Women are not responsible for solving our endometriosis problem

During my PhD, I have attended several events that brought together various groups interested in endometriosis: women, doctors, researchers, policy makers, charities, etc. These events are fantastic. It’s important to include as many perspectives as possible if we are to find ways to improve women’s experiences of endometriosis and the health care they receive for it.

However, I’ve noticed an unsettling trend with these events. They tend to largely consist of people telling women what they ‘should’ be doing to improve the health care they receive for endometriosis.  
"You need to be your own advocate," "you need to find a doctor who can do their job," and at one event a prominent researcher suggested every woman with endometriosis donate at least $1 for more research! It is rarely acknowledged that awareness, quality health care and research are things that women with endometriosis are entitled to (rather than something they have to ask for).

I acknowledge that these things are often said with good intentions. They’re usually framed as being empowering to women because it’s something they can do themselves rather than rely on others (e.g. doctors, policy makers) to do better. However, if we focus only on what women can (or ‘should’) do, we send the message that they are responsible for fixing our endometriosis problem and we fail to clearly call out those who should be doing more to improve the situation.

The thing is, women with endometriosis aren’t the ones who got us into this mess. So why are they the ones expected to get us out of it?

Medical science (among other social institutions) has historically devalued and excluded women and their bodies. This has led to the production of knowledge and practice that is often unable to address women’s needs. Heck, we only just realised that heart attacks present differently in women and that drug trials need to include women!

A trip down memory lane (hello, 1970’s women’s health movement), reveals the biggest improvements in women’s health care are often the result of women getting angry and demanding better. For example, the breast cancer research and awareness we now see everywhere is due to the monumental efforts of women. And the recent gains in endometriosis research and awareness is largely the product of women’s (emotional, intellectual, physical) labour, which is rarely acknowledged.

But just because we’re good at campaigning for our rights doesn’t mean we should have to. The burden of endometriosis should not fall upon those who are living with it; we need to shoulder it as a society.

So, what does need to be done? At the end of the day women’s experiences of endometriosis will never be as good as they can be until society views us as fundamentally equal to men rather than as primarily reproductive bodies (see here for a list of resources that explore this issue). Addressing this requires a lot of things to happen.

Medical education needs to reflect women’s needs and include an awareness of social health factors (e.g. how the prescription of pregnancy is not only inappropriate but also harmful to women), we need policy that supports funding and awareness for endometriosis (something that people are currently working hard on), and we need menstrual education in secondary schools for girls and boys (see here for a good example). These are just a few things we could/need to do.

Ultimately, I would like to see more endometriosis events (public, academic and clinical) conclude with people telling the audience/women what they are doing or are going to do to help women receive the quality health care for endometriosis that they are entitled to.

Having said all this, I think it’s a different matter altogether when women want to take on the burden of campaigning for improved health care and increased awareness for endometriosis. (And it’s essential that women’s perspectives are included in these matters; for too long they’ve been ignored.) It’s the expectation that women should be doing this that I have a problem with.

Again: women are not responsible for the burden of endometriosis. We, as a society, are.

Kate xx

Image: Death to the Stock Photo