What Happens When Doctors Don’t Listen to Patients

The medical system treats a lot of women’s illnesses as unexplained mysteries. In this excerpt from her new book, Pain and Prejudice, Gabrielle Jackson shows that the real problem may be an inability to listen.

Doctors should listen to their patients. This may sound obvious, but research by Dr. Kate Young, from Monash University, has found that many doctors discount or dismiss women’s reports of their diseases, or treat them with suspicion. Some doctors told Young that they believed they had to confirm women’s stories themselves, or believed they’d be able to tell whether the patient’s reports were true or not. “Women’s knowledge was typically incorporated only once it had been filtered through the medical gaze, with clinicians extracting what they deemed relevant,” Young wrote. How doctors think they can work this out in a single 20-minute (or shorter) consultation was never explained. As bizarre as this sounds, it’s widespread practice. Doctors are, in their own and society’s eyes, the ultimate judges of who is sick and who is “crazy.”

This issue rose to prominence during the women’s health movements of the 1970s, spurred along by women such as Harvard Medical School’s first female dean, Dr. Mary C. Howell. In a 1974 report for the New England Journal of Medicine, she wrote:

“Following traditional linguistic convention, patients in most medical-school lectures are referred to exclusively by the male pronoun, ‘he.’ There is, however, a notable exception: In discussing a hypothetical patient whose disease is of psychogenic origin, the lecturer often automatically uses ‘she.’ For it is widely taught, both explicitly and implicitly, that women patients (when they receive notice at all) have uninteresting illnesses, are unreliable historians and are beset by such emotionality that their symptoms are unlikely to reflect ‘real’ disease.”

It would be comforting to think that a lot has changed since the awareness-raising heyday of the 1970s—but today’s prevalence of medically unexplained symptoms (MUS) is evidence that it has not. Women are more likely to be diagnosed with MUS than men, which is unsurprising given medicine’s lack of knowledge about female biology. If an illness is hard to diagnose, it often gets dumped into the MUS basket, which makes other doctors less likely to keep searching for a diagnosis and far less likely to trust the patient, even if they seek help for an entirely different issue.

(Related: 11 Questions You Should Be Asking Your Doctor)

In Doing Harm, Maya Dusenbery calls this the double bind of medicine’s knowledge and trust gap: “Women’s symptoms are not taken seriously because medicine doesn’t know as much about their bodies and health problems. And medicine doesn’t know as much about their bodies and health problems because it doesn’t take their symptoms seriously.” Having a diagnosis of MUS or anxiety makes it much harder for a patient to be taken seriously by any health professional, as almost any symptom they present with can be shrugged off as anxiety or stress. In her 1978 book Illness as Metaphor, Susan Sontag wrote: “Theories that diseases are caused by mental states and can be cured by will power are always an index of how much is not understood about the physical terrain of a disease.”

In cases where a physical disease is present but can’t be controlled, Young wrote that medicine tends to position it as “uniquely mysterious and by finding fault within the women who experience it.” But actually listening to sufferers may be the act of demystification that allows for better treatment and sharper research focus.

Dr. Susan Evans, a pelvic pain expert based in Australia, is a great advocate of listening. In her 18 years of treating women with pelvic pain, she has asked them to record their symptoms in questionnaires. From this data she has established that women with severe period pain (with or without endometriosis) usually have a combination of 14 symptoms in addition to their severe dysmenorrhea, which include: stabbing pains in the pelvis, bowel problems, food intolerances, bladder problems, headaches, sexual pain, vulval pain, fatigue, poor sleep, nausea, sweating, dizziness/fainting, anxiety and low mood.

Evans published a study in the Journal of Pain Research showing that women with severe period pain, on average, have eight and a half other symptoms from that pool of 14. This study didn’t take place in a lab. By listening to, believing, recording and analyzing women’s reports of their illnesses, Evans now understands a lot more about endo and other forms of pelvic pain — which is informing her research today.

One patient told a British parliamentary inquiry into endometriosis and fibroids, “I just wish doctors knew to LISTEN; we know our bodies better than anyone else.” The inquiry’s report noted: “Of the over 1,000-plus comments that we received for endometriosis, almost every person spoke about being dismissed by health-care professionals and having to fight for a diagnosis, information and treatment.”

(Related: Getting a Second Opinion from a Different Doctor Saved Me)

Heather Guidone, the surgical program director at the world-leading Center for Endometriosis Care in Atlanta, also stresses the importance of listening to patients: “So many patients who come to us are so grateful that we actually listen to them and take the time to answer all of their questions and hold them as equal partners in their care — when in reality this should be the standard of care everywhere. It’s sad that so little seems to have changed over time in this regard.”

Evans says, “I have loads of people who come along and say, ‘My GP says I’m a mystery and that they don’t know what’s happening.’ And I think, Your story’s exactly the same as the last person I saw. It’s no mystery.’

It struck me when Evans used these words that I’d heard an almost identical sentiment out of the mouth of Dr. Nikki Stamp, one of fewer than 12 female cardiothoracic surgeons in Australia. Stamp has written a book on heart disease and is an energetic campaigner for greater understanding of this disease in women. She sighs over the phone when I speak to her, telling me about how often women’s heart disease symptoms are misdiagnosed as anxiety. “It happens all the time,” she says, before sharing the story of a woman in her 40s who’d just had a heart attack. The patient had presented to her GP and to emergency departments several times with symptoms including shortness of breath and discomfort in her chest, but was diagnosed with anxiety and sent home. “She finally got admitted to hospital and someone finally thought to check out her heart, fully expecting to find nothing actually but ended up finding something quite serious. She had a blockage in one of her major arteries in her heart. It’s a blockage we tend to refer to as a ‘widow maker’; it’s that serious that traditionally it’s been associated with people just dropping dead,” Stamp says. “It’s always the same story when you hear about a patient like this.” She says the male doctors always sit around saying things like, “Wow, this is really unusual, how amazing, never would have seen that coming.”

In her exasperation, she is sometimes accused of jumping on a feminist soapbox when she points out, “But we do see these stories all the time. It’s not unusual, it’s not uncommon, it’s not amazing. Why are we accepting this as such an anomaly? Why aren’t we thinking about this as the norm?”

Because the norm in medicine has historically been a 70-kilogram white man, that’s why. And even though the research on the differences in heart disease and presentations of heart attacks in men and women is out there and accepted, says Stamp, it just won’t sink in with some doctors that this female patient’s presentation was entirely normal. Not all men have typical symptoms either, so more recognition of so-called atypical presentations would ultimately benefit everyone.

(Related: Why Aren’t Women More Worried About Heart Disease?)

After patients are listened to and trusted, treatments often become more effective. In Young’s study on endometriosis, one GP reported how her practice had improved when she started asking patients to keep diaries of their symptoms. Meanwhile, Dr. Clare Fairweather, an Australian doctor specializing in chronic pelvic pain, describes listening to patients as “the most valuable thing” a doctor has in treating them: “You’ve got to listen, you’ve got to have your ears open and you’ve got to hear it; don’t dismiss it. What is the problem for this person at this time?” She says it’s vital to understand the patient’s priorities and accept that these may not be yours as a doctor.

Women’s illnesses become decidedly less mysterious when we really listen to, and believe, what they’re saying.

Dr. Mona Orady, director of robotic surgery at St. Francis Memorial Hospital in San Francisco, practises minimally invasive gynecological surgery at Dignity Health Medical Foundation. Her expertise is in complex surgery, menstrual disorders, fibroids and endometriosis. She also cares for more specialized gynecology patients with pelvic pain, dyspareunia, vulvar disorders and pediatric gynecological conditions. She says she treats “the problem, not the pathology.” “We have to FIFE patients,” she says. “What FIFE stands for is we have to ask patients about their feelings, their ideas, their fears and their expectations.” She says she asks every patient what their goals are, and what they want to achieve by seeing her, before she can decide what level of treatment should get them back to their normal life. “I can’t just treat the disease. I have to treat how it impacts their life.”

In his 2007 book, How Doctors Think, Jerome Groopman interviews Debra Roter, a professor of health policy and management at Johns Hopkins University, about how doctors diagnose patients. “The doctor has to make the patient feel that he is really interested in hearing what they have to say. And when a patient tells his story, the patient gives cues and clues to what the doctor may not be thinking.” Another doctor, Sir William Osler — who, when he died in 1919, had been widely judged to have been among the greatest physicians of all time — became famous for teaching, “Just listen to your patient; he is telling you the diagnosis.” The problem is, listening to “him” has never extended to listening to “her.”

The idea of listening sounds so basic, yet when it comes to women, it seems it’s not so basic at all. This isn’t unique to medicine: Society at large has a problem with listening to, and believing, women — this is what the #MeToo movement is essentially about.

And as Dusenbery acknowledges, there’s always a gap between when symptoms emerge and when they can be medically explained:

“It is unreasonable to expect that doctors, who are fallible human beings doing a difficult job, can close this gap instantaneously — and, given that medical knowledge is, and probably always will be, incomplete, they may at times not be able to close it at all. But it shouldn’t be unreasonable to expect that, during this period of uncertainty, the benefit of the doubt be given to the patient, the default assumption be that their symptoms are real, their description of what they are feeling in their own bodies be believed, and, if it is ‘medically unexplained,’ the burden be on medicine to explain it. Such basic trust has been denied to women for far too long.”

I’ve been on the receiving end of this distrust since my teenage years. But while writing this book, I had another alarming experience. I had crippling abdominal pain and constipation that lasted three days — it was a pain I’d never felt before, and I could barely move. I was nauseated and feverish.

After the third night with little sleep, I went to the emergency room at the local hospital. I’d only been to an emergency department two other times: once in India after being run over by a train, and another time in Australia after having concurrent vomiting and diarrhea for 12 hours because of food poisoning. I’d never been for pain.

Because my partner had worked in emergency departments for years, I was familiar with the in-jokes about patients rocking up at midnight with a sore back they’d had for six months. I knew that “go see your GP in the morning” is the war cry of emergency physicians who are constantly under pressure and annoyed by people who fail to understand the meaning of “emergency.” But my partner, who was out of town, knew this pain was unusual and suggested I needed a physical examination. I was temporarily living an hour’s drive from my excellent GP, so I drove the 10 minutes around to the hospital just before 6 a.m.

The nurses who greeted me were pleasant, and there were no other patients in the waiting room. An intern came to see me, listened to my symptoms, ordered an X-ray and asked me to lie on the examination table. Then I told her about my endo and how I’d had it removed from my bowel a few years earlier. I thought that giving all the information I had, anything that might be relevant, would be helpful.

The intern left the room to speak to the consultant. She came back a few minutes later and said I should see my gynecologist because “this sounds like endometriosis.”

I explained calmly that I couldn’t just pop in to see my gynecologist when I wasn’t feeling well. And I’d had endometriosis my entire adult life — in 20 years of pain, I’d never gone to an emergency department. “I know what my endometriosis pain feels like,” I said. “I know how to manage that pain.

(Related: 10 Things Doctors Secretly Wish They Could Tell You)

“This pain is different. I’m worried about it. You haven’t even done a physical exam. I just want to know there’s nothing serious happening with my bowel!”

She perfunctorily prodded my stomach for a few seconds, then said she’d get the consultant to talk to me directly. But she came back without him and handed me a referral to a private diagnostic imaging clinic for an abdominal ultrasound to rule out appendicitis, cholelithiasis and renal tract obstruction — all serious conditions that if genuinely suspected would have to be treated immediately, and so should have been ruled out in the emergency department.

“I’m not an idiot,” I said to her. “I know what’s happening here. You hear endometriosis and you think I’m either hysterical or a hypochondriac.” The intern blushed. I walked out, and cried all the way to my GP’s surgery, stopping regularly to hunch over in pain or wait for the nausea and dizzy spells to pass.

It turned out I had a gastro virus, and under my GP’s care I felt better within a couple of days. But I’d been treated like a fool, dismissed, ignored and humiliated. I actually felt ashamed that it was only a virus, not an emergency after all; maybe the consultant had been right not to see me, and I’d just been worked up because I hadn’t slept properly in three days and had taken a lot of painkillers — had I taken too many?

I was diagnosing myself with hysteria, ashamed and embarrassed at my behaviour. But when I told my partner what had happened, he was incensed. The ultrasound referral was confirmation of my suspicion the consultant had written me off as a hypochondriac without even speaking to me face to face. In giving all the information I had about my health, I thought I was being helpful, but to the emergency consultant, it translated as me being a highly strung woman anxious about my health. I’ve been asked by doctors before, “Are you often anxious about your health?” and I know at this point they’re writing me off as a “somatizer” or hypochondriac, someone with nothing better to do than pester doctors over trivial concerns. But my partner said the consultant’s response was unethical, sloppy work, and that it could lead to people dying. And the statistics back him up.

In 2016, The BMJ reported that medical errors in general are the third leading cause of death in the United States, after heart disease and cancer. These figures are conservative because currently there isn’t an efficient way to collect data about misdiagnoses and medical errors, but they’re widely acknowledged as a problem. A WHO report found that misdiagnoses were most often the result of a problem in the clinical encounter between doctor and patient, with failing to take a proper history — medical terminology for asking the patient questions and making decisions based on the answers — one of the major factors involved.

In his book, Groopman tells the story of a young woman with irritable bowel syndrome who nearly died of a ruptured ectopic pregnancy after being dismissed by three doctors when she reported abdominal pain that was different from her usual IBS pain. A nurse I spoke to recently told a remarkably similar story of being ignored and having her pain dismissed by doctors until she was diagnosed with an ectopic pregnancy.

These stories aren’t rare, and in September 2018, covering a coronial inquest for The Guardian, I was faced with the truth of this. As well as another painful truth on top of it: However bad I felt for not being believed, for Indigenous and Black women in Australia, Canada and the U.S., it is much, much worse, and the consequences are deadly.

Pain Prejudice Book

© 2021, Gabrielle Jackson. Excerpted from Pain and Prejudice: How the Medical System Ignores Women—and What We Can Do About It. Published by Greystone Books. Reproduced by arrangement with the Publisher. All rights reserved.

Next: Why Are There So Few BIPOC Therapists in Canada?

Originally Published in Best Health Canada