Fourteen participants were recruited to the study. Participants’ self-reported demographic information can be found in Table 1. We present three interconnected discursive considerations: (i) feeling lack of structural compassion, (ii) 2S/LGBTQ + communities as places of respite, and (iii) 2S/LGBTQ + caregiving (Fig. 1).

Table 1 Participants’ self-reported demographic informationFig. 1

Interconnected discursive considerations of compassion

Feeling lack of structural compassion

When we refer to ‘structural compassion,’ we mean something similar to the concepts of structural competency and organizational compassion. Structural competency refers to the trained ability to discern the ways in which people’s health statuses and related attitudes “represent the downstream implications of a number of upstream decisions about matters such as healthcare” [35], p. S140). That is, health and wellbeing occur within sociopolitical and economic contexts and are impacted by the actions of decision makers at the upper levels of social and institutional structures. Marginalized groups are disproportionately negatively impacted by these upstream decisions. Organizational compassion refers to the efforts of organizations and institutions to embed ethos of compassion within their policy objectives and operational procedures [36]. While participants recognized that individual healthcare practitioners have an important role to play in providing compassionate healthcare, they often contextualized clinicians’ ability to do so within larger systems and organizational structures. For example, Analetta, who identified as a nonbinary lesbian, commented, “I think a lot of people in positions of power that have the ability to make change lack understanding and compassion for queer people.” This comment shapes Annaletta’s knowledge that individuals who can enact transformational changes in healthcare often show an inability to show compassion, or a lack of knowledge of the need to show compassion, towards the experiences of 2S/LGBTQ + individuals.

When asked, almost every participant stated they felt the main barrier to structurally compassionate eating disorder treatment settings was the cis-heteronormativity ingrained in healthcare systems. Participants connected cis-heteronormativity to inadequately compassionate care and unilaterally described such attitudes and beliefs as fundamentally antithetical to compassion. Dina, a queer cisgender woman, expressed,

I feel like it (compassion in eating disorder recovery) is relevant in how heteronormative all of my eating disorder treatment was. When I was first diagnosed, there was a huge emphasis on, didn’t I ever wanna get pregnant? Didn’t I wanna have relationships (with men)? All of a sudden, that was the pathology. That was the proof of disorder.

In the quotation above, Dina described an experience which she characterized as uncompassionate. She felt that clinicians were appealing to her future to motivate her in recovery, but the examples they offered were heteronormative, making Dina feel as though her 2S/LGBTQ + identity was pathologized more than her eating disorder. Dina recognized that, at the point of care, she was positioned amid discourses of cis-heteronormativity in healthcare; she was made to feel that her romantic and sexual attractions, fertility, and, ultimately, her bodily autonomy as a 2S/LGBTQ + person were ‘othered’ and, as such, in need of correcting.

Dina further described her how exclusionary her eating disorder treatment and resources were for her, noting that.

I do think that the conventional inpatient treatment and in books—like, love your curves, love your body, let’s have role models for you that are all incredibly feminine and straight. And also, just very white, and young and middle class was so foreign that I couldn’t … I hated it. It wasn’t just that I couldn’t relate to it, but I felt like I so … Like, I couldn’t take people seriously. Like, you’re clearly not taking me seriously that I can’t stand my body and I’m uncomfortable with it, and you’re being like, ‘you’re beautiful!’ and like, that’s not even …. that’s not even in the same language.

Such cis-heteronormative discourse within treatment and resources can, as Dina described, be exclusionary and unrelatable for many 2S/LGBTQ + , especially those who are not white nor thin.

Mary, who identified as a cisgender lesbian, offered another example of discourses of cis-heteronormativity in healthcare settings,

It’s about understanding that we live in a heteronormative society. When you’re queer, you’re the outlier. You’re not the standard, the norm. I think to be compassionate would be to reframe your language. For example, when I access healthcare, a lot of times people assume I have a male partner. And that’s really hurtful for me. I don’t usually make a big stink out of it because I’m just kind of used to it.

Like many of the other participants, Mary’s knowledge about herself and the care that she received in her eating disorder treatment settings was informed by discourses of cis-heteronormativity ingrained in healthcare systems. She believed disrupting discourses of cis-heteronormativity through practices of reframing language within care would be helpful.

Many participants shared that they often found themselves strategically concealing or modifying their gender expression and sexuality, or controlling the extent of information about these aspects they disclosed to their healthcare providers. Further, they felt those decisions were dependent upon the context, environment, and their in-the-moment assessment of the attitudes of the people with whom they were speaking. Dina, when asked how she defines her gender, stated,

When I’m acknowledging privilege, I’ll say that I’m officially cis. You have to look at what community [you’re among] and decide, yeah, it’s safer here to say that ‘I’m relatively cis.’

Dina made her decisions about how much of her gender identity to express based on her knowledge of the relative safety of the situation she was in. When asked about their experiences with altering or concealing their gender identities and/or sexualities, participants consistently reported they often assessed eating disorder treatment settings as being unsafe. Several participants elaborated, stating that they felt the primary reason for believing treatment settings were unsafe were the cis- binary gender normative practices they experienced within these settings. Dina further commented that.

…Entering eating disorder treatment was one of the strongest times when I was aware of gender norms because it’s such a gendered environment. I became aware that, as a woman, I should have a body image when I didn’t before. I was just a kid. Suddenly, there were questions about my body as a female body that did not ring as relevant to me. And then just how gendered both healthcare and eating disorder care is, constantly being called a girl and having passive femininity demanded of us all the time. It seemed so intrinsic to it being a feminine diagnosis.

For Dina, the gendered nature on the hospital environment and eating disorder care created knowledge about her body that she previously did not have. Similarly, Jodie, who identified as pansexual and nonbinary, described another experience of gender assumptions in eating disorder care,

I feel like they [psychologists] were like, well, if the bulk of what’s happened to you happened when you were 16, then that’s just the teenage girl experience.

The gender normativity Dina and Jodie experienced in eating disorder recovery settings was based in discourses of cis-heteronormativity, which made those places unsafe for expressing their genders and sexualities authentically.

Several participants offered suggestions for improving 2S/LGBTQ + structural compassion in eating disorder recovery care. Among these suggestions were targeted 2S/LGBTQ + training and education for care providers, and trauma-informed approaches that acknowledge the harm and trauma suffered by 2S/LGBTQ + people as a result of societal cis-heteronormativity, colonialism, racism, homophobia, and transphobia to procedures and policy. Briar, who identified as queer, nonbinary trans, commented on staff training with respect to compassion, stating,

Hire more people who are competent in dealing with eating disorders from a lens that incorporates gender and sexuality beyond the cis, straight, white, skinny female. We need to get beyond that, and I think that until you start staffing people who are competent in those areas, you’re setting it up for failure. In terms of the hiring process, the training process, people need to be more informed because otherwise you’re just forcing queer people to provide that education for you, and that’s not their job. They’re there to heal, not to educate, and unfortunately, that’s what a lot of queer people end up doing; educating people.

For Briar, having 2S/LGBTQ + healthcare workers and training for all care providers was essential to disrupting cis-heteronormativity within eating disorder treatment.

Another participant, Kelly, who identified as queer and gender fluid, described how trauma-informed approaches helped her experience compassion in her eating disorder recovery.

I know lots of people who had terrible experiences in treatment. I happened to have an amazing experience in treatment. The doctors and the clinicians there had a lot of compassion for me. I think that they were able to clearly see how sick I was in a way that I couldn’t. They also understood that I had a lot of other stuff happening. I had some pretty severe trauma and attachment shit going on.

Kelly constructed her experiences in treatment as positive because her doctors and the clinicians were able to recognize the severe trauma that being queer in a cis-heteronormative world can inflict on people.

Kelly further went on to note that, in order to be compassionate in their care for her, clinicians sometimes had to ‘bend’ the rules, indicating that she situated individual practitioners’ compassion within larger structural and organizational contexts.

They absolutely bent the rules for me. At the time the eating disorder program was about eight months long, and I know that it’s even significantly shorter now. But they let me stay in that program for a year and a half. She [Kelly’s psychologist] told me that the hospital higher-ups were looking at her records and telling her she’d been seeing me longer than she should have. She had to push back and say, ‘my client and I decide that.’ I’m still reaping the benefits of that compassion and that willingness to be flexible and to meet me where I am and help me access things.

Through this quote, Kelly’s knowledge of compassionate care is constructed through relations of power within healthcare structures, in which clinicians sometimes must juggle their ability to provide compassionate care with organizational policies and regulations, especially for 2S/LGBTQ + people who face minority stress.

2S/LGBTQ + communities as places of respite

Some participants drew a clear connection between their experiences with cis-heteronormativity in eating disorder care and feelings of exhaustion. These participants stated they felt this exhaustion was a direct result of feeling the need to strategically alter or hide their gender presentation and/or their sexuality as discussed in the first discursive consideration. When asked about this exhaustion, Briar told the interviewer,

It [hiding or altering gender presentation] is emotionally exhausting. But the alternative is also exhausting, so there’s really no escaping what that looks like. There is no escaping the exhaustion. It’s just choosing what you’re gonna put up with.

In the statement above, Briar described feeling that they must contend with one form or another of exhaustion. Such feelings of exhaustion are created from discourses of cis-heteronormativity in healthcare that positions 2S/LGBTQ + people as needing to justify their existence outside of social norms. Interestingly, they use the phrase ‘no escape,’ suggesting that they viewed this exhaustion as an inevitable outcome for 2S/LGBTQ + people living within a cis-heteronormative world, particularly in healthcare systems in which they subjugated to binary expectations of gender, bodies, and behaviors.

When asked about 2S/LGBTQ + communities and how they think compassion manifests within them, participants overwhelmingly described those communities as places of respite, safety, and shared experiential understanding. Participants consistently characterized queer communities as places in which they were not required to hide or to explain themselves; they can simply exist, and their gender and sexual identities are respected. Nicole, who identified as a pansexual cisgender woman, explained,

There’s a level of safety in those groups [queer communities]. There’s openness and freedom to change and grow. Especially in my roller derby group. People can change and grow and be accepted and celebrated. There’s this thing we do, we have a check-in, we sit in a circle, and everyone talks about what’s going on with them. There’s a space that’s held there that’s really beautiful. The openness, inclusivity, and compassion that we carry for each other’s differences, and celebrating those differences.

Nicole’s experiences within her queer community group were constructed through discourses of shared experience among 2S/LGBTQ + people that she saw as compassionate. Compassion, for Nicole, were acts of safety, checking-in with others, and celebrating differences. Daniel, who identified as a gay cisgender man, echoed Nicole’s sentiment, saying, “I think compassion in the LGBT + community is, first and foremost, about acceptance. I think compassion is the acceptance and celebration of difference.”

Kelly offered a similar sentiment, explaining to the interviewer,

The way that I see compassion showing up in queer communities is the acceptance of difference. I think that rigid standards of conformity are about as far from compassion as you can get. The diversity that exists within the queer community is a pretty clear expression of compassion. When I’m in a room full of people where I don’t know anybody, I can usually find the other queer person in the room and be with them because there’s this level of comfort. I have the feeling that I can already trust you in some ways that I may not be able to trust other people, and I can let my guard down.

For Kelly, having shared experiences of living in a cis-heteronormative world that has rigid standards of conformity about gender and sexuality created feelings of safety and trust with other 2S/LGBTQ + people. Kelly positioned this discourse of shared experience as fertile soil for compassion. Jesse, who identified as transmasculine and nonbinary, expanded on the discourse of shared experiential understanding in queer communities and how those shared experiences manifest as compassion, telling the interviewer,

There’s always that unspoken thing that brings queer people together. Inherently, at some point in your life, you’re going to have had someone not be accepting of your identity or not be accepting of you in some way, shape, or form. And though this is common for any community, cis-heteronormative or not, it’s different for us because it’s specifically our gender, our identity, specifically our sexuality. It’s that fundamental thing that we can’t change about ourselves, and that people focus on that really shouldn’t affect or matter to anyone else. And so, because we all have that shared experience, we have a little bit of commonality that makes us a community.

Nearly all participants situated 2S/LGBTQ + communities as places in which they could arrive and feel safe, understood, and in which they could avoid the emotional exhaustion of explaining, altering, or hiding their identities. This was contrasted with their experiences within highly gender- and cis-heteronormative eating disorder recovery settings. Participants noted the need to continuously assess the safety of recovery settings and personnel, alter their presentation and explain their identities. As previously stated, such needs were noted to result in feelings of exhaustion for the participants, which detracted from their treatment processes as well as their overall wellbeing.

2S/LGBTQ + Caregiving

The majority of our participants spoke at some length about 2S/LGBTQ + people caring for one another during their eating disorder journey, as well as while receiving gender-affirming care, something which they saw as intimately related to their body image and disordered eating patterns. Briar recalled asking a care provider in a treatment setting, “Do you understand that part of my restrictive eating is because I don’t feel affirmed in my gender? That’s how I’m going to manipulate my body to make myself feel affirmed.” Briar, when asked how they were able to navigate eating disorder recovery despite their negative experiences within treatment settings, described finding the most helpful supports within 2S/LGBTQ + communities, stating,

What ends up happening is that you create a community, and you create an environment of support amongst yourselves because you have no other option. It’s beautiful and it’s messy and it’s tragic that we even have to be in that position to begin with. It's unfortunate that we can’t just access the services that we need and that we're forced to be those emotional supports to other people whenever we're probably so low on our own capacity, but we're wanting to support our own, and so we make those sacrifices because of that. Yeah, it’s just something that you see in the queer community because it’s necessary. Otherwise, none of us would make it out the other end, you know?

This quotation encapsulates a sentiment several participants expressed; when healthcare settings are uncompassionate or structurally incompetent, 2S/LGBTQ + people turn to one another for the compassionate care that they feel should have been delivered by providers. That said, many participants expressed conflicting feelings about this. On one hand, they expressed disappointment that eating disorder treatment and broader healthcare settings often do not meet their needs but, on the other hand, they expressed gratitude for the intracommunity compassionate care they received from fellow 2S/LGBTQ + people. Jesse shared,

The [2S/LGBTQ+] community’s just so wanting to share resources. I’ve seen it all over social media, all kinds of different platforms where people are trying to explain and share every aspect of what [gender-affirming] surgery might look like. This is what the recovery time looks like. This is what your chest might look like. You might have these drains. And that’s how people are learning these things. They’re not learning them from their healthcare providers. They’re doing their own research and sharing it with the community. That is truly compassion, in my eyes.

Dina offered another example of 2S/LGBTQ + people providing care for one another,

I have a friend who is receiving palliative care for her eating disorder, and I’ve been visiting her in hospital daily, and so I feel like recently, my relations with this [eating disorder care] has been one of advocacy and community caregiving with individual people.

Interestingly, participants also described this kind of intracommunity caretaking happening within eating disorder treatment, including inpatient hospital settings. Kelly recalled such an experience, stating,

After we ate breakfast and the clinicians had left the kitchen, I looked at one of my co-patients there and I was like, so, do we actually follow these rules? Like, if I did wanna purge where would I go? Like, where is safe? And I still consider this to be one of the most generous experiences of compassion I've had. She just looked at me. She had been there a while and she was like, ‘how about instead of answering the question for you, why don't we go paint? There’re art supplies right here. How about we just sit down, and paint and we think about that later.’ And that's how I sat through my first 30 minutes after a meal at clinic. I had initially been very against the idea of a group therapy aspect. I really didn't think it was gonna be a good fit and I don't know that I would have stuck with it or that it would have been anywhere near as effective without my co-patients.

This discursive consideration interlocks with the second discursive consideration as participants saw queer communities not only as places for rest and acceptance, but also as safe places in which to access compassionate support in their eating disorder recovery from people who recognize their queerness as an important factor in that recovery process.