In the last few years, there's been a steady stream of women writing about the gender health gap, but one woman who’s been at the forefront is Sarah Graham. After years of reporting on the way women are treated in healthcare and editing the blog Hysterical Women, Sarah Graham has released her debut book.
Rebel Bodies is a deep-dive into the sexism women face when they seek help for health problems and diagnoses, but more importantly, it's a celebration of the communities, organisations and activists who are fighting for better.
“It's great that we have celebrities speaking out about some of these issues like menopause and endometriosis. But there are patient advocates who've laid the groundwork for years, who were not kind of getting the recognition that I felt they really deserved.” Sarah tells me over Zoom.
Sarah originally started Hysterical Women in 2018 as a space for women to share their experiences of medical misogyny after noticing how disregarded women were while researching her own work as a health journalist.
The reality of living with the condition from women around the world.
“By having those stories together, it proved to them that they weren't alone,” Sarah says. She sees the book as a continuation of this space, “It's a way of saying, ‘It's not just you; this is something that's happening to lots of people, it's a systemic issue, and this is what you can do about it.’”
The gender health gap, or gender pain gap, is the common term for the disparity in the way women are treated and the time it takes for them to receive treatment and diagnosis compared to men. While men are usually believed the first time, the process is a lot longer for women.
Illnesses that typically only affect women (as well as trans men and non-binary people), such as endometriosis and other gynaecological health issues, are typically under-researched.
The All-Party Parliamentary Group on Endometriosis study found that it takes, on average, eight years to get a diagnosis. However, 38% of those surveyed waited ten years or more. 58% visited their GP more than ten times about their symptoms, 43% visited doctors in hospital over five times, 53% visited A&E with 27% going to A&E three or more times. 49.5% of people with endometriosis were initially misdiagnosed with a mental health problem.
It’s not just illnesses that typically affect women that women have a hard time being believed for, though. Women who go to emergency rooms in the US wait 16 minutes longer than men to receive medication for abdominal pain – and they are only 7% likely to be offered it in the first place. In the UK, women are 50% more likely than men to be misdiagnosed after a heart attack because the symptoms present differently in women than in men.
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So what does Sarah think is the cause of the gender health and pain gap? Is it misogyny? Well, not entirely, “The short answer is the patriarchy, sexism, gender bias, et cetera. But I think how that manifests is really complicated.”
She explains to me that the idea of women being hysterical comes from the ancient greek belief in wandering wombs making women unwell and how that manifested into “hysteria.” However, although hysteria isn’t a recognised diagnosis now, "It still casts a shadow on the way that women are diagnosed.”
Sarah also points to the lack of funding for research into illnesses that affect women much more, such as fibromyalgia and Ehlers-Danlos syndrome.
“We don't know the cure, and we don't have proper treatments for them.” Sarah sighs, “so it means that even if your doctor is aware of your condition and is able to diagnose you, they don't necessarily have a treatment pathway for you.”
But then we also have to take into account how stretched the NHS is; Sarah says, “I think the more overworked and underpaid healthcare professionals are, the harder it is for them to care to the high standard that they want to be able to because they're just knackered."
This was something Sarah was keen to get across in the book. “I think it's very easy to blame healthcare professionals as individuals,” Sarah says.
While she agrees that some doctors “say appalling things, there are plenty of examples in the book” a lot of it is systemic and involves a lack of resources and treatment “they might not have specialist services that they can refer you on to so you end with GPs that really want to help patients, but their hands are tied.”
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However, she does think sexist attitudes play a massive part in it, “But then I think there are still those attitudes of women are irrational women that normalise women's pain, we’re told to be born with a womb is to suffer, and that's inevitable, you just have to get on with it.”
The book is a real eye-opener into the gender pain and health gap; however, for those of us working in the women's health space, it all rings too true, which is why when I asked Sarah if anything really shocked her whilst she was writing the book. She told me, “There's a lot of stuff in the book that is objectively shocking and that people will be shocked by, but I think I have been writing about it for so long now that there was nothing that went in that I wasn’t expecting.”
She was taken aback by one particular story of a surgeon who said he hated doing laparoscopies on endometriosis patients because, in his words, “all the patients were just f[*]cking mental.” Sarah asks, “I just think, how can that be your job, and you've written off these women before you've even cut them open?”
It’s no coincidence that chronic illnesses – which are massively misunderstood, with the person seeking a diagnosis often treated like they’re making it up – occur mostly in women.
You really get a sense of how integral the disabled community are to women’s health when reading the books as although there is a chapter dedicated to our struggles, we also bleed out into all of the other chapters and ties the book together.
Despite celebrities like Selena Gomez living with the chronic disease, lupus is so rarely spoken about.
“I think the disability chapter actually is the one that I am most proud of”, she tells me. “The disability community is one that I've learned so much from and that I've been inspired by – not in like a disability inspiration porn way, more like 'oh so this is what it's all about because they’re really the heart of it all”
The book as a whole is a manifesto on women’s health and how we need to do better and will hopefully provide so much. Still, it’s only the start, and it’s not something patient advocates can do themselves “this needs to be a top-down process because there’s only so much that patients can do. We need the people with the money and the power to start paying attention as well.”
Ultimately, Sarah wants the book to remind women who are struggling to access treatment that they’re not alone.
“Even if they don’t feel up to fighting for themselves, hopefully, they’ll know that change is happening. It's going to be really bloody painfully slow, but there are people out there fighting to make things better.”
Sarah Graham is an award-winning freelance health journalist and the author of the new book Rebel Bodies (Bloomsbury Green Tree, £16.99).
