Last week’s International Women’s Day (IWD) brought mixed feelings for me. My appreciation for the activism that has continued to drive women’s rights since 1909 sits alongside my anger at the persistence of inequalities, injustices and exclusions that exist, worldwide, towards many forms of gender identity. I recognise that this is a moment for dialogue and calls for action. And, in that spirit, I am marking it by sharing evidence about endometriosis, a condition that suffers from continued underinvestment in research, policy and action – precisely because it is primarily experienced by women.
Some 10 years ago, when I was a junior researcher, I found myself working with a group of women who were suffering from endometriosis. The focus of the discussion was what research and policy provision was needed to help them live with the condition, better. As I listened to the very different, but equally validated, experiences shared by the group – of day-to-day disruptions, setbacks, or acute medical crises; of challenging living conditions, DIY coping strategies, struggles for good information, struggles for access to care; interrupted working patterns, careers, incomes, family life; and painful deterioration of social relations and individuals’ sense of self-worth in society – two things struck me. Firstly, I saw these women had all drawn on communities local to them, and communities of identity and experience, when they could no longer cope alone, or when their families could not be the answer. Secondly, I joined the dots between the women’s descriptions and my own health issues – and realised that I, too, was living with was endometriosis.
Statistically, that’s alarmingly unsurprising; according to the World Health Organisation, the condition affects 10% of ‘women and girls of reproductive age’ worldwide, and Endometriosis UK estimates 1.5m women in the UK suffer. And, sadly, in a 2020 report, the All Party Parliamentary Group (APPG) on endometriosis found it has no cure, only operative treatment and hormonal intervention – the effectiveness of which varies heavily – and that it has profound implications on socio-economic conditions, outlook, and quality of daily life. Further, the APPG found that endometriosis causes, in a list of physical impacts, agonising pain, infertility and co-morbidities, with 53% of women who suffer from it in the UK having had to visit A&E.
All these physical impacts typically worsen the longer it is left untreated. And it takes, on average eight years to diagnose endometriosis; which is exactly how long it took to formally diagnose me and to receive any form of treatment. In fact, the APPG inquiry found diagnosis and treatment of the condition had barely progressed since 2010, principally due to ‘de-prioritisation’ of research, services and policy.
All of which illustrates a central point that health inequalities are policy-made – and they leave humans needlessly struggling. Some more than others. This is the truth I heard in that research group, where I first learned of endometriosis, and it’s a theme that’s emerged through conversations as The Young Foundation’s Living Roots programme rolls out in West London. In that work, peer researchers are building evidence to support improvements in health equity, focusing on people’s experiences in Ealing. They’re hearing, time and again, that health inequalities aren’t natural phenomena but structured in both historic and contemporary contexts. Depressing as this is, it offers hope: created structures can be dismantled if they’re prioritised.
At the Institute, too, we focus on recognising peoples’ experiences as a form of valid evidence. The insights we gain help us understand the diversity and complexity of conditions that bear co-injustices in affecting both physical health, but also the ability to live an equal life. In that spirit, to share a fragment of my own experience, it is the quiet, daily pain of confronting limits I haven’t set for myself that hurts as much as the medical prognosis. Of when I stumble, or fall, in parts of life where once I had joy or confidence, because of the uncontrollable impact physically, or mentally. Discussing with others who live with the condition, the co-injustices can be when they are held back by society’s inability to understand and adapt to a chronic condition’s impact on them; and many of us worry we will lose work, income, respect, time, hope, or loved ones because of the corrosive consequences of endless pain. My condition is, as of this year, sadly life-limiting – but I am just one and by no means the worst of many cases providing living proof that we need more equitable, collective evidence to drive faster diagnosis, intervention, and social – as well as medical – support systems.
Decades of de-prioritisation of so-called ‘women’s health’ is an injustice founded on gender. That those living with it must turn to communities of support to share their burden; and that they cannot reliably depend on services based on well-resourced evidence of what works, reveals deep failures in how policy around knowledge production, welfare, and gender have been set. These failures make it a condition – like the many conditions of people and place that we research at The Young Foundation – that carries a triple injustice.
Resolving this takes a commitment beyond marking one International Women’s Day every March. We urgently need recognition, research, investment and action. This is at the heart of building a fairer society. It is about being person-centred. We must empower, involve the living knowledge of, and give hope to those who needlessly suffer with this type of condition, addressing health inequality wherever we find it.