June is Pride Month! As a council with many members identifying as LGBTQ+, I wanted to spend some time reflecting on how our LGBTQ+ identities have affected our healthcare experiences as chronically ill young adults.
I’m Sophia, and I have been chronically ill since I was 13 years old. My gender and sexuality have impacted my perspective on many things, including my experiences with chronic illness and interacting with the healthcare system. In my experience, I feel that my coming to terms with my gender and sexual identity was heavily impacted by chronic illness and how this affects my view of my body. However, even as someone who spends a lot of time contemplating this and having discussions about gender, sexuality, and chronic illness with friends, I have never explicitly come out to any of my healthcare providers (HCPs). So lately, I’ve been thinking about why that is and what other queer and trans people’s perspectives are on coming out to HCPs.
Why does it matter for healthcare providers to be aware of a patient’s LGBTQ+ identity?
I’m sure most of us are aware of the health disparities LGBTQ+ individuals experience. These disparities are due to factors such as societal attitudes, stigma associated with certain identities, discrimination, or provider biases. For queer individuals, HCPs’ assumptions and attitudes toward the topic of sexuality can negatively impact queer patients’ trust in their providers and communication of health information and issues, which can affect the care they receive (Hudak & Carmack, 2018).
Transgender, nonbinary, or other gender non-conforming patients also experience unique barriers when receiving care. Sequeira et al. (2020) discussed health disparities in trans youth specifically, explaining that societal stigma, discrimination, and other barriers to care contribute to health disparities and lower rates of healthcare utilization. Having HCPs who are aware, affirming, and equipped to work with LGBTQ+ patients can help with addressing disparities.
What influences patients’ decisions on whether or not to come out to providers?
Hudak and Carmack (2018) conducted a study that helped them identify patients’ considerations when deciding whether to share their identity with their HCP. Some of the factors they identified as impacting a patient’s decision on whether or not to come out were past coming out experiences, concern that the information would be shared with family or community members, comfort and familiarity with the provider, perception of a providers likelihood to be accepting, and fear that the quality of care would be affected or providers would refuse care.
In addition to these considerations, trans and gender non-conforming people often think about negative interactions that could result from sharing their identity with a provider. The 2022 U.S. Transgender Survey reports that “of those who saw a health care provider within the last 12 months, nearly one-half (48%) reported having at least one negative experience because they were transgender, such as being refused health care, being misgendered, having a provider use harsh or abusive language when treating them or having a provider be physically rough or abusive when treating them” (James et al., 2024, p. 16). Fear of negative interactions with providers heavily factors into someone’s decision to come out, as well as concern over whether they will even be able to access care as a trans person (Baldwin et al., 2018).
Personally, what has contributed most to the fact that I am not out to my HCPs is just that they have not brought up the topic of gender or sexuality. On forms I fill out at each clinic, there’s no place to list pronouns. If I wanted to share my pronouns, I’d have to bring it up, and I’ve decided it’s just not worth it. It’s been solely my responsibility as the patient to bring up the topics of gender and sexuality. If asked on forms or by a provider about this, I’d feel better about sharing, because then I’d know it is something the provider is open to receiving. But for now, I just ignore the topic.
What helps patients feel comfortable being out to their providers?
One thing providers can do to help patients feel comfortable coming out is start conversations regarding gender, sexuality, and sexual health. Hudak and Carmack (2018) report that LGB patients who participated in their survey clearly expressed their desire for providers to start the conversation, creating the space to be able to discuss important health information related to sexual health and gender-affirming care.
Regarding comfort levels being out to HCPs, patients like doctors who demonstrate experience in treating LGBTQ+ patients. This can include providers being familiar with treating trans patients and having knowledge of issues trans people face concerning accessing necessary health care. If providers are not experienced in working with trans patients, some patients appreciate if the doctor is upfront about this and communicates that they will research to familiarize themself with working with trans patients, consult with other doctors, and most importantly, listen to and respect the patient (Baldwin et al., 2018).
More inclusive clinic practices also help patients feel more comfortable being out. Creating an inclusive clinic environment could involve updates to forms where patients can update names, pronouns, or other identity changes whenever they are seen. This creates a routine practice where patients can communicate their identity to HCPs without having to bring it up in an appointment if they do not feel comfortable doing so. For this to work, everyone in the practice needs to be educated on working with LGBTQ+ patients. A more inclusive environment is created when providers have essential, basic information on issues related to gender and sexuality and the major health concerns of the LGBTQ+ population.
Regarding some of our council members’ experiences, we have a variety of experiences when it comes to being out to providers. As I mentioned, I am not out to any of my specialists. This has been manageable for me because I would rather deal with any uncomfortable interactions regarding assumptions my providers make about my gender or sexuality than be the one to bring it up, especially when it is not clear what response I will receive from them.
I talked to another council member, Hayden, to hear how these discussions go with his specialists when they are discussed. He mentioned a stark difference between how discussions go at the clinic where he receives gender-affirming care versus at the rheumatologist. With his rheumatologist, there are no discussions about sexual identity or reproductive health, and for discussions surrounding gender, nothing besides their doctor confirming he is still on testosterone when going over prescriptions. There is no process in place to ask for preferred names or pronouns, so it is then Hayden’s responsibility to share these and make corrections, if they decide it is even worth it when providers mess up. This keeps adding to the list of things trans patients have to do when transitioning. For example, when changing their legal name, a patient would have to follow up to ensure this change transfers to clinics, insurance, prescriptions, etc.
Overall, there is so much that could be updated within clinics to better their interactions with LGBTQ+ patients. Having regular discussions about these topics, handling them with care, and respecting patients could help to reduce health disparities among LGBTQ+ individuals, giving patients access to care that is helpful to them, appropriate, safe, and supports their mental well-being. Not to mention how much easier it would be on us as chronically ill LGBTQ+ individuals, who already have so much to deal with in regards to managing our care.
References
Baldwin, A., Dodge, B., Schick, V. R., Light, B., Schnarrs, P. W., Herbenick, D., & Fortenberry, J. D. (2018). Transgender and Genderqueer Individuals’ Experiences with Health Care Providers: What’s Working, What’s Not, and Where Do We Go from Here? Journal of Health Care for the Poor and Underserved, 29(4), 1300–1318. https://doi.org/10.1353/hpu.2018.0097
Sequeira, G. M., Ray, K. N., Miller, E., & Coulter, R. W. S. (2020). Transgender Youth’s Disclosure of Gender Identity to Providers Outside of Specialized Gender Centers. Journal of Adolescent Health, 66(6), 691–698. https://doi.org/10.1016/j.jadohealth.2019.12.010
Hudak, N. C., & Carmack, H. J. (2018). Waiting for the doctor to ask: influencers of lesbian, gay, and bisexual identity disclosure to healthcare providers. Qualitative Research in Medicine & Healthcare, 2(1). https://doi.org/10.4081/qrmh.2018.7157
James, S.E., Herman, J.L., Durso, L.E., & Heng-Lehtinen, R. (2024). Early Insights: A Report of the 2022 U.S. Transgender Survey. National Center for Transgender Equality, Washington, DC.
