What I Want My Doctor to Know

 

Written and compiled by Ellen Knoppow

Introduction

An informal survey of 13 trans and nonbinary individuals revealed their perspectives on interactions with healthcare providers. Participants, representing a wide range of backgrounds, were invited by Stand with Trans to participate via the SwT newsletter.

Not surprisingly, the respondents indicated that most importantly, being treated as an individual is paramount. That’s experienced differently for each person, but for many, it was central to whether or not they felt their identity was affirmed at their doctors’ offices.

This is how one individual described what it means to them:

“The health professionals, probably a lot of them, try to box you into this identity group, and I think there needs to be this open availability in which every patient is asked how comfortable they are being addressed in a certain way.”

Seeking healthcare can be a daunting experience. The trans and nonbinary young adults in the survey were mostly late teens to early 30s, many navigating the
terrain solo.

What follows represents a snapshot for doctors and other healthcare providers from one group, at one point in time. Improved patient care is the ultimate goal.

Imagine changing your name in your medical chart before your annual visit to your pcp, signing in at the front desk then waiting to be called for the appointment. Someone appears at the door and calls out your deadname/birth name. Or it happens at the pharmacy. This scenario is a composite of how a few of the survey participants described something that plays out in reality, as opposed to the way it should. When that happens, it exposes gaps in communication.

“Sometimes they don’t care to look,” said one individual about changing their name in their chart versus what happens in the office. Most expressed emotions like frustration when that happens, although there is often grace extended to begin with. “I understand that people are going to get it wrong, but it really matters that they try. That’s what’s most important to me.” and “I just correct them with respect and try to make them understand my own point of view.” And, “There’s some inconsistencies, definitely.”

“The thing I want the most (is) to be better. I think, is just paying more attention or not being willfully ignorant when it comes to the name and pronoun thing, especially when it’s right on my chart.”

In terms of office staff, one participant felt errors could be a “generational thing,” which means that increased training and awareness would benefit everyone involved.

The following responses from two different individuals illustrate the wide range in attitudes about how the trans and nonbinary survey respondents feel about correcting the record when mistakes are made:

“I like to assume ignorance instead of malice before, so I try to help educate the best I can, but sometimes it’s not possible.”

“I’m not a teacher, I’m a patient.”

Trans and nonbinary young adults want their docs to know they often seek info elsewhere

Google, youtube mentioned as sources of info as well as peers. Several mentioned being referred by a pcp or self referral to a health center that specializes in gender affirming care.

“I feel like a lot of them do want to help, but they don’t have much information.”

“If I am curious about medical stuff, I tend to seek it out elsewhere.”

One said because their doctor doesn’t understand their condition they rely on online sources.

Trans and nonbinary young adults are aware the quality of care can be hard to find, due to geography or other reasons.

This was one individual’s experience finding appropriate care: “It was hard because, as a trans person, asking for health care…in general, it’s vulnerable. But it was really, really hard to ask for this, and then to be bounced around.”

Accessing quality care for trans and nonbinary young adults is challenging to begin with. A few participants expressed difficulty locating appropriate care due to where they live. Some specifically seek LGBTQ+ friendly providers; for others, that might not be possible due to geography.

One individual who was otherwise satisfied with their healthcare described a situation where a pharmacy tech wasn’t able to advise them about needle gauges.

For many, finding appropriate doctor(s) was “a process” as one said.

Navigating the healthcare system and navigating one’s gender identity can be especially challenging: “This has been a solo journey. Before this started, I did not know that many trans people. I had zero trans people in my immediate life.”

Several said they didn’t have a pcp or a pcp that affirms their identity.

A few mentioned switching doctors, then finding care that was suited to their individual needs. One younger survey respondent said they were helped by a parent, but most described going it alone.

A few specifically mentioned finding an affirming ob/gyn. One was described as “amazing.” One trans man described requiring surgery that could only be performed in their area at a “women’s” hospital. An admittedly uncomfortable situation, in which they were misgendered by staff, was ultimately seen by a caring gynecologist who had a better grasp of the situation. “I have never been cared for this much in my entire medical history.”

The following are examples of what survey respondents reported finding affirming in their interactions with healthcare providers:

“I think they should always ask the pronouns that we go by, that I go by or that any of us go by, so that you can be more comfortable. And it should just be a smooth conversation and smooth interaction with them.” When this doesn’t happen upfront and an error is made, this individual feels, “Well, can I actually trust this person with what I’m about to say? And then later realize that it might be just a genuine mistake and all. And we have to move from there.”

“They need the education, they need the language to be able to talk to people who come in and ask questions,” said one young adult about their primary care doctor. They specified it had to do with where they lived previously. Again, the quality of care often depends on where they live.

“What was helpful for me is when I needed a new primary care doctor, I was specifically looking online for offices that kind of basically just had on their website that they were, they had experience treating LGBT patients and whatnot.”

They want to be listened to: “I really like my doctor, and she definitely spends enough time with me and answers all my questions.”

Here’s what one individual found affirming about seeking care at Planned Parenthood: “they have experience with trans people and different pronouns and such, so I never felt like my identity was, I guess, not taken care of, if that makes sense, at least with Planned Parenthood.

From another happy client:

Planned Parenthood: “asked questions that were relevant, and in a way that was gender-affirming.” and “They don’t even gender the body parts”

“With Planned Parenthood, I talked a little bit about some of my past with anxiety and depression a little bit and some of my fears with transitioning. And I believe the clinician was pretty affirming. …not dismissing my experience of saying, ‘oh, everyone feels this’, but ‘it’s very common to feel this. This is what usually happens during transitions.’”

They want specialists to stick to their specialty.

For example, two reported positive interactions just because a doctor didn’t address gender or transition as it wasn’t relevant to the care in their office.

Some spoke out about particularly negative interactions as they sought gender affirming care:

One respondent recounted an experience where a medical student seemed unprepared for what they discussed during the intake interview.

They are perceptive about being disrespected and recognizing microaggressions. One stressed that the focus should be on patient care, “not personal beliefs” Another said, “Most of that comes down to them having a certain political opinion that I can’t change,” said one individual. “Nor do I feel like I should have to try and change someone’s opinion just to respect me properly.

“75% of the time the medical establishment gets it right…The times that they don’t get it right, it’s all somewhere between irritation and heartbreaking … And that’s like a wide canyon, but it’s all negative.”

Finally one person mentioned a situation where a breast exam had been ordered but the individual didn’t require it:

“I think for a lot of people, it sucks to go to the doctors. So, it’s not, like, it’s not a specific-to-trans-people thing, but I think that that’s an instance where it can be more uncomfortable because of being trans.”

Given the importance of having their identity affirmed in their doctors’ offices, trans and nonbinary individuals have suggestions for their healthcare providers.

Pronoun pins, resources about gender identity in the office and better training in general were mentioned.

One mentioned an “LGBTQ safe training” for doctors or perhaps doctors’ offices that complete instruction by an LGBTQ+ group could receive a certification.

“The ability to understand [my] fears and administer the right treatment for me.”

“Listen to my questions.”

“I like that a lot of places now include preferred name, preferred pronouns kind of thing, which, you know, ‘preferred’ is, like, give or take can be bad, but I feel like they’re trying to move in that right direction.”

“Learning more about trans patients and all that stuff…and also being in contact with more resources.

One individual stressed that healthcare providers should ask their trans and nonbinary patients questions before making assumptions about anything related to gender and sexuality.

Conclusion:

Trans and nonbinary young adults have a wide range of experiences with their healthcare providers, depending on things like where they live, where they seek care and how comfortable they feel self-advocating, which many of them do. One individual whose journey finding appropriate care for them said they would give the medical establishment a “C.” For many, a passing grade isn’t sufficient. At the same time, those who were able to find care at a specialized healthcare center like Planned Parenthood, Ruth Ellis Center or others reported a positive experience.