Nowadays, it's commonplace for people to turn to the internet for information about their health. WebMD, MayoClinic.com and other online consumer health sites offer a wealth of resources on different diseases, treatments, medical advancements and more. But, while these websites are invaluable tools for the general population, they often fail to provide the information needed by transgender people looking for answers.
Advocates say that, although some online portals dedicated to transgender health exist, trans people -- particularly those living with HIV -- need access to more comprehensive and readily available resources. Although the information online is helpful, not enough of it touches on specific and unique health issues facing the transgender population, they say. For example, trans people living with HIV might need to know how hormone therapy interacts with antiretroviral therapy (ART), and when they are traveling, they might need to know how to refill prescriptions on the road if they're uncomfortable entering unfamiliar pharmacies.
"As is true for any community, it is important to have good quality health information easily available," said Laura Erickson-Schroth, M.D., a LGBTQ and emergency psychiatrist who edited and contributed to Trans Bodies, Trans Selves, a groundbreaking resource guide for the transgender population that covers health and legal issues, as well as cultural and social questions, among other topics.
"If it is not," she added, "people will seek it out in other ways and may be given misinformation by friends who are also not informed."
TheBody.com recently spoke with Erickson-Schroth, who is also co-author of the new book, You're In The Wrong Bathroom!, about the lack of accessible online resources, where information is available and why all-inclusive consumer health information is vital to trans people's lives.
Laura Erickson-Schroth, M.D.: I actually think that there are a lot of resources available; they can just be hard to find. The internet is a great thing, but sometimes navigating it can be difficult.
AS: Where can the trans community find good resources?
LE-S: There are a ton of wonderful books on transgender topics, although not many address health. The Remedy is an important book about queer/trans people's experiences with health care systems. Freeing Ourselves is a powerful book about health and self-care for transmasculine people of color, but I'm not sure if it's still available. For youth, I recommend The Gender Quest Workbook, which can help them think through how they approach their gender. Books on trans health care for professionals include the Fenway Guide to LGBT Health and LGBT Healthcare: A Clinical Guide. For those working with children, two good books are Gender Born, Gender Made and Transgender Children and Youth.
The Fenway Institute has excellent free online modules for health professionals. There are also online hormone prescribing protocols through the University of California San Francisco, Callen-Lorde and the Endocrine Society. Therapists can access the American Psychological Association guidelines for trans care online. The World Professional Association for Transgender Health publishes standards of care for treating trans clients.
For those who can attend in-person events, I highly recommend the largest trans conference in the country (which is free!), the Philly Trans Health Conference.
AS: What types of online resources are missing but are needed?
LE-S: One thing I think people have a hard time finding is information for consumers about primary care and hormone treatment. There's a lot of information for providers, but not as much for trans people themselves. ... I would love to see more direct-to-consumer online resources about trans health.
AS: Why is it vital to have good online consumer health resources for trans people?
LE-S: As is true for any community, it is important to have good quality health information easily available, because if it is not, people will seek it out in other ways and may be given misinformation by friends who are also not informed.
In addition, trans people face many barriers to seeking traditional medical care. They (realistically) fear discrimination in health care settings, as clinic/hospital staff are just as likely as others to be transphobic. They also know that their providers are often uneducated about trans-related health. A 2011 study found that, on average, medical students received only five hours of LGBTQ-related education over their entire four years in school.
AS: How does a lack of online resources impact trans' lives?
LE-S: Without reliable, easily accessible resources, people spend a lot of time and energy that they could be spending elsewhere seeking out information. For those with less education or less access to financial support or traditional health care, this can lead to poor primary care follow up and the exacerbation of health issues such as diabetes and high blood pressure, as well as the use of street hormones, which can be dangerous.
AS: How would full, comprehensive online consumer health resources improve trans people's lives?
LE-S: Reliable, accessible online consumer trans health resources would be empowering. They would provide people with a sense of control over their own lives.
This transcript has been lightly edited for clarity.
Annamarya Scaccia is an independent journalist.