Gender neutral language for endometriosis support organisations

[2020Wumben]

I have just seen an article from an Endometriosis support organisation for support groups to use gender neutral language to be more inclusive of trans men and non-binary people. I get that, if you have gender dysphoria having endometriosis and navigating treatment would be extra distressing and we must do something to help support people dealing with it. But again it is all about the removal of the world woman or female, not changing language to women, trans men and non-binary people.

This is a horrible disease with no cure and ridiculous diagnosis times as it's not taken seriously as a women's condition. It affects so much of affected women's daily lives, chronic pain, infertility etc all because we are women and mostly as we have periods. I appreciate that there have been a handful of men diagnosed with it but 1in10 women are affected. The suggestion of instead of saying "176 million women have the disease" you say "176 million people have the disease", just made me - it wipes out the significance of the number as that statement now includes men.

From the article:
Instead of saying "Endo sis" try saying "FriEndo"
!!!!???WTF
It's so hard to tell what's parody these days, what with this, and the police announcing that they "stand with asexual people".
I'm using many of my WTFs today.

Just to be clear, I have never said "Endo sis", and I can't imagine that anyone doubled up in pain with endometriosis has really been focusing on the language. And what about people who genuinely have difficulty accessing health care. Why not this level of concern for e.g. women in some Asian communities, deaf people, disabled people etc.?

As a woman who has suffered most of my adult life with endometriosis and ovarian cysts, then fibroids too just to add to the mix, they can FUCK RIGHT OFF.

If this TINY minority are so fucking triggered by THEIR own biology then then need mental health care to enable them to cope in society. This should be proof they can't fucking 'identify' out of woman/female.

Yea I think my frustration is that so many people and I include a lot of women in this don't know very much about it. So by saying it affects people, you lose that link to it mainly relates to the fact that it is because you are a woman. Endo doesn't always present with heavy painful periods, mine are totally fine but I have a whole range of other Endo related symptoms. So you lose an opportunity to flag to a woman who thinks she has IBS that it isn't really IBS at all because she doesn't know about Endo, if you get what I'm trying to say. To summarise a major issue with the condition is lack of awareness among the population and healthcare professionals, not being able to saying woman is another barrier and that a support group advocating for that is

It takes an average of 7 years to get a diagnosis of endometriosis as it is.
Anything which makes recognising it even more confusing is simply going to lead to more women experiencing pain and suffering.

My understanding is that endometriosis is one of those conditions that it often takes years to get a diagnosis. And that is rooted in assumptions about women and their biology - that periods are messing and painful, that women are neurotic/hysterical and make a fuss. And now their lived experience is being further erased even in the groups set up for solidarity and support.

When they want conditions previously underreported, under diagnosed and under treated in male humans to be highlighted and given specific support, people go out of their way to set up male groups, directly advertise and appeal to men and to raise money on that basis (I’m thinking of mental health as a very good and welcome example of this), but women have to use ‘people’, they aren’t being allowed to have a distinctive experience.

I imagine many trans men with endometriosis don’t want to be in support groups in which women reference the impact on their reproductive systems and sex lives.

Stop overwriting our distinct lived experiences as it’s not helpful for any group.

I work in the women's health sector and we have just been told we have to use the phrase "birthing people".

So by saying it affects people, you lose that link to it mainly relates to the fact that it is because you are a woman.

Also it suggests that the population rate of sufferers is roughly 50% less than it is. Because to people unaware of who the condition affects, it looks like it could potentially affect all human beings.

@Gwynfluff yes well summarised- that's exactly it. Historically some women were put in insane asylums as they were seen as neurotic due to the pain they were suffering

This is not about including transmen. It is about avoiding the use of the word woman in a context that obviously does not include transwomen.

Why don’t they set up their own support groups? Surely they have a whole host of other concerns that natal women don’t have. I am wondering if this is yet another demand from TRAs and not from trans men and non binary people. Why does it always have to be about taking over and changing women’s groups/spaces/meetings/health problems. It makes me so frustrated that not everyone in the world can also see it. Are they crazy? Or blind? Or do they just not care?

@Apollo440 ah excellent point that I hadn't even considered. I just get the overwhelming feeling that "woman" is a dirty word not to be used. I guess that's is being evidenced in all the menstruator campaigns etc. You never see prostate havers or ejaculators.

Or do they just not care?

You answered your question.

Yes the point here is to break the link between "woman" and female bodies. Which is why saying, you can use "women and trans men" is naive and misguided, because it's really not what this is about, primarily.

I've had the strange experience this week, searching for reviews of Ep 3 of I May Destroy You - the one with the blood clot - of seeing at least one reviewer tie themselves in knots talking about 'menstruating people'.

It's infuriating. And terrifying.

@Ereshkigalangcleg yes, I am still quite new to all this (still "peaking") and realising naive in some aspects. Still trying very hard to shake the "be kind" mentality when it's not reciprocated

Not surprising.

I really would like to know why its only ever illnesses/conditions that affect female people that get the 'gender neutral language' treatment? Actually half seriously considering writing to some charities asking why the word men is used, when the word woman in healthcare is a huge no no apparently. Would make me feel petty as fuck though given such support groups and such obviously have a function besides navel gazing bullshit, but womens stuff seems to be expected to focus on this nonsense constantly..

Sorry, I wasn't directly referencing your OP, I didn't see that you had said that. It's quite a common thing that people say. I just think bending over backwards for these people doesn't work out well. I think they should be quite firmly told that it's not all about them.

No apology necessary. I'm challenging some of the questions/ideas I have. I know what you mean, I can't imagine wanting to join a support organisation but for me to fit into it, get them to fundamentally redefine who the group is for.

This is not about including transmen. It is about avoiding the use of the word woman in a context that obviously does not include transwomen.

This is exactly what the issue is. This is why the furore around JKR focused on "TWAW", completely ignoring the fact that the only trans people who were actually part of the discussion around "menstruators" were transmen.

Prostate cancer? Still uses the word 'man' and 'men'. Nobody's up in arms about that, for some unknown (editor: we all know) reason.

This is maddening. I have endo, thankfully controlled after two ops by remaining on Cerazette for over 10 years. It took away our chance for a second child. But it's some form of female privilege to say that only women get it .
Perhaps the only way people will get it is by campaigning to change prostrate cancer campaigns so they are gender neutral. It's ridiculous at many points when I was suffering badly, if I could have waved a magic wand to turn me into a man, I would have gladly done it.

And once again men are allowed to have talk of their prostate issues in a nice straight forward biologically correct way.

Fucks me off no end.

In the UK, about 1 in 8 men will be diagnosed with prostate cancer in their lifetime. We don't know exactly what causes prostate cancer but there are some things that may mean you are more likely to get it – these are called risk factors

Prostate cancer mainly affects men over 50, and your risk increases as you get older. The most common age for men to be diagnosed with prostate cancer is between 65 and 69 years. If you’re under 50, your risk of being diagnosed with prostate cancer is very low, but it is possible.

My father had prostate cancer. What are my risks?

You are two and a half times more likely to get prostate cancer if your father or brother has had it, compared to a man who has no relatives with prostate cancer.

Transphobic bastards

Imagine if it said "1 in 8 people". It would be inaccurate.

Related to endometriosis: I saw this Reddit thread linked on Twitter the other day and it is utterly horrifying link:

"Assisted with a post-mortem when I was a student. Female patient died in her 40s. Her medical history had extensive complaints of abdominal pains, one Dr even referred to her as a 'hypochondriac' and others commented on apparent anxiety. Opened her abdomen and she had extensive scar tissue, she was absolutely massacred inside from endometriosis. She suffered for decades and never got referred for a laparoscopy.
She didn't have fucking anxiety, she had a medical condition."

The reason why endometriosis is so poorly understood, diagnosed and treated is misogyny. That's the bottom line. Breaking the link between the word "women" and this disease just adds insult to (literal) injury.