A word from Nook Admins: We recognize, embrace, and celebrate the diversity of sex, genders, and sexual orientation in the endometriosis community. We also recognize the additional, challenging barriers to care that result for LGBTQIA+ identifying folks in a culture that is largely centered on and designed for cisgender, heterosexual individuals.
We are committed to using language that respects all sexes, genders, and sexual orientations. We recognize that much of the scientific and lay literature contains gendered language and presents endometriosis research, experience, and treatment priorities through cisgender, heterosexual lenses. We will actively work to identify more inclusive resources that address the needs for everyone with endometriosis.
Words matter:
We are all socialized into the culture around us. In the US (and much of the world), the cultural messages and are centered on the cisgender, heterosexual experience. By that I mean the experience of individuals whose gender identity aligns with the sex assigned to them at birth (cisgender), and that their sexual orientation is towards those of the other gender (heterosexual). This paradigm also erroneously presumes that there are only 2 genders. But sex, gender, and sexual orientation are not binary (one or the other). Rather, sex, gender, and sexual orientation are not binary at all – they are spectrums.
It is incredibly important to avoid gendered and hetero-centric language and instead use more inclusive language. Asking and using a person’s pronoun, offering your own pronoun, referring to folks in the singular “they” if you do not know their gender, using the term “spouse” or “partner(s),” and referring “people” or “folks” with endometriosis.
- Trans Student Educational Resource “Gender Unicorn” http://transstudent.org/gender/
- The Endometriosis Network Canada overview https://endometriosisnetwork.com/blog/its-time-for-the-endometriosis-community-to-drop-gendered-language?fbclid=IwAR3iGRhdgT80PS812OS0-w967ymOvRF96kpz9N2vUUY9xrtWf-6-KrmWBFA
- The Safe Zone Project “Inclusive Language Do’s and Don’ts” https://thesafezoneproject.com/wp-content/uploads/2017/07/SZP-Language-DO-DONT-Handout.pdf
- The National LGBTQIA+ Education Center “Learning to address implicit bias towards LGBTQ patients: Case scenarios (developed for health care settings but excellent examples for anyone) https://www.lgbtqiahealtheducation.org/wp-content/uploads/2018/10/Implicit-Bias-Guide-2018_Final.pdf
Barriers to care – navigating gendered, heterosexist health care:
Health care centered around cisgender, heterosexual individuals imposes numerous additional barriers to LGBTQIA+ identifying folks.
- The Endometriosis Network Canada overview https://endometriosisnetwork.com/blog/its-time-for-the-endometriosis-community-to-drop-gendered-language?fbclid=IwAR3iGRhdgT80PS812OS0-w967ymOvRF96kpz9N2vUUY9xrtWf-6-KrmWBFA
- 2015 Transgender Survey https://transequality.org/issues/us-trans-survey
“The 2015 U.S. Transgender Survey (USTS) is the largest survey examining the experiences of transgender people in the United States, with 27,715 respondents from all fifty states, the District of Columbia American Samoa, Guam, Puerto Rico, and U.S. military bases overseas. The findings reveal disturbing patterns of mistreatment and discrimination and startling disparities between transgender people in the survey and the U.S. population when it comes to the most basic elements of life, such as finding a job, having a place to live, accessing medical care, and enjoying the support of family and community. Survey respondents also experienced harassment and violence at alarmingly high rates. Several themes emerge from the thousands of data points presented in the full survey report.”
- Queering Menstruation: Trans and Non‐Binary Identity and Body Politics (Frank, 2020) https://onlinelibrary.wiley.com/doi/full/10.1111/soin.12355
“Menstruation has been historically known as a function of the female body that affects women. Trans and non‐binary people face this biological function as a potential social signal of gender/sex identity. This research involves virtual ethnographic content analysis of menstruation discourse written by or informed by trans and non‐binary people in addition to 19 interviews with trans and non‐binary participants. The research yields analysis within three gendered/sexed social spheres that trans and non‐binary bodies contest: (1) the gendering of menstrual products; (2) men’s restrooms; and (3) health care. The findings depict the variety of strategies trans and non‐binary people employ when navigating and interpreting menstruation in relationship to their gender/sex identities.”
- Teaching Frankly (Sarah “Frankie” Frank, PhD candidate) https://teachingfrankly.com/trans-and-genderqueer-menstruation/
“In 2018-2019, I conducted 21 formal interviews with trans and nonbinary emerging adults (18-29) across the United States. The resulting research paper was published online in February 2020, but Jac Dellaria translated the findings and quotes into stunning comic panels, presenting us all with a visual narrative of menstruation for trans and genderqueer people.”
- What it’s like to have endometriosis as a trans man (Cori Smith, 2019) https://thoughtcatalog.com/cori-smith/2019/09/what-its-like-to-have-endometriosis-as-a-transgender-man/
Finding care:
Finding care that is safe, validating, and respects the needs of LGBTQIA+ identifying individuals can be daunting. We hope to build more resources to help identify affirming care providers who treat endometriosis. Here is a general resource for finding LGBTQIA+ affirming health care organizations.
- Human Rights Campaign Health Equality Index:
Download the report here https://www.hrc.org/HEI
Search the HEI here https://www.hrc.org/hei/search
“Healthcare Equality Index (HEI) is the national LGBTQ benchmarking tool that evaluates healthcare facilities’ policies and practices related to the equity and inclusion of their LGBTQ patients, visitors and employees.”
Advocating:
Do you want to learn more about improving care for the LGBTQIA+ community?
- National LGBTQIA+ Education Center (US) https://www.lgbtqiahealtheducation.org/resources/
- The 519 (Toronto, CA) https://www.the519.org/education-training/training-resources/our-resources/creating-authentic-spaces/gender-specific-and-gender-neutral-pronouns
- The Trevor Project https://www.thetrevorproject.org/education/