Gabrielle Jackson's experience of endometriosis has been a nearly two decade journey and it's a disease the medical world has known of for over a century. Yet, shockingly, so little research has been done and so little funding is set aside to further understand the disease and the women who experience fiercely chronic pain as a result of it.
Jackson couldn't believe there weren't more people talking about this. So she decided to start the conversation herself. In 2015, she wrote a viral article for The Guardian Australia (where she now works as an associate news editor) which connected thousands of women across the world who suffered from endometriosis.
This article was just scratching at the surface of Jackson's curiosity. It sparked a passion for researching the way women's pain and disease is treated (or ignored) and culminated in her recently released book Pain and Prejudice: a call to arms for women and their bodies.
Twenty Something Humans spoke with Jackson who highlights some of the questions her book seeks to answer and shares some advice for others with endometriosis. We also found out a little about the things that make her tick and she shares some tips from her great eight month kebab journey from Europe, through the Middle East to Asia.
What/who sparked your interest in becoming a writer?
I can’t pinpoint one exact moment or person who made me want to be a writer. I just always wrote. Writing stories was my favourite part of school. My stories were always selected to be read out at school assemblies in primary school, I won an award in high school. I wrote stories for fun on holidays. I wrote a diary to make sense of my world. I turned awful experiences into funny stories as a way to deal with the darkness in life. Writing is how I make sense of my thoughts. I have always solved the knottiest issues in my life by writing about them. I don’t know how else to live. The fact I can get paid to do it is an enormous privilege I never take for granted.
Give us the elevator pitch on why you wanted to write this particular book.
I wanted to know why women in every country, of every age, of every culture, of every socioeconomic background was disbelieved, distrusted and discarded when she complained to doctors of ongoing pain, especially pelvic pain. I wanted to know why so many women seemed to be in so much pain but no one was talking about it.
I wanted to know why medical science didn’t understand endometriosis even though they have known about for a century. I wanted to know why so little money had been put into studying this disease. I wanted to know why so few doctors were curious about all the women who were coming to see them about constant pain that they couldn’t fix. I wanted to know why women seemed to accumulate multiple chronic pain illnesses and why women were still being treated as hysterical, even though I thought that was a diagnosis that had been written out of medical textbooks. I wanted to know these things and no one else seemed to be asking those questions. So I did.
"LISTEN TO WOMEN AND BELIEVE WHAT THEY TELL YOU!"
Can you describe how you felt in 2015 when your first article on endometriosis for The Guardian went viral?
I felt like it was worth it. I was really scared writing about myself in that way - it was so personal. But I had so many women get in touch to say they felt I had told the story of their lives that I was really glad I did it.
People told me it had enabled them to talk about their disease with loved ones for the first time. But ultimately, it made me very curious. It raised all the questions I have outlined above because I was absolutely astonished how many women identified so closely with my experience, even when we had very little else in common. I thought, I’ve opened a can of worms here, let’s see where it leads me. It led to Pain and Prejudice.
One of the things that shocked me most in your book was finding out about the women who are dying from heart disease because testing is conducted on male patients and male rats, but the symptoms present differently in women. That’s so shocking. When you were researching for the book, what was the most shocking thing that you learnt?
A lot of facts shocked me in researching this book, but as you’ve said, discovering just how little medical science had actually studied women’s bodies and biology was truly shocking and knocked me for six. I spent almost a year trying to find out more about that because I just couldn’t believe it could be true. It is true. They know hardly anything about us. They only mapped the clitoris in the 1990s (and yes, it was a female doctor who did that - from Melbourne!).
Prior to writing and researching this book, what was a misconception that you held about the female body?
I did not know that the female egg played an active role in the fertilisation process. I thought it just bobbed along and the gallant male sperm came along to pierce it and kickstart fertilisation. Oh no, that’s not at all how it goes. The egg plays an active role in fertilisation and the sperm cannot fertilise the egg without the egg’s active participation.
"I wanted to know why medical science didn’t understand endometriosis even though they have known about for a century. I wanted to know why so little money had been put into studying this disease."
What’s something you want everything to know about endometriosis?
That the physical disease is only part of it, and the severity of lesions, cysts and adhesions doesn’t always correlate with the severity of symptoms. Also - lots of surgeries will not necessarily help. In fact, regular surgeries could be making the pain worse, not better. There are chronic pain and muscular issues involved that can’t be fixed with a scalpel.
If you had all of the world’s most powerful people in one room and you could only pass on one piece of advice, what would you say?
This is easy: LISTEN TO WOMEN AND BELIEVE WHAT THEY TELL YOU!
… and what advice would you offer to other young women who also experience adenomyosis or endometriosis?
Find a good GP who you trust and who trusts you. Trust can be hard to build and it takes time but if you have a doctor you think doesn’t believe you, move on. If you can’t, ask them why they don’t believe you and what would help them believe you. You don’t have to live in constant pain.
Who/what inspires you most?
Good writing inspires me the most, fiction and non-fiction. I just wish I could go back to that feeling of reading LM Montgomery’s Anne of Green Gables or Elena Ferrante’s My Brilliant Friend for the first time, or the first Rebecca Solnit essay I ever read, or that feeling when I heard Masha Gessen tell the story of meeting Putin. “That feeling” is more than inspiration - it’s joy, hope, pleasure and a desire to be better all wrapped into one. I have butterflies just thinking about it.
Final question(s), I have to ask about the kebab journey that you mention in your author bio:
What prompted this 8 month kebab journey around the world?
It sounds so trite to say but I think it was a time when I was trying to make sense of the great clash of civilisations between the eastern and western worlds that was happening. I was 24 on September 11 so I remembered a time before. For some reason, I just became obsessed with the idea that the kebab was a gift the east had given the west and I didn’t think we were treating it with the respect it deserved. (This is embarrassing to write now.)
What’s your best kebab fact?
Gyros, doner and shawarma all come from the verb “to turn”. Is that boring? Ok then, in Turkey, they do not put sauce on their doner kebabs because they use much better quality meat and you wouldn’t want to disguise the taste with three different types of sauce! Just a bit of meat and some parsley salad with onion and a nice warm wrap heated on the charcoal barbecue. Oooooh so tasty!
In your opinion, where can you buy the best kebab in Sydney?
Sydney is lucky to have some good kebab joints but I do miss the Turkish charcoal BBQ restaurants I used to frequent weekly in London. My partner is Iranian so we go to a lot of Persian restaurants - Darband in Auburn or Shandeez in Fairfield. Jasmin’s in Lakemba, which is Lebanese, is an eternal favourite.
Pain and Prejudice: A call to arms for women and their bodies is available for $29.99 at Allen and Unwin's website.
Kate Neilson is the founding editor of Twenty Something Humans. She's a collector of plants and embarrassing stories. Every Sunday she has pancakes for breakfast. She feels awkward writing about herself in the third person. You can lurk her @katiepotatierose.