIY) methods. ⁴ Others scramble to be recognized as legitimate patients or consumers of neoliberal healthcare. Those with health coverage for transition-related care are most easily enfolded into the biomedical management of transition. Among these, only the most economically privileged are able to speed their medical treatments, for example, through medical tourism or paying out of pocket (Latham, 2017). In the United States as well as the United Kingdom, waiting lists can be 3 years long (James et al., 2016; Morgan, 2015); it is usual in Canada to wait up to 5 years for a gender confirmation surgery (Frohard-Dourlent et al., 2017). Structural impediments, including waiting periods, financial barriers, and lack of providers, also slow access to hormones. ⁵

These obstacles vary between national healthcare systems, and it is beyond the scope of this article to offer a comparative account of trans healthcare. But broadly speaking, in the United Kingdom and Canada, where transition procedures are publicly funded, waiting lists are lengthy due to limited facilities and providers. In the United States, private health insurers and public programs for the poor vary widely in coverage; the lack of consistent coverage has negatively affected the availability of services. ⁶ In all three countries, screening criteria or “credibility tests,” along with delays in access to mental health services, can further draw out medicalized transition (Budge, 2015; Hilário, 2017: 568; Latham, 2017; Morgan, 2015: 124). Although strict psychiatric criteria have been challenged in recent years and a broader set of mental health professionals now screen for hormones and surgery (Dowd, 2016; Lane, 2018), access is limited in many places, with waiting lists to get mental health referrals. Furthermore, the institutionalization of delay in transgender medicine has been promoted transnationally through the World Professional Association for Transgender Health’s (WPATH) Standard of Care. From 2001 until 2017, WPATH recommended a structured delay called the Real Life Test or Real Life Experience (RLE) (WPATH, 2017). Invented in the early 1970s, the RLE requires an individual to live full time in their affirmed gender for a year or more before being prescribed hormones or surgery. The RLE treats delay as positive and purposeful rather than negative and inadvertent. It is still widely used to confirm an individual’s candidacy for medical transition.

Linear trajectories of transnormative progress obscure these temporal realities. But the tremendous outpouring of transition narratives on the Internet makes possible “a polytonality and a complexity” not seen in other mediums like the published autobiography (Raun, 2015: 371). While some vlogs emphasize arrival and achievement, others take up a different temporal register, representing the “getting by” of months or years in transition, as well as the discontinuities and frustrations of delay. My discussion below centers on the situation of those who desire or need biomedical transition, who are subject to its institutional management, and who are made to wait. For them, waiting is less an experience of queer duration than one of neglect, punishment, or work. Time can drag on, waiting can seem endless, and the future can appear uncertain.

Methods: viewing and interpreting transition vlogs

There are hundreds, if not thousands, of vlogs on gender transition on YouTube. For this study, I was interested in how trans vloggers address the issue of waiting. I searched YouTube for a combination of gender transition keywords (including trans, female to male (FTM), and male to female (MTF)) and time-related keywords, such as “waiting,” “wait times,” “delay,” and “timeline.” I chose the first 10 gender transition vlogs that used one or more of the time-related keywords in the titles of their individual videos (or “postings”). I viewed and transcribed multiple postings from each of the vlogs, taking notes on temporal aspects of transition. I created categories related to time and waiting and coded the notes and transcripts based on common themes, such as descriptions of timelines, reasons for delays, emotional costs of waiting, and advice on how to wait. In addition, to better appreciate the “longue durée” of transition, I followed one of the vlogs, Cathy’s, much more extensively: I viewed and transcribed relevant passages from the first 57 videos she posted over a year and half. I later went back to the vlog for updates posted through the end of the second year.

As my analysis is focused on time-related issues, I do not capture the breadth of the vloggers’ experiences with medicalized transition in general. Furthermore, this small set of vlogs cannot be taken as representative of the genre; even in this group, there is considerable diversity in age, gender, and national context. On the latter point, the vlogosphere on YouTube is transnational, segregated more by language than country of origin. My Anglophone search yielded vlogs from the United States, Canada, and the United Kingdom. The vloggers discuss different healthcare contexts—for example, some reference the NHS (National Health Service in the United Kingdom, where some procedures are publicly funded). Others from the United States describe saving up and fundraising to pay for surgeries on their own. The vloggers I followed often assume a transnational audience, speaking directly to disparities across viewers’ circumstances. Despite the differences, I found commonalities in the depictions of both the sorts of waiting that trans patients do and the ways in which their waits are narrated and experienced.

Internet research raises particular ethics considerations. With respect to gender transition vlogs, Raun (2015) notes the tension between the need to, on the one hand, credit vloggers with their social and technical expertise and, on the other hand, minimize any unforeseen risks of publicizing them in a different format and to a different audience. Vlogs are public and can be widely disseminated. The individual postings I transcribed have been viewed as many as 19,810 times, and as few as 176 times. Yet some vloggers assume that only “like-minded people will view their videos,” and may believe that the “sheer volume of information available online” gives them some de facto anonymity in public (Stein, 2016: 44). To reduce any potential risks for individuals, I have anonymized the accounts cited here. I use pseudonyms and do not name the vlogs, vloggers’ city of residence, doctors, or clinics. Titles and subtitles of vlogs have been changed. ⁷

Internet research also raises questions of authenticity. Vlogs are sites of digital knowledge sharing, but they should not be understood as fonts of unvarnished truth. Instead, vlogs are constituted as performances that are at the same time “self-making” and “self-branding” (Stein, 2016). The digital presentation of self that is accomplished in vlogs is crafted in the context of the culture of the vlogosphere and often rehearses its conventions and norms, which sometimes include the drive to expand one’s exposure and reach. Like some other genres, transition vlogs are invested in self-production, but they also “animate and motivate others to dare to be visible” (Raun, 2015: 365). They produce subjective, trans- and patient-centered accounts of medicalized transition time. In addition to serving as “popular pedagogies” (Pitts-Taylor, 2004) for sharing information and expertise, the vlogs I cite here can be thought of as part of a digital archive of storytelling about transgender embodiment.

Below, I focus on several themes that emerged across the vlogs. First, I highlight the depiction of medicalized transition as a “waiting game” that can produce an unwanted experience of liminality. Second, I highlight a stuttered process of “fits and starts,” which keeps one “in” and “out” at the same time. Third, I address the personal costs of waiting, which at their extreme can point to a necropolitical underside of biomedical gender regulation. Finally, I list some of the strategies vloggers offer to others in the form of advice. As instruction on how to wait, these narratives point to some of the potential subjectifying effects of administered delay.

The “waiting game”

The narratives I analyzed treat waiting as both widespread and commonplace in gender transition. For example, Christopher depicts waiting as a universal experience for trans people: “Waiting,” he says, “we’ve all done it, and we’re all doing it, and I’m still doing it.” Christopher has experienced multiple bouts of waiting over a number of years, from the start of his gender transition as a teenager through hormone treatment and surgery. He explains,

I did a lot of waiting, waiting, waiting until I was 18 until I could transition … I waited for my first gender appointment and I didn’t get into the program. And I waited and waited and waited for a therapist and I waited for my T letter and I waited for my endocrinologist and I waited so long for top surgery [bilateral mastectomy and chest reconstruction], and now I’m here again waiting for my name change and my gender marker change … It’s a waiting game, and we all need to learn how to wait and be patient.

Christopher’s 14 uses of variants of the term “waiting” in this passage underscore how routine and repetitive waiting is. One waits—we have all done it, we are all doing it, waiting still goes on. The screening, queuing, and wait lists add up. The whole experience, in fact, is reduced to a “waiting game.” Remarks like these can give the impression that transition is as much about waiting as anything else. Waiting is not unexpected or anomalous; it is not unpredictable, accidental, or merely unlucky. Rather, waiting is inevitable; it structures the process.

Despite its ubiquity, waiting is sometimes difficult to accept as an aspect of transition. In a post about the difficulties of dealing with the pace of transition, Cathy explains,

All these delays … Oh my god, total frustration frustration frustration … You know, it’s just like I pass a goalpost, the goal posts move back. So the tunnel’s lengthening. You can see the light, going down the tunnel, and someone’s adding f-ing extensions on the tunnel. So the light’s still there but you have to go that bigger distance.

The term frustration is one of the words Cathy repeats again and again. One is frustrated when there is a prevention of the progress, success, or fulfillment of something. Frustration is also highlighted in Frank’s vlog. In a posting addressing the difficulties of accessing medical services, Frank says,

Dealing with waiting times is the worst thing about transition … It’s horrid, and I’m still not out of that myself. I’m waiting for second stage lower surgery, I was told 3 months, looks like it’s going to be 9 … yeah well used to this frustration of waiting waiting waiting waiting.

Similarly, in his post about waiting on a channel for trans guys, Caleb says, “Whether it is waiting for surgery, or waiting for testosterone, or waiting for insurance … there is so much waiting that has to do with transition that it could drive you crazy.” In a posting about awaiting a prescription for hormones, Ava sums it up this way: “waiting sucks.”

In these accounts, waiting is consistently described in negative terms, in part because of its association with social immobility and unintelligibility. The broader literature on waiting describes it as a liminal state of not-yet, which can impair or forestall a secure identity for those who are made to wait. David Seitz (2016) describes how asylum-seekers in Canada must live with an “identity that has yet to be authenticated” (p. 443). Not sure whether they will be recognized or denied official standing, they experience in waiting what Seitz calls a particularly “queer precarity” (p. 443). Catherine Vitus (2010) shows how waiting among asylum-seekers in Denmark creates anxiety and uncertainty about the future, which “rips away the possibility of existing as a social being” (p. 40). One waits in a “categorical trap” of not-yet belonging. A gendered version of this trap is depicted in some narratives of transition. Frank reports being “stuck between two worlds—no longer identifying as female, but not yet read consistently as male.” This condition is perilous to the degree that recognition of one’s personhood hangs on gender intelligibility (Butler, 1993, 2004). Cathy, for example, pleads for hormones and surgery not only to relieve dysphoria, but also to prevent stares and harassment on the street and at work. “It’s not just what you feel, it’s how people can make you feel,” she says.

I discuss below how the “queer precarity” of waiting is furthered by the challenge waiting poses to one’s sense of agency. But first, I take a closer look at Cathy’s transition timeline to explore how its rhythms of waiting produce contradictory feelings of optimism and despair, anticipation, and doubt—in other words, how waiting keeps Cathy out and in at the same time.

Fits, starts, stops, errors

The barriers and delays of transition can be grasped over the course of many posts where waiting is a recurring theme. Cathy’s vlog describes one queue after another and shows how one delay can cause a series of others. Cathy “takes her time” narrating events—she speaks slowly, reports various feelings as she remembers them, goes on tangents, and fills in backstories. Many of her postings are over 20 minutes long. I constructed a timeline of her chronicle of transition, which I offer below, but it belies the experience of watching her narrate her transition over many hours, during which she reflects, detours, and rehearses events.

Cathy is middle aged, works in retail, and is dependent on the NHS for health care. Her ultimate goal is genital surgery, which is to be preceded by hormones. In her first video, at 44 years old, she has already been waiting for several years for the psychologist’s clearance that will allow her to begin hormone treatments. Her case had been complicated by a mental health diagnosis, but she has finally been given the go-ahead to start hormones. Still, she says, “Everything seems so far off.” This turns out to be prophetic. Cathy waits another 3 months for the endocrinology appointment when she will be prescribed an initial hormone regimen. Meanwhile, Cathy’s postings address various challenges related to transition, such as discrimination from customers at work, struggles with self-presentation, and dealing with facial hair.

Eventually, Cathy sees the endocrinologist. After she is taking hormones for a few months, Cathy gets the requisite blood test to check her hormone levels. However, in the first of multiple errors made by the health care system, the lab loses the results of her estrogen levels, and she must retake the blood test, and wait again for the results. She warns viewers:

You think there’s going to be one course of action, one set of events, and there’s a tangent that goes off one way, and a tangent that goes off that way, and you’re like, well I wasn’t expecting that!

Based on the new results, the endocrinologist sends a letter approving an increase in her dosage. She is supposed to take this letter to the gender clinic. But in another annoying delay, the letter is sent to the wrong address, and so it never arrives at her home. After waiting many weeks, Cathy investigates and is able to get a new letter to bring to the gender clinic. This allows her to be prescribed a hormone dose increase; a certain threshold must be reached before she will be advanced to surgery candidacy.

Cathy must wait for another 8 weeks for blood work to check her new hormone levels. Unfortunately, she says she knows the results will come too late to make a difference at her next gender clinic appointment, which had already been scheduled months in advance. Only at the following appointment, another few months later, can she discuss the new levels, upon which next steps in the process depend. Along the way, Cathy shares her feelings, explaining in various ways that waiting is trying and is made even more difficult when she experiences harassment. But she is self-conscious about sounding negative or pessimistic. She apologizes to the viewer for “doing your head in,” but she wants “you to see the realities of what it is that we go through.” She says, “transition isn’t just a simple, straightforward journey … you get frustrated because of the fits and the starts, all the stops, all the errors …”

In October 2017, Cathy marks a year on hormones. At this point, she is still waiting for the surgery referral; she says she hopes it will come in December. Once the referral is given, she will wait to see the consultant. After this appointment, if all goes well, she will be placed on the waiting list for surgery. Still stinging from previous errors and worried about further delays, Cathy sums up this last concatenation:

putting off the referral letter then puts back getting the appointment with the consultant which then puts back getting on the waiting list with the consultant which then puts back you having the surgery which then ultimately puts back you going about your life fixed.

In December, she finally gets approval letters for surgery, an event that she reminds viewers she has been “dreaming of for so, so long.”

Surgery, it will turn out, is still half a year away. In late February, Cathy is notified of an appointment to see a surgeon. She recalls receiving a text message at work. She is on her break, sitting with her store manager, when she notices the message on her phone instructing her to report to the city hospital the following week. At first, she says, “I had so many butterflies, felt sick in the stomach, I was literally jumping. I thought this can’t be real.” By the next day, she felt “no such excitement, no butterflies, no nervousness …” Instead was a feeling of dubiousness:

Let’s see if it actually goes ahead. I’ve planned things before and they’ve been put off … don’t get your hopes up … I’m used to things not going how I expect them.

In March, she meets the surgeon. Cathy is excited, but cautious. She does not imagine the surgery will be scheduled until at least May. By the end of May, she is “counting down” to the surgery. Yet only 2 weeks before the scheduled surgery in June, Cathy says: “I’m still not holding my breath.” At this point, Cathy is still invested in the wait, but she is aware of a feeling of hanging on. She is experiencing fatigue at being invited to participate, being asked to plan and commit, and being denied at the same time.

Everyone waits, of course, but the relation between expectations and the chances of their happening is not the same for everyone. For some, passage from A to B to C is speedy and uninterrupted; others meet a “signposted universe, full of injunctions and prohibitions, signs of appropriation and exclusion, obligatory routes or impassable barriers” (Bourdieu, p. 225). The circuitous path Cathy is made to take—what she describes as “a journey of plateaus, dips and highs”—does not ultimately deter her. Instead it variously generates feelings of hope, worry, anticipation, and incertitude, along with frustration and dejection. She says,

You get extra frustrated because of the impatience. And that can help get you down and turn you in on yourself more, because you want to be further on, and you should be further on but you’re not for whatever reason.

For Cathy, the tunnel feels long, and when she finally thinks she is near the end, the tunnel gets longer. Her hopes are lifted and then dashed. The bureaucratic errors only exacerbate the sense she feels of having no control over “going about” her life and getting it “fixed.” Eventually, she suspends hope and excitement in order to prepare herself for yet another letdown.

The personal costs of delay

Waiting for transition taxes people in different ways. The process feels punishing for Cathy. For others, it seems like degrading work. After receiving a testosterone prescription after a two-and-a-half-year wait, Sebastian says,

For me it felt like such a long wait … I feel like I worked my ass off to get it, traveling, going to so many appointments, just working so hard to please all the people that give you testosterone, I felt like an animal being given a reward for jumping through all these hoops … And it shouldn’t feel like that, but it’s genuinely what it felt like.

The process feels dehumanizing for Sebastian in part because the demands appear to be unjustified. Complying with gatekeeping practices, or “pleasing” gatekeepers, is effortful but in his view meaningless—merely jumping through hoops. Budge (2015) argues that this is a common experience for patients who have to pass through gatekeepers; the psychotherapy referral process can feel forced, involuntary, and inauthentic. Referring to access to hormones, Sebastian argues, “You shouldn’t have to work so hard to get something that should be natural to you.” In a similar vein, Christopher says, “it’s not fair to ask us to be patient, because we have to go through so much dysphoria and so much bullshit … when you’ve waited 8 years for top surgery it kind of stabs you in the back a little bit.”

Jason, an 18-year-old aspiring journalist, uses similar terms to describe the wait. Having socially transitioned 3 years before, he describes being referred to the gender clinic in a nearby city by his psychiatrist. After the referral, Jason waits 10 months to get an appointment, only to find out that he never made it on the waiting list at all. He compares this to playing the board game Snakes and Ladders, where the object is to get to the 100th square: “you get to square 77, then you bloody get a snake and you go all the way back down to square 1.” Jason says,

I was so angry and upset. I thought I’d been waiting all this time, twiddling my thumbs … That was really hard … it’s very painful because you’re not in control of your own medical transition. You’re not in control of your own body. You have to jump through all these hoops and it’s so irritating and frustrating … It’s very painful waiting around for health care that you need for a medical condition.

For Jason, “waiting” means engaging in a process that is supposed to move him forward; instead he waited uselessly, not even in the queue. Jason uses similar imagery to Sebastian’s to describe what he sees as having to take unnecessary steps to get what he needs. He says,

I’m waiting, other people are waiting; it’s just a slow and unrewarding and miserable pause in your life. You’re just stuck, and you can’t jump over the hurdle.

To be stuck is to be held, caught, wedged, or trapped. One’s agency is suspended, one is denied control, motion, or purposeful action. As Bourdieu argues, our embodied, tacit sense of the “imminent forthcoming” is necessary for practical action in the world. Our ability to act effectively depends upon our capacity to reasonably anticipate the future. In the absence of a known future as a point of reference, it is difficult for people to “care for their own being and becoming, or for the world” (Vitus, 2010: 40).

Bourdieu claims that at stake in waiting can be “the question of the legitimacy of an existence, an individual’s right to feel justified in existing as he or she exists” (Bourdieu, 2000: 237, cited in Vitus, 26). Indeed, for some, waiting is not just a miserable experience; it feels unbearable, even lethal. Horak (2014) calls transition vlogs “lifesaving” because they take place against a backdrop of high reported rates of attempted suicide among trans people—40 percent or more in some studies (Bauer et al., 2015; James et al., 2016)—and trans subjectivity is now discursively linked to self-harm and suicide (McDermott, 2015; Roen, 2018; Sadjadi, 2013). ⁸ There are many references to the deadliness of waiting in the vlogs I followed, such as,

Waiting to transition medically is absolutely deadly for trans people. (Jason)

Waiting for top surgery was a grueling process … The wait seems like it can kill you, but I guarantee you it’s going to get better. (Caleb)

I’m waiting on my top surgery now. It’s killing me. I have to wait but I’m not coping so well. (Viewer commenting on Caleb’s post)

This waiting to transition is literally killing my psychological health and my general image of myself. (Owen)

The last quote by Owen, an American vlogger, is delivered in an especially poignant posting called Psychological Downsides of Awaiting Transition. In this video, Owen breaks down crying and says his will to live is “at ground zero.” Owen is trying to fund his transition and has no sense that his wait will be over any time soon. He tells viewers, “I’m not going to do anything stupid like off myself or anything, but this constant waiting has just become unbearable.” For Owen, the future is dangled out in front of the present, but it is withheld, or made precarious.

How to wait

With the tolerability of waiting in question, veterans of transition often mentor viewers in how to wait. Advice postings have titles like MTF: How to Wait, Tolerating the Delay, and Dealing with the Long Wait to Transition. Many of the advice videos begin with the instruction to accept one’s powerlessness over waiting times. Life is made frustrating and uncertain through the loss of agency, which includes a loss of control over one’s time, but Caleb warns viewers, “Transitioning is the greatest lesson in patience.” Patience involves tolerance of delay, a capacity to bear it without becoming overly troubled. Accepting the wait may be preferable to railing against it, in part because one might be able to bracket the activity of waiting in favor of doing something else. Christopher says, “I’m now in the mind-set that I have no power over this. I literally cannot do anything about this. So I need to keep myself busy with other things.”

The acceptance of waiting may coincide with awareness of one’s social status. Sebastian warns his viewers, “Being trans, waiting is something you will have to do.” One waits as a trans person; being trans means having to wait. Medicalized transition is thus an education in what one is allowed to expect and when. Trans patients must “recalibrate” their bodies and psyches to institutional time by curbing their expectations and decelerating their plans (see Sharma, 2014). This recalibration is linked up with a sense of one’s social recognition or lack thereof. Like the waiting Javier Auyero (2012) describes that poor people do when they seek help from the state, the message is “not one of respect but inferiority” (p. 21). Those who do wait successfully learn how to be compliant, to earn their access by doing the “work,” or “jumping through hoops,” as an aspect of a marginalized identity. Slowing one’s expectations requires affective and cognitive adjustments—tamping down expectation, hopefulness, or anticipation and adjusting one’s temporal orientation.

Mentoring others suffering under the wait, Christopher, Frank, Billy, and Sebastian advice people to transform their subjective experience of transition time. For example, they suggest setting interim, achievable goals such as checking in monthly on the status of referrals. This will not objectively speed things, but it will cut up the long timeline into a series of smaller ones. Frank links powerlessness and such small acts of agency:

If there is something you can do, do it. For example, I was waiting for a referral, so just to make myself feel better or involved I would ring up once a month and say, hello, I’m waiting on a referral, can you give me any more news. And that was all I could do. Now I could kick, scream, cry, what have you, but it wouldn’t change the fact that the waiting time was there. This is what I mean by accepting your powerlessness … what you can do is use your time while you’re waiting in a better way that serves you.

Checking in on one’s spot in the queue every month revises the subjective timeframe from a long, unspecified wait to a more calculable one. Relatedly, Caleb advices downloading a countdown app, which would bring to mind duration’s continual reduction. These cognitive switches render one “involved” without changing the objective interval. They work on the subjective experience of how time passes.

To accept the wait also frees one up to use one’s time differently. In these vlogs, veterans of transition advice those waiting to further aspects of their transition outside of the medical regimen, such as working on clothing, voice, or (for men) body sculpting in the gym, and coming out to family and friends. Billy, a popular vlogger whose postings cover a range of themes beyond transition such as men’s fashion, says, I’m not “sitting there waiting for the postman everyday for a letter that’s never going to come.” Instead, he is working on his self-presentation, shaving his face every day “even though clearly I don’t need to,” and building up the confidence to use the men’s bathroom. Undertaking such activities may sometimes amount to distraction from the wait, but they also decouple transition from medical control.

Posts that counsel patience often urge a futural orientation in order to promote resilience. Mentors advice those suffering the wait to repeatedly remind themselves that they will get to their destination. Keep telling yourself, as Sebastian puts it, “You’re gonna get there one day.” Or as Ava says,

The wait is part of the process, as much as it sucks, as long as you have your tunnel vision, understand it’s going to happen one day, understand life is going to be so much better, that life is going to feel so good once you start taking those hormones …

The reassurances are powerful because of the relation between the livability of the present and the ability to imagine a realizable future. As Raun (2015) notes, an “important part of and motivation for ‘documenting’ the present is the wish for and anticipation of producing evidence of an evolving and growing self, a self that feels better in the future” (p. 359). By continually invoking a transformed future that has not yet arrived, one can resist what Jose Muñoz (2009) calls “the stultifying temporal logic of a broken-down present” (p. 12). The futurity advocated here is pragmatic rather than utopian. It accepts the given world as it is while keeping the “tunnel vision” trained on what it is to come.

Biopolitics and its underside: investing in, wearing out

Trans people seeking medicalized gender transition are often inducted into a long-term queue for screening, diagnosis, and treatment, in exchange for a promised future of body–self alignment and expanded social recognition. Then, many of them wait through lags, delays, and frustrations with the expectation of arrival, at some point, at an agreed-upon destination. The advice offered by veterans of transition may indicate some of waiting’s potential subjectifying and somatic effects on individuals. Trans patients living in the queue may find it necessary to learn a new level of tolerance, accept institutional priorities, and modulate their expectations. Those who are waiting for care from clinics and providers are asked to ascertain and accept their status, which they experience as lacking in power, autonomy, importance, or even legitimacy. In these accounts, trans patients act on themselves to bear the loss of control over their time and transitions, and to assert agency where they can. Such self-work includes modulating one’s temporal orientation—shifting one’s timeline horizon from years to down to months or weeks, while simultaneously constructing a sense of cautious optimism, holding onto the future. The self-work described here also incorporates other affective and cognitive modifications of attention and habit, described in terms of keeping busy, getting on with life, and working on the body and self-presentation. The work of doing gender under the medical gaze is a common experience for trans people (Latham, 2017; Prosser, 1998; Roen, 2018; Spade, 2003). But these accounts highlight gender work shot through with a frustrating sense of invisibility, when the medical gaze is ignoring or overlooking them.

Complying with institutional expectations and demands despite feeling left out of its orbit of care requires continual reassessment of and recommitment to the process. Staying in the queue, in other words, is work. The accounts here point not only to the production of modes of trans subjectivity and affect, but also to the agentic capacities of individuals and “networked publics” (Raun, 2018) to endure and manage institutional constraints. The decoupling and recoupling of gender transition to medicalization in tune with institutions’ varying responsiveness is one such example of expressing agency within a temporal scene of constraint. The act of creating a public, digital narrative is another expression of agency; vloggers and other online actors create and exchange alternative expertise and build networked relations, while choosing how much to share and withhold (Raun, 2018; Roen, 2018). There are additional practices undertaken by trans people not addressed in the postings I followed, such as DIY hormones and other appropriations of biomedicine. My focus on waiting in this article limits my discussion to investments in medical treatment that endure despite the frustrations. The narratives here further suggest more or less acceptance of the “pressures of neoliberal subjectivity” (Roen, 2018: 4; Ahmed, 2010), which include self-care, self-cultivation, and generating positive affect related to transition within the contours of institutional timeframes.

The waiting trans patients do must be situated in a broader biopolitical context that can be characterized as profoundly unequal, in which there is a “symbiotic co-presence of life and death” (Haritaworn et al., 2014: 2). The institutional practices and processes that produce waiting can be understood as part of the biopolitical apparatuses of regulating life for some transgender people, against a backdrop of social neglect of and violence toward others. Biopolitics enacts a speciation of life through its sorting, classifying, and administering the inclusion of some bodies and subjectivities, while leaving others abject or illegible. As Susan Stryker (2014) notes, some trans subjects

now find themselves hailed as legally recognized, protected, depathologized, rights-bearing minority subjects within biopolitical strategies for the cultivation of life from which they previously had been excluded, often to the point of death (p. 40).

Within the “hierarchizing schema” (p. 40) of biopolitics, trans people who become patients of medical systems are moved “toward emergent possibilities for transgender normativity” even while others—poor, racialized, undocumented, or otherwise marginalized—are consigned to “decreased chances for life” (p. 41; see also Aizura 2014). Therefore, the queues and delays I have described here are in fact relatively privileged circumstances within the biopolitics of trans/gender. Yet, I have argued here that the excessive hoops to jump, protracted waiting lists, and other indignities can amount to being turned down without being turned off. They suggest a differential inclusion into biomedical citizenship (Pitts-Taylor, 2011; Puar, 2011), which delays rather than denies (Lane, 2018) and marginalizes rather than excludes.

The narratives here point to significant suffering by some trans people whose lives are “miserably paused.” Owen’s account directly speaks to a loss of will to live, which aforementioned statistics suggest is not a rare experience. Scholars have also noted a broader media discourse equating trans and queer youth with risk, self-harm, and suicidality (McDermott and Roen, 2016; Roen, 2018). The etiology of trans suicidality is often reduced to either psychological or social causes (see Baril, 2017 for critical discussion), with little discussion of the role of medicine other than as heroic savior from gender dysphoria (Sadjadi, 2013). The public focus on queer suicidality elides the question of “what kinds of ‘slow deaths’ have been ongoing that a suicide might represent an escape from” (Puar, 2011: 152).

Slow death, in Lauren Berlant’s (2007) formulation, refers to the debilitation of being “worn out by the activity of reproducing life” (p. 759). Slow death is the “structurally motivated attrition of persons notably because of their membership in certain populations.” It represents “neither a state of exception nor the opposite, mere banality,” but rather the interweaving of debilitating conditions of existence into ordinary life (p. 759). Getting by is tough; there is chronic dissatisfaction, uncertainty, or anxiety. The future is dangled out in front of the present, but it is withheld. The things one does to make life work render it unworkable; the texture of things, to paraphrase Muñoz (2013), becomes too threadbare to hold. Waiting can be grueling and debilitating. It can wear people out and increase their precarity.

Coda

According to The Guardian, the New Zealander who faced a decades-long wait for publicly funded surgery left the queue (Roy, 2016). But lesser bouts of waiting can be managed, and they do end. In Cathy’s most recent posts, about 2 years since she began chronicling her transition, she has undergone surgery. She is filming herself from the hospital bed, chronicling her recovery. Wearing a hospital gown, she describes at length the physical demands of surgery, including swelling, bruising, and discomfort. She says that it is painful to sit, to move, and to walk. Her body hurts enough to make her cry often. She faces days or weeks of this, what she describes as “a steep incline of pain.” Tellingly, though, she remarks: “A steep incline of pain. But that’s better than nothing.” ⁹ Cathy does not explain what she means by better than nothing, but I interpret this phrase in the context of her description of what it feels like to wait over months and years of transition, which highlighted the difficulty of holding onto a sense of purpose, the feelings of pointlessness, and the diminishment of social status. Physical pain is something. The nothing of waiting can be worse.