Q&A with Gabrielle Jackson, author of Pain and Prejudice: A call to arms for women and their bodies
Published in the UK in November 2019, Pain and Prejudice is an important and powerful look at how our culture treats the pain and suffering of women in medical and social contexts.
Written by Gabrielle Jackson, associate news editor for Guardian Australia, it is a polemic on the state of women’s health and healthcare, and a memoir on Gabrielle’s own experience of being diagnosed with endometriosis.
We spoke to her about what’s changed in the 14 years since her diagnosis, and how medicine can begin to move forwards.
SG: The book was obviously initially inspired by your own experience of endometriosis – what shifted your focus from endometriosis specifically to women’s pain more generally?
GJ: Understanding more about endometriosis made me realise there was so much more going on than the physical endometriosis lesions found inside the pelvis. The symptoms of endometriosis appear to have too much in common with other painful conditions of the pelvis to be an entirely separate condition. I also realised how much more common chronic pain conditions are among women than men, and that got me thinking about the reasons behind medicine’s lack of understanding about chronic pain.
In exploring these ideas, I realised that women who had chronic pelvic pain but who did not have endometriosis were being thrown on the hysterical or ‘medically unexplained symptoms’ scrapheap and that didn’t seem fair.
Once you understand even a little bit about chronic pain, it’s impossible to look at endometriosis as a separate entity to women’s pain in general and women’s treatment by medicine specifically.
What shocked you the most while you were researching and writing the book?
How little medicine understands about female biology. It is truly astonishing and shocks me still to this day.
Do you think we’ve seen any progress – in endometriosis care and women’s health more broadly – since you were first diagnosed?
Just in the past five years, there has been an explosion in public awareness of endometriosis. Unfortunately, that has not translated into advanced medical knowledge or widespread better treatment for women. I do think there are a lot of doctors out there who really care and who are providing women and gender diverse people in pain with really good care but unfortunately, they are still a minority. However, I do think greater public awareness does help these doctors share their best practice treatments more easily and it has led to NICE producing its first ever guidelines on endometriosis. That is a very good thing. Progress is slow, especially in medicine where safety is so important, but I do think more public discourse on women’s health is having an impact on how doctors view and treat their female patients. The goal is to see policymakers translate this into money for research and better policies to encourage best practice treatment for women’s health issues.
What do you hope Pain and Prejudice adds to current conversations around women’s health and health inequalities?
I hope women and gender diverse people living in pain realise they are not alone, that this book gives them the confidence to believe their pain, report their symptoms and seek better treatment. Ultimately, we need more research money so I hope the book inspires some important advocacy work to make that happen.
What’s the next step in this conversation, and how can medicine begin to move forward?
Medicine needs to acknowledge that it has let women down. It needs to really consider how its assumptions about women, people of colour and gender diverse people has affected the treatments offered and the diagnoses it gives to these patients. Too few doctors consider that when they give a diagnosis of “medically unexplained symptoms”, for example, it might be because medicine doesn’t know enough about female biology – not just that women tend to be hysterical, hypochondriacs or too anxious about their health. Medicine needs to make a concerted effort to untangle the diagnoses it gives women from sexist assumptions about women. Only then can it properly reassess its claim to own the knowledge of the human body, and arrest the decline in trust women have for their medical practitioners.
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