Brain v. Body: How Gendered Illnesses Affect Non Binary People

[On repeat] I have endometriosis which… Yea basically like that but pain all the time… No, not just my ovaries it’s all through me… Yea but it’s not just women it can be in anyone… They/them yes. [End scene.]

Sometimes I envy Barbie and Ken because there’s nothing but plastic in their bodies and they still get to be whoever they like. A flight attendant, a babysitter, a doctor, a dentist, a lifeguard; They could be anyone and we’d all still buy it. That’s my twisted version of gender envy as a non-binary person who lives with a very gendered chronic illness. 

I came out as non-binary around the same time I got diagnosed with endometriosis. I put zero thought into my identity and how it mixed with my chronic illness because battling the overwhelming amount of information you get thrust on you with a fresh chronic illness diagnosis is enough as is. So, throwing in the whole gender thing was not a priority at that point. But over time as I got more comfortable with my pronouns and expression, I became more uncomfortable with my insides. I got particularly uncomfortable with how my insides and my identity were not a match when the topic of endometriosis was discussed. 

[Google search results for endometriosis facts]

“Key facts. Endometriosis is a disease where tissue similar to the lining of the uterus grows outside the uterus, causing pain and/or infertility.. Endometriosis affects roughly 10% (190 million) of reproductive age women and girls globally.” (Endometriosis – World Health Organisation, 31st March 2021)

“Endometriosis affects an estimated 1 in 10 women during their reproductive years (i.e.. usually between the ages of 15 to 49), which is approximately 176 million women in the world.” (Facts about Endometriosis - Endometriosis.org, 10th March 2021)

“It is especially common among women in their 30s and 40s and may make it harder to get pregnant.” (Endometriosis – Office On Women’s Health, 1st April 2019)

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For research (and to prove a point), I googled endometriosis facts, and these were the pieces that came up from multiple scientific organisations when it came to framing the scope and effect of endometriosis. I often get the feeling I am a wolf in sheep’s clothing when going into doctors and specialists for my endo. I am not a woman, but to get help with ease and lack of judgement, I must act as a woman. That’s because only up until recently have people started to push for gender neutral phrasing and terms when discussing endometriosis. 

“Every time I go to a new doctor, I am faced with the anxiety around whether to discuss my sexuality and gender or whether to allow them to assume who I am from my appearance.”

Endometriosis is a condition anyone can develop. Endometrial tissue, the part that causes all the grievances, has been found in people assigned male at birth, it can be found in nearly every organ in the body, even the nose. Medically this classifies it as a full body disease that can be found in anyone with or without a uterus, it’s the ultimate threat. 

However, it’s not that simple. Not for the trans and non-binary community at least. Even though the science backs these statements it’s still incredibly difficult and sometimes dangerous navigating specialists and gynaecologists when we’re not typically their usual demographic. Every time I go to a new doctor, I am faced with the anxiety around whether to discuss my sexuality and gender or whether to allow them to assume who I am from my appearance. It becomes a matter of choosing your battles case by case. Deciding whether being seen as how you identify is as important as getting a better standard of help from the medical professional before you. It often, for me, has ended up coming back to the necessity of quality of life. 

And this is the case for so many others. When trying to find community in such a gendered illness I reached out to endometriosis support groups to see who else like me was trying to match their insides with the outside world. And the response was bittersweet. I found a community of trans and nonbinary people who also struggled all around the world.

It was both affirming and agonising to know people like me existed. Because, it really shouldn’t be like this, is what cisgender people say, and that’s true, but they’ve never had the nail-biting anxiety Kai from Massachusetts has when it comes to finding an LGBT+ ally doctor for their endometriosis. Or had the invalidating experience Katrina from Vermont had when a doctor in ER openly misgendered them after sharing their pronouns. It really shouldn’t be like this but feels like the final nail in the coffin to my gender dysphoria at times. 

Even my own community can feel extra-terrestrial and foreign. At times being a part of a community, like the LGBT+ community, where coming together and doing things is so ingrained in our culture and social interactions, that having a disease like endometriosis which makes me physically restricted, is very isolating. When queer people join, we are always doing something and so to have a physically debilitating disease isolates me from the people I connect with the most, my community, my family. It makes it hard to go out and be in my community when I cannot stand up from pain or leave the house due to nausea. It often feels that to be myself fully both physically and mentally I must isolate from the people I identify with most. 

It was heart wrenching to find this community in amongst communities when it came to endometriosis and gender identity because I personally feel that’s the worst part about having a chronic illness. It is the isolating feeling that I am the only one getting me through this. Left foot, right foot and repeat. This feeling has been my entire experience up until starting this article where I was able to find community and people, not exactly like me, but close enough where I could exhale with a sense of relief and mutter to myself; “Finally”. 

Finally, there were names and faces to the people in the progressive statistics. Writing this article made me find community to share our stories and tell people we’re out here scattered in all these places, identifying in every way possible. 

Words: Isabella Jeffrey