23 November 2019, Royal Melbourne Hospital, Melbourne, Australia
When I was 19, I had a skiing accident and suffered a compound fracture of my sacrum. Orthopaedic surgeons seemed fascinated by this injury, each doctor in turn from the Thredbo clinic to Canberra hospital to Sydney telling me they’d never seen a compound fracture of the sacrum like this on a young person. They did lots of tests and x-rays and crowded in my room to talk about it. No one doubted I was in pain and I received lots of attention and sympathy. Cards crowded my room in the rehab hospital.
When I was 35, I was run over by a train in India. I had a broken shoulder, some sprains and torn ligaments and lots of cuts and bruises. It was very painful and everybody around me infinite supplies of sympathy.
I had also lived with severe period pain since my early teens and had been diagnosed with endometriosis at age 23. Sure, there was sympathy after my two laparoscopies but it’s not a pain I talked about much and was not always noticeable to people around me.
Despite these serious injuries and significant pain, I didn’t really pay much attention to different kinds of pain until I was recovering from my second laparoscopy to remove endometriosis when I was 38. The surgery was successful – I’d be warned there was a risk I would have to have a bowel resection and maybe lose an ovary, none of those occurred. But I was also told I’d be better the next day – if not, the day after. I wasn’t. I was in tremendous pain, had uncontrollable nausea and I was frightened. I felt so unwell but I couldn’t account for why – my caring, understanding doctor thought I should be well and I was ashamed to admit how terrible I felt.
Only a few months earlier, I’d had a life-changing moment. It was at a conference run by EndoActive – an advocacy group formed by mother and daughter powerhouse Lesley and Sylvia Freedman, who were demanding better information for people with endometriosis. I went to the conference as a journalist and a patient - but as a patient who believed she knew everything there was to know about endometriosis. I did not.
I shed my first tear when a researcher told the audience that women with endo are 180 times more likely to have chronic fatigue. I had been diagnosed with chronic fatigue syndrome when I was 16. A man I met at uni told me chronic fatigue syndrome was a made-up illness and I felt so ashamed at my weakness I never admitted that diagnosis to anyone ever again. Maybe I had made the whole thing up, I thought? Was I really that sick, that tired? I could no longer remember. Now I recognise that bout of fatigue as just something I live with – and here I was finding out it was a typical symptom of endo.
Not longer after that revelation at the conference, there was a presentation on how endo affects the bowel. I also believed I had irritable bowel syndrome.
Doctors and researchers talked about back pain that sounded a lot like mine, which I thought was due to the skiing accident, they talked about nausea, poor sleep, headaches and dizziness – all common features of my life.
All my adult life, I had thought of myself as a weak person, someone a bit second rate, someone who couldn’t cope with life very well. I wanted to be stronger, I wanted to do more but I always seemed to pay for my periodic bouts of energy in ways I didn’t see happening to my friends - who I believed must have been simply stronger, better, more capable. Routines were good but so hard to keep – I’d make some progress, then be knocked over for a week by incredible pain, or fatigue or stomach upsets. And it took weeks to regain my strength afterwards.
But then, there I was, this May day at Sydney university, learning that all these things that were wrong with me were not at all random but each very common symptoms of this disease I had, this disease I thought amounted to quite bad period pain, but in reality was so much more – was in fact, me.
I was not weak, I was not a hypochondriac. I was a woman with endometriosis. I tried to call my mother when I left the conference to tell her this but I couldn’t get the words out. I was sobbing and I couldn’t stop. I got on the bus and still I couldn’t stop. People slyly and subtly stared at me but still I couldn’t stop sobbing. ‘Mum, I’m not a hypochrondriac, all these things wrong with me are real” I tried to say, over and over again. How do you cope with a lifetime of thinking you’re a hypochondriac only to discover you’re not?
I’ve heard doctors talk about how women love to get an endometriosis diagnosis. It’s often discussed in quite patronising tones – “see how women love to be sick”, is the implication. What is more rarely discussed is that the joy of diagnosis comes from a place of self doubt, from a realisation you aren’t crazy, or weak or a hypochondriac. That the pain you felt was real. This is especially powerful when you have been told by other doctors that the pain is in your head or that it’s normal, or you’ve waited for years for a diagnosis.
Reimagining yourself isn’t easy but legitimacy is a good first step. The knowledge that conference gave me and the research I’ve done since on understanding this disease I have gave me more strength than I could ever have imagined. I would never have dreamed I could write a book while working full time but this knowledge let me dream that dream and here I am today.
But what does this have to do with my recovery from laparoscopy?
I had worked for months on letting myself believe I was stronger than I thought only to be confronted again with these thoughts: maybe I am a hypochondriac? Why don’t I feel better when all the doctors and nurses think I should be? Why do I feel so bad? Why is this pain and nausea and fogginess so scary? I’ve lived in New York, London, Barcelona and Sydney. I’ve travelled through the Middle East alone. I’m not easy to scare, am i? Am I making it up? Do I want to be sick?
After about a week, I was still in pain. The scars had started to heal and my insides no longer felt like knives were scoring through them every time I moved but I had intense digestive troubles. I couldn’t sleep more than an hour or two without waking up from the sensations. I paced up and down to try to alleviate it but as soon as I lay down the pain would return. But I was tired and weak, I needed to lie down.
I went to see my GP. I was trying to describe the feeling to her, telling her the pain was better but this other feeling wouldn’t go away. She did a physical examination. “Why are you telling you’re not in pain when you are?” she asked. I didn’t know why I was telling her I wasn’t in pain, why couldn’t I admit to myself that this was pain I was feeling? My guts hurt like hell. Yes, that’s pain too. She talked me through what she thought was happening, prescribed a new drug and told me why she chose that drug over another. Told me what to eat and drink and sent me for an x-ray, urging me to come back if I was still IN PAIN in another few days. (I love my GP)
It was after that consultation that I went home and thought about all the pain I’d had in my life. In my book, I write: “I relived every episode [of pain], playing it all out in my mind, obsessively. Felt the injuries, over and over. All this pain suddenly accumulated, and like a flooded dam, it washed over me. I was heavy from the burden of it. And choked on it. Every vessel felt constricted, harsh, and to breathe, eat, walk, move a limb, roll over in bed, all required effort. I started to see my body as separate, something apart from me, something cruel and devious and punishing. I came to hate my body and all the pain it had caused.”
So why am I telling you this, when I’m pretty sure I’m preaching to the converted? I decided to tell this story because I believe the people in this room can make change happen.
It was through my own journey of pain that I came to the conclusion I had to use the platform I had as a journalist and editor to share the knowledge I was lucky enough to have received. Because that knowledge really did give me power.
When I was first writing about endometriosis for the Guardian I met the filmmaker Shannon Cohn who made the EndoWhat? documentary and who is working on a second film now.
She told me that her motivation to make the film was because in the 20 years since she was diagnosed with endo, nothing had changed. Many doctors are still giving bad advice, it still takes an average of eight years to be diagnosed, women are still told periods are supposed to be painful, women are still being subjected to ineffective surgeries.
Having been through misdiagnoses and multiple surgeries, Cohn wanted to do something that would put pressure on the medical establishment to change things. She started researching successful social change movements and studied HIV and Aids campaigns.
There were three important lessons she learnt from her studies, she told me. “One, patients became experts in their disease; two, they organised incredibly well; and three, they weren’t afraid to make people in power uncomfortable.”
Aids went from an incurable, highly stigmatised death sentence to a medical miracle in less than half a century. A similar tale can be told about breast cancer.
I happen to think that in Australia, we’re very lucky. The doctors, nurses, physiotherapists, researchers and other professionals who got behind the EndoActive conference showed a willingness from within the medical community for change. And importantly, a willingness to share knowledge to help patients become experts in their disease. And here in this room right now, I see the same willingness, energy and enthusiasm.
We’re up against the odds – which these days favour Instagram heavily. At the same time that a small group of experts and patient advocates were lobbying the government here in Australia to make the national action plan for endometriosis happen, “influencers” were lining up online to glamorise multiple laparoscopies and take sick selfies from their hospital beds. I don’t blame them! Who doesn’t want some sympathy in such a dreadful time? But I do worry that surgery is seen as a badge of honour and the only treatment for endo. I also worry in becoming a fashionable disease, the awareness raising becomes shallow - ends with the sick selfies and fails to push boundaries or consider the full picture of women in pain.
Only last week, one so-called influencer who has almost 53,000 followers on Instagram proclaimed that taking the pill had caused her polycystic ovary syndrome and endometriosis and that both were curable by quitting all pharmaceuticals and changing one’s diet. She became incredulous when people demanded evidence for her claims of a cure. Just yesterday, I was sent a video from a Twitter account that promised me a natural and permanent cure for fibroids in just 21 days and all I had to do to learn the secrets of the simple 3-step miracle program was to click this link and provide my credit card details and I would feel better by the morning! It implied that the terrible drugs we’ve used to manage the fibroids have actually caused the fibroids. The sad fact about this short video was that it was mildly convincing, and I found myself wondering if I was desperate, if I didn’t know what I know, would I try it? I remember, after months of one cold sore after another, signing up for a miracle cold sore cure once in my younger years. It wasn’t a miracle.
This is where we are. Trust in institutions is shrinking and pseudo science is on the up – the wellness industry is growing and people are abandoning science. Which simply means the time for science is now - and has never been more important. We need people like you to help arm people like me with facts.
Together, we need to call policymakers, medical leaders and the people who allocate research funding to account – we need to make them very uncomfortable – and unfortunately they are not made uncomfortable by the sight of a beautiful woman in a hospital gown.
Say the word ‘period’ however and watch them run for the hills.
Journalists can’t do this alone and nor can doctors. And it’s beyond the reach of many chronic pain patients to do this themselves.
But I’m afraid it if we’re to succeed, we may have to make ourselves uncomfortable too.
Part of our campaign to make change must involve examining the ways in which we communicate. Am I part of the ‘fake news media’, an establishment that believes we know better than everyone else? How can I communicate my message in way that doesn’t look down on people? This is very close to home for me. I have had people I know object to the Guardian’s coverage of people like Pete Evans and the practice of chiropractors and naturopaths. They have called our coverage “biased” and “unfair” and think it’s sniggering to people who are desperate.
I think medicine has the same problem. I’ve met countless other people who have told me they turned to natural therapies because these practitioners listen to them, believe them, have time for them. Their treatments may not work but nor did the pharmaceuticals given to them by their doctors.
In a brilliant essay published in the UK’s New Statesman magazine this week reflecting on all the recent literature about women’s pain, the author Imogen West-Knights writes: “We all like to scoff at the wellness industry, with its crystals, potions and lotions, but for those suffering from conditions the medical establishment does not yet understand, it can seem like the only option available.”
We cannot lose the people who have flocked to wellness and together, we have to find a way to win them back.
Understanding my disease and seeking out knowledgeable doctors and physiotherapists has improved my life to no end. I now have a quality of life I couldn’t have dreamed of five years ago.
I have been overwhelmed by the support of doctors, researchers and physiotherapists, both when I was writing the book and since it has been published. Health professionals have shown up to every event I’ve had around Australia. But they have all been women who are already thinking about these issues. Not a single male doctor who I didn’t already know has been in touch with me about this book. It’s not that I think they don’t care. I’ve had very caring and generous male doctors in my life and a few terrible females ones. It’s more that men are not hearing these conversations. Men have been socialised to tune out women’s voices, to believe –subconsciously or not – that women’s voices don’t matter. Certainly, that women’s periods don’t matter to them. Others believe it’s all a bit of feminist claptrap. This is not unique to medicine nor the media.
There are many good news stories to tell from the men I do know. My partner is a male GP and he told me the book has changed the way he practices medicine. He now sees gross examples of colleagues belittling or disbelieving women on a weekly basis and eagerly reports them all to me. How had he not seen this before?
I’m sure each of you has thought about the impact your words can have on your patients. How the expectations of doctors and other health professionals can make or break their patients. How information rather than expectation is so powerful. But many doctors have never considered how their words, their language and their expectations have an effect on their patients. And not because they’re bad people. Many patients have never considered how the words they use to describe their pain affects what the doctor believes about them as people. And not because they’re stupid.
A male GP I know, who is a lovely, caring man, once told 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. “I think my relationship with my female patients has totally changed”, he said. This was from a man who, in the nicest possible way, felt he had nothing to learn from my book – after all, what could a doctor possibly learn about medicine from a journalist? It’s a reasonable question.
Two women have written to me after reading my book who got from it the courage to challenge what their male doctors were telling them. On both occasions, the doctor really listened and changed their approach – they weren’t offended or put out but happy to be faced with more knowledgeable patients and ready to work together with them.
But I have heard countless other horror stories from women who are treated really badly, disrespected, disbelieved and given very questionable treatments or none at all.
A nurse I know told me that she felt so bad reading my book because she used to work in gynaecology clinic where they did a lot of laparoscopies on endo patients. She said she never had really sympathy for the patients or any understanding of what they’ve been through and all the staff talked about them as though they were difficult or whingers. She tried to give the book to a friend who still works there but she wouldn’t take it. ‘I already know about women’s health’, she told my friend.
How do we get these doctors, nurses and other health professionals to listen when we know that so often the simple act of reflection and perspective can lead to huge changes?
In the New Statesman, Imogen West-Knights concludes her essay like this: One of the questions I had in mind when I began reading these books was: “Do they make a difference to women in pain?” I did not expect to arrive at such a concrete answer. At some point during my reading, the penny dropped: the symptoms of endometriosis were my symptoms, too. I’m now making appointments that could (could!) lead to my finally being diagnosed. So it is almost too clear to me that the answer to my question is: yes. Whatever happens from here, for me and for all of the millions of other woman in pain, the fact that there is now such a breadth of insightful books about the subject is comforting proof that we are not alone. There is strength in numbers.”
These books can’t be written without the careful guidance of people like you. A journalist’s job is to tell the stories of others. Stories need facts, yes, but they also need to be relatable, include real people and real life in them too – and that’s why only the media, medicine and patients working together can really bring about the change we want to see.
I know it’s hard as a doctor to challenge your colleagues. I have found it hard enough to challenge my friends. I often find it hard to convince editors these stories are worth publishing. That’s why none of us can do it alone. But – as West-Knights so simply notes: there is strength in numbers.
Gabrielle Jackson’s book is called ‘Pain and Prejudice - A Call to Arms for Women and Their Bodies’