Thread by @AlisonReiheld

THREAD: Sunday, I tweeted re: trans folks' feelings seeking healthcare: anxious, humiliated; when it works, good. Here are some narratives that help explain. We'll do negative narratives today, and positives Tuesday.
#TransHealthEthicsProject
#TransAwarenessWeek
#bioethics

https://twitter.com/AlisonReiheld/status/1196263467788984320

Paul Farmer, public health advocate and a founder of Partners in Health (@PIH) says, “stories illustrate some of the mechanisms through which large-scale social forces crystallize into the sharp, hard surfaces of individual suffering.” #narrativematters #bioethics #meded

@PIH Of course, stories also remind us of the joy that folks can take in life even when suffering occurs. And trans joy is real.
But alas, today I'm going to tell you about how clinical encounters damage trans folks, how a source of help is too often a source of harm. 3/n

@PIH Much of the negative experiences trans folks have in clinical settings are not due to clinician bigotry, but a devastating combo of ignorance and unconcern. Clinicians seem to think if they are good, they don't harm trans folks. But good is a thing you do not a thing you are.
4/n

@PIH Trans patients are often told that their case is too complicated, and referred to someone else. But this is a denial of care as surely as any bigoted rejection, and causes at best a delay in care as the trans person then has to seek another provider.
5/n

@PIH Other neg. experiences arise from front office behaviors/structures requiring trans folks, especially trans folks whose gender doesn't match assumptions about the services they need, to out themselves—for instance a trans man with a beard who is at the gynecologist’s office.
6/n

@PIH Many trans patients avoid/delay care to not face these experiences. This happens at almost the same rates in Canada as in the US, and still happens in many EU countries as well. For many, only their closest humans and their health care providers know that they are trans. 7/n

@PIH Many clinicians have no idea that trans folks' bad experiences begin at the front office. One participant in #TransHealthEthicsProject was told, upon calling for an appointment, "we don't treat transgenders." 8/n

@PIH Another, a trans man with a masculine voice seeking gynecological care, was told by front office staff that the community-recommended ob/gyn “only treats women.” To be clear, the trans community knew that the actual clinician was good. But the front office staff did not.
9/n

@PIH Imagine having a successful medical and social transition; you are read by others as the gender you are. Now imagine your gender does not match the name by which you will be called back, the treatment the office provides. For some of us, this requires no imagination at all. 10/n

@PIH One participant, Simon, is white, in his 30s, trans masculine. He describes going to the Gyn, a known trusted provider. He brings his cisgender wife with him so that when he is called back, he appears to be accompanying her when in fact it is the other way around.
11/n

@PIH It gets much worse than denial of care by front office staff, misgendering, or being outed to all the others in the waiting room when being called back. This next narrative shows poor treatment by front office staff, a sense of being untouchable, and not getting needed care.
12/n

@PIH This participant is a white trans man in his 30's and uses he/him pronouns (a different participant from Simon). He did not wish to use a pseudonym, self-chosen or assigned. Here he discusses his experiences with his primary care provider. This is a long one. 13/n

@PIH "So...she did the pre-op physical I needed before I could go get top surgery and…things seemed okay. But I noticed [on a later visit] that the office staff was, you know, not welcoming. Now, I’m not, I’m not looking for confetti cannons with the trans flag colors, okay?" 14/n

@PIH "I come up to the desk &... you don’t even say hello, you don’t talk to me...it’s just very much that feeling of being othered, of being… kicked out of the human club. And when that happens routinely, repeatedly, and in many different contexts, that’s very hurtful…"
15/n

@PIH "It took a little while to get myself geared up for [a yearly gyn exam]...you know, they’re probably going to make you wear the stupid gown, they’re probably going to do a women’s exam, they’re probably going to... do the stuff about bodies that make us uncomfortable."
16/n

@PIH But something worse than the expected yearly gyn exam happened: "Didn’t do any of that. Didn’t make me undress. You know they didn’t do the abdomen palpitation, didn’t do a women’s exam. And she stayed, like, seven feet across the room…" Health care was not delivered.
17/n

@PIH Our next narrative comes from a 28 yr old Black nonbinary person who chose the pseudonym Jefferson Pierce (the superhero Black Lightning). Pierce, like many nonbinary folks with breasts, wears a binder which flattens their chest. They, too, did not get the care they needed: 18/n

@PIH "My most negative health experience [was with a doc assigned to me after I got health insurance] through the Affordable Care Act through the Marketplace…. And so I went to the doctor on my card, I was like okay, cool. Like got health insurance, got a primary care doctor."
19/n

@PIH "Last year I decided to actually figure out what was going on with my tonsils, because for four or five years every other month I was getting tonsillitis or strep throat. And I was just like well I guess it’s time to figure this out, because I don’t want to be sick anymore." 20/n

@PIH "I’m trying to explain how I’m always sick, always feel tired, feel like I’m never not sick because of my tonsils, & her response to that was very curt: “oh, well we don’t remove people’s tonsils all willy-nilly”. She literally said the words “willy-nilly” to me."
21/n

@PIH "I tried to explain to her that I was trans, but she was trying to do...the stethoscope and things and kept telling me to take deeper breaths and it was the end of the day and I had been wearing my binder all day. And so like I really couldn’t take a deep breath." 22/n

@PIH "I was trying to explain, I’m wearing a chest binder, because I’m trans... And that conversation lasted for about 15 minutes and it was very clear that she didn’t understand. And I left with no assistance for my tonsils and a prescription for an inhaler that I didn’t need." 23/n

@PIH What the previous narrative revealed was that trans folks sometimes don't get the care they need because of staff and provider discomfort, and providers and front office staff need to pre-game their interactions in order to provide good, competent care to ALL patients. 24/n

@PIH What Jefferson Pierce's narrative reveals is that providers can get sidetracked by aspects of trans folks' existence and, without paying attention to the trans person's expertise about their own body, can end up with misdiagnosis or missed diagnosis. Or both.
25/n

@PIH Participants reported many times when clinical encounters got "hijacked" by provider's focus on transness, including a person whose provider insisted that the swelling in their legs was from testosterone injections and did not work up any other possibilities. 26/n

@PIH Clinicians assuming health conditions are related to trans status is common & jokingly/despairingly described as "trans broken arm syndrome." But providers paying attention to trans-ness & ignoring patient complaints was common in THEP narratives. 27/n pinknews.co.uk/2015/07/09/fea…

@PIH For example, 1 #TransHealthEthicsProject participant described a doc asking about childhood experiences of gender and even whether their family members still use their birth name. Little time was left to discuss the reason they came seeking care, which was not addressed. 28/n

@PIH Multiple participants described not being treated as patients in need of care, but "treated as an experiment"; a "chance for them to learn something." These folks described not getting their medical needs addressed as surely as Pierce & the man whose Gyn never touched him. 29/n

@PIH Heartbreakingly, one THEP participant was both trans themselves and had spent years caring for a chronically ill trans partner. The partner's medical needs were routinely ignored by specialists focusing on trans status, until they became extremely ill from non-treatment.
30/n

@PIH Issues also arise in mental health settings, where some clinicians still try to get trans patients to confess to having been sexually abused as children (an outdate etiology of transgender) before they will offer a diagnosis that grants access to medical threatment. 31/n

@PIH A THEP participant who took herself to the ER during a mental health crisis for a voluntary in-patient stay was left in the hallway for almost 48 hours with a guard: "According to one of the nurses I had talked to while I was waiting, because I believe I am a woman... 32/n

@PIH "...but still have man parts, they couldn't put me in a room with anybody else." The last hour or so before she finally got a room, "they had me sitting in one of their restraint rooms... because I was complaining about being left in the hallway." 33/n

@PIH Another THEP participant also reported being kept waiting for a voluntary in-patient psych admission because, they were told "they didn't know what to do with me." The institution, designed around the sex/gender binary, HAD NO PLAN for how to treat trans folks. 34/n

@PIH Given all this, it should come as no surprise that #TransHealthEthicsProject participants (as per my thread yesterday) describe such anxiety about seeking health care. But what does GOOD care look like? Because it does happen! (Thank goodness). We'll see Tuesday. 35/n

@threadreaderapp unroll

NB: testosterone can cause edema, and swelling. But (a) asking a trans person to go off T without working up other possible options is devastating to other aspects of health and (b) refusal to consider other causation can result in missed diagnosis of treatable conditions.