Resources

It’s Time for the Endometriosis Community to Drop Gendered Language

Transgender, Non-Binary and Gender-Diverse folks with endometriosis face enough barriers in health care. Language shouldn’t be one of them.

“Hey Ladies…”

“Endo Sisters…”

“Question for you gals…”

Hands up if you’ve started or participated in a conversation in an online support group with one of those phrases. While the intent may not be to make others feel excluded, words can and do have the ability to exclude.

We recently talked about the impacts of racism on endometriosis patients, but what about gendered language?

As we reflect on ways we can better serve and support all people with endometriosis (“endo”), we thought it was time to have a conversation about gendered language in the endo community.

Language

Before we get into it, here’s a brief primer on terminology, adapted from the Inclusive Language document from our Facebook Support Group.

Gender Identity

One’s innermost concept of self as male, female, a blend of both or neither – how individuals perceive themselves and what they call themselves. One’s gender identity can be the same or different from their sex assigned at birth.

Gender Dysphoria

Clinically significant distress caused when a person’s assigned birth gender is not the same as the one with which they identify.

Cisgender (cis)

Refers to any person who’s gender identity aligns with the sex they were assigned at birth – ie, someone assigned female at birth and who identifies as female.

Transgender (trans)

An umbrella term for anyone whose sex assigned at birth and gender identity do not align in the expected way – ie, someone assigned female at birth who identifies as male.

Non-Binary

An adjective describing a person who does not identify exclusively as a man or a woman. Non-binary people may identify as being both a man and a woman, somewhere in between, or as falling completely outside these categories. While many also identify as transgender, not all non-binary people do.  Other terms include genderqueer, genderfluid, gendernonconforming.

Outing
Involuntary or unwanted disclosure of another person’s sexual orientation or gender identity.

Definitions adapted from the National LGBT Health Education Center and the Human Rights Campaign.

Barriers to treatment

It’s challenging enough for cisgender women to navigate the health-care system, receive an endometriosis diagnosis, and find the right treatment option(s). 

For transgender and non-binary  people, accessing any healthcare is a challenge. A study from 2005 found that over half of respondents had difficulty accessing health services, and 1 in 4 people had been denied health care in the past because they were transgender.

When illness is gendered as endometriosis is, this creates significant barriers for trans folks in need of support, information, or treatment. Not only do these barriers exist throughout the health-care system, but also in support groups and online forums that are often the only source of solace.

Anna identifies as non-binary or genderfluid and prefers they/them pronouns. They were diagnosed with endo about ten years ago after “luckily” suffering symptoms for *only* three to four years.

“I haven’t necessarily experienced outright gender-based discrimination from medical professionals because I’m too scared to come out to them,” Anna says. “I needed a hysterectomy for adenomyosis and I was afraid they would assume I was trying to have the surgery just because I’m non-binary. Now that I’ve had that surgery, I’m afraid of being outed, intentionally or unintentionally, by a healthcare provider. I’m also worried about being discriminated against and not getting the care I need.”

Fear is a powerful motivator to stay silent. Before their hysterectomy, Anna would often experience severe gender dysphoria when they’d start cramping and bleeding.

“It’s a really horrible feeling when your body is doing things that don’t match your gender,” they say.

Post-hysterectomy, Anna struggles the most with attending pelvic physiotherapy appointments. The language around treatment often involves phrases like ‘other women who have had hysterectomies,’ or ‘other women with endo.’ It’s a small shift, but saying people instead of women goes a long way to making trans, non-binary and gender-diverse folks feel human.

“Pelvic physiotherapy already puts you in a very vulnerable place, so my appointments are much more exhausting than they should be,” Anna says.

One of the hardest things about living with endo when you don’t identify as cisgender is the constant emotional labour that goes into educating others about using inclusive language. After all – online and virtual support groups are supposed to help people with endo, not make them feel more alienated than they already do.

So, how does that change? Anna has some thoughts.

For health-care providers

Adjust intake forms to include pronouns and genders other than just male and female. If you’re on social media, use inclusive language and if you don’t know how to do that, ask for resources.

When Anna entered a specialist’s office shortly after coming out to a select few close friends to see a small Pride flag in the office, she felt a surge of hope.

“She started out using gendered language and adjusted after I said, ‘people with endo,’” Anna says. “I would have rather she started out using gender-neutral language, but she picked up on what I was saying and went with it, which meant a lot. I wasn’t ready to come out to her, but she made me feel safe.”

Also, keep in mind that you may have patients who are trans, non-binary or gender-diverse that come to an appointment with a support person they may not be out to. When you use the same gender-neutral language for everyone, everyone feels safe, whether they’re out or not.
 

For support communities

“The biggest thing is to stop automatically assuming that everyone with endo or adeno identifies as cisgender,” Anna recommends. “Start thinking ‘people with endo,’ and be okay if someone calls you out when you use gendered language – unlearning takes time.” 

If no one speaks up, nothing will change. It shouldn’t fall on the shoulders of trans and non-binary members of endo communities to stand up for themselves – they need allies to stand with them too.

“We’re not asking for special treatment,” Anna says. “We just want to be acknowledged that we exist and treated with respect.”

“Start thinking “people with endo,” and be okay if someone calls you out when you use gendered language.”

So, what’s something we can do right away to support trans and non-binary individuals in the endo community?

“Please, please, please stop with the ladies, endo sister, women with endo, etc,” Anna says. “Trans and non-binary people with endo have unique barriers to accessing proper endo treatment, and we have a lot of experience to bring to the endo community.”

Sure, there are trans-friendly endo spaces, but segregation should not be a requirement to feel safe and included in any community. Anna believes trans and non-binary folks should be able to exist in larger endometriosis spaces without constantly being misgendered or subject to transphobia or trans-exclusive radical feminism (TERF). This doesn’t mean cisgender women can’t use their preferred personal pronouns – it simply means adjusting language when addressing large groups of endo peeps to remove one of the many barriers that trans, non-binary and gender-diverse folks face.

“There is a lot of hate and transphobia in some online support groups,” Anna says. “I’m really thankful that when I post something in The Endometriosis Network Canada’s online support group reminding people not everyone with endo is a woman, people are usually receptive. However, it gets tiring scrolling through and seeing post after post with gendered language. I know of people who have been removed from endo groups for speaking up against transphobia. This is not the way forward.”

Be humble and open to unlearning

Finally, it’s okay to mess up – but own up to it and don’t make a big deal about it. Edit your comment or post and learn for next time.

“I have a friend who I’ve been out to for a while and she called me “girl” the other day,” Anna says. “I corrected her, we laughed about it and moved on. It’s that easy.”

Yes, it feels weird, guilty, and maybe a bit shameful to be called out for not using gender-neutral language – but it doesn’t have to be. Just because endometriosis affects people assigned female at birth, does not mean all of those people identify as a woman.

Please reach out to us, or one of our Facebook Support Group moderators if you need support. We are committed to making all endo warriors feel safe and secure to share their stories.

After all – we’re all in this together.

The content of this post does not provide or replace medical advice. It is important to follow up with your doctor with any healthcare concerns you may have and to work with medical professionals to develop treatment plans that are right for you.