Article Figures & Data
Figures
- Figure 1.
Flow diagram of methods.
CAB = community advisory board.
Note: Orange: Involved members of the investigative team but not the community advisory board; green: Involved the community advisory board and other members of the investigative team; red: Involved the first 2 authors only.
Tables
Age, y, mean (range) 31 (20-67) Clinician (%) 10 (33) Race/Ethnicity (%) Indigenous 3 (10) Black 7 (23) Asian 2 (7) White 22 (73) Latinx 4 (13) Gender Non-binary/gender fluid/genderqueer/agender 21 (70) Man 4 (13) Woman 3 (10) Does not identify with gender 1 (3) Transgender man 1 (3) Sexual orientation Queer/pansexual 22 (73) Bisexual 6 (20) Gay/lesbian 5 (17) Heterosexual 1 (3) Asexual 3 (10) Something else 4 (13) Choose not to answer 1 (3) Income, $ <20,000 8 (27) 20,000-39,999 6 (20) 40,000-59,999 3 (10) 60,000-79,999 2 (7) >80,000 5 (17) Missing 4 (13) Insurance Private 19 (63) Public Medicaid 6 (20) Medicare 4 (13) Uninsured 2 (7) Missing 1 (3) Geographic Region Western United States 8 (27) Southwest United States 1 (3) Midwestern United States 3 (10) Southeastern United States 3 (10) Northeastern United States 15 (50) Canada 1 (3) Note: Values documented at n (%) unless otherwise noted. Participants were asked to “choose all that apply.” Thus, column values may not total n = 30 nor percentages 100%.
Theme: Transgender people often perceive clinicians’ questions as voyeuristic, stigmatizing, or self-protective.
[D]octors…ask a lot of invasive questions. I saw a pulmonologist earlier in the year and one of his first questions was, “When are you getting genital surgery?” and I was like, “I’m here for my lungs.” (White, non-binary, age 20s, #24)
All [clinicians] need is what medical [interventions] you’ve had done and what your pronouns are.… [Other] shit gets documented [because] someone’s fucking curious…so people can talk behind [the patient’s] back. (Xicanx, non-binary, age 30s, #21)
When they’re asking about [being transgender], they’re more like, “What was originally in your pants?”…and most of the time it’s not relevant.…[It] also just feels like they’re asking questions because they’re curious. (White, genderqueer, age 20s, #18)
There’s this idea of being extra-defensive in your documentation when you’re dealing with a trans person—being really complete…in case something happens. I don’t think you need to ask extra questions. I don’t think you need to ask everything about someone’s gender journey.… Don’t ask [the questions] … you don’t need to ask because that’s a violent thing to do, and it’s not for them it’s for you. (White, nonbinary, age 30s, #28, clinician)
What’s surprising for me is that my medical record…says that I have gender dysphoria and that I’m transgender…, but it doesn’t say anything about top surgery, my hysterectomy, my cancer treatments, port placement, bone marrow transplant twice, or chemotherapy. (Black, nonbinary, age 20s, #9)
I was [seeking care]…because I have jaw pain and tightness…and the attending kept [misegendering me even after I corrected her] so I was like this is not [a] mistake [and then the attending]…literally started asking, “Oh, are you still on testosterone?”.I was like… why do you think my jaw pain is connected to being on testosterone? Do you ask cis men this? Probably not. (Asian, non-binary, agender, age 20s, #11)
If I come to you and you’re a dentist, the only thing you need to know is how fucked up my teeth are. If I come to you and you’re a dermatologist, all you gotta look at is my acne. If you desperately need information because you need it to treat me, I need to know why you need it to treat me. (Black, doesn’t believe in gender, age 20s, #23)
As soon as I walk in, no matter what I’m there for, the first thing of business is for them to determine my gender or sex assigned at birth… and…once they…know they’re …much more at ease.… (White, man, age 20s, #25)
I’ve also been [referred to subspecialists], say the eye doctor, and they’re just like, “What do you use testosterone for?” and I’ve looked at them in the face and been like “testosterone things” and just left it at that. (Black, man, age 30s, #1, clinician)
When we had [a] trans patient on my unit, I was reading the ER note and they made sure to mention that she was wearing a prosthesis. And I was like.… not sure why that’s relevant. Were you doing that to make a point? (White, man, non-binary, age 30s, #30, clinician)
Getting my vitals taken in the room, I had to field a lot of questions every time I went about what I was. And why?…And [the clinicians did] this kind of informal [questioning],…this strange, unprofessional, “So tell me what it was that you had done” in this sort of behind-the-curtain way that I didn’t appreciate at all. (White, non-binary, age 30s, #28, clinician)
I don’t want to step into a place and be the center of attention because people are looking at me like “Oh, hold on a second,” and I can tell in their eyes that they’re picturing what I looked like before my transition. And looking at my pants.…[For me the whole point of having] anything in my medical record is to get the attention and the weird questions away from me. (Black, doesn’t believe in gender, age 20s, #23)
I know there’s medical reasons why they need to know that you take [for example spironolactone].… I just don’t like the conversations that just come after like…“Oh, so you’re transitioning? To female? Did you do this? Did you do this? Dah dah dah dah dah?” (Black, trans woman, age 20s, #13)Theme: Patients describe being pathologized, denied or given substandard care, or harmed when clinicians learn they are transgender.
It wasn’t until after I told the doctor that I was on hormones for transition that I started being “he’d.” And as accidental or whatever it was, it was after. Before that, it was “she.” (Black, trans woman, age 20s, #13)
If cis people know what I was assigned at birth, they’re always getting my pronouns wrong. It doesn’t matter how much they promise they’ll get them right; the moment they know they get it wrong. (White, trans-femme, androgyne, demigender, apogender, nonbinary, genderqueer, genderfluid, age 20s, #17)
When I got to the hospital, I was…in a lot of pain and …we were trying to explain to the doctor that my appendix burst … and we got yelled at because…I was trans.…They sent me home a lot faster than they usually send people home…and prescribed Tylenol instead of actual pain killers.… I had one of the nurses that was a Black woman who was like, “I have never seen people get out of the hospital without any prescription.” And I would regularly have nurses, usually…not nurses of color, come into the room [and] at the moment they would see my legal name they would get out .… And I was constantly yelled at by people.… Now when something goes wrong I just tough it up.… (Black, doesn’t believe in gender, age 20s, #23)
As soon as you tell them “[spironolactone] and estradiol,” the doctor [sometimes] knows why you’re taking them and…[says] out loud, “So you’re transitioning to female” …In front of so many people, especially in an emergency care system, having…someone say that information out loud as a trans person feels invasive to my own privacy and wellbeing. (Black, trans woman, age 20s, #13)
After I had top surgery…the tech …[was] asking really inappropriate questions, asked to see my chest, and then proceeded to touch my chest without my permission. So that was probably…the worst story that I will never forget. (White, non-binary, man, age 30s, #30, clinician)
[My ex-partner] was in the hospital for an alcohol overdose and everyone was gendering her correctly at first, and then…the doctor pulls up the charts …and…takes…two feet back from her hospital bed, and he’s like, “Oh, this seems to be an emotionally disturbed individual.”…The doctor was probably misgendering…saying, “He’s drunk and dangerous” and this was not the case until he [learned that she was transgender].… [The doctor] acted like my partner was kind of a wild animal from that point forward.… (White, nonbinary woman, age 30s, #14)
Once they figure out I’m trans…I feel their demeanor change, their questions. They get really hesitant all of a sudden. I’ve had doctors try to make me put on gowns, and I’m like, “Oh, I don’t need to cover my chest. I’ve had surgery, and I feel comfortable with that,” and they’re like, “No, no, you have to put on the gown.” …They just get…so uncomfortable.… (White, non-binary, age 20s, #24)
I had a trans patient come into the ER and I asked their pronouns and then a staff member, a [medical assistant] was like “She blah blah blah blah,” and I was like, “Actually they use they.” And the [medical assistant] was like “Okay, well ‘it’ whatever.” And I was just like, “That’s not appropriate. That’s not funny.” How can you serve a patient if you also call them “it,” if you dehumanize them like that? (Latino, Taíno, trans man, age 30s, #2, clinician)Theme: Transgender people frequently choose between risking harms associated with transphobia if they share information and ineffective clinical problem-solving if they do not.
Do I need to tell all these [clinicians that] much like many other women, I have estrogen coursing through my veins? (White, nonbinary, woman, age 30s, #14)
I don’t feel comfortable sharing medical records with physicians anyway because it’s a guarantee that I’m not gonna get services. So I lost [my medical records] and they’re good wherever they are now, far away from me. (Black, doesn’t believe in gender, age 20s, #23)
I relate to [what participant 23 said] so hard. That’s why I purposefully do not tell people shit unless they really need to know, …because it will guarantee that I don’t get services. Especially being intersex or if someone knows I’m on hormones then I’ve been denied care a lot for that.… (Xicanx, non-binary, age 20s, #21)
We have to…say certain things in order to be treated certain ways… When I went into therapy for my surgeries and things…if I hadn’t gone in there and said “Oh yeah, I want to [have genital surgery], I need this,” I wouldn’t have been able to get [any gender-affirming care]. (Black, trans woman, age 20s, #13)
I didn’t really know whether it would be a problem to be a little more ambivalent…to express any non-binary tendency, [to say] these parts of transition are great and these parts of transition I’m less certain about… so I was like, “Oh yeah. I’m a woman. I want all the cis things. Do my hair and my make-up. Let’s go.” (White, non-binary, woman, age 30s, #14)
Because I spent so many years getting gendered with the wrong…pronouns. …Sometimes they just straight up assume I have a period… and I just go with it, which is.… not great but it works out for me. (White, trans-femme, androgyne, demigender, apogener, nonbinary, genderqueer, genderfluid, age 20s, #17)
I sometimes don’t come out to my providers as trans, in part because once I told a provider I was queer and they commented, “Your underwear doesn’t look queer.” [I] was like, “Okay, I’m just not gonna mention this to people.” (White, Latine, non-binary, age 30s, #4, clinician)
I’ve talked to a number of trans people who… want to make [themselves] less controversial… so that… [they] can get what [they] need. In a lot of areas you do know better what you need than honestly the provider. But in some cases you may not.…I think that’s a danger.…You might not get the care that you need… [or] you incur violence as a trans person for having [documentation about being transgender] on your record, truthfully. (White, non-binary, age 30s, #28, clinician)
I don’t want [autism] on my medical record because then I know people that would be like, “Oh, that’s why you’re trans.” (Black, doesn’t believe in gender, age 20s, #23)
I did have painful periods and…also my period [was] a disembodied experience because it was just so not me. But I was scared to bring that up with my doctor as a reason [for the hysterectomy]. …She’s a great doc but rolls her eyes around certain things, so…I am glad I didn’t bring that up as a reason. I’m glad we took it out, and she saved my life because she found this tumor and pulled it out, but I didn’t feel comfortable sharing that part. (White, nonbinary, age 50s, #3)
I was nervous to put my sex at birth [in MyChart] because I was afraid…from then on, does anyone that opens my chart see my sex at birth? What if I don’t want them to see that? If I don’t put trans male as my identity, if I just put male, and I don’t put my sex at birth then what is seen? What is seen by insurance? I don’t want to put too much information because I don’t know who’s seeing it, and I don’t know how it’s going to affect my health insurance. I don’t know if I need to get a pap what is gonna happen. (White, nonbinary, man, age 30s, #30, clinician)Theme: Improving the safety of transgender people is difficult in the context of contemporary medical systems.
There’s no lack of education…at institutions that put in a lot of work and money into diversity and inclusion efforts.…There’s just this disconnect between the resources and knowledge and the implementation. (Black, man, age 30s, #1, clinician)
After 15 years of doing this kind of work …My first thought is, will we ever be able to truly take care of any person in the health care system that we have…in a way that’s not violent? (White, nonbinary, trans, age 40s, #7, clinician)
The Western health care system [is] looking at people like bodies without souls attached to them.…Trans people…and people of color will never be treated properly in that system until that system is completely revised because that system was built with the idea in mind that those bodies are disposable.… (Black, doesn’t believe in gender, age 20s, #23)
I’m a nonbinary person, though I am assigned female at birth, however I don’t identify or relate to the frame FTM. When I said that, the only explanation I got was the only options [for gender in the EHR] were FTM or MTF.… (Black, nonbinary, age 20s, #9)
Don’t have male, female, and then other [in the EHR] .…[Include] nonbinary and/or the ability … to type in what is reflective of this person. (Indigenous, nádleehi, Black, Latinx, White, nonbinary, age 20s, #22)
At some point [my psychiatrist] did fill out a form which presumably [only] had female or male as [gender] options, [and] she said, “So it’s fine if I just put you as female, right?” And I was just thinking why wouldn’t you at least ask me? It’s really dysphoric for me to be seen as female. (Asian, nonbinary, 24, #10)
I got my wisdom teeth out, and I have a hormonal [intrauterine device], and I’m also on testosterone, and I remember the person at the front desk the morning of the surgery was giving me some forms and she crossed something out on one of the forms.… I looked at [what she’d crossed out] and it said something [like] …you need to tell us if you are on birth control because it mixes with the…anesthesia…Maybe if [she] didn’t assume that I was male then I could have just self-written in that yes, I’m on birth control. (Asian, nonbinary, agender, age 20s, #11)
[Trans people force clinicians to] face the reality … that they’ve stuffed a lot of people into [their] algorithms [who] don’t fit, and…that [clinicians’] binary, racist algorithm[s] …[don’t] function. (White, nonbinary, 30s, #28, clinician)
Something that could go a long way—I know it’s half [because of] insurance companies and stuff—[is] stop making trans people prove that they’re trans. That would be awesome. (White, nonbinary, agender, age 20s, #8)
I’ve been struggling a lot with this idea of punitive [solutions].… [In] my clinic I’ve been misgendered for the 4 years that I work there. By staff. So what do we do here? What are we to do in terms of enforcing somehow that trans people are well taken care of? (White, nonbinary, trans, age 40s, #7, clinician)
[Obstetrics and gynecology is] very gendered; it’s very binary. There’s a lot of work that needs to be done. Even from the moment someone’s born [everyone is] like, “Is it a girl or a boy?” [In the obstetrics and gynecology notes,] they just skip the patient’s gender or sex because the assumption is that the person they’re seeing is a woman. (Black, nonbinary, age 20s, #6)
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