Although sex differences in pain are well documented, little is known regarding the relationship between gender and pain. Gender-diverse youth experience unique pain risk factors, including minority stress exposure, but are underrepresented in research.
Elicit experiences of gender-diverse youth who live with chronic pain.
Semistructured interviews were conducted with youth virtually using Zoom. Youth were recruited from a Canadian tertiary care pediatric hospital, community-based clinics, and the general population. Interviews were recorded, transcribed, and analyzed with a patient partner using reflexive thematic analysis, integrating relevant existing theoretical and empirical models for understanding gender and pain, identity development, minority stress, and intersectionality.
The final sample included 19 youth who represented a variety of gender identities and pain conditions and reported accessing a range of types and levels of care. Three themes were identified through qualitative analysis: (1) the fight to legitimize both their pain and gender, (2) the tension between affirming gender and managing pain and the role of gender euphoria as a buffer against pain, and (3) the role of intersecting (eg, neurodiversity and race) identities in understanding gender-diverse youths’ pain experiences.
In a diverse sample of gender-diverse youth who live with chronic pain, experiences of invalidation and difficulty managing pain were experienced in the context of unique stressors and sources of joy in living as a gender-diverse individual. These results point to the need for more intersectional and affirming pain research and integration of findings into clinical practice.
What’s Known on This Subject:
Gender-diverse youth are disproportionately affected by chronic pain and barriers to health care access, as well as unique risk factors such as minority stress exposure. Gender-diverse youth with chronic pain report increased emotional distress and functional impairments compared with cisgender peers.
What This Study Adds:
This study explored the experiences of a diverse sample of youth with respect to gender identities, pain experiences, and health care. They report unique stressors and pains, sources of joy, and a need to conduct research that considers intersectional identities.
Introduction
“We are a subset of subsets. We are a minority of minorities. And so there’s so many things that overlap and that go into our identities.” – A007
Chronic and recurrent pain affects 20%–30% of adolescents1 and is associated with negative economic, functional, academic, social, and mental health outcomes into adulthood.2–6 Sex differences in pain are a consistent finding; from puberty onward, assigned females are disproportionately affected by chronic pain conditions and experience more side effects from pain treatments.7 Less is known about the impact of gender on pain.8 Epidemiologic, clinical, and laboratory-based studies in adults have described differences in pain following gender-affirming treatments, including more congruence with the pain of same-gender individuals and higher rates of chronic pains but decreased somatization.9–13
There is evidence that transgender and gender-diverse (TGD) youth are disproportionately affected by poor health and health care discrimination.14–16 Adolescents and young adults whose gender expression visibly differs from cultural expectations report higher rates of pain, particularly those assigned female at birth.17 TGD youth with chronic pain report increased emotional distress and functional impairments compared with cisgender peers and are less likely to complete interdisciplinary pain treatment.18 A recent socioecological model19 highlighted unique sources of pain risk and resistance and resilience among TGD youth and developmental factors that highlight the need for adolescent-specific research. Research on pain and health of TGD youth has focused primarily on gender dysphoria, with little consideration of gender euphoria (ie, satisfaction or the alignment of their body with their gender). Additionally, much research has focused on youth seeking gender-affirming medical care, missing the experiences of youth who pursue social but not medical transition. This study aims to address these gaps, using qualitative analysis of semistructured interviews to understand the experiences and perspectives of TGD youth who live with chronic and recurrent pain. Because of the paucity of research in this area, no specific a priori hypotheses were developed, although previous literature and theory from adjacent areas did inform the analysis (described further below).
Methods
Ethical approval was obtained by the University of British Columbia (B.C.) Children’s and Women’s Clinical Research Ethics Board (H21–00140). A patient partner was recruited and compensated for contributing to each stage of the research.
Eligibility
Youth were eligible to participate if they identified as gender diverse, lived with chronic or recurrent pain (ie, >3 months),20 were aged 13 to 18 years, could read and understand the consent form and participate in an interview in English, and were currently living in B.C., Canada. This age range was selected to capture the important developmental transitions occurring between puberty and young adulthood that significantly impact pain and gender identity,21,22 as well as capturing youth who would have similar experiences regarding autonomy in care decisions and the type of care accessed.
Recruitment
Multiple methods were used to recruit youth with diverse demographic characteristics, geographic locations, and gender- and pain-related care experiences. Study advertisements were distributed over social media (eg, Twitter), clinic patient lists, provider lists, and by partnering organizations. Thirty-three individuals expressed interest in participating, and 22 completed the study. For 3 interviews, the interviewer was unable to confirm participant eligibility (ie, there was sufficient reason for the researcher to suggest a potentially fraudulent participant who was not a youth residing in B.C.),23 leaving 19 interviews for analysis. Note that following the identification of potentially fraudulent responses, the research team instituted a more stringent process for confirming eligibility beyond participant self-report by requiring a piece of identification with the participant’s name and address.
Consent
All participants, regardless of age, were offered the option to undergo a brief capacity assessment to determine their eligibility to consent without parental involvement, in accordance with recommendations on conducting research with TGD youth to not introduce a barrier or risk to participation.24–26 This involved providing the consent form to the youth ahead of time, verbally reviewing the key points of the consent form with an investigator, and then having the investigator ask a series of questions to assess understanding using an adapted version of an approach previous used by Nadin and colleagues.27 The investigator ensured that the youth was aware of the circumstances under which there may be a need to break confidentiality and inform their parents of their participation (eg, if a serious and imminent threat to self or others was reported). If the youth was determined to not have capacity to consent, they were provided the option of having a parent or caregiver sign the consent form. If not, they were not able to participate. Further details regarding this process and participant feedback are provided under a separate manuscript.28
Demographic Questionnaire
Participants completed a questionnaire on REDCap29 before the interview, reporting age, ethnicity, and perceived socioeconomic status (SES; adapted from the Health Behavior in School-age Children study as previously used with Canadian adolescents).30,31 A question was added to differentiate between family SES and adolescent’s own SES, acknowledging that TGD youth may not have access to family funds.
Interview
The interview guide was developed by the investigator team, who have lived, clinical, and research expertise in chronic pain, gender care, and qualitative methods. The interview guide focused on experiences of pain, gender identity, and the relationship between the two, as well as relevant intersecting identities.
Interviews were conducted by a postdoctoral fellow (K.E.B.), a white, cisgender woman with a PhD in clinical psychology and clinical and research experience relevant to this project. The interviewer’s position was one of supporting access to gender-affirming care and validating youth’s pain. To reflect these values and to encourage openness and comfort for the participants, the interviewer took an affirming stance in all interviews, asking questions and clarifications as per the interview guide but also reflecting and validating the participant’s statements throughout. The interviewer did not have any prior relationship with the study participants.
Interviews were conducted by videoconference with methods developed to increase participant comfort28 and in line with recommendations for online research during COVID-19.32 Interviews were audio recorded, professionally transcribed, and checked by the interviewer. The interviewer made field notes during and after the interviews, which lasted on average 55 minutes (range = 30–82 minutes). Data collection ended when there were close to the a priori sample size estimate (n = 20), a diverse sample of youth with respect to gender identity, pain type, and other demographic characteristics were achieved, and sufficient information power obtained.33
Data Analysis
Data were analyzed by the interviewer using reflexive thematic analysis, a qualitative method appropriate for describing the experiences and perceptions of a group of diverse individuals.34 Analysis was informed by existing literature and findings contextualized within the research team’s own subjective understanding. In addition to reflexive exercises on the interviewer’s positionality and privilege and its impact on the analysis and interpretation, all stages of the analysis were discussed in depth with a lived experience consultant, who also reviewed anonymized transcripts. Existing theoretical and empirical models for understanding gender and pain,8,35,36 adolescent identity and development in the context of chronic pain,37–39 gender identity development,40,41 minority stress and intersectionality theory,42–44 and methods to center TGD voices45 informed the interpretation. Themes and subthemes were intended to capture experiences that were relatively common throughout the sample. However, within each theme, descriptions are provided to outline how diverse experiences may be captured by said theme and/or highlighting where an experience was not described universally by participants to capture both the commonalities and key diversities within the sample. In keeping with accepted approaches for thematic analysis and the reporting of data from semistructured interviews (in which the interviewer responds to and adapts the protocol to unique content from each participant), we have opted not to report frequencies of themes and codes or quantify any aspect of the data collection.46
Trustworthiness and credibility of the qualitative analysis were ensured through member checks with our patient partner, recruitment of a diverse cohort from clinical and community settings, use of virtual interviews to increase geographic diversity, and facilitation of youth consent. Furthermore, data sources were triangulated from field notes and interview transcripts, interpretations were discussed with our multidisciplinary research team through both formal and informal iterative discussions, and a clear audit trail of decisions was maintained.
Description of Sociocultural Context
Recruitment took place from September 2021 to April 2022, a time of significant stressors (eg, anxiety related to the COVID-19 pandemic, social isolation, and reduced access to health care services), disproportionately impacting TGD youth and youth with chronic pain.47,48 Transgender health care was available in B.C., and provincial legislation protected TGD youth against discrimination and harassment in medical settings. Youth who were determined to have capacity to consent to their own medical decisions could do so, as indicated by the Family Law Act and Infants Act.49
Data Availability
Because this study did not have ethics approval to release the transcripts of the interviews and to protect the confidentiality of the participating youth, the data are not publicly available. Representative quotes that have been de-identified are included in the manuscript and Table 1.
Themes, Subthemes, and Representative Quotes Generated During Reflexive Thematic Analysis
| Themes and Subthemes | Example Quotation |
|---|---|
| 1. Fighting for legitimacy: visibility, vulnerability, and validation | “(…) being a youth and being queer, everybody just questions whether or not I really know myself or they know me better. So as soon as I go outside of what they expect, like, a boy to do, they’re, like, okay, but now were you really a boy? Because you’re in pain, boys don’t feel pain. Get over yourself. And so, I’ve gone, like, out of my way to uh, stop vocalizing my pain and just simply live with it. Um, just so I won’t be questioned on if I know who I am.” - A004 |
| “Um, I think that some people view, like, when they see gender diverse people, and they assume, like, that they’re faking it (…) I think they figure that they think that they have um, some mental condition that’s making them gender diverse, so it um, they don’t have empathy for their pain.” - A001 | |
| “[gender identity is] what people always go to ‘cause it’s the one thing that’s different about me.” - A002 | |
| “(…) even with my mental health more settled I, I’m still trans and even when I wasn’t concussed, I was still trans and it—it might stay that way even—with whatever pain I experience or whatever pain I don’t experience…” – A017 | |
| 1a. Living a double life | “Mm, not wanting to burden the people, not wanting people to know, to show weakness ‘cause I don’t know, I’ve had to put up a wall be, being gender diverse so uh, that um, yeah. It’s always been a struggle for me to show pain, like, to cry in public, to show emotion.” - A001 |
| 1b. The unwanted expert role | “I’m 17. I’m not fully developed in any way. But I’m expected to explain every nuance of being trans to every person I meet who finds out that I’m trans.” - A020 |
| 2. You can affirm your gender, or manage your pain, but not both | “Yeah, it’s, it’s choosing between do I want people to see me as a masculine individual? Or do I not want to have a back that hurts as much as it does, right? Like, it’s either, it’s either my back feels slightly better or it’s—people read me correctly. And that’s such a difficult decision.” - A022 |
| “Before [top surgery], even though it was causing me pain, like, giving me the headaches having the posture, it was much more important for me to, like, hide [my body/chest] um, then it was to um, not be in pain.” - A002 | |
| “Since I try to present more masculinely, there’s certain things I’ve had to change just in posture and the way I stand (…) which isn’t nice all the time.” - A010 | |
| “(…) if I don’t bind around certain people, oh, you’re not trans enough. Or if I don’t deal with my chronic pain, I guess you’re not in enough pain. I guess you’re fine. Rather than it being something that’s, like, these are two things that you’re dealing with, and sometimes, some days you have to prioritize one over the other.” - A020 | |
| “My pain’s definitely changed the way I see my gender but also, like, the way that I approach, like, transitioning and stuff (…) it, like, makes me worry about, like, eligibility for surgery and stuff like that.” - A015 | |
| 2a. The embodied experience of gender and pain | “I was in pain, but I was, like, well, this isn’t a body that I’m comfortable in. So it deserves this, which I obviously didn’t.” - A020 |
| “For people who do experience, like, body dysphoria (…) having your body be, like, sort of a consistent source of pain (…) on top of that if you’re someone like me who’s, like, dealt with a lot of, like, disordered eating stuff, like, that’s another thing of, like, your body’s another source of pain. (…) their body is something that they have to be actively fighting against a lot in order to, like do things. And, like, that, that kind of makes it hard to, like, feel at home in your body a lot of the time, I think.” - A015 | |
| “Uh, no, it’s [pain associated with top surgery] worth it. I don’t care how much it hurts, get them off my chest. I’m ready.” – A022 | |
| “I knew it [pain associated with hormone injections] had to be done, so it wasn’t, like, anything that I would have wanted to change because there was no other way.” – A008 | |
| “I feel like that the uh, the kind of restrictiveness and the discomfort [with wearing a binder] isn’t worth it.” - A014 | |
| 2b. Adopting gendered pain behaviors to affirm identity | “It’s this, like, terrible double standard where if you’re trans and you put in the effort to, like, ‘pass’ and make yourself look like a cisgender person or make yourself look like this traditional idea of being male um, you will be in uh, you will be in pain because of it and no one will really know how to help you treat or deal with that pain on an average daily basis. But if you don’t bind and you uh, and you, and you don’t do that, you run the risk of further discrimination, um, you run the risk of your identity being invalidated by the people around you, uh, you risk being uh, misgendered more often by the people around you which make, might make your own dysphoria even worse.” – A018 |
| “People don’t understand when I say I identify as male but I still um, act in a way that is more sensitive than the stereotypical man. And most men would have a hard time admitting at all that they’re in pain so I, I feel like people, some people, don’t believe me when I say that I’m transgender.” - A016 | |
| 2c. The untapped potential of gender euphoria as a buffer against pain | “I think that changing the way I dress and, like, the way I present myself and stuff um, I think it’s given me more confidence, which can be, like, a bit of kind of a distraction from the pain, is, is good.” - A013 |
| “It’s [pain] rough and uncomfortable um, and even just having that little bit of joy or gender euphoria um, like, just helps me forget about my pain for a while and helps just, like, let me release it for a bit and kind of calm down and get lost in something else other than thinking about this sucky situation I’m in.” - A017 | |
| “I think if anything, it [discovering gender identity] took my mind off the pain, you know? It was an opportunity to talk about something different, something that was kind of exciting and nice rather than just the pain all the time. (…) Especially because, you know, when you’re trans, a lot of it is thinking, you know, far into the future with how many years on hormones or in years when you end up getting surgery, how that’s gonna look like. It kind of gave me a chance, and opportunity to look more into the future.” – A021 | |
| 3. Intersecting identities and social context | “And I did what uh, many uh, transmasculine kids do when they don’t have access to proper chest binding stuff, was they try to chest bind on their own DIY style and I did this by wearing multiple sports bras on top of each other. And the way that I layered them um, I had, like, super tight elastic around my chest all the time and it permanently damaged my ribs…” – A018 |
| 3a. Pain and gender intersect with neurodiversity | “I’m autistic and I also have ADHD. So those interfere with both my gender and my pain just—like, I have sensory issues, which can affect even just, like, things—as well as wearing a binder, that got in the way. ‘Cause it was really overwhelming, like the sensory issues as well as, like, a lot of things that um, help people with pain. Like, even sometimes with, like, um, like there’s joint supports (…) But sometimes I can’t because I have sensory issues and it can get really overwhelming.” - A019 |
| 3b. Safe spaces and people that appreciate these intersections make a difference | “right now, I am fighting, like, my frickin’ hardest to get another gender neutral washroom ‘cause right now there’s only one that’s fully accessible um, which is of course shared with literally everyone else in the school” - A005 |
| Themes and Subthemes | Example Quotation |
|---|---|
| 1. Fighting for legitimacy: visibility, vulnerability, and validation | “(…) being a youth and being queer, everybody just questions whether or not I really know myself or they know me better. So as soon as I go outside of what they expect, like, a boy to do, they’re, like, okay, but now were you really a boy? Because you’re in pain, boys don’t feel pain. Get over yourself. And so, I’ve gone, like, out of my way to uh, stop vocalizing my pain and just simply live with it. Um, just so I won’t be questioned on if I know who I am.” - A004 |
| “Um, I think that some people view, like, when they see gender diverse people, and they assume, like, that they’re faking it (…) I think they figure that they think that they have um, some mental condition that’s making them gender diverse, so it um, they don’t have empathy for their pain.” - A001 | |
| “[gender identity is] what people always go to ‘cause it’s the one thing that’s different about me.” - A002 | |
| “(…) even with my mental health more settled I, I’m still trans and even when I wasn’t concussed, I was still trans and it—it might stay that way even—with whatever pain I experience or whatever pain I don’t experience…” – A017 | |
| 1a. Living a double life | “Mm, not wanting to burden the people, not wanting people to know, to show weakness ‘cause I don’t know, I’ve had to put up a wall be, being gender diverse so uh, that um, yeah. It’s always been a struggle for me to show pain, like, to cry in public, to show emotion.” - A001 |
| 1b. The unwanted expert role | “I’m 17. I’m not fully developed in any way. But I’m expected to explain every nuance of being trans to every person I meet who finds out that I’m trans.” - A020 |
| 2. You can affirm your gender, or manage your pain, but not both | “Yeah, it’s, it’s choosing between do I want people to see me as a masculine individual? Or do I not want to have a back that hurts as much as it does, right? Like, it’s either, it’s either my back feels slightly better or it’s—people read me correctly. And that’s such a difficult decision.” - A022 |
| “Before [top surgery], even though it was causing me pain, like, giving me the headaches having the posture, it was much more important for me to, like, hide [my body/chest] um, then it was to um, not be in pain.” - A002 | |
| “Since I try to present more masculinely, there’s certain things I’ve had to change just in posture and the way I stand (…) which isn’t nice all the time.” - A010 | |
| “(…) if I don’t bind around certain people, oh, you’re not trans enough. Or if I don’t deal with my chronic pain, I guess you’re not in enough pain. I guess you’re fine. Rather than it being something that’s, like, these are two things that you’re dealing with, and sometimes, some days you have to prioritize one over the other.” - A020 | |
| “My pain’s definitely changed the way I see my gender but also, like, the way that I approach, like, transitioning and stuff (…) it, like, makes me worry about, like, eligibility for surgery and stuff like that.” - A015 | |
| 2a. The embodied experience of gender and pain | “I was in pain, but I was, like, well, this isn’t a body that I’m comfortable in. So it deserves this, which I obviously didn’t.” - A020 |
| “For people who do experience, like, body dysphoria (…) having your body be, like, sort of a consistent source of pain (…) on top of that if you’re someone like me who’s, like, dealt with a lot of, like, disordered eating stuff, like, that’s another thing of, like, your body’s another source of pain. (…) their body is something that they have to be actively fighting against a lot in order to, like do things. And, like, that, that kind of makes it hard to, like, feel at home in your body a lot of the time, I think.” - A015 | |
| “Uh, no, it’s [pain associated with top surgery] worth it. I don’t care how much it hurts, get them off my chest. I’m ready.” – A022 | |
| “I knew it [pain associated with hormone injections] had to be done, so it wasn’t, like, anything that I would have wanted to change because there was no other way.” – A008 | |
| “I feel like that the uh, the kind of restrictiveness and the discomfort [with wearing a binder] isn’t worth it.” - A014 | |
| 2b. Adopting gendered pain behaviors to affirm identity | “It’s this, like, terrible double standard where if you’re trans and you put in the effort to, like, ‘pass’ and make yourself look like a cisgender person or make yourself look like this traditional idea of being male um, you will be in uh, you will be in pain because of it and no one will really know how to help you treat or deal with that pain on an average daily basis. But if you don’t bind and you uh, and you, and you don’t do that, you run the risk of further discrimination, um, you run the risk of your identity being invalidated by the people around you, uh, you risk being uh, misgendered more often by the people around you which make, might make your own dysphoria even worse.” – A018 |
| “People don’t understand when I say I identify as male but I still um, act in a way that is more sensitive than the stereotypical man. And most men would have a hard time admitting at all that they’re in pain so I, I feel like people, some people, don’t believe me when I say that I’m transgender.” - A016 | |
| 2c. The untapped potential of gender euphoria as a buffer against pain | “I think that changing the way I dress and, like, the way I present myself and stuff um, I think it’s given me more confidence, which can be, like, a bit of kind of a distraction from the pain, is, is good.” - A013 |
| “It’s [pain] rough and uncomfortable um, and even just having that little bit of joy or gender euphoria um, like, just helps me forget about my pain for a while and helps just, like, let me release it for a bit and kind of calm down and get lost in something else other than thinking about this sucky situation I’m in.” - A017 | |
| “I think if anything, it [discovering gender identity] took my mind off the pain, you know? It was an opportunity to talk about something different, something that was kind of exciting and nice rather than just the pain all the time. (…) Especially because, you know, when you’re trans, a lot of it is thinking, you know, far into the future with how many years on hormones or in years when you end up getting surgery, how that’s gonna look like. It kind of gave me a chance, and opportunity to look more into the future.” – A021 | |
| 3. Intersecting identities and social context | “And I did what uh, many uh, transmasculine kids do when they don’t have access to proper chest binding stuff, was they try to chest bind on their own DIY style and I did this by wearing multiple sports bras on top of each other. And the way that I layered them um, I had, like, super tight elastic around my chest all the time and it permanently damaged my ribs…” – A018 |
| 3a. Pain and gender intersect with neurodiversity | “I’m autistic and I also have ADHD. So those interfere with both my gender and my pain just—like, I have sensory issues, which can affect even just, like, things—as well as wearing a binder, that got in the way. ‘Cause it was really overwhelming, like the sensory issues as well as, like, a lot of things that um, help people with pain. Like, even sometimes with, like, um, like there’s joint supports (…) But sometimes I can’t because I have sensory issues and it can get really overwhelming.” - A019 |
| 3b. Safe spaces and people that appreciate these intersections make a difference | “right now, I am fighting, like, my frickin’ hardest to get another gender neutral washroom ‘cause right now there’s only one that’s fully accessible um, which is of course shared with literally everyone else in the school” - A005 |
Abbreviation: ADHD, attention deficit hyperactivity disorder; DIY, do it yourself.
Results
Demographics
Youth represented diverse ages, identities, backgrounds, and types of chronic pain (see Table 2 for complete demographics). Numerous physical cooccurring experiences were described, including nausea, fatigue, postconcussion symptoms, and hypermobility. No geographic information was collected to maintain anonymity, but anecdotally, youth represented urban, suburban, and rural and remote areas across the province.
Demographics of Sample (n = 19)
| Demographics | N |
|---|---|
| Agea, mean (SD), range, years | 15.79 (1.32), 14–18 |
| Reported gender identityb,c, N (%) | |
| Agender/no gender | 2 (11) |
| Androgynous | 1 (5) |
| Demiboy | 1 (5) |
| Female | 1 (5) |
| Genderfluid | 2 (11) |
| Genderqueer | 2 (11) |
| Male | 5 (26) |
| Nonbinary | 7 (37) |
| Transgender | 1 (5) |
| Transgender man/male/masculine | 7 (37) |
| Queer | 1 (5) |
| Ethnicitya,b,d, N (%) | |
| African | 1 (5) |
| Asian | 2 (11) |
| Caribbean | 1 (5) |
| Indigenous | 5 (26) |
| European | 16 (84) |
| Latin (eg, Hispanic) | 2 (11) |
| Type of painb,c, N (%) | |
| Abdominal | 3 (16) |
| Chest | 4 (21) |
| Disease-related | 3 (16) |
| Headache/migraine | 7 (37) |
| Musculoskeletal | 14 (74) |
| Other | 1 (5) |
| Gender-affirming care accessedb,c, N (%) | |
| Testosterone | 8 (42) |
| Estrogen | 1 (5) |
| Chest masculinization surgery | 1 (5) |
| Puberty blockers | 3 (16) |
| Cooccurring psychiatric conditionsb,c,e, N (%) | |
| Anxiety | 12 (63) |
| Depression | 7 (37) |
| Family socioeconomic statusa, N (%) | |
| Very well off | 0 |
| Quite well off | 4 (21) |
| Average | 7 (37) |
| Not so well off | 5 (26) |
| Not at all well off | 0 |
| I prefer not to reply | 3 (16) |
| Personal financial situationa, N (%) | |
| Very comfortable | 0 |
| Comfortable | 10 (53) |
| Not very comfortable | 4 (21) |
| I prefer not to reply | 5 (26) |
| Demographics | N |
|---|---|
| Agea, mean (SD), range, years | 15.79 (1.32), 14–18 |
| Reported gender identityb,c, N (%) | |
| Agender/no gender | 2 (11) |
| Androgynous | 1 (5) |
| Demiboy | 1 (5) |
| Female | 1 (5) |
| Genderfluid | 2 (11) |
| Genderqueer | 2 (11) |
| Male | 5 (26) |
| Nonbinary | 7 (37) |
| Transgender | 1 (5) |
| Transgender man/male/masculine | 7 (37) |
| Queer | 1 (5) |
| Ethnicitya,b,d, N (%) | |
| African | 1 (5) |
| Asian | 2 (11) |
| Caribbean | 1 (5) |
| Indigenous | 5 (26) |
| European | 16 (84) |
| Latin (eg, Hispanic) | 2 (11) |
| Type of painb,c, N (%) | |
| Abdominal | 3 (16) |
| Chest | 4 (21) |
| Disease-related | 3 (16) |
| Headache/migraine | 7 (37) |
| Musculoskeletal | 14 (74) |
| Other | 1 (5) |
| Gender-affirming care accessedb,c, N (%) | |
| Testosterone | 8 (42) |
| Estrogen | 1 (5) |
| Chest masculinization surgery | 1 (5) |
| Puberty blockers | 3 (16) |
| Cooccurring psychiatric conditionsb,c,e, N (%) | |
| Anxiety | 12 (63) |
| Depression | 7 (37) |
| Family socioeconomic statusa, N (%) | |
| Very well off | 0 |
| Quite well off | 4 (21) |
| Average | 7 (37) |
| Not so well off | 5 (26) |
| Not at all well off | 0 |
| I prefer not to reply | 3 (16) |
| Personal financial situationa, N (%) | |
| Very comfortable | 0 |
| Comfortable | 10 (53) |
| Not very comfortable | 4 (21) |
| I prefer not to reply | 5 (26) |
Denotes questions that participants responded to in the demographic questionnaire; questionnaire categories are provided as presented to the young person and were responded to based on their own interpretation of what each category represented. Measures were reviewed and edited by our lived experience consultant for readability and applicability to context.
Percentages do not add up to 100% because participants could select more than one response.
Denotes questions that participants responded to during the interview; some responses have been categorized by the research team based on the information provided. Participants were not explicitly asked about their sex assigned at birth, and as such, the label “transgender” is not applied unless they specifically identified as such.
Categories were selected broadly based on the Statistics Canada census categories.54 Participants had the opportunity to select all categories that applied, as well as category options of “Mixed” and “Other” ethnicities.
Other conditions reported less frequently included trauma, neurodevelopmental conditions (sensory processing disorder, attention deficit hyperactivity disorder, and autism), suicidal ideation and attempts, nonsuicidal self-injury, obsessive-compulsive disorder, and eating disorders.
Qualitative Themes
Themes and subthemes are described narratively below, with representative quotes available in Table 1. There was tremendous variability in how youth described their relationship to gender. For some, gender was an important and valued part of their identity, whereas others rejected labeling their gender and/or did not feel connected to the TGD community. Some described gender as a fluid experience, whereas others understood gender as binary. There were differences in whether youth perceived gender as psychological (something they “are”), sociocultural (something they “do”), or biological (eg, being trans described as an anatomical mismatch error corrected through affirming care). Youth’s unique relationship of gender identity to pain would likely be highly influenced by these personal conceptions of gender.
1. Fighting for Legitimacy: Visibility, Vulnerability, and Validation
Similar to the broader chronic pain literature, most TGD youth described a vicious cycle of pain leading to functional impairment (eg, missing school) and decreased engagement in valued activities, associated with anxiety and depression, preventing recovery-promoting activities.50 This was complicated by long journeys of investigations and diagnostic uncertainty, experienced as traumatic and invalidating.51
For TGD youth, there was a common narrative of paternalistic dismissal of their lived experience based on gender, disability, and age. For some, there was frustration that pain was assumed to be related to their gender identity (gender overshadowing) or both were ascribed to mental health concerns, invalidating and oversimplifying youth experiences.52
Youth provided descriptions of their ideal health care encounters and ways that past encounters had gone wrong. Many asked that health professionals use their chosen name and pronouns (although opinions differed on if and when to ask this), avoid unnecessary questions related to sex assigned at birth or gender identity, and to generally use trauma-informed care principles.
1a. Living a double life
Many youth described feeling as if they were living a double life and would not share their experiences of suffering because of feelings of inferiority and past experiences of being invalidated or even overtly threatened. Disclosure became associated with vulnerability and weakness. Youth did not want to burden others with their suffering, leading to feelings of isolation and difficulty finding community.
1b. The unwanted expert role
Despite perceiving care providers as “knowing better,” youth also described having to educate health professionals about gender during their times of suffering, an uncomfortable power dynamic. Youth also felt responsible for modifying their gender expression to avoid being misgendered or invalidated.
2. You Can Affirm Your Gender or Manage Your Pain, But Not Both
TGD youth described tension between pain management and gender affirmation, with pain often relegated to a lower priority or accepted as a “new normal.” Pain care required the vulnerability to ask for help, the self-value to prioritize their well-being, and sometimes risking their ability to affirm their gender.
Several youth described having to choose between the pain associated with chest binding (a method of gender affirmation) and pain related to posture (eg, hunching to hide their chest). Not being able to affirm gender identity was associated with significant impacts on mental health and well-being, a well-documented phenomenon.53 Fear of gatekeeping and delay of gender-affirming treatments because of pain were understandably experienced as distressing. However, not attending to pain led to negative impacts on functioning and mental health.
2a. The embodied experience of gender and pain
Youth described how pain and gender identity influenced their relationship to their body. Some described feeling disconnected from a body that hurt and did not reflect their identity, reducing motivation to engage in care. Some TGD youth described pain as necessary in the service of affirming their gender identity.
2b. Adopting gendered pain behaviors to affirm identity
Youth described pressure to conform to gendered pain behaviors to affirm their identity, despite not believing in these constructions of gender. Many described systems (eg, patriarchy, capitalism, and “grind culture”) and values or beliefs (eg, masculinity associated with stoicism and femininity associated with weakness and withstanding pain as a sign of moral superiority) that perpetuate these standards. Youth described the normalization of pain as a display of commitment to their gender identity.
2c. The untapped potential of gender euphoria as a buffer against pain
Although many described unhelpful tensions between pain management and gender affirmation, some youth also described gender euphoria as a protective or distracting effect against pain. Gender affirmation gave youth hope, acceptance, and an opportunity to be future oriented, important given the research literature linking both gender diversity and chronic pain to risk of suicide.55,56
3. Intersecting Identities and Social Context
Other identities and social positions that intersect with gender were critical to understanding youth pain. Some discussed a lack of socioeconomic resources as impacting both pain and gender care. This could be due to family poverty or family that were unsupportive or unaware of the youths’ gender identity. Many youth could not access services like physiotherapy that required insurance coverage. Insufficient resources also resulted in youth engaging in potentially unsafe and painful practices of gender affirmation. Some described how aspects of their identity (eg, young age and ethnicity) led to being infantilized, enhancing the experience of invalidation and dismissal.
3a. Pain and gender intersect with neurodiversity
A key intersection highlighted by approximately a third of youth in the present study was a neurodiverse identity. Youth described sensory differences, challenges navigating health care interactions, and distressing unpredictability and disruptions to routine influencing pain management and gender affirmation. Potential strengths associated with being neurodiverse (eg, hyperfocus on understanding their condition) were dismissed or overlooked by ableist health systems.
3b. Safe spaces and people that appreciate these intersections make a difference
Youth described the need for safe environments and people (eg, who understood, were gender affirming, thought flexibly about gender identity and roles, and encouraged emotional expression and self-compassion). Accessing spaces that were safe for even one aspect of their identity was challenging—finding spaces that could accommodate the pain and disability-gender intersection even more so.
Past difficult experiences, such as transphobic violence or medical trauma, impacted youths’ ability to use accessible spaces. Being misgendered could make a space unsafe and acted as a significant barrier to accessing care or communicating needs to health professionals. Some youth internalized unsafe and inaccessible spaces as highlighting their differences, whereas others externalized this as reflecting an issue related to a system, not themselves.
Discussion
The present study explored the experiences and perspectives of TGD youth who live with chronic pain. Youth described challenges of living with identities that are often devalued and delegitimized, having to conceal aspects of their identity for safety, while also being expected to educate uninformed health systems. TGD youth reported tensions between being able to affirm their gender identity and manage their pain, with chest binding a frequently cited example of this balancing act. These experiences were not unilateral; youth described adoption of unhealthy gender-stereotypical pain behaviors as a means of gender affirmation but also experiencing gender euphoria as a positive buffer against pain. TGD youth described changes in their relationship with their body that challenged the management of their pain and mental health. Finally, appreciating intersecting identities (particularly neurodiversity) was necessary for understanding the unique stressors and facilitators of navigating pain management as a gender-diverse youth.
The first theme described the complexities of living at the intersection of identities that are questioned or invalidated. Previous research describes the significant burden associated with transgender youth having to “prove” their gender57 in a similar way that people with chronic pain must prove their illness, impairing efforts to achieve wellness.58
Invalidation was described as occurring in overt and covert ways, from direct challenging of identity to navigating spaces that were not designed for them. Past qualitative research on the intersection of transgender identity and disability has described ableist barriers to affirming one’s gender identity and how existence in a cisnormative world can contribute to disability.59
The relationship with pain was complex. Some pains associated with gender affirmation were described as necessary or even desirable, in service of a greater goal (eg, binding, surgery, and injection pain from hormones). Others served to further distance youth from a body that felt alien to them. Complicating this relationship was the expectation that they adhere to gendered pain stereotypes to have their identity legitimized. Youth described the perception that girls are seen as hysterical but are also expected to suppress “female pains” (eg, pain with monthly bleeding), that boys are expected to hide pain and not seek help, and that the pain of TGD individuals is dismissed. However, despite adopting these behaviors for the sake of gender affirmation (a phenomena previously described in relation to other health behaviors60), many youth described them dispassionately, seeing these stereotypes as a role to play rather than representing their true pain.
Although many experiences were discussed, chest binding was the most frequently raised issue in navigating pain and gender affirmation. Binding-related pain can exacerbate preexisting conditions and injuries and impact later chest masculinization surgery outcomes.61 The positive and necessary impact on gender expression means that many individuals continue to bind despite these risks.62 Although safe chest binding practices exist, many youth do not have access to information or materials. More research is needed on other potentially painful gender affirmation practices, such as tucking.63
TGD youth in the study described additional intersecting identities that influenced their pain experiences, including race, age, SES, and neurodiversity. Approximately a third of the present sample self-identified as neurodiverse, congruent with previous prevalence rates in TGD samples.64 Research on TGD adults with autism have described similar issues in accessing care, including aversive sensory aspects of the health care environment and the high degree of uncertainty.65 These individuals are at particularly high risk for care gatekeeping, diagnostic overshadowing, and a lack of understanding by health professionals.65
There were many examples of unique strengths, sources of resilience and resistance, and joyful experiences that are imperative to highlight. The literature on pediatric chronic pain in general has begun to move away from solely damage-centered research by prioritizing constructs such as flourishing and posttraumatic growth,66 and the field of gender health research has often overlooked gender euphoria.67 This is a critical area to harness for future research, particularly prospective studies examining the role of gender euphoria as a potential mediator of a relationship between the impact of access to gender-affirming care and environments and pain and functional outcomes.
Clinical Implications
Many of the factors raised by TGD youth as being important in safe and affirming pain care interactions were relatively simple and based on principles of respect. Youth understood why certain questions and issues had to be raised related to their sex or gender and just asked that this be done respectfully.
Many of the concerns raised (eg, long wait times, diagnostic uncertainty, and significant impact of pain on function) are not unique to the experiences of TGD youth. However, when these intersect with the gender diverse–specific stressors, the impact may be different. For example, many youth described the challenge of navigating what to prioritize in their care (eg, gender affirmation, pain, mental health, and other medical concerns) and that this was often determined by which service was available first, whether they had “aged out” of the pediatric system, or what their insurance would cover, rather than a planful decision. A recent chart review described that although gender dysphoria occurred earlier than pain onset, presentation to pediatric chronic pain treatment generally occurred before an initial appointment or referral to the gender clinic.68
Strengths and Limitations
This study intentionally had broad inclusion criteria, capturing youth who had and had not received gender-affirming care and care for their chronic pain. The present study required participants to self-identify as interested and therefore may have been biased toward youth who were more comfortable and open with their gender identity or who felt better supported. However, some of the youth noted that they are not open about their gender identity and/or their experience of pain; therefore, willingness to speak to a neutral researcher who is bound by rules of confidentiality may have, in part, mitigated this concern.
The context in which these data were collected should also be considered. Although efforts were made to recruit a diverse sample with respect to ethnicity, cultural background, and gender identity, there are many experiences that were not or minimally represented, including culturally specific gender identities and transfeminine individuals. Further work is needed to explore the nuances of different gender identities (eg, binary vs nonbinary identities) and how this intersects with sex assigned at birth. As described by Leonardi and colleagues,69 gender-diverse identities are often combined into 1 category, although there are important differences in oppressions and experiences. The present study attempted to account for this by recruiting youth with diverse experiences of gender, framing questions in a neutral way, and using thematic analysis to capture diverse perspectives.
Future Directions
Given the dearth of literature on chronic pain in TGD youth, research opportunities are numerous. Hormones or puberty blockers were rarely described as influencing pain by youth in the present study. Research on the impact of gender-affirming treatment on chronic pain in adolescence is needed to educate providers and mitigate bias.
Little is known regarding the effectiveness of established treatments for chronic pain in TGD youth, and future research must consider how systemic problems and oppression may impact efficacy of the intervention.70 Barriers to chronic pain interventions may exist for TGD youth who do not feel safe in their homes or communities (particularly in spaces accessed for rehabilitation purposes, such as gyms and swimming pools), who do not have a support network, or who are prioritizing more urgent concerns.
Conclusion
TGD youth who live with chronic and recurrent pain have diverse experiences, perspectives, and health care needs. Pain care for this population should prioritize basic principles of respect and trauma-informed and patient-centered care. Each individual TGD youth will approach a health care encounter with their unique experiences, perspectives, needs, stressors, relationship to gender, and sources of pain. Professionals should be knowledgeable of the specific stressors and sources of pain faced by TGD youth, as well as their sources of resilience and strength, so they can appropriately support young people in navigating their care.
Dr Boerner conceptualized and designed the study, acquired funding, collected data, carried out the initial analyses, and drafted the initial manuscript. Drs Danya Fox and Tim Oberlander designed the study, acquired funding, supervised data collection and analysis, and critically reviewed and revised the manuscript. Mr Du designed the study, supported the initial analyses, and critically reviewed and revised the manuscript. Drs Marshall, Metzger, Moore, and Narang designed the study and critically reviewed and revised the manuscript. Ms Wharton coordinated data collection. All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.
CONFLICT OF INTEREST DISCLOSURES: None.
FUNDING: The present research was generously funded by the Drotar-Crawford Postdoctoral Fellowship Research Grant in Pediatric Psychology and a Clinical-Translational Research Seed Grant from BC Children’s Hospital Research Institute. Dr Boerner was supported by a postdoctoral fellowship from the Canadian Child Health Clinician Scientist Program while this research was conducted.
Acknowledgments
The authors would like to sincerely thank the youth who shared their time, stories, and wisdom in this project. The authors would also like to thank the many individuals who provided formative insight, mentorship, and guidance on working with TGD populations and/or conducting thoughtful reflexive thematic analysis, in particular Dr Lauren Harrison. This work was conducted in partnership with PainBC, Trans Care BC, and Solutions for Kids in Pain. This work was conducted out of Vancouver, which is on the ancestral and unceded territory of the x?m?θk??y??m (Musqueam), S?wx?wú7mesh (Squamish), and Sel?íl?witulh (Tsleil-Waututh) Nations.
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