This is the first of two planned articles detailing gendered experiences in the American healthcare system. If you would like to share your health experiences, please sign up here.
Although the transgender community has achieved greater visibility in the American public eye, there are still some health-related hurdles. When it comes to the quality of healthcare support, it really varies from state to state and even doctor to doctor. But what about for transgender people, where do they get their support from?
Jonathan, age 31, learned this firsthand when he had to take on provider ignorance, prying nurses, and navigating health insurance coverage gaps – all while transitioning and learning to balance his medical needs.
Transitioning – Step One
“When I first talked to my primary care doctor about transitioning, she didn’t really know much.”
Jonathan works at a public library in Sacramento and spends his free time writing. He considered the idea of transitioning to male on and off for years, but didn’t give it serious thought until he began learning more through other people’s stories and experiences.
“I just thought that I couldn’t be trans for a long time. I didn’t know from a very young age, and I also like a lot of things that are more ‘feminine,'” Jonathan says. “I had only ever seen very binary depictions of trans people, so I didn’t think I was trans.”
It was at that point he took the first steps toward transitioning and discovered just how convoluted and intimidating the process can be.
Jonathan had occasionally met with therapists over the years to discuss unrelated topics, and he debated bringing up the possibility of being trans during these appointments. “I’d think, ‘What would happen if I brought this up?’ But I was too scared to do it, and the possibility of being trans didn’t feel like something I could talk about,” Jonathan says.
However, after learning more about the transgender community, Jonathan pondered the idea more seriously.
“I decided to transition because in the past few years, there’s been a lot more openness, and I started to see more stories that were similar to my stories. So, I realized if other people could do this, I could do this. That gave me the confidence,” Jonathan asserts.
He sought out a therapist beforehand as well, to further discuss being transgender.
“Finding a [trans-friendly] therapist was a little difficult, because I didn’t know how to go about it,” Jonathan explains.
He ultimately found a website that listed professionals by the areas they specialized in, and he called the therapists under the “LGBT” section.
“Some of the therapists didn’t have any experience [with transgender patients], so I didn’t know why they were on the list. I ultimately went with the one I was the most comfortable with,” Jonathan shares.
After meeting with the trans-friendly therapist and becoming more comfortable with his identity as a transgender man, Jonathan broached the topic with his general practitioner.
“When I first talked to my primary care doctor about transitioning, she didn’t really know much. She didn’t know which doctor to send me to for hormones or anything. So, she sent me to random endocrinologist in the system,” Jonathan shares.
However, after meeting with the endocrinologist, Jonathan realized he knew more about transgender healthcare than the doctor did.
“He didn’t seem to have the most updated information. He wanted me to get a letter from a therapist and you don’t have to do that in California,” Jonathan explains. Historically, a “referral letter” written by a mental health professional was required prior to hormone therapy. Recently, many providers have switched to the “informed consent” model, in which doctors fully explain the medical procedure and have their patients sign a document attesting to their understanding.
Overall, Jonathan felt somewhat frustrated with his initial healthcare experience as a transgender individual.
“My primary care doctor didn’t know who to send me to. And even the person she sent me to, didn’t know much. I talked to him about being on a lower dose of testosterone and he didn’t know people could be on a lower dose,” Jonathan recalls. “So, I think that was frustrating, not really knowing if you can trust the expertise of the people you’re seeing.”
Balancing Medical Needs
“When I was thinking of transitioning, I was worried it might make my health issues worse.”
While Jonathan gained confidence in his identity as a transgender person, he had to weigh any trans-related medical procedures with two chronic health conditions.
“I have chronic migraines, and I have spondyloarthropathy, a type of autoinflammatory disease,” Jonathan shares. “[The conditions] keep me from being able to work full time. They make my job difficult, because it’s pretty physical, perhaps more than most would realize.”
While Jonathan receives Botox injections every three months to manage his migraines and infusions every six weeks to reduce his arthritic spondyloarthropathy symptoms, the physical nature of being on his feet all day as well as kneeling and reaching to shelve heavy books strains his body.
“When I was thinking of transitioning, I was worried it might make my health issues worse. I had a lot of anxiety about how that would affect me,” Jonathan shares.
Specifically, he was concerned about beginning testosterone treatment after hearing it could increase the severity of his migraines.
Conversations with his new healthcare professional assuaged Jonathan’s concerns, however.
“When I talked to my doctor, she actually told me that it’s usually [people taking estrogen injections] who have problems with migraines because of the estrogen. She seemed to think [testosterone] might actually help with my migraines. And it did,” Jonathan shares happily. It’s important to note, however, that patients with a history of migraines should talk to their doctors about appropriate dosing. Estrogen may worsen migraines, but testosterone can also worsen migraines due to the fluctuation of hormones in the system.
For Jonathan, a supportive relationship with his doctor was critical to balancing safe and effective treatments for his chronic conditions while also continuing transitioning medically.
In addition to his medical conditions, Jonathan continued to need routine preventive care – such as cervical cancer screenings – as a person with a uterus.
“I had to do that [pap smear] this past year, and it’s really awkward. [The gynecological office] is a pretty uncomfortable space to be in, because I don’t feel like I belong there. I guess at this point, I’m just trying to avoid it as much as possible,” Jonathan admitted.
Jonathan says his discomfiture stemmed from two main sources: the environment of the gynecologist’s and the public nature of seeking care.
“All of the stuff on the walls [of the gynecologist’s office] is geared toward women, and I feel awkward, because there’s no space for me. I’m being told I don’t belong here. So, if there was a more inclusive way to present information, that would be good,” Jonathan explains.
As someone who is now outwardly presenting as male, Jonathan is also concerned what others may think or wonder about him as he goes to a gynecologist’s.
“Especially as I start to pass more and look more male on the outside, there’s a self-consciousness of being someone who looks like a cis[gender] guy in a space that is supposed to be for women. So, will people wonder why I’m there or will it give me away?” Jonathan worries.
More than a Physical Change
“The idea of the ER waiting room made me nervous. Being around a bunch of strangers makes me nervous when I don’t know how I’m going to be perceived. Or when I don’t know which bathroom will be safe to use.”
Before Jonathan legally changed his name and gender* in November 2016, his doctor’s office added a note about his preferred name and pronouns but could not change the name or gender on his records.
With a general practitioner, rheumatologist, neurologist, nurses to administer his treatments, a primary care doctor to prescribe his hormone therapy and surgeons, Jonathan had a number of different healthcare professionals to update about his name and pronoun change.
“Sometimes people would use the right name and sometimes not,” Jonathan remembers. “Sometimes they’d remember my new name but not the pronouns. So, it was kind of weird. It really seemed to depend [on circumstance].”
Even after legally changing his name and gender, mistakes would still happen. When Jonathan had to go to the hospital in January 2017, some would call him “she” and others “he.”
“It depended on the person,” Jonathan says of the experience. There are a number of hospitals in Sacramento and Jonathan has tried many.
When Jonathan experienced severe abdominal pain in January, he says he put off going to the emergency room for longer than he should have. While his symptoms began in the evening, he delayed going to the ER until the morning after, enduring the pain throughout the night.
“I really didn’t want to go or deal with it,” Jonathan admits. “I wasn’t sure how a whole bunch of new doctors would react [to being trans]. Also, the idea of the ER waiting room made me nervous. Being around a bunch of strangers makes me nervous when I don’t know how I’m going to be perceived. Or when I don’t know which bathroom will be safe to use.”
By the time Jonathan made it to the ER, he found it backed up, and ultimately had to wait for 11 hours for care.
“All the nurses were surprised at how long I’d been waiting. They checked for gall stones and didn’t see anything. But all my symptoms in liver and enzymes indicated a small stone had gotten stuck. So, the theory was it had already passed, and if I’d come in earlier, maybe they would have found something,” Jonathan explains.
Prying versus Professionalism
“One of the nurses asked me which pronoun I preferred. I really appreciated that and it made me feel more understood. It lets trans people know you’re going to respect and listen to them.”
When Jonathan goes in for his spondyloarthropathy treatment every six weeks, he typically has the same nurse who he describes as “really respectful.” The first week of March, however, Jonathan met with a new nurse for his treatment who asked a lot of “invasive” questions.
“I’ve found a little bit of gender policing with some people. With the nurse, I’d painted my nails, and she was really taken aback that I was trans but I had painted my nails. So, in her head, she had an idea of how a trans person is supposed to present, and I wasn’t fitting into that for her,” Jonathan explains.
On top of this, the nurse also pressed Jonathan for details around sex reassignment surgery.
“I had to explain to her about top surgery and bottom surgery and how there isn’t just one surgery. And it wasn’t related to the treatment I was getting. It was completely irrelevant,” Jonathan relates with annoyance.
In contrast, Jonathan recalls the first time he went in for his testosterone injections and met with a nurse who was well-educated on transgender issues.
“One of the nurses asked me which pronoun I preferred. I really appreciated that and it made me feel more understood. It lets trans people know you’re going to respect and listen to them,” Jonathan shares happily.
Overall, he thinks his experience with most healthcare professionals has been positive and that he’s been lucky, but Jonathan remains cautious.
“It’s hard when you’re dependent on your care and [healthcare providers] say things that make you uncomfortable, because I don’t really have the choice to leave,” Jonathan explains. “I’m more wary, especially when meeting new doctors or nurses. I’m always unsure if they’re going to be respectful or discriminate.”
As a transgender person, Jonathan also has to take precautions to maintain his sexual health. Studies estimate that transgender people are at an increased risk of living with HIV compared to the general population and therefore using appropriate protection is fundamental.
Navigating Health Insurance While Trans
“It’s weird to think if [national healthcare] insurance does change that I would have to consider [insurance coverage] if I ever decided to move to a different state. I have to consider, ‘Will I have access to the healthcare that I need?'”
In November 2016, Jonathan legally changed his name and gender. When he reached out to his health insurance company to provide the update, however, the process became rather muddled. After some initial delay in responding to Jonathan’s request, his insurance company received the legal documentation of his name and gender change.
“They [insurance company] changed everything [in the system], and I thought it was fine. But it turned out they had created a new account instead of updating the old one,” Jonathan shares with exasperation.
Moreover, the logistics of name and gender change is only one aspect of the insurance process for trans people.
Because Jonathan still has reproductive organs traditionally associated with female insurance plans, he is concerned he could have trouble getting coverage in the future with the male code on his health insurance record.
“I haven’t been in the position where care wasn’t covered yet, because my last pap smear was before the [gender] change. So, I’m not sure how that will work in the future. I am kind of worried about it,” Jonathan says.
Jonathan recalls speaking to someone who assured him there should not be an issue.
“I don’t know if I believe them,” Jonathan says skeptically of the assurances.
In the future, Jonathan is also considering “top” surgery (mastectomy), something dependent on insurance coverage as well. For both the surgery and his continued testosterone treatments to be covered, Jonathan’s insurance requires a diagnosis of gender dysphoria. According to the American Psychiatric Association, gender dysphoria is a conflict between a person’s physical or assigned gender and the gender he/she/they identifies with. This conflict may be discomfort with their body and/or the expected roles of their assigned gender.
“I was told [by my doctor] that gender dysphoria had to be put down for insurance reasons. It’s a controversial term for trans people,” Jonathan explains. “I never felt like any doctor was putting a diagnosis on me. It was just I was trans, and I wanted to transition, so, ‘This is what we have to say,'” Jonathan rationalizes.
Finding trans-friendly doctors can be daunting, but when it comes to healthcare, that’s just the tip of the iceberg.Click to tweet
Looking ahead, Jonathan has some concerns about healthcare and insurance coverage. He receives insurance through a plan paid for out of pocket, and with a shifting perspective on healthcare reform from the federal government, Jonathan is putting his faith in California state.
“I’m pretty worried about [federal healthcare]. I think California will probably still be OK because of the laws we have. But I worry about a lot of my friends who don’t live here. I know a few people who have had difficulty getting top surgery because their states won’t cover it,” Jonathan says.
The possible changes nationwide also affect Jonathan’s thoughts on where he can live in the United States.
“It’s weird to think if [national healthcare] insurance does change that I would have to consider [insurance coverage] if I ever decided to move to a different state. I have to consider, ‘Will I have access to the healthcare that I need?'” Jonathan asks.
Tips for Transgender People…and Healthcare Professionals Too
“Believe trans people and listen to them. Treat us respectfully the way you’d like to be treated.”
As a patient who manages his routine care, chronic condition care and transition care, Jonathan has a variety of experiences and advice for others. For fellow transgender individuals, Jonathan recommends exploring resources beyond the doctor’s office.
“Try to find out if your community has something like the [Sacramento] Gender Health Center. They’ve been really helpful for me. They have a support group I’ve gone to a few times. And that’s a place to get good info,” Jonathan advises.
The best thing medical professionals can do, Jonathan says, is to just ask for a preference when it comes to names and pronouns.
“I’ve had such a hard time with this [as a patient], and there’s no standard protocol for getting [pronoun and name] info, so it all falls on the trans person. So, ask what their preferred name and pronouns are and try to respect that,” Jonathan concludes.
For those who just want to be supportive, Jonathan’s advice is simple. “Believe trans people and listen to them. Treat us respectfully the way you’d like to be treated,” he emphasizes.
The American experience with healthcare can be convoluted even for those with high-quality care; for transgender Americans, additional barriers and considerations may surface, as they did for Jonathan. In the second part of this series, the experiences of a person who does not identify as male or female will be explored.
If you would like to share your health experiences, please sign up here.
- For more information on Transgender healthcare, see the National Center for Transgender Equality’s Healthcare page.
- Information on “informed consent” versus a “referral letter” can be found: WPATH, Center of Excellence for Transgender Health and darahoffmanfox.com.
- If you’re curious about migraines and hormones, see UCSF’s Center of Excellence for Transgender Health, Feminizing Therapy and Masculinizing Therapy.
- Lastly, a full definition of gender dysphoria can be found here.