THE BIG SICK
In pain and ignored? Why the medical system fails us.
I was in the back of a taxi, driving through the streets of New Orleans, when I felt it: a twist of excruciating pain, like someone had stuck a screwdriver under my rib and spun it over and over, until it was firmly entrenched there. I clutched at the area, wondering what it could be. Then it happened again, and again. I suddenly felt nauseous; I asked the cab driver to pull the car over so I could be sick. My best friend, a nurse, told the driver to go to the nearest hospital when I was ready to get back in. Normally this friend takes a tough-love approach to sickness (being a nurse makes you see hangover headaches with a bit more perspective), but there were other considerations to make: I was five months pregnant.
At the hospital, I was given an ultrasound but the nurse couldn’t find anything wrong. The pain was still there. The nurse came back with a packet of cookies, in case I was hungry. I stopped short of throwing them in her face but I think she could tell, from my expression, that I very much wanted to. I didn’t want cookies, I wanted to know what was wrong with me, or with my baby. I was 27, in a foreign country not exactly known for its efficient hospital system, pregnant and without my partner. Oh, and in a level of pain I had never experienced before.
In the end, I walked out of the hospital, still in agony, clutching that packet of cookies and none the wiser to what was going on inside my torso. I was told, “This is what pregnancy is sometimes,” and it was only when I came home to my own doctor that she suggested my growing
uterus was essentially squashing my gall bladder, hence the extreme levels of pain. A second ultrasound back in Sydney confirmed this. I was fine, essentially, even though the pain came back intermittently and, crucially, so was my baby. But it had taken a stay in hospital, two ultrasounds, days of bargaining with the travel-insurance company and a flight home to get to that point.
I’m one of the lucky ones. I’ve never had any major health problems, and aside from the feeling that my insides were about to burst in that taxi, and two rounds of labour, I’ve never really felt extreme pain. I count myself lucky not only to have so far dodged pain itself, but also the medical establishment’s routine dismissal of women’s pain. The offhand way I was walked out of that New Orleans hospital felt dismissive to me, but that was a drop in the ocean compared to what many women experience daily.
Research shows that not only do women experience more pain than men, but when they do, it’s often ignored. It’s only now, in 2018, that doctors are discovering that pain differs greatly between the sexes. Research published in March in the Journal Of
Neuroscience from the University of Texas at Dallas found male and female rodents had different pain receptors, and asserted that it was likely the way humans experience pain is similarly sexspecific. Dr Ted Price, one of the lead researchers, says the oversight is down to sexism. “We’ve been overlooking a key variable for a long time, and I’m as guilty as everyone else,” he said in a statement. “Professionally, we saw no reason to do it until 2014. Everyone I know doing these studies is finding new and interesting mechanisms that we’ve simply overlooked.”
And the patients who have been worse off for this oversight are, of course, women. “The numbers are frightening and depressing,” says Maya Dusenbery, author of Doing Harm: The Truth About How Bad Medicine And Lazy Science Leave
Women Dismissed, Misdiagnosed, And Sick. Dusenbery is the former editor of website Feministing, and wrote Doing Harm after working on an investigative feature on the fact that women are seven times more likely than men to be misdiagnosed and discharged from hospital while having a heart attack. (“It caused a huge brouhaha, but not in the way I imagined,” she says. “Doctors were like, ‘Oh, we have to empower women to recognise their symptoms.’ I was like, ‘No, these women are presenting with their symptoms. You are ignoring them!’”)
Then she started looking at the other research around women and pain. It’s frightening: men wait an average of 49 minutes to receive medication for abdominal pain – women wait 65. Women are less likely to be given opioid painkillers (the most effective type) in the emergency room than men. After they’re prescribed, women wait longer to receive them. And even though Professor John Guillebaud of University College London made headlines by claiming period pain can be as painful as a heart attack, it’s something that’s still ignored by doctors. It’s little wonder that an American survey found that 80 per cent of women felt a man in their situation would be treated differently. Almost half said a doctor had told them it was “all in their head”.
Lena Dunham recently wrote a heart-wrenching online essay about her 10-year struggle with endometriosis, which ended in a hysterectomy. “I wake up surrounded by family and doctors eager to tell me I was right. My uterus is worse than anyone could have imagined. In addition to endometrial disease, an odd humplike protrusion, and a septum running down the middle, I had retrograde bleeding, AKA my period in reverse, so my stomach is full of blood. My ovary has settled in on the muscles around the sacral nerves in my back that allow us to walk. Because I had to work so hard to have my pain acknowledged, there was no time to feel fear or grief,” she writes.
Actress Kate Walsh (13 Reasons Why and Grey’s Anatomy) recently revealed she had to push for her male doctor to give her an MRI. She was first offered antidepressants (for symptoms that included exhaustion, cognitive difficulties and not being able to finish sentences) and when she finally convinced the doctor to refer her for an MRI, the test revealed a “very sizeable” tumour in her left frontal lobe.
Last year, a 22-year-old mother in France died of multiple organ failure, shortly after being mocked by an emergency operator, who told her, in response to her suggestion that she felt like she was going to die, “You will die certainly, one day, just like everyone else.”
You’d imagine, as an outsider, that pain is what doctors treat, but that’s not exactly the case – doctors are more interested in keeping us alive and disease-free. Pain is a far lower priority. Carol Bennett, CEO of Painaustralia, tells me that most doctors only study pain management for four hours of their four-year degrees. “Pain is difficult to diagnose because it’s not always visible,” says Bennett. “You can’t always test for it, or test easily – for endometriosis, for example, the only way to truly test is to do a laparoscopy, which is invasive and costly.”
There’s been a historic dismissal of women’s pain since the ancient Greek concept of the “wandering womb”: the idea that women’s ailments were caused by their wombs moving in their bodies (one suggested treatment was pregnancy, to “anchor” the rogue organ). Then there was the blanket diagnosis of “hysteria”, a word derived from the Latin “hystericus” (of the womb) – the belief that women were too emotional for their own good.
In Doing Harm, Dusenbery writes about the way women’s symptoms are brushed off as the result of depression, anxiety or “the all-purpose favourite: stress”. Sometimes, she says, symptoms are said to be part of women’s normal physiological states: menstrual cramps, menopause, being a new mum. “Sometimes, other aspects of their identity seem to take centre stage: fat women report that any ailment is blamed on their weight, trans women find that all their symptoms are attributed to hormone therapy, black women are stereotyped as addicts looking for prescription drugs. Whatever the attribution, there is often the same current of distrust: the sense women are not very accurate judges of when something is really, truly wrong with their bodies.”
“Women think that having pain – to the extent of TORTUROUS PAIN – is part of BEING A WOMAN”
In Australia, Syl Freedman, the co-founder of Endoactive, which is a community organisation that advocates for women with endometriosis, says she’s had countless patients tell her that doctors have dismissed their pain, effectively saying it’s all in their heads. There was the patient whose doctor flat-out said, “Endometriosis isn’t real,” and the one who asked, “Do mad people get endo or does endo make you mad? It’s probably a bit of both.” And guess what doctors often “prescribe” as a treatment for endometriosis pain? Pregnancy (more on this later).
The problem, too, is that while we think of doctors having all the answers, actually, they often simply don’t know as much about women’s health as they do men’s. Angela Saini, author of
Inferior, about science’s often rocky relationship with women, writes, “We think the scientific method can’t be biased or loaded against women. But we’re wrong.” She cites Dr Janine Austin Clayton, associate director for women’s health research at the National Institutes of Health in the US, who told the New York Times, “We literally know less about every aspect of female biology compared to male biology.”
Fewer female doctors means there’s been less interest in women’s health. In 1986 in Australia, only a quarter of GPS and less than one in six specialists were women. By 2011 it had risen to 43 per cent of GPS and around one third of specialists being women. And while medical research has been dominated by men, it’s slowly changing. This year, the National Health and Medical Research Council awarded 55 per cent of its grants to women, redressing the imbalance of earlier years, like
2013, when men were given 66.4 per cent of funding. Still, the knowledge gap, as Dusenbery puts it, persists. Take the 2014 survey study by researchers at Humboldt University in Berlin, and Macquarie University in Sydney – it analysed more than 300 papers on genitalia published between 1989 and
2013 and found almost half only looked at male genitalia. Only eight per cent in total looked at female genitals. (Reporter Elizabeth Gibney called it “the case of the missing vaginas”.)
Until the ’90s, it was common for medical trials to be carried out exclusively on men. Sometimes there were valid reasons for this – for instance, not wanting to give experimental drugs to women who may be pregnant and not know it, but the result was that we now know more about how to treat men than we do women. For almost all of modern scientific history, women have been given the same treatment as men, despite this gap in research. This means that when women present to the doctor with different symptoms, they’re often not believed or misdiagnosed. With heart attacks, for instance, which are often overlooked in women, the signs vary greatly between the sexes: women with heart attacks tend to have insomnia, fatigue and pain from head to chest, whereas men have the classic crushing pain in their chest. So if doctors are looking for the male symptoms, which are more widely known, then they may miss warning signs for women.
“With women and pain, there is so much going on,” says Dr Thierry Vancaillie, a clinical gynaecologist and pain specialist at the Women’s Health and Research Institute of Australia. A pioneer in developing minimally invasive treatments for women with endometriosis and pelvic organ prolapse, Vancaillie was one of a team of doctors who founded the institute to specifically treat women’s pain. He’s seen firsthand what happens when female patients are misdiagnosed or simply ignored, and he believes the root causes are cultural. “One of the biggest differences between men and women, of course, is that women experience pain regularly with menstruation. So if a woman comes in saying she has a painful period, often the response is, ‘Oh, that’s normal.’”
This normalisation of pain is deeply embedded in women. Freedman remembers being told, even before getting her first period, to expect pain. “I was conditioned to think about periods as painful, so I didn’t realise that my endometriosis symptoms were anything abnormal. I thought all women had to take days off work with period pain. Every single month.” It took 11 years and a chance mention of her incontinence (occasionally Freedman would pee when she laughed) to her mother, who was alarmed (she was 20 and had no children) for Freedman to be diagnosed with endometriosis and understand that her debilitating periods weren’t par for the course. But she’s far from the only one.
Endometriosis expert Dr Tamer Seckin says, “Women think that having pain of all degrees – to the extent of torturous pain – is part of being a woman.” Think of the way we often internalise the pain of childbirth as a crowning achievement, refusing epidurals and other interventions. It’s as if, like Siobhan Fenton wrote in The
Independent, “To ask for relief is to be less of a woman, or to give up the pretence of women being silent, stoic receptacles of reproduction. To demand medical discourse, aid or intervention in the form of pain relief would be giving up the deeply gendered game of keeping quiet.”
Abby Norman is the author of Ask Me About My Uterus,
a memoir about having endometriosis. She’s an example of what Dusenbery calls the “trust gap”, the attitude that women can’t accurately assess their own bodies. She told numerous doctors she was in pain during sex, but was turned away every time – until her boyfriend came with her and confirmed her story. “Now they knew I couldn’t put out like a woman should, they had an abundance of suggestions,” she writes.
“Not believing women in a medical context is like not being believed in a sexual-violence context,” says Dusenbery. The idea of the “perfect patient”, she says, is rife for women who experience chronic pain. “You don’t want to be too hysterical, because then you’re dramatic and it’s all in your head. But you can’t be too stoic, either, as then there’s nothing wrong.” There are parallels with sexual-violence victims, who are often tasked with being “perfect victims” – stating their case plainly but not dispassionately, able to prove they didn’t “provoke” the attack, and so on. It’s devastating, says Dusenbery, and it’s incredibly common. She tells me about a pain specialist she interviewed for her book, who would “coach” her female patients to use every resource they could muster to not cry at appointments for chronic pain, knowing that tears often led to disbelief and were seen as signs of “emotional issues”, which doctors would choose to treat instead of the pain.
Elizabeth Howard is an osteopath who works alongside Vancaillie. She sees a lot of female patients who have been to numerous doctors for chronic pain, and been dismissed or told their symptoms aren’t real. “A lot of them have post-traumatic stress disorder because they’ve not been treated well by other medical professionals,” she says. “And a lot just give up altogether. I mean, when you’re not treated with respect, and it’s either implied or explicitly stated that you’re crazy, why would you keep going? So a lot of these patients are left in no-man’s land.”
While the knowledge gap and trust gap make sure women’s pain is regularly dismissed, the reality is there really is a pain gap. Research has shown that women with multiple sclerosis, rheumatoid arthritis and chronic fatigue syndrome are less responsive to drugs made to treat these ailments, as well as to standard drugs like anaesthesia and ibuprofen, but it was only in the ’90s that researchers began looking at the differences in pain experiences of men and women, something which academics say was frowned upon in the ’70s and ’80s, due to an insistence that the genders were equal. But cultural and social equality is different to being biologically identical, and this one-size-fits-all approach has meant we’re only now finding out that the way we experience pain differs according to gender.
In lieu of medical research, though, women have advocated for themselves. One stunning achievement has been in the treatment of ovarian cancer, traditionally called “the silent killer” by doctors and researchers. In reality, though, for many years women with ovarian cancer had been presenting with symptoms like abdominal discomfort and digestive problems. They were routinely dismissed as having IBS or, as Dusenbery quotes one doctor, as having gone to “too many cocktail parties and eating too many hors d’oeuvres”.
At an ovarian cancer survivor conference in the US in 1998, things came to a head when a doctor on stage once more professed that ovarian cancer had “no symptoms”. The women in the audience who had been telling their doctors for years about their symptoms essentially rushed the stage in an angry mob. One doctor in the audience, Dr Barbara Goff, was intrigued enough by this outpouring of rage that she later published a study that showed that yes, nearly 90 per cent of women with ovarian cancer had symptoms prior to diagnosis.
For Syl Freedman, her endometriosis diagnosis was the start of a career in advocating for the endo community. She founded Endoactive and hosted Australia’s first endometriosis conference. She was instrumental in pushing for – and securing – Australia’s first national plan for endometriosis. Now she’s getting her PHD in medicine so she can author a study of women being told to get pregnant to cure their endometriosis. “I started getting this pain when I was 11, and that’s when my doctor first said to me, ‘When you have a baby, it will go away.’ I was 11,” says Freedman. “At the moment, I only have anecdotes, and even though I’ve been telling doctors about this for years, they need journal articles in appropriate medical publications to believe me. So I decided to become an academic and publish my findings in a medical journal so they’d take me seriously.”
I ask each of the doctors and researchers I talk to if things are getting better. Mostly, the answer is a qualified yes. For Freedman, things are improving because she’s pushing for them to do so. For Painaustralia’s Bennett, things are getting better because, from July, each Australian will have an online health record that allows doctors to track diagnoses, medications and surgeries in patients. Despite the controversy surrounding it, Bennett hopes this will lead to fewer delays in diagnoses and better pain management. There’s also the announcement of the first national action plan on chronic pain, which Bennett hopes will remove its stigma. There’s no word yet on whether the plan will address gender imbalances. For Saini, things are getting better because there are more women in science. “Questions are being asked that were never asked before,” she says. And for Vancaillie, patients are changing the game by advocating for themselves. “Things are changing, but mainly, it’s with the patients. Dr Google, for all its faults, has actually empowered them. They read up on their symptoms and connect the dots, then they come and see us and we validate what’s going on with them.” He sighs and shakes his head. “It’s not perfect, but it’s helping. You know, to me, pain is simply unacceptable.”