By Cindy Veldhuis
NOTE: This article focuses primarily on research and health among cisgender queer women, largely because I am a cisgender queer woman myself, and this perspective has shaped my career path as a researcher. I hope this article inspires researchers with other areas of LGBTQ+ community-related expertise to connect with our communities to share research findings. I think this is critically important so that together, we can work to reduce the significant health inequities that LGBTQ+ people face compared to cisgender, heterosexual individuals.
To that end, my team and I—joined by some Chicago-area psychotherapists (including a sex therapist)—are hosting an event on Nov. 3 at Nobody’s Darling, 1744 W. Balmoral Ave., to talk about our research and to answer any and all questions you might have about queer and trans relationships. There are more details about this event at the bottom of this article—we hope you will join us because we rely on our communities to tell us what is important to you so that we can make sure our research is truly grounded in your needs.
I have never—not once—been asked about my sexual identity by a healthcare provider. Not even at an LGBTQ+ clinic in New York City. I have been asked about my pronouns, asked about HIV status and risks, and asked about cigarette smoking—but no provider has ever asked me about health concerns that are unique and specific to queer women, like depression, partner violence or suicide risks.
How about you? Has your primary care provider ever asked about your sexual identity? The gender of your partners? Whether you are safe at home? Have they talked to you about health issues that queer women are more likely to experience than queer men or cishet women? Or about health issues that unequally affect trans and nonbinary people other thanHIV and STI risks? I hope you can answer yes to some of these questions. But if you can’t, you are not alone.
For many queer women, it can feel like we aren’t fully included in women’s health care and we’re not fully included in LGBTQ+ healthcare, either. We don’t know where we belong, so it’s easy to feel like we don’t belong anywhere. We could talk for hours about why this is—but the take-home is that it essentially communicates to queer women that healthcare providers are not truly interested in our health. Our well-being just doesn’t seem important.
Before I go any further, let me take a step back and introduce myself. I’m a psychologist, assistant professor and researcher at Northwestern University. I’m also the lead investigator of the SOQIR study (pronounced “so queer”), which stands for: Study on Queer Intimate Relationships (www.soqir.org). My research largely focuses on cisgender queer women’s and transgender and nonbinary people’s health and relationships, because there is little research on these topics—despite the importance of relationships and health for our communities.
For me, this work is professional, and it’s also personal.
Underrepresentation of queer women was a huge issue for me growing up and during my education. This lack of role models has had pretty sizable impacts on my own identity processes (like self-acceptance) and my ability to see what a future could hold as a queer woman. This also pretty profoundly shaped the trajectory of my career.
In grad school, I knew that I wanted to focus on LGBTQ+ women’s health—but this wasn’t possible because no faculty in my department worked in this area. There were HIV researchers—but no queer women’s health researchers. In fact, I have never had— from kindergarten on—a single out queer woman professor or teacher (have you?). Ever. I mean, even my women’s studies professors were straight! And I went to college in Eugene, Oregon—which I would argue is the queer women’s capital of the west coast. As an undergrad, I majored in theater, so I had a lot of out gay men professors which was helpful, but even so, navigating a personal and an academic life when no one around you is like you is super-challenging.
So, in my PhD program I focused on women’s mental health broadly, with the plan to specialize in queer women’s and trans and nonbinary people’s wellbeing and relationships in my postdoctoral fellowship (which is basically even more training after you get a PhD). There was a professor in the UIC School of Nursing whose research focused on queer women—Dr. Tonda Hughes. I mustered up the courage to ask Tonda if I could work with her, and she said yes (this was like a dream come true!).
The day before I graduated with my PhD, Tonda told me she was moving to New York City—to take a faculty position at Columbia University. She asked if I would want to come with her to NYC and Columbia, and I said (and embarrassingly enough, this is a quote!), “I would go anywhere with you.” I’m such a queer woman stereotype I brought a U-Haul to my postdoc.
Finally, after years of hoping and trying—I was getting training and support to do the research I had wanted to do for so long. And maybe, just maybe, I could be that out queer woman professor I had needed when I was a student.
Health Check: Queer Women’s Health Research in Critical Condition
The sad truth is that there is simply not as much research among queer women as there is among gay and bisexual men. Also, sadly, the research that does exist on queer women is not as advanced as the research that exists about queer men. This has a tremendous impact on our health, our healthcare, and on how educated healthcare providers are about the health and wellbeing needs of our communities—and how prepared they are to provide care to us.
This lack of data on queer women’s needs and experiences exists despite the fact that women are more likely than men to identify as LGBTQ+. According to Gallup data, almost 60% of all LGBTQ+ people are women. Overall, in the US 8.5% of women compared to 4.7% of men identify as LGBTQ+.
What this means is that despite there being more queer women in the US, there is comparatively little research among us—and few opportunities for queer women to share our experiences with researchers. And this, in turn, means that research on queer women is not reaching healthcare providers, therapists, policymakers, educators, and funders. This also means that there is a huge gap in knowledge about our health and wellbeing needs among the very people who should be providing care to us, creating policies to support our rights and needs, and educating us and the next generations about queer women’s lives and experiences.
Much of the research we do is funded by the National Institutes of Health (NIH). To quantify this, of all research funded by the NIH in 2021 that was focused on LGBTQ+ people, 56% of the 544 NIH-funded studies were HIV/AIDS-related. If we look at specific populations, 43% of studies focused on gay and bisexual men, 30% focused on trans people (this was not broken down further by gender so we don’t know the proportions of research focused on trans women and trans men specifically), 15% among bisexual people (again, not broken down by gender), and 7% among lesbian women.
So overall, little research focuses on cis and trans queer women’s health and well-being. These data also highlight that much of the research being done among gay and bisexual men and trans people is focused on HIV risks. There is far less research among queer men and trans people on mental health, relationships, and physical health outside of HIV and HIV risks—so there is definitely more research to be done with these communities as well.
Why does this matter? Funding by the NIH and other federal agencies shapes what research is being done, so uneven funding for different LGBTQ+ communities’ health and different health concerns has downstream impacts on what we know and don’t know about our wellbeing.
And as a result, there is still so much we don’t know—like, is menopause different for queer women and trans men than cishet women? Well, honestly, we know very little about queer women and trans men’s aging overall. We know very little about how our relationships may influence our health and well-being. And how the pandemic affected us.
We don’t really know the “whys” and “hows” of queer women’s health either. For example, queer women drink alcohol at higher rates than cishet women. Why is that? We think it might be related to a combination of LGBTQ+-related stigma, sexism, racism and other sources of oppression/stigma—but we don’t know for sure due to the lack of research. We all likely have hunches about the root causes of these health issues, but there is just too little research to answer these important questions with actual data.
Putting queer women’s health and relationships back into LGBTQ+ health research priorities
Two years ago, I was hired at Northwestern in the Institute for Sexual and Gender Minority Health and Wellbeing (ISGMH) to bring a new focus on queer women’s health to the Institute. In my research, my goal is to learn more about our health and our needs, to take our findings back to our communities, and to give queer women tools to advocate for themselves.
My research mostly uses qualitative methods. What this means is that I get to sit with people, pepper them with questions, and learn all about them. What an amazing job, right? We want to learn about cisgender queer women’s and trans and nonbinary people’s (basically everyone in the LGBTQ+ community other than cisgender men) intimate relationships to understand all the stressors in their lives and how those stressors affect their relationships. My team and I have interviewed around 30 couples thus far.
The stories we have heard have ranged from heartwarming stories of queer and trans love and resilience to wrenching stories of abuse, violence, and rejection. Over and over, people who take part in our research tell us how grateful they are to be included in research and how meaningful it is for them to share their stories. But this is sadly because, again, queer women are not included in most research and because so much of the research on trans and nonbinary people is focused on sexual risks.
I hadn’t fully considered that the simple act of asking queer women to talk to me about their experiences could have potentially profound effects on their own lives—and mine. Research is powerfully important—both in micro ways, like helping the people we interview feel seen, heard and valued—and in larger societal ways by making queer women’s lives and experiences visible so that our research can truly make a difference for queer women. And hopefully, because of our research, my future healthcare providers will know all about the health needs of queer women.
An invitation to tell us what you think
To bring our work to the community, we’re holding an event at Nobody’s Darling on Nov. 3 from 3-5 p.m. to eat, drink, talk a little bit about our research and get your input. We are bringing a team of researchers and therapists who identify as queer and/or trans and who are experts on queer and trans wellbeing.
We will talk a little bit about our research and then open it up to the audience to tell us what you think about our research and what needs you see in your own communities that researchers like us should know about. We’ll answer your questions about queer and trans relationships, sex and mental health, and just talk about the community’s needs and concerns. It will be like a mash-up of a town hall and an AMA (ask me anything) with cozy, queer autumn-themed snacks.
Remember, Nov. 3 is the day we all turn our clocks back an hour, so what better way to use that extra hour than to eat autumnal snacks and talk about queer and trans relationships? Visit our website (soqir.org) for more information, and our Eventbrite page (https://www.soqir.org/soqir-panel) to RSVP and sign up for updates.
