Brilliant Books Club: Pain and Prejudice
Pain and Prejudice: A Call To Arms For Women And Their Bodies
By Gabrielle Jackson (Piatkus)
One in ten women worldwide have endometriosis, yet it is funded at 5% of the rate of diabetes; women are half as likely to be treated for a heart attack as men and twice as likely to die six months after discharge; over half of women who are eventually diagnosed with an autoimmune disease will be told they are hypochondriacs or have a mental illness. These are just a few of the statistics that Guardian editor, Gabrielle Jackson, uncovers in her book Pain and Prejudice: A Call To Arms as she asks: how did we get here and where do we need to go next?
If you’re stuck in a lift with a cynic, what would you say to encourage them to read your book?
I think my biggest cynics are doctors. After all, what could they learn about medicine from a journalist? It’s a reasonable question. So I would tell them about my friend who is a male GP. A young but caring, smart and thoughtful doctor who once said to me: “I’ve never had a fibromyalgia patient who wasn’t batshit crazy”. After reading my book, he said he was seriously rethinking how and why he had labelled these women and the ways he’d been trained to think in such a way. He took my book to work and when he had a patient who was struggling with the correct words for her anatomy, he took out my book and showed her a diagram labelling the vulva. The consultation totally changed. My friend was also changed by this. “She trusted me,” he said, and that trust enabled the two adults to have a conversation about sex free of awkwardness and embarrassment. A similar incident happened the following week in a consultation about gynaecological issues. “I think my relationship with my female patients has totally changed”, he said.
I don’t think I need to convince women, men or gender diverse people who live in pain to read the book – they get it, they’re hungry for information. But we also need to take medical professionals on this ride with us and enable them to see the pain from our perspective. Hysteria is so baked into medical thinking, most doctors – like my friend - don’t even recognise they do it.
What are three lessons you want readers to take away?
Your pain is real
More research is needed into chronic pain and that will only happen with a concerted lobbying campaign from people in pain and their allies
Find a good GP/family doctor who you trust, who believes you and stick with them.
What inspired you to write the book? Was there a particular event/thought which set you in motion?
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 to. 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 more than a year into researching 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. 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 reassuring one. I’m not cured of my pain but for the first time in my life, I understand it.
What’s been the biggest adversity you’ve faced - and what did you learn from the experience?
Time is often my biggest foe. I have a demanding job – and one I love – and I couldn’t give it all up to go off and write a book for a year. So I had to juggle full-time work with research and writing. And I had to do that while fighting my daily battle with pain and fatigue. It wasn’t easy. In fact, I remember some days, the mental struggle was so hard, I said to myself, ‘Just write one sentence. Then write one more sentence.” The mantra, ‘one sentence at a time’ got me through the most intense writing phase. Ultimately though, I was motivated by what I was discovering and by the idea that the knowledge I had found must be shared if it was to mean anything.
The most amazing lesson I learned from the experience is that I am not weak or second rate – ideas about myself that had been baked into my psyche from years of pain and fatigue that went undiagnosed.
What piece of advice/wisdom from your book don’t you follow enough?
My whole book is about how women in pain are thought of as ‘difficult’, ‘hysterical’ or ‘crazy’ and the point of the book is to show how these ideas are false but intransigent because of how deeply rooted they are in medicine and cultural norms. I am trying to say to people living in pain and the healthcare providers who care for them: these people are not crazy, hysterical or difficult. We have to start listening to women and believe in their pain.
And yet, I all too often still judge myself in ways that I would never dream of doing to others. I find myself wondering if I am a hypochondriac, after all, or scolding myself for being lazy. I’m just really tired and in pain. And I actually cope pretty well with life.
What’s the most moving - or strangest - reaction you’ve had from a reader?
I feel so lucky to have had hundreds of really moving messages from readers and it really reassures me that I did the right thing in publishing the book, even when I really wanted another year to work on it so “I could make it better’, ie never have finished it!
But one message that really stands out for me happened after I was a guest on an Australian radio show. A woman who had struggled with endometriosis for 20 years messaged me to say that her dad had heard me on the radio and called to tell her to listen. She said afterwards, they spoke about her disease for the first time in her life. It had been considered an ‘embarrassing’ topic before hand, even after years of fertility struggles as a result of the endometriosis. She told me she was crying while writing me the message and I sobbed when reading it. That night, when I retold the story to an audience at a talk I was giving, I cried again, and several people in the audience cried! I think her story was very relatable.
Another woman thanked me for talking about hypochondria. She said her teenage daughter had chronic pain problems and had diagnosed herself with everything from Aids to Ebola. She told me the rest of the family often jokingly called her a hypochondriac and now she realised why that was so bad. Her daughter did these things, not because she was just hysterical or an attention seeker, but because she was in pain all the time and no one could tell her why. She was scared and of course the worst illnesses in the world seem possible when you feel so sick, alone and misunderstood and you have very little life experience to help you cope.
Which book (by another author) has you changed your life - and why?
I am going to be cheeky and choose two, one fiction and one non-fiction.
The first is Endometriosis and Pelvic Pain by Dr Susan Evans. This book changed my life because it made me see how little I knew (and most doctors, too) about endometriosis and pelvic pain. It changed the way I saw my disease but also myself and really spurred me on to write my book.
The second is My Brilliant Friend by Elena Ferrante because I have never seen women’s inner lives portrayed so truthfully in literary fiction. I found it thrilling.
And, most importantly, what snack keeps you going whilst writing?
Cheese! And peanut butter (but not together).
