Pain and Prejudice

A Call to Arms for Women and Their Bodies

A timely and powerful look at how our culture treats the pain and suffering of women.

'Women are in pain, all through their bodies; they're in pain with their periods, and while having sex; they have pelvic pain, migraine, headaches, joint aches, painful bladders, irritable bowels, sore lower backs, muscle pain, vulval pain, vaginal pain, jaw pain, muscle aches. And many are so, so tired … But women's pain is all too often dismissed, their illnesses misdiagnosed or ignored. In medicine, man is the default human being. Any deviation is atypical, abnormal, deficient.'

Fourteen years after being diagnosed with endometriosis, Gabrielle Jackson couldn't believe how little had changed in the treatment and knowledge of the disease. In 2015, her personal story kick-started a worldwide investigation into the disease by The Guardian; thousands of women got in touch to tell their own stories and many more read and shared the material. What began as one issue led Jackson to explore how women - historically and through to the present day - are under-served by the systems that should keep them happy, healthy and informed about their bodies.

Pain and Prejudice is a vital testament to how social taboos and medical ignorance keep women sick and in anguish. The stark reality is that women's pain is not taken as seriously as men's. Women are more likely to be disbelieved and denied treatment than men, even though women are far more likely to be suffering from chronic pain.

In a potent blend of personal memoir and polemic, Jackson confronts the private concerns and questions women face regarding their health and medical treatment. Pain & Prejudice, finally, explains how we got here, and where we need to go next.

Gabrielle Jackson is an associate news editor at Guardian Australia, and was previously opinion editor there. Before that, she was a senior journalist at The Hoopla. Gabrielle has lived and worked in the USA, UK and Australia as a journalist and copywriter. She currently lives in Sydney and commutes regularly to the Riverina district of New South Wales. Gabrielle was first diagnosed with endometriosis in 2001. In 2015 she was also diagnosed with adenomyosis. After writing about endometriosis for the Guardian 2015, she became interested in how women's pain is treated in modern healthcare systems and has been researching and writing about the topic since then. Gabrielle loves cooking and is a kebab connoisseur. In 2011-2012, she spent eight months travelling from Europe through the Middle East to Asia sampling and researching the history of the kebabs and their journey to the western world. She returned to Australia after being run over by a train in India.

Pain and Prejudice
Allen and Unwin
Author: Gabrielle Jackson
ISBN: 9781760529093
RRP: $29.95

Interview with Gabrielle Jackson

Question: What inspired you to write Pain and Prejudice?

Gabrielle Jackson: I was inspired to write Pain and Prejudice because I had many questions about women's health in general and women's pain in particular that I just couldn't find the answers for. I suspected women, people of colour and gender diverse people weren't being treated well by health professionals and that illnesses that mainly affected women weren't being adequately studied by medical science. I was right. But I also had the impression that women themselves were largely ignorant of how their bodies worked and were pressured by social taboos to keep silent about their suffering and that these factors might be playing into women getting a raw deal in healthcare.

I wanted to write a book that both educated women and other people with female sex organs about how their bodies work and what's normal and what isn't when it comes to pain. To do that, I had to smash taboos and end myths about the female reproductive system, female sexuality and female perception of pain. I believed that all these factors were somehow related but it wasn't until a year into researching and writing the book that I was really able to put all this together.

I wrote the book to find the answers to questions I had about my own wellbeing. I learnt something new almost every day I sat down to write or conducted an interview. I was astonished by what I found out - and by the end, I had a completely new picture of myself. It was an incredibly emotional experience but ultimately a joyful one. I'm not cured of my pain but for the first time in my life, I understand it.


Question: What advice do you have for women recently diagnosed with endometriosis?

Gabrielle Jackson: My book is not just about endometriosis. I think this is an important point because while awareness of endo has grown substantially in the past few years, there are many women in constant pain who don't have endo, and who might be dismissed if endo isn't diagnosed. There are many women and other people with chronic pelvic pain who do not have endometriosis and they deserve to be believed and treated well as much as anyone with endo does.

There are 10 overlapping chronic pain conditions that can have severe impacts on people's lives that predominantly affect women that show signs of similar mechanisms at work in the body. They are: endometriosis, fibromyalgia, chronic fatigue syndrome, vulvodynia, painful bladder syndrome, irritable bowel syndrome, temporomandibular joint disorders, chronic tension type headache, migraine headache and chronic lower back pain. Chronic pelvic pain itself encompasses many of these conditions and can be present with or without endometriosis.

My advice to women recently diagnosed with endo is the same for any person living in chronic pain: find a good doctor who asks you lots of questions and believes your answers. There are many caring doctors out there so if you go to one who doesn't believe you, find another one. Don't be afraid to seek a second opinion. The more you can describe what's happening for you, the easier it will be for the doctor to diagnose or to send you to the right specialist - so try to be aware of all your symptoms, maybe keep a diary for a while so you can work out what's normal for you. Tell the doctor, even if you think the symptoms are unrelated.

Once diagnosed, find out about the condition from trustworthy medical sources. Don't be afraid to ask questions. Believe in yourself and know that there is often very good treatment out there. You don't have to live in constant pain and there are lots of great doctors, nurses, physiotherapists and other healthcare professionals who will help you manage whatever condition you have.

For women recently diagnosed with endo, I say: there is so much happening in this area, don't be afraid for the future. And if it is available to you, try pelvic physiotherapy! (Actually, that last point goes for anyone with pelvic pain.)


Question: How does your endometriosis currently affect you?

Gabrielle Jackson: I have to work hard at being healthy, it doesn't come naturally, but I think I know myself well enough now to know my pain triggers. If I miss yoga for a week, my body really feels it. I need to keep my back and hip muscles supple or they contract and cause a lot of pain. Day to day, I am well but getting over tired or rundown does really affect me. I have cycles of debilitating fatigue that I find hard to manage. Life can feel quite overwhelming at those times but I know they don't last forever and I just try to be kind to myself then: eat well, get lots of sleep and avoid too much red meat, caffeine and alcohol. I'm hopeless at giving things that I love up so I will never give up coffee or wine but I have become much better at moderating my intake in the bad times!

I'm really happy to say that so far this year, I have only had one really bad pain flare up that I couldn't manage - and that was in April. I feel so happy about this fact!

I am really lucky to have had a brilliant gynaecologist and GP and my conditions (I also have adenomyosis) are well managed now after surgery four years ago and with a variety of medication, physiotherapy and yoga. My doctors not only believe what I tell them, they listen to my needs to prioritise treatment. This should be normal for doctor-patient relationships but sadly, I know it isn't. I like to talk about my relationship with my gynae and GP so people learn what's normal and strive to find the right doctors for them. Having a good GP who knows you well is extremely important for anyone with endo or any chronic disease. Make this your priority now!


Question: What is the main message you hope women take from Pain and Prejudice?

Gabrielle Jackson: That it is not normal to be in pain and you don't have to live like that.
Ultimately, I hope the book gives women and minorities the confidence to seek good treatment when they aren't well, that it helps change the way doctors see their female and gender diverse patients and that enough people get really angry about medicine's lack of interest in women's pain that more money is spent investigating it.


Interview by Brooke Hunter

Pain and Prejudice 
Allen and Unwin
Author: Gabrielle Jackson
ISBN: 9781760529093
RRP: $29.95