Minority stress is the reason for this difference, says Lauren Beach, PhD, a research assistant professor at Northwestern University’s Feinberg School of Medicine and the associate director of the EDIT program at the Institute for Sexual and Gender Minority Health and Well-Being in Evanston, Illinois. “There’s a higher burden of poor mental health among sexual and gender minority people because of the stigma they face, and this contributes to diabetes burden,” she says. According to a 2019 webinar by the Fenway Institute, diabetes risk factors with higher prevalence among LGBTQ+ people include depression, smoking, risky drinking, taking HIV/AIDS medication, and the disorder polycystic ovary syndrome (PCOS), which disproportionately affects lesbians. It doesn’t help that the disparity is practically invisible in mainstream diabetes resources. Theresa Garnero, CDCES, a certified diabetes care and education specialist, an assistant clinical professor, and the director of diabetes certificate programs at the University of the Pacific in Sacramento, California, raised this alarm in July 2010 in the American Diabetes Association journal Diabetes Spectrum, revealing that, although there are more lesbian, gay, and bisexual (LGB) people with diabetes than there are total people with type 1 diabetes, LGBTQ+ data is underreported or blocked. A recent example of this is the U.S. Department of Health and Human Services’ striking of LGBTQ+ people from its 2018–2022 Strategic Plan, which sets the agency’s goals, such as initiatives aimed at preventing and managing chronic conditions like diabetes. More than a decade after Garnero’s paper, some organizations offer resources, like the 2019 National LGBT Health Education Center’s diabetes brief, but few better-known resources mention the risk. The first LGB-focused studies hit the journals in 2014, but the available data sets didn’t include gender identity or expression until 2017, so scientists are only beginning to cover the LGBTQ+ spectrum. That may change, thanks to the 21st Century Cures Act, signed December 2016, which authorized funding for the National Institutes of Health’s (NIH) Sexual and Gender Minority Research Office, which formed in 2015. Their 2021–2025 strategic plan focuses on increasing clinical research that represents LGBTQ+ people, especially when it comes to chronic conditions, such as diabetes and heart disease. The plan also emphasizes supporting researchers from within the LGBTQ+ community and training researchers who receive NIH funding. A pilot study published in the April 2020 issue of Health Equity suggests the value of training. First-year medical students who underwent a mandatory one-hour training on transgender health needs and disparities significantly changed their attitudes toward transgender patients. And that positive attitude and accurate knowledge remained with the medical students when the researchers followed up a year later. For now, the stigma that’s making people sick also makes it tough to access healthcare. “The purpose of healthcare is to improve the health and wellness of the patient, but that isn’t always what happens in the doctor’s office,” says Dr. Beach. It’s a place where patients can feel “blamed and shamed” for body size or diabetes status on top of systemic issues like homo- and transphobia, racism, and ableism. RELATED: Why Are Black Americans at an Elevated Risk for Type 2 Diabetes?
How to Put Your Health First if You’re an LGBTQ+ Person Managing Diabetes
So, how can you take charge of your healthcare if you are part of the LGBTQ+ community? Find your healthcare unicorn. “It’s going to be a while before we get the medical establishment to behave as it should, and you can’t let your health suffer while you’re waiting,” says Joshua Safer, MD, the executive director of the Center for Transgender Medicine and Surgery and a professor of medicine at Mount Sinai in New York City. Find providers in the Gay & Lesbian Medical Association’s database or the World Professional Association for Transgender Health (WPATH) directory. You can also ask for a referral from your local LGBTQ+ center or Planned Parenthood. Learn to read lab results. Diabetes screening means bloodwork, and lab results are tricky. Brush up on your knowledge with the American Diabetes Association’s explainer or the UCI Health blog. Trust your gut. If something feels off with a healthcare provider, you don’t have to go back — or even finish that visit. “You are the authority on yourself,” says Ann Williams, PhD, RN, CDCES, a retired research assistant professor at Case Western Reserve University in Cleveland. “You’re the one who can say, ‘Is this emotionally okay for me or not?’” she says. Lean on your community. Williams recommends taking a support person to your appointment if you expect to have trouble advocating for yourself. You can also offer to call healthcare providers and vet them for LGBTQ+ siblings who face more barriers. Give feedback. It’s hard to tell doctors they can do better, but direct communication — either from you or a support person — may help healthcare providers improve. Consider handing healthcare providers this 2019 American Association of Diabetes Educators tip sheet or hooking them up with the National LGBT Health Education Center’s resources. Focus on yourself as an act of pride. The LGBTQ+ legacy is resistance, and stigma is just another barrier begging to be knocked down. One way to live this out is by doing what makes you feel good, Beach says — including exercising, getting plenty of sleep, going to therapy, and loving yourself and your people. “Being healthy and well in a society that’s making you sick is a radical act,” she says. “Wellness and happiness and joy in a society that traumatizes you and your community is fighting back.”
