Failed by the healthcare system, transgender people find help elsewhere

Paging Dr. Internet, we need a diagnosis. In this series, Mashable examines the online world’s influence on our health and prescribes new ways forward.

For many transgender people, accessing gender-affirming care is a labyrinth of insurance coverage trap doors, referral letter hoops, and discriminatory falling axes. Social media and online communities are often the guiding threads out of the waiting room.

Gender-affirming care is lifesaving. It has been shown to reduce the risk of suicide and increase the mental health and overall wellbeing of trans individuals. The American Medical Association, American Academy of Pediatrics, and the American Psychological Association all released statements this year on the life-threatening consequences that restricting gender-affirming care would have on trans youth.

When legal protections for transgender people are something that can be lost with a mere flip of the political switch, and healthcare systems still don’t know how to meet their needs, many trans people turn to online communities to help them live as their true selves.

Like many others, Schuyler Bailar, the first trans NCAA Division 1 men’s athlete, looked to social media when he started medically transitioning.

“Nobody was talking about these things in a way I had access to. I felt like I had to do it on my own,” Bailar said. “And I think a lot of people still feel like they’re stumbling through it alone, because most healthcare providers are not trans-informed.”

Getting a foot in the clinic door

Before trans people can be considered for gender-affirming care, they first have to prove that they are trans.

Medical gatekeeping for gender-affirming care, or the many checkpoints patients must pass through before accessing hormone therapy and surgery, typically takes the form of one to two referral letters from a therapist for each treatment, often alongside separate medical evaluations. These measures are intended to confirm that trans patients are both “psychologically” and “practically” prepared to medically transition.

But in practice, this only compounds treatment delay. Even if a trans person were able to secure an appointment during an ongoing shortage of mental health providers, psychological evaluations may take up to a year to complete, and many therapists aren’t equipped or knowledgeable on how to conduct these assessments. These intermediary steps can become frustrating and dehumanizing hoops that put trans patients in the position of needing to convince their providers and insurance policies that their needs are both authentic and urgent enough for medical attention.

To support people as they circumvent this gauntlet, one Reddit user compiled a list of informed consent clinics in the U.S. that grant people the autonomy to have a direct conversation with their medical provider and be able to decide for themselves whether medically transitioning is right for them. That means no therapist referral letters are needed. Users jumped in with recommendations and cautionary tales about local providers. And one of the most common pieces of advice is to keep looking until you find someone who doesn’t need to certify you as trans in order to provide you care.

Teaching your doctors how to care for you

Getting a foot in the door to receive care can be a several-year-long trial of mental, physical, and financial endurance. In 2020, 67 percent of state Medicaid plans covered hormone therapy, while 49 percent covered surgery. And the record number of anti-trans bills sweeping the country over the past two years continue to threaten these benefits.

But even when trans people are able to see a healthcare provider, many are hesitant to turn to them for advice. Apart from outright transphobia and discrimination, many doctors just don’t know the answers.

One reason for this is the lack of medical education and training on how to care for trans patients. A 2011 study of 132 U.S. and Canadian medical schools found that a median of five hours were dedicated to teaching LGBTQ-related content, with substantial variation in quantity and quality of instruction. Forty-four medical schools reported zero hours of LGBTQ-related clinical instruction, and trans topics were most often left out. That research is the latest comprehensive look at the topic and, years later, there is still no consensus on how trans health topics should be implemented and evaluated in the medical curriculum. However, a 2020 study assessing how prepared and knowledgeable medical students at Indiana University, University of Michigan, and University of Washington were to care for LGBTQ patients recommended more than 35 hours of competency education. Without more robust and standardized training, many doctors simply aren’t adequately equipped to treat their trans patients. A 2019 study of over 1000 residents at 120 internal medicine programs found that residents scored an average of 57 percent on trans-specific questions in a test about sexual and gender minority health.

“Trans people shouldn’t need to be more knowledgeable about their medical care than their doctors.”

“People need to know what ‘transgender’ means. They need to know what ‘nonbinary’ means,” Bailar said. “And that includes understanding the actual things that trans people undergo…The number of times I’ve heard horror stories of trans people going to the doctor and saying, ‘I’ve gotten a phalloplasty’ and a doctor being like, ‘What is that? Let me see,’ is ridiculous. That should never, ever happen,” Bailar added, referring to the surgical construction of a penis.

As a result, many trans patients end up taking up the mantle of educating their providers. “Trans people shouldn’t need to be more knowledgeable about their medical care than their doctors,” Bailar said. “It is not my job as a non-doctor to treat myself.”

However, as Bailar and others have noted, many trans people are often more knowledgeable about their own medical needs than their providers. A 2015 survey of 28,000 trans people in the U.S. by the National Center for Transgender Equality found that 24 percent of respondents had to educate their own providers in order to get the care they needed.

And trans healthcare isn’t just limited to endocrinologists and surgeons. Trans people still need routine, preventive, and emergency care. Discomfort and unfamiliarity with trans health can lead to unrelated medical conditions being ascribed to having a trans body, as if being trans is a contraindication to other forms of care. But sometimes a broken arm is a broken arm.

“We need more people in trans healthcare so that trans healthcare can be something that people actually pay attention to,” Bailar said. “So trans kids don’t have to be asking other trans kids — they can actually ask the professionals.”

But when the professionals don’t have the answers, trans people look to social media. Through his Instagram account, Bailar has become one of the trans people he used to look towards for guidance. And he takes this role very seriously. “That’s why I do the research. And that’s why I provide as much background information as I can,” said Bailar. “The end goal is to share as many resources as possible with folks so they can actually get access to what they need.”

And one of the reasons why people turn to Bailar and other trans communities online is that they trust them to have their best interests in mind.

“Finding help on social media has been a stronger outlet than words coming out of a doctor’s mouth,” said Monét, a 22-year-old Black nonbinary individual, who requested to use a pseudonym to protect their personal safety. “You can ask a surgeon these questions, but cis surgeons have never had surgeries like this done on them before.”

The virtual support group

In addition to seeking out influencers like Bailar, trans people also use social media to explore their identities and talk to others about it — including their parents.

Dr. Ellen Selkie, an adolescent medicine specialist at the University of Wisconsin, noticed that many of her patients came to terms with their gender identity through social media. “They didn’t really have a sense that there was a name to the way they were feeling,” Selkie said. Her 2019 study of trans youth found that they used social media to connect with other trans people they couldn’t find offline, building their confidence and comfort with their gender identity. In this way, online communities can act much like informal support groups offering social, emotional, and informational support that trans youth still on their parents’ health insurance plans might not be able to access without coming out to their families — itself a topic they may be seeking support for. “Meeting and getting support from other people about what they were going through was really valuable to their understanding of their own gender,” Selkie said.

Teens also used social media to find information about how to safely begin medical transition. Selkie found that many of her patients were well-equipped with prior knowledge of medications and surgeries. “The education I do in clinic is really geared toward parents,” Selkie said.

Social media may also serve as an intermediary between teens and their parents. The comment sections of a number of YouTube videos speaking directly to parents of trans children have many users noting their intention to use them to come out to their parents. “Social media can be a tool kids will use to triangulate with their parents to help them understand what they’re going through,” Selkie said. “Because parents are the gateway to being seen by me.”

“If we can help your parents be supportive in any way, that’s going to bode well,” Selkie said. “The prognosis is going to be better.”

The one-way mirror of the anecdotal

Part of the draw of social media is the wide range of personal experiences it offers. But it’s also one of its drawbacks.

The Gender Dysphoria Bible is a living reference document of the various forms gender dysphoria could take beyond the typical “born in the wrong body” narrative. Jocelyn Badgley embarked on this project out of a desire to create a trusted source to “educate and elucidate the trans experience” for everyone. While Badgley, a trans woman who began transitioning when she was 36, did find that social media had armed her well against the challenges she faced seeking gender-affirming care, mainstream emphasis on extreme physical discomfort did not gel with her own personal experience of dysphoria.

So she collated and organized research and anecdotes of trans experiences of gender dysphoria across social media platforms. “That’s why everything is presented as generalities…with plenty of disclaimer that all trans experiences are valid,” said Badgley. “I wanted the site to be more about finding relatable commonalities, rather than checking off symptoms.”

On the internet, anecdotes in aggregate can feel like they have as much veracity as a peer-reviewed study. And for the trans community, informal systematic reviews like Badgley’s may be the most relevant and up-to-date resource available.

Research on trans people is lacking, both in number and in quality. Part of the problem is that there hasn’t been definitive data on how many trans people there are in the population. The U.S. Census Bureau only just began collecting data on gender identity in July 2021. The current most cited figure comes from a 2016 study estimating that 0.6 percent of U.S. adults, or 1.4 million people, identify as trans. And a lack of uniform research methodology, including inconsistent terminology and lack of diversity in study participants, further hinder the development of consolidated and effective standards of care.

“Communal knowledge saved lives.”

“Academic knowledge will always lag behind community knowledge simply because the community does not need to apply rigor,” Badgley said. “Urban support networks were often the only ways most people transitioned in the old days. Communal knowledge saved lives.”

While each individual experience is valid, they’re still hyperlocal truths. Extrapolating beyond that can be an uneasy gamble, especially when you’re a minority within the minority.

Such was the experience of Monét. They found little information online that matched their own personal background. “I often ask myself like, damn, do I have to be one of the pioneers and expose all the stuff that can go wrong and right?” One way this manifested was the difficulty they had looking for surgery result photos of dark skin, which can be prone to raised keloid scars. This paucity of information was reflected in the medical care they received. “I find myself still looking up stuff like ‘Will this help my scars since I have darker skin?’” they said. “When I ask certain questions, my doctors will just be like, ‘Well, we just don’t know that yet.’ And that can be really disheartening.”

One way to circumvent this is to diversify who you’re following on social media. Subscribing to a range of accounts that include people in different stages of transition, healthcare providers, and other trusted sources can help broaden the sample of stories available to you. “Don’t compare your surgery results to a white guy with the best care in the whole world,” they said. “Open discussions with everyday people within your tax bracket that share your point of view.”

But what’s on social media is not evergreen. Despite the trove of communal knowledge that online trans communities have built, existing guides and know-how may become out-of-date as medical research advances. And when people far enough along in their transition graduate out of these spaces, they leave informational deserts behind them.

The onus of assessing the veracity of online health information still falls on the individual. General tips on how to fact-check don’t easily apply to trans communities where anonymity is vital to maintain personal safety, and existing research isn’t necessarily caught up with present needs and experiences. Authoritative and up-to-date sources may not be readily available to counterbalance anecdotal and secondhand health information. So what’s left is your own judgement, striking the fine balance between tempered skepticism and blind faith even as desperate hope tips the scale.

Taking care into your own hands

When the waitlist to receive care stretches from several months to years and medical gatekeeping and financial barriers become insurmountable, some trans people resort to taking their care into their own hands. This is where online communities offering advice on how to circumnavigate the healthcare gauntlet, or “DIY transitioning,” step in. Self-treatment has its faults, from online pharmacies that sell counterfeit or low-quality hormones to potentially life-threatening complications from self-surgery, but sometimes a flawed option is the only option. And when survival is on the line, it’s a risk many are willing to take.

While some users don’t have any formal healthcare support, many do eventually transition into official medical care, DIYing for five years or however long it takes to get an appointment at the gender identity clinic. Others seek assistance on how to handle providers prescribing incorrect dosages causing unwanted side effects. And for those in countries where being trans is criminalized or undergoing a crisis, medical advice can only go so far — information on how to claim asylum are all users can offer. As it stands, transgender health disparities are geographically siloed.

Until there’s an inclusive healthcare system that understands and respects the full breadth of human biology and experience, online communities will step in for trans people as their patient navigators, their endocrinologists, their social workers, their support groups, and their advocates — all taken with a grain of salt.

Learn more about trans care or get help:

Vivian Lam is a writer, editor, and unrepentant shower singer based in San Francisco. They currently serve as an assistant health and biomedicine editor at The Conversation US, and can be found at https://vivianlamblog.wordpress.com/.

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