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.

(it took me 10 years to get a diagnosis and I have a direct comparison with how it impacted my life, education and opportunities because I have a twin brother. I know what I missed out on by being a woman.)

by saying it affects ‘people’, you lose that link to it mainly relating to the fact that it is because you are a woman. Endo doesn't always present with heavy painful periods, ... 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

This is the crucial issue. The message should be loud and clear. Making it imprecise is simply crap publicity. Saying 1 in 20 people instead of 1 in 10 women actually undermines the message of how widespread it is.

Support groups should aim to reach minorities such as women who have disabilities, or have language difficulties, or can’t read, or live in cultures that limit their access to health information.

@HoneysuckIejasmine

(it took me 10 years to get a diagnosis and I have a direct comparison with how it impacted my life, education and opportunities because I have a twin brother. I know what I missed out on by being a woman.)

Sadly that diagnosis time isn't atypical. It's a 2 year wait to see a gynaecologist in NI and that was pre-COVID. Thankfully my gp is very good and understands.

Support groups should aim to reach minorities such as women who have disabilities, or have language difficulties, or can’t read, or live in cultures that limit their access to health information.

I completely agree, completely defeats the purpose of raising awareness for a relatively unknown and misunderstood condition if obscure language is used.