Self-Advocacy for the LGBTQ+ Patient

By Jo Yurcaba

Marriage equality was not the final fight for equal rights for the lesbian, gay, bisexual, transgender, and queer (LGBTQ+) community. They face a number of barriers in accessing health care, with serious implications for their mental and physical well-being.

One 2017 survey from the Center for American Progress, for example, found that 8 percent of LGBTQ+ people said a doctor or health care provider refused to see them because of their actual or perceived sexual orientation. That number is even higher for transgender people: 29 percent said a doctor or health care provider refused to see them because of their actual or perceived gender identity.

Discrimination, whether real or perceived, affects health outcomes. According to recent research, LGBTQ+ people who have faced discrimination have worse mental health and higher rates of substance misuse and suicide. Lesbian, gay, bisexual, and transgender adults also suffer from more chronic illnesses, research shows.

Poor mental health and increased incidence of chronic illness make people more at risk for chronic pain. But because many LGBTQ+ people fear discrimination or harassment from health care providers, they delay or forego care.

There are a number of systemic changes that the medical community needs to make in order to better treat LGBTQ+ patients. But there are also some things LGBTQ+ patients can do to better advocate for themselves in health care settings. Here, four experts share what LGBTQ+ patients should know.

Research affirming clinics and providers

Look up doctors ahead of time, or ask your friends who they see. “It’s about shopping around and really knowing what gender-affirming or queer-affirming is,” says Katie Greeley, LCSW, a clinician in Philadelphia who specializes in providing care for people who are trans, nonbinary, and gender expansive.

Clinic websites, especially those that are affiliated with universities, are also a good place to look for nondiscrimination statements, says Danielle Weitzer, DO, a psychiatry resident at Rowan University School of Osteopathic Medicine who has written about treating chronic pain in LGBTQ+ people. Often, those will say things like, “We will not discriminate based on age, race, sexual orientation, or gender identity.”

If you can’t find any nondiscrimination information on the provider’s website, call them. “People can call certain pain management clinics and ask the front staff a question,” Weitzer says. “Worst case scenario, the answer is not good, and they move on.”

Know your legal rights

There are a few specific policies that protect LGBTQ+ folks from medical discrimination. For example, Section 1557 of the Affordable Care Act is a nondiscrimination provision that prohibits discrimination on the basis of race, color, national origin, sex, age, or disability in federally-funded health programs or activities. Though the provision is currently being challenged in court, it still stands for the time being.

More generally speaking, the 14th Amendment includes an equal protection clause that requires federal and state governments to treat people equally. There are also public accommodations laws at the state level that prohibit discrimination in public spaces.

Most states only explicitly prohibit discrimination on the basis of sex, but courts have found that protection extends to different gender identities and sexual orientations, says Taylor Brown, staff attorney for the American Civil Liberty Union’s LGBT & HIV Project.

Marriage equality has also afforded married same-sex couples the same rights to hospital visitation as married heterosexual couples, Brown says. In a long-term relationship, you would be protected under public accommodation laws that are inclusive of sex because most hospitals are considered public accommodations.

Still, Omar Gonzalez-Pagan, senior attorney and health care strategist for Lambda Legal, recommends that couples meet with an attorney to create a health care proxy. (See “What LGBTQ+ Families Need to Know About Their Legal Rights”)

Bring someone to your appointment with you

Because so many LGBTQ+ people have had bad experiences with medical providers, they feel nervous about pursuing care and often don’t. Weitzer, the psychiatry resident at Rowan, says that if you have trouble advocating for yourself due to past bad experiences, you can bring a friend or family member who can help provide a “shield” from potential discrimination. They can also “be a little bit of a voice for this patient that might not have found their own voice because they’re afraid of… discrimination.” Weitzer, who has personal experience as a trans woman, says this is a useful tactic in many contexts, even outside of medicine.

You might have to educate some providers

Many providers and offices still have forms that don’t include the correct gender options for trans people, and providers often assume all patients are heterosexual. “It’s not fair to the patient,” Weitzer says, noting that doctors should be providing forms that serve all people. She recommends telling your doctor that the form didn’t offer what you need. Often, providers can make a note in your chart about your gender and what pronouns you use.

When you’re seeing a new doctor, you will likely have to answer basic questions about your life and health, which might include questions about your sexual orientation. But if physicians are asking questions, Weitzer says that’s a good sign that they want to learn and help. “Patients are physicians’ best teachers,” she says.
If your doctor doesn’t ask, but you think your sexual orientation and gender identity are relevant to the health appointment, you can voluntarily share it with them if you feel comfortable.

Find community

If you’ve had bad experiences while seeking health care, Weitzer recommends talking to people about them. “In mental health, the best overall sense of well-being is a sense of community and support,” she says. “I always recommend that people get a mentor, especially people in the GLBT community who maybe experienced the same issues, and have someone directly that can understand and identify their experience and kind of tell them themselves how they got out of their own situation.”

LGBTQ+ community organizations can also often recommend health providers who are inclusive.

If you experience medical discrimination, Brown and Gonzalez-Pagan both recommend filing a complaint with the Office of Civil Rights at the Department of Health and Human Services. You can also seek pro bono legal representation with your local ACLU chapter or Lambda Legal.

Know that you can’t do it all

The fight for equal rights isn’t all on your shoulders, and sometimes you might not have the time, energy, or financial resources to push back. Greeley says it’s important to take care of your mental health.

“When we think about the number one thing that contributes to poor mental health outcomes for the LGBTQ, and especially the trans and [non-binary] community, it’s navigating systems that are not designed for them,” she says. “As someone navigates these systems, they chip away at yourself, your confidence and who you are, how that is not affirmed every single day. That is a systems issue — that is not an advocacy issue.”

Do what you can to advocate for yourself, but remember: providers and administrators also need to usher in change.