Doing it for themselves | The Verge

In 2014, Time announced the “transgender tipping point.” The perilous conditions trans people face now probably weren’t the progress the publication had in mind. In the US, state legislators and even the president are on the attack, while in the UK JK Rowling is proudly funding hate campaigns and the government has just published the Cass Review, a sloppy and ideological blockbuster targeting trans youth.

Trans people just want to be left to their own devices and engage in boring activities like going to the bathroom, being allowed to work in peace, and posting on social media, but apparently that’s not the case.

Joy, ingenuity and trans pride are lifelines for survival. The same goes for access to trans health information, whether public or private, from openly on social media to locked in encrypted Signal chats with disappearing messages. Trans people rely on this information to advocate for themselves to providers who are often not equipped to meet their needs and are sometimes actively resistant to the idea that people with lived experience may have expertise that they lack.

“People are presenting science to their doctors who don’t know how to work with them,” said one transgender health researcher. The edge. “There is no program for [trans healthcare]. They teach doctors. There is always a lot of work to do for a trans patient.

(Several of the researchers I spoke to for this article requested anonymity to protect themselves from harassment.)

Online communities can be hubs for essential healthcare information and advice from lived experiences, but without clear accountability, they also have the potential to host bad actors and bad data. The line between who is safe, what is real, and what is not is becoming increasingly difficult to find. Trans people not only protect themselves with information, but also with tools to verify sources, which can be incredibly difficult in an era of AI neglect and misinformation.

Avery Edenfield, a researcher who focuses on transgender communities and communication, reported in a 2019 article that the way trans people communicate in these spaces is distinctive. Edenfield found that many people engage in the age-old Internet practice of “tactical technical communication,” which includes sharing “medical information or instructions” rooted in personal experience as well as linking to similar resources, a form of lay expertise. However, it also describes “tactical referrals” that direct people to peer-reviewed professional resources.

Through technical and tactical communication, trans people speak directly about their own experiences and provide information based on their lives, from warnings about drug interactions to suggested questions to ask doctors. Many offer long, detailed, and constantly evolving guides to trans health; they are actually technical documents. With the high number of trans people in STEM and communications fields, it’s perhaps no surprise that engineers and communicators are applying their talents to this particular field. Many of these guides cover the use of gender-affirming hormones, for example, with information on dosage and delivery methods that patients can bring to their doctor, who may take a conservative approach that some patients find outdated.

TH, a trans person in the UK who spoke to The edge via Signal, commented that after a long period of waiting to access care, “they didn’t prescribe me T until after March [2025]and even then, it was too low a level. The advice they accessed through online communities was extremely important in pushing back on this dosage.

Tactical References are links to verified and trusted resources, including scientific research, gender-affirming care guidelines, provider listings, and laboratory information. Trans people who are more comfortable skimming academic articles and materials use this skill to empower others. Some of these sources may come from transgender people who have lived experience, but these trans people are also professionals with scientific, medical, or other backgrounds.

Another researcher who studies communication and storytelling in healthcare settings said: The edge“Many people in this community read all kinds of scientific articles. They are intelligent, committed, loving people who fight to do good.”

Sometimes you have to know a person who knows a person. These networks of care, which begin by building trust through personal relationships, echo the Jane Collective of lay abortion providers that operated from 1969 to 1973. Trans people rely on word of mouth to vouch for people, disseminating information in a highly broadcast format that makes it effectively impossible to remain silent. Where one resource decreases, others increase, ensuring transgender people have the opportunity to make informed choices about their transition and overall health. Seizing autonomy and self-determination in a culture that wants to kill you is a powerful application of secular expertise.

Things are not all rosy in these communities. The anonymity and pseudonymity that some participants rely on for safety may also obscure necessary information about a person’s background, particularly in the case of transphobes who may attempt to infiltrate to advance their goals. Whether knowingly or accidentally, people can spread misinformation – today’s social media fraud economy in particular explicitly rewards people who spread fear and confusion among those who are more measured and thoughtful, a lack of flash on substance. The spread of misinformation isn’t limited to bad intentions: Well-intentioned people sometimes share incorrect information, too, making it all the more important to provide people with the tools they need to verify information.

Moderators do their best to identify and remove misinformation, or warn visitors about potentially harmful recommendations or practices, users of several online resources said. The edge. In a closed community, some members may know each other offline or have demonstrated that they are trustworthy. However, this word of mouth is not always enough to protect people. Many crowdsourced materials state that they are not medical advice or a replacement for seeing a doctor, but trans people accustomed to experiencing harassment and abuse in medical settings may not be comfortable discussing their needs openly with healthcare providers, relying on these resources to keep them safe.

Ultimately, these resources play an important role in a culture where power imbalances in medicine, particularly when trans patients are unsure whether they can trust a provider, can put trans patients at risk if they do not have independent access to information about their health. With trans culture and trans health standards evolving faster than medical education, a community with a long history of bodyhacking and taking back control of their bodies believes that knowledge is power.

Q, a non-binary trans person living in the UK, said The edge via Signal that after battling through red tape and NHS waiting lists, they discovered that providers had a very limited understanding of trans identity and relied on rigid, binarist guidelines for gender-affirming care. “There’s also having to realize I’m trans to the satisfaction of (probably cis) medical professionals just so I can have breasts,” they said wryly, articulating a common problem for trans people who don’t have clearly defined binary outcomes in mind when they start taking hormones. Their understanding of the risks, benefits, and potential side effects of gender-affirming hormones, as well as their knowledge of the latest clinical recommendations for trans patients, was critically important to conversations about their care.

Users of these spaces face another risk. Lawmakers and others who influence policy, citing “transgender ideology,” are pushing for a world where talking about transgender people in any context is treated as “adult material,” equating being trans with pornography, which could endanger individual news hosts and broadcasters as well as threaten the existence of these resources. Restricting the presence of and access to trans culture online through measures such as age verification laws aims to suppress transness itself.

Being cut off from the community, as well as access to scientifically accurate and current medical information, certainly won’t stop people from being transgender, but it would make being trans even more dangerous, from taking medical risks without accurate information to feeling hopeless and cut off from the community. People fighting to survive deserve access to the tools that make that fight safer, no matter what the situation is for them, says Alexis Dinno, a professor in the OHSU-PSU School of Public Health, who is herself transgender and collaborated on a public harm reduction guide for adults using self-directed hormones.

She said The edge that “I will always try to be as out there as possible, professionally and personally.” The ability to safely “tinker” with her hormones with accurate scientific information to support her was essential to her own gender expression and health. People in relatively privileged positions, especially given the large number of trans people living on the margins of multiple identities, need to ensure that everyone can access this information.

As the community wakes up to the growing existential threat, nearly a dozen trans people have said The edge that they were nervous about talking about resources for people to share trans health information, even though they felt such spaces are more important than ever. Most also noted, however, that the trans underground has been an essential part of the trans experience for centuries, and that while the present moment may force some into the shadows, it cannot eliminate the fundamental beauty, glory, and joy of being trans. One person told me that being trans was too cool to give it up; plus, as Q says, “trying to legislate that it simply doesn’t exist work.”