Members of the LGBTQ+ community often face additional challenges when managing migraine, including stigma and barriers to accessing care. Learn how to offer support and help minimize some of these common obstacles.
In February 2023, the American Migraine Foundation hosted a webinar discussion exploring how migraine impacts the LGBTQ+ community and what people can do to help break down these barriers to care. We spoke with four panelists: Dr. Barbara Nye, neurologist, Atrium Health Wake Forest Baptist; Joseph Coe, host of the Talking Head Pain podcast and the Global Healthy Living Foundation’s (GHLF) Director of Education; Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF; and Yuri Cárdenas, patient advocate.
Below, we summarize what our panelists had to say about the unique challenges the LGBTQ+ community faces in accessing migraine care, and what everyone can do to ensure all people who experience migraine can get the care they deserve.
How does migraine affect the LGBTQ+ community?
Unfortunately, there hasn’t been a lot of research focused on migraine within the LGBTQ+ community. A National Health Survey from 2013-2018 reported that the prevalence of headache and migraine was 36.8% for bisexual women, 24.7% for lesbians, 22.8% for bisexual men, and 14.8% for gay men. These rates are notably higher than for heterosexual individuals: 19.7% for straight women and 9.8% for straight men. Another study published in JAMA Neurology found that gay, lesbian, or bisexual individuals were 58% more likely to experience migraine than heterosexual individuals.
Sarah Shaw suspects that the true percentages may be even higher for LGBTQ+ people due to obstacles we face accessing care and participating in studies. She also points out that the National Health Survey did not include non-binary people or trans women and men.
Why are migraine rates higher among the LGBTQ+ community?
More research is needed, but one prominent theory points the finger at higher levels of stress, a known migraine trigger. The additional stigma and discrimination faced by many LGBTQ+ individuals—both in accessing medical care and in other situations—can contribute to higher levels of stress. Another theory adds that lack of social safety for stigmatized individuals is what leads to worse health outcomes. Even when faced with discrimination, having social safety can buffer against the effects of minoritized stress.
Panelist Joseph Coe recently discussed this topic with researcher Nicole Rosendale, MD, Assistant Clinical Professor at the University of California, San Francisco. Dr. Rosendale works on the PRIDE Study, the first large-scale, long-term study of LGBTQ+ individuals in the United States. “[The study] found that social stresses and discrimination affect migraine severity and disability in the LGBTQ+ community,” says Coe. “As a gay person, I was not surprised by that, but it was very validating to hear.”
What are the barriers to migraine care for the LGBTQ+ community?
Members of the LGBTQ+ community face distinct barriers when it comes to getting care for migraine and, oftentimes, even basic healthcare. Many people with headache and migraine surveyed in the PRIDE Study wanted to see neurologists but did not have access. Sarah Shaw says, “Some of the most vulnerable communities out there are not getting the help and support they need because they do not feel safe going to the doctor.”
Feeling stigmatized and discriminated against can make many people feel unsafe, unwelcome, and less likely to seek care. Many trans and non-binary individuals face additional obstacles to migraine care, including having to deal with healthcare providers and staff using incorrect pronouns or dead naming (using the birth name of a transgender person who has changed their name).
Support is crucial for navigating the American healthcare system, and LGBTQ+ individuals often have to seek out or create their own support networks. This can be especially difficult for younger members of the community, who cannot always rely on the support of family and friends. “Who’s going to be able to take you to get the care you need when you are kicked out or disowned from a very young age?” Shaw says. “Not having that support system, not having that insurance coverage from a young age—[that] can follow you throughout life.”
How can we break down the barriers to migraine care?
Increasing visibility, representation and inclusion in healthcare spaces is the first step toward making sure LGBTQ+ individuals feel comfortable regularly visiting the doctor. “I think it’s really important that we have healthcare systems, doctors’ offices [and] advocacy spaces that are inclusive, that make you feel warm and welcome,” says Shaw. “We want to make sure that from the doctor to the receptionist to the person greeting you at the door, that space is safe and inclusive.”
Dr. Barbara Nye notes that current studies are limited by lower rates of participation by LGBTQ+ individuals. “So many of our current research studies really are very female-oriented and white-oriented, and that doesn’t represent the migraine population,” she says. “We know that [migraine] affects every race and diversity of genders, and we haven’t fully described all of this. It’s so important to get involved in research and advocacy.” She believes that as more LGBTQ+ individuals feel comfortable and supported by their doctors, participation in studies will increase.
Trauma and repeated stress due to marginalization are proven to negatively impact mental health, but their effect on physical health needs to be studied much more. Yuri Cárdenas notes that it is critical to build better support systems for LGBTQ+ people, pointing to the importance of social safety, “reliable social connection, inclusion, and protection.” They explain, “people who are marginalized have better health outcomes if they have social safety spaces to be themselves and not have to constantly monitor how they speak or look to avoid being harmed.” Creating and encouraging social safety and support for LGBTQ+ individuals can have life-changing benefits for those in the community.
Visit the American Migraine Foundation’s Resource Library for more information and articles on Migraine in the LGBTQ+ community.
The American Migraine Foundation is committed to improving the lives of those living with this debilitating disease. For more of the latest news and information on migraine, visit the AMF Resource Library. For help finding a healthcare provider, check out our Find a Doctor tool. Together, we are as relentless as migraine.