Book summary “Doing harm”: summary

Introduction

You go to the doctor with debilitating physical symptoms, only to be told that stress or anxiety is the root cause. This routine dismissal leaves you feeling alienated and trapped within a medical system that refuses to take your pain seriously.

Maya Dusenbery investigates this pervasive crisis in Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick. The book argues that women face a devastating systemic combination of medical knowledge gaps and psychological dismissal that delays diagnoses and harms health.

The book is organized into three distinct parts. You will learn about the historical exclusion of women from clinical research and the persistence of the hysteria trope. You will see how these failures manifest in delayed diagnoses for cardiovascular and autoimmune diseases. Finally, you will discover how to navigate the medical system and advocate for your own health.

• Why do doctors so often attribute physical symptoms to mental health issues in women?
• How does the male body serve as the default baseline in medical research and education?
• What steps can you take to overcome gender bias during a clinical encounter?

1. The Knowledge Gap and the Trust Gap

Medical knowledge accumulated over the twentieth century disproportionately benefited men because biomedical research largely excluded women. You live in a healthcare system built around a male physiological baseline.

Medical research has historically excluded women and relied on a male baseline, while doctors routinely dismiss female physical symptoms as psychological.

Women health advocates and researchers allied with Congress in the late 1980s to audit NIH research practices through the GAO, revealing that the NIH had failed to implement its own inclusion policies and lacked records on female participation in multi-billion dollar studies. A 1985 Public Health Service task force report warned about the lack of women's health research. In 1990, the GAO released findings showing NIH non-compliance.

The Baltimore Longitudinal Study of Aging began in 1958 without enrolling women for 20 years. The Physicians' Health Study tested daily aspirin on 22,071 men and zero women.

The Exclusion of Women in Research

A 1977 FDA policy forbidding women of childbearing potential from early-phase drug trials created a paternalistic barrier that hindered the study of drug safety for women. The policy treated every menstruating woman as a potential pregnancy case while ignoring potential paternal genetic risks. This created a chilling effect that made researchers hesitant to enroll fertile women altogether.

The policy was influenced by historical tragedies like thalidomide causing 10,000 cases of severe limb deformities and diethylstilbestrol causing rare vaginal cancers in daughters of patients who took it. Now, 60 percent of recent clinical drug trials underrepresent women. Only 12 percent of recently approved drugs were tested for dangerous interactions with oral contraceptives.

Merely increasing female enrollment in clinical trials is insufficient if researchers fail to analyze and report study outcomes separately by sex and gender. Although the NIH Revitalization Act was signed by President Bill Clinton in 1993, enforcement gaps persisted. In federally funded randomized controlled trials published in 2004 and 2009, women made up an average of 37 percent of subjects.

A 2010 review of depression treatment studies found that 90 percent of ongoing studies planned to include women, but less than 1 percent planned to analyze results by gender. A specific review showed that 75 percent of federally funded trials did not report outcomes by gender.

Pregnant women remain excluded from clinical research, forcing them and their healthcare providers to make treatment decisions without adequate safety data. Due to liability fears and protective defaults, pregnant patients are treated as therapeutic orphans. Most prescription drugs are prescribed off-label without prior FDA testing for pregnancy safety.

There are 400,000 US women battling significant illnesses while pregnant each year. A 2013 analysis revealed that 95 percent of industry-sponsored clinical drug trials excluded pregnant people. This left only 8 total numbers of medications currently approved by the FDA for use during pregnancy.

The Legacy of Hysteria and Psychologization

The modern dismissal of women's physical symptoms as emotional or imaginary traces back to the ancient Greek concept of the wandering womb and centuries of medical theories blaming female reproductive organs. Ancient Western medical texts attributed diverse physical and mental symptoms to a restless uterus. During the medieval period, these symptoms shifted to demonological explanations. By the nineteenth century, medical theories held that women's reproductive functions drained energy from their brains. This made them inherently prone to nervous disorders and lucrative patients for brutal local treatments.

In the decade leading up to the twentieth century, an estimated 150,000 oophorectomies were performed in the US for behaviors ranging from simple cussedness to erotic tendencies.

Sigmund Freud transformed hysteria from an organic physical disease into a mental disorder, introducing the idea that physical symptoms could be caused by repressed psychological conflict. As medical science began accepting germ theory and measurable pathology in the late nineteenth century, Sigmund Freud abandoned neurological theories of hysteria in favor of a psychological one. He argued that psychological distress converted into physical symptoms through the unconscious mind. This framework allowed medicine to blame any symptom it could not yet see or explain on the unknowable unconscious.

Hysteria did not disappear; rather, as medical knowledge advanced, specific conditions drifted into newly recognized diagnoses while the remaining unexplained symptoms were relegated to a diagnostic wastepaper basket. Historian Charles Micale termed the shrinking of the bloated hysteria category diagnostic drift as conditions like epilepsy and multiple sclerosis became distinguishable. However, the medical profession retained catch-all categories for unexplained complaints. They ultimately rebranded them through terms like Briquet's syndrome, somatoform disorders, functional somatic syndromes, and medically unexplained symptoms.

Qualifying for Briquet's syndrome before age thirty-five required 25 of 59 possible symptoms. Somatization disorder in the DSM-III required 14 of 37 possible symptoms.

The medical system suffers from two interlocking problems affecting women: a knowledge gap regarding female biology and a trust gap where women's symptoms are disbelieved. Preclinical studies historically use male cells and animals, and clinical research often ignores female hormonal cycles and underrepresents women. Concurrently, unexplainable symptoms in women are frequently dismissed as psychological, a stereotype deeply embedded in medical culture.

2. Invisible Women in a Male Model System

Medical standards built around male disease presentations cause life-threatening delays and misdiagnoses for women experiencing heart attacks and autoimmune disorders.

Heart Disease and Emergency Misdiagnosis

Women suffering from heart disease often face undertreatment because medical standards use men as the normative benchmark. You must prove you are as sick as men to receive equal care.

Dr. Bernadine Healy described the Yentl syndrome in 1991. Decades of sex-exclusive research created data sets where men are the standard. Consequently, you receive fewer diagnostic tests and lifesaving treatments unless your severe coronary artery disease mirrors male presentations. 26 percent of women versus 19 percent of men die within the first year after a myocardial infarction. Nearly half of all women compared to about a third of men have heart failure, suffer a stroke, or die within five years.

Standard heart attack diagnostic tests rely on male biological baselines. Conventional troponin tests systemically miss heart attacks in women.

Standard troponin levels measure a protein released into the blood during a heart attack using a male standard. Newer high-sensitivity troponin tests with sex-specific thresholds reveal that the traditional test misses about one in five heart attacks in women. A 2015 BMJ study looked at hundreds of patients and found that using a high-sensitivity troponin test doubled the proportion of women diagnosed with a heart attack from 11 percent to 22 percent, matching the diagnosis rate for men.

Active, middle-aged women experiencing classic heart attack symptoms are routinely misdiagnosed and sent home from emergency rooms. Emergency room physicians often rely on superficial demographic assumptions. You might see your classic cardiac symptoms dismissed as acid reflux or anxiety, which severely delays lifesaving interventions.

Carolyn Thomas celebrated her 58th birthday the day before her first symptom onset. She experienced crushing chest pain, left-arm pain, and sweating while walking. An ER physician dismissed her symptoms as acid reflux based on her age. Two weeks later, she suffered two heart attacks on a flight and was diagnosed with a 95 percent blockage in her left anterior descending coronary artery, known as a widowmaker.

Medicine's focus on obstructive coronary artery disease ignores an alternative female-pattern heart disease known as coronary microvascular disease. While the classic male model of heart disease focuses on major plaque-blocked arteries, a large percentage of symptomatic women have clean or nonobstructive arteries. Their reduced blood flow is caused by coronary microvascular disease affecting tiny arteries, which remains largely undiagnosed under standard emergency protocols. The WISE study found that 60 to 70 percent of women undergoing an angiogram for reduced blood flow symptoms had normal or nearly normal arteries, compared to 30 percent or less of men. 10 to 25 percent of women who experienced a heart attack did not have evidence of obstructive CAD.

Autoimmune Diseases and Diagnostic Delays

Autoimmune diseases represent a major epidemic that predominantly affects women, yet they suffer from severe underfunding and diagnostic delays. Three-quarters of people with autoimmune diseases are women, making up one in four U.S. women. 23.5 million to 50 million Americans have an autoimmune disease according to NIH and advocacy groups like AARDA. Despite affecting up to 50 million Americans collectively, autoimmune diseases receive vastly less funding than cancer research, and doctors lack adequate training. It takes an average of 3.5 years and nearly five doctors for a patient to get diagnosed.

Medical professionals frequently dismiss the early, ambiguous symptoms of your chronic illness as psychogenic or hysterical. Because autoimmune diseases often begin with fatigue and transient pain without immediate objective markers, doctors frequently fall back on psychosomatic explanations. They blame stress, depression, or somatization, particularly in female patients. 45 percent of autoimmune patients report being labeled chronic complainers or hypochondriacs in the earliest stages.

Jackie spent ten years passing out, suffering from chronic fevers, joint pain, and heavy periods while doctors told her nothing was wrong. They falsely labeled her as depressed or seeking drugs before she was finally diagnosed with endometriosis and lupus. Katie experienced joint pain, hair loss, and rashes from undiagnosed lupus, but her doctor blamed depression. He claimed that severe stress caused hair loss and that depression made normal aches feel like agony.

Patients of color, particularly Black women, face compounding biases in medical settings where pain is systematically undertreated. False racial stereotypes and false accusations of drug-seeking behavior block care. Research shows that Black patients are 22 percent less likely to get any pain medication compared to whites, and 29 percent less likely to be treated with opioids. Persistent, medically unfounded beliefs about biological differences in nerve sensitivity drive these disparities.

Jackie, a Black woman with lupus and pericarditis, was repeatedly denied emergency room care and accused of being a drug seeker. She was denied proper care until she explicitly demanded it and mentioned she had a Ph.D.

To navigate these systemic obstacles, you can apply specific protective measures:

• Add the title Dr. to all personal medical paperwork and mention a professional academic degree to combat implicit racial and gender biases in emergency settings.

3. Neglected Conditions and Contested Illnesses

Chronic pain, reproductive disorders, and multi-system illnesses are frequently normalized or stigmatized as psychological aberrations by the medical establishment.

Chronic Pain and the Burden of Proof

The IOM reported that roughly 40 percent of the American population, or 100 million people, live with chronic pain, making it the leading cause of long-term disability. It costs the nation between $560 billion and $635 billion annually in health care and lost productivity. Despite these figures, the NIH devotes $400 million a year to studying chronic pain, and the four US medical schools offering a required course provide on average only 11 hours of instruction on pain.

A 2008 study found a 45 percent prevalence of chronic pain among women compared to 31 percent among men. In a 2014 survey of 2,400 patients by For Grace and National Pain Report, 90 percent of women felt the health care system discriminates against female patients. Medical professionals frequently default to labeling pain without clear organic lesions as psychogenic, hysterical, or psychosomatic. They accuse female patients of emotional overlay or drug seeking while believing men presenting with chronic pain.

Alexis developed debilitating hip and back pain at age eleven that doctors repeatedly failed to diagnose. They subjected her to psychological questionnaires and vaguely attributed her symptoms to female problems or stress.

Cynthia Toussaint spent thirteen years undiagnosed with complex regional pain syndrome, which affects 50,000 new cases annually. During this time, doctors suggested she take a truth serum, accused her of stage fright, or claimed she enjoyed the secondary gain from an attentive partner.

To navigate functional pain conditions without clear objective evidence, you must adopt careful protective behaviors:

• Strike a balance between conveying pain accurately without undermining authenticity through negative gender stereotypes.
• Tread softly to avoid antagonizing doctors since aggressive advocacy can backfire.
• Adjust appearance and dress to avoid looking too put together or healthy while seeking care.

Reproductive Suffering and Contested Diseases

Medicine and society have long treated women's reproductive discomforts as either an innate state of being sick or a normal part of female life. Ellen began experiencing debilitating pelvic pain and painful joints during menstruation at age eleven. School nurses suspected she was faking it and hospital emergency rooms merely administered morphine without attempting a diagnosis. Her mother had dismissed her own pain by saying periods are supposed to hurt.

Endometriosis occurs when tissue similar to the uterine lining grows outside the uterus, causing severe pain, inflammation, and scar tissue. It affects at least 6.3 million people in the United States. Because society and doctors teach that severe periods are normal, patients face an average delay of 10 to 12 years between symptom onset and an official surgical diagnosis. Sixty percent of endometriosis patients experience symptom onset before age twenty, and 61 percent of women and girls eventually diagnosed were initially told by health care providers that nothing was wrong.

In 2016, the NIH allocated a total of $10 million to endometriosis, amounting to $1.50 spent per patient. Heather Guidone noted that general physicians receive inadequate information, and nearly two-thirds of general practitioners report feeling uncomfortable diagnosing the condition.

To improve outcomes for endometriosis, you can pursue targeted clinical actions:

• Refer patients with suspected endometriosis directly to a specialist instead of relying on hormonal stopgaps.
• Utilize minimally invasive laparoscopic surgery for tissue excision instead of repeated open abdominal procedures.

Other multi-system conditions face similar dismissal. Chronic fatigue syndrome affects between 800,000 and 2.5 million Americans, with over 80 percent of sufferers being women. It creates an annual economic burden of 51 billion dollars in lost productivity and medical costs, yet early outbreaks like the 1955 Royal Free Hospital outbreak affecting nurses were rewritten by psychiatrists as mass hysteria.

Postural orthostatic tachycardia syndrome involves a failure of the autonomic nervous system to properly constrict blood vessels when standing. It leads to a heart rate increase of 30 beats per minute or greater than 120 beats per minute within ten minutes of standing up. About 80 percent of POTS patients are young or middle-aged women. Lauren Stiles saw about forty doctors over nine months and was misdiagnosed with fibromyalgia, CFS, IBS, and neuroendocrine cancer before discovering she had POTS caused by Sjögren's syndrome. Patients see an average of 7 doctors over 4 years and 2 months before receiving a proper POTS diagnosis.

Patient advocacy groups changed the landscape for vulvodynia. Formed in 1994 by five patients, the National Vulvodynia Association went to the NIH in 1996 to demand a conference. Phyllis Mate explained that the group later partnered with Medscape to create a continuing medical education tutorial. An initial number of 22,000 learners signed up, and the NIH has devoted $2 million annually to vulvodynia in recent years.

When addressing vulvar pain, you should rely on specific treatment strategies:

• Develop self-directed online medical tutorials and continuing education programs to directly educate physicians on unrepresented conditions.
• Refer patients to specialized vulvar pain clinics rather than relying on standard psychological or superficial advice.

4. Patient Advocacy and Systemic Reform

Overcoming gender bias in medicine requires patient advocacy, intersectional awareness, increased research funding, and a commitment by healthcare providers to listen.

Intersecting identities such as race, weight, and age shape the specific harmful stereotypes you encounter in the medical system. A thin woman is told she cannot be seriously ill because she looks so good, while a fat woman is told all her symptoms are due to her weight. Patients of color, particularly Black women, face compounding biases in medical settings where pain is systematically undertreated. Black patients are 22 percent less likely to get any pain medication compared to whites and 29 percent less likely to be treated with opioids.

Jackie, a Black woman with lupus and pericarditis, was repeatedly denied emergency room care and accused of being a drug seeker until she explicitly demanded proper care and mentioned she had a Ph.D.

Challenging Myths and Intersectional Stereotypes

The internet and online patient communities provide you with essential validation, self-diagnosis tools, and an antidote to medical gaslighting. Paula Kamen spent years searching for help for chronic headaches in the nineties feeling isolated, until publishing a book and hearing from others helped her realize she was not a freak.

A collaboration between outraged ovarian cancer survivors and a physician finally debunked the myth that the disease has no early symptoms. Dr. Barbara Goff and Cindy Melancon sent out 1,500 surveys and found that nearly 90 percent of women with early-stage ovarian cancer had symptoms prior to diagnosis. This work led to a 2000 study published in Cancer journal and a 2007 national consensus statement retiring the silent killer moniker.

Actionable Reforms and Empowered Patients

Systemic medical reforms and the simple act of listening to you are required to address gender bias and restore trust in healthcare. You must navigate an exhausting balancing act to prove the reality of your suffering without triggering negative gender stereotypes. Cynthia Toussaint spent thirteen years undiagnosed with complex regional pain syndrome, during which doctors suggested she take a truth serum or claimed she enjoyed secondary gain.

To combat these barriers and improve care, you should follow specific advocacy practices:

• Add the title Dr. to all personal medical paperwork and mention a professional academic degree to combat implicit racial and gender biases in emergency settings.
• Strike a balance between conveying pain accurately without undermining authenticity through negative gender stereotypes.
• Tread softly to avoid antagonizing doctors since aggressive advocacy can backfire.
• Adjust appearance and dress to avoid looking too put together or healthy while seeking care.
• Tell lawmakers to increase NIH funding for neglected conditions that disproportionately affect women.
• Share doctor stories in the media, on Facebook, and with friends, family, and colleagues.
• Listen to your body and trust that you know when something is wrong.
• Get a second opinion instead of second-guessing yourself.

Conclusion

You face a medical system built on a male baseline that ignores the complex reality of female biology and dismisses your physical pain as psychological.

The knowledge gap and the trust gap combine to create profound systemic barriers that delay diagnoses and endanger your health. You can navigate this flawed environment by recognizing how gender bias manifests in clinical settings.

1. Prepare extensively for every medical appointment by documenting your symptoms and their daily impacts.
2. Demand clear explanations and refuse to accept stress or anxiety as the root cause of physical ailments without thorough investigation.
3. Bring an advocate with you to clinical visits to ensure your concerns are taken seriously and recorded accurately in your chart.
4. Seek second opinions immediately when a provider dismisses your symptoms or refuses to run standard diagnostic tests.
5. Support systemic change by advocating for increased research funding for female-specific conditions and contested illnesses.

10 Key Ideas

1. Medical research has historically excluded women and relied on a male baseline, while doctors routinely dismiss female physical symptoms as psychological.
2. The modern dismissal of women's physical symptoms as emotional or imaginary traces back to the ancient Greek concept of the wandering womb and centuries of medical theories blaming female reproductive organs.
3. Medical standards built around male disease presentations cause life-threatening delays and misdiagnoses for women experiencing heart attacks and autoimmune disorders.
4. Women suffering from heart disease often face undertreatment because medical standards use men as the normative benchmark, forcing patients to prove they are as sick as men to receive equal care.
5. Autoimmune diseases represent a major epidemic predominantly affecting women that suffers from severe underfunding, diagnostic delays, and medical professionals frequently dismissing early symptoms as psychogenic or hysterical.
6. Medical professionals frequently default to labeling chronic pain without clear organic lesions as psychogenic, hysterical, or psychosomatic, while accusing female patients of emotional overlay or drug seeking.
7. Society and doctors have long taught that severe periods are normal, leaving patients to face an average delay of 10 to 12 years between symptom onset and an official surgical diagnosis for endometriosis.
8. Multi-system conditions like chronic fatigue syndrome and postural orthostatic tachycardia syndrome face systemic dismissal and are frequently stigmatized as psychological aberrations by the medical establishment.
9. Intersecting identities such as race, weight, and age shape the specific harmful stereotypes encountered in the medical system, with patients of color facing compounding biases where pain is systematically undertreated.
10. Overcoming gender bias in medicine requires patient advocacy, intersectional awareness, increased research funding, and a commitment by healthcare providers to listen.