The secret mind of Bertha Pappenheim

For most of the last seventy years, the dominant notion in medicine and in academia has been that the disease that afflicted Bertha Pappenheim did not exist, that Josef Breuer was treating a medical mirage. 

"Where have they gone, the hysterics of yesteryear," asked the psychologist and philosopher Jacques Lacan, referring to the characters in Studies in Hysteria. "Those marvelous women, the Anna Os, the Emmy von Ns?" 

The most current medical answer to Lacan's question seems to be: neurologists' offices, FND clinics, and please, please don't call them "hysterical."

***

Since ancient times, physicians have been able to describe the difference between seizures caused by epilepsy and seizures of the kind Lacan's "marvelous women" suffered. The former kind of seizures are caused by identifiable electrical storms in the brain; the latter kind have no immediately discernible somatic neuropathology. The ones without a clear bio logical correlate are sometimes called functional seizures, and sometimes psychogenic non- epileptic seizures, or PNES, and they present differently from epileptic events. 

Functional seizures tend to involve the thrusting of the pelvis (in the old scientific literature, you see illustrations of women forming themselves into hoops), they last longer than epileptic seizures do, and patients having these kind of seizures (unlike those with epilepsy) tend to weep. For decades, in hospitals and medical schools, physicians— both neurologists and psychiatrists— have behaved as if patients suffering from functional seizures are not actually sick. The following capsule narrative comes from a 2021 article in the journal Epilepsy and Behavioral Reports: 

A grand rounds speaker showed videos of patients with epilepsy and contrasted them with patients with functional seizures. One of the patients with functional seizures fell out of bed— and the room roared with laugh ter. A physician seated behind me muttered, "These patients will do any thing to sell their episodes." 

This kind of contempt has been around for centuries. 

In the eighteenth century, Alexander Pope wrote mockingly about women "who give th' hysteric, or poetic fit." While epilepsy is near universally understood as something that is observably happening to patients, functional seizures are too often thought of as something patients are doing. People with functional seizures are often told that nothing is "really" wrong with them. In a modern hospital, you can chart an epileptic seizure on an electroencephalogram, but a functional seizure will show a normal EEG. Interestingly, about 10 to 15 percent of patients with functional seizures also suffer from epilepsy.

Functional seizures are one of the many kinds of symptoms that are categorized under the umbrella term of FND. Modern medical researchers describe different categories of FND, including functional seizures, movement FND (sometimes "functional movement disorder," or FMD; for in stance, patients who suffer involuntary muscle contractions called dystonia, or who suffer tremors, limb weakness, or have trouble walking, swallowing, or speaking), and sensory FND (for instance, patients who go blind or lose sensation down one side of their body). There is a spectrum of related brain- mind- body disorders that are classified as functional— symptoms related to pain, fatigue, or intestinal distress— but many of those are, medically speaking, categorized separately from functional neurological symptoms; they're not symptoms neurologists treat. 

Whatever the name for these conditions, they remain a problem that crosses cultures and history, and the study of these conditions is as old as medicine itself. Aretaeus of Cappadocia, a Greek physician of the second century AD, described the condition the way I was taught to think of it as an undergraduate, when I was told that "hysteria" was a silly old myth, an imaginary disease of women, believed to be caused by a wandering womb: 

In the middle of the flanks of women lies the womb, a female viscous, closely resembling an animal; for it is moved of itself hither and thither in the flanks, also upwards in a direct line to below the cartilage of the thorax, and also obliquely to the right or to the left, either to the liver or the spleen; and it likewise is subject to prolapsus downwards, and, in a word, it is altogether erratic. It delights, also, in fragrant smells, and advances towards them; and it has an aversion to fetid smells and flees from them; and, on the whole the womb is like an animal within an animal. 

If the womb wandered into the eyes, so the classical theory went, the patient went blind. If it went to the legs, the legs spun out of control. Paralysis. Paresis. Unusual walking patterns. If the womb sidled up toward the mouth, it caused globus hystericus, the feeling of a lump in the throat, a common functional symptom that at its most severe can interfere with speaking and swallowing. 

The term "hysteria" comes from the Greek word hystera, meaning "uterus," and medical conversation around hysteria has for centuries been tied up with hatred of women and fear of their sex and their sexual de sires and their longing for independence. To this day, according to the higher estimates, as many as 70 percent of diagnosed FND patients are women. The condition in the Middle Ages was sometimes seen as di vine possession: St. Teresa of Ávila is the patron saint of hysterics. (In Studies, Freud and Breuer still refer to the symptoms of hysteria as "stigmata.") It was also seen as demonic possession. In 1602, Mary Glover, a fourteen- year- old girl in London, became "speechles and blynde." Her hand became paralyzed, then her arm, then the left side of her body. She suffered "fittes" in which "she was turned rounde as a whoop." She seemed "dumbe, blynde, and senseless," yet her hands performed strange pantomimes, like she was shooting a bow or an arrow.

Two flags that contemporary neurologists use for describing symp toms of FND are "incongruence" and "inconsistency"— that is, the symp toms don't correspond to any obvious patterns seen in other neurological conditions, and they don't always correspond to each other. A case of functional paralysis can move from one side of the face to the other. A patient who is unable to walk can break into a run. And yet over time, the patients— whether Mary Glover in Elizabethan England, or Bertha Pappenheim in Freud's Vienna, or patients in the Mayo Clinic's FND treatment center today— all seem to experience the same variants of in congruent and inconsistent problems. 

One of the first appearances of the term "hysteria" in English literature is spoken not by a woman but by King Lear, who upon being betrayed by his daughter Regan cries out: "Oh, how this mother swells up toward my heart! / Hysterica passio, down, thou climbing sorrow!" It's as if the King has a wandering womb, and he seeks to command it to stay down below. So many FND patients still describe it this same way that King Lear did: a force emerging from within the body, occupying their body, overpowering their body. 

Recent scholarship argues that the Greeks didn't really have a fully formed concept of "hysteria" as an illness— it only became so by Shakespeare's day, and by then the idea of a wandering womb was on its way out. "Their misfortune does not only proceed from a great in disposition of the body, for the mind is still more disordered," wrote the seventeenth- century physician Thomas Sydenham. Jean- Martin Charcot, the great nineteenth- century French neurologist, wanted to set a more specific, modern, physiological definition. Charcot, the "Napoleon of the neuroses," kept a pet monkey and put on strange, dramatic, public exhibitions of his female patients' conditions, performances that many historians have dismissed as histrionic and sadistic, but that many neurologists still regard as the foundational work of their discipline. In the early 1880s, Charcot characterized hysteria by its stages and symptoms and hypothesized that it was caused by dynamic lesions in the brain and nervous system. But he never found those dynamic lesions. 

Doctors are now looking for the kinds of neurological, biological correlates that Charcot was looking for— and among the leaders in this neuroscientific investigation is Dr. David L. Perez, of Harvard and Massachusetts General Hospital. 

Perez, today in his forties, is qualified as both a neurologist and psychiatrist. He started his FND clinic at Mass General in 2014, under the auspices of the neurology and psychiatry departments, but soon his clinic was upgraded to its own FND unit. Perez has many more patients referred to him than he can comfortably manage (the waits for an appointment can be long), and his research is generously underwritten by the US government. He is bespectacled and bearded, and pink- skinned and youthful, and has all the drive, energy, and intensity he must have had as a straight- A undergraduate. 

"What kind of doctor am I?" he says. "I'm a brain doctor." 

He is a man on a mission: through his work on FND, he seeks to "bridge the great divide" between neurology and psychiatry, to link, in Oliver Sacks's words, "the universe of human meaning and of natural science." Patients who come to Perez's clinic generally arrive via referrals from neurologists: they've already been diagnosed with FND (or are suspected by other neurologists of having the condition). At their first meeting, Perez engages each patient in a ninety- minute interview, and for each patient, he aims to confirm the diagnosis and to work collaboratively with the patient to develop a treatment plan. 

"The patient-centered treatment plan is essentially developed through the neuro- psychiatric perspective," he told me. 

All kinds of people develop FND, busy professionals, the chronically ill, the young, the old, men and women, and each of Dr. Perez's patients requires a specific combination of treatments— some need talk therapy, some need speech therapy, some need physical therapy, some need pharmaceuticals for their concurrent neurological and psychiatric conditions. And each individualized program has a particular emphasis and set of goals. The first step is validation and empathic listening— Perez paying careful attention to the patient's story— and the second step is the patient's acceptance of the diagnosis and plan. 

"It matters," Perez told me, "if the patient has never seen a psychiatrist and has been suffering subthreshold anxiety for decades, but is working 75 hours a week and is a lawyer and also has three children at home; versus a patient who has chronic suicidality, poor impulse control, active emotion dysregulation, and has been hospitalized over ten to fifteen times with a range of active mood, anxiety, and trauma- related symptoms." Two patients with nearly identical disabilities can, depending on their circumstances and experiences, have widely divergent needs. "Both of those kinds of individuals can have FND, and the symptoms can be the same, but the treatment plan has to be different." 

***

Kyla Kenney is in her middle forties and married, a mother of two, dark- haired, with a high forehead and strong jaw and intense brown eyes, a woman who has lived a life of trauma and psychological distress. She's a professional singer, a mezzo- soprano with a melancholic range and resonance, and she sings often at funerals, weddings, and masses in the Providence, Rhode Island, metropolitan area. 

"I've been sick most of my life, with no answers," Kenney told me. She told her story to me with ease and humor, comfortably navigating the worst of it with disarming charm. Her childhood, as she recalls, was full of anxiety and fear. There was chronic illness in her family. Her first memory of terror is medical and nightmarish: doctors pushing tubes into her, and Kyla screaming out for her father. 

In high school, a music teacher groomed her in a sexually predatory way, from the time she was fourteen until adulthood. ("My baby's legal!" he sang out on her eighteenth birthday.) She was first prescribed antianxiety medication and antidepressants when she was nineteen, and all through early adulthood she was plagued by mysterious complaints. For Kyla, her physical symptoms and her anxiety and depression run together in a vicious circle, feeding off one another. Her FND symptoms make her anxious and depressed, her anxiety and depression intensify her focus on her symptoms, and the symptoms are aggravated. She was a flautist in college, despite the tremors in her hands. "Playing the flute when you've got the shakes is not that easy," she told me. When she'd make mistakes, she'd laugh them off. The loss of control of her hands was anxiety provoking, and the anxiety led to difficulty breathing. She was given a host of diagnoses— from hypoglycemia to asthma— and referred to rheumatologists and endocrinologists, none of whom could resolve her persistent tremors and attacks. 

"I wanted to die," Kenney told me frankly. "My prayer every night was please don't let me wake up." She remembers being twenty years old, lying on the floor, with her mother holding her, and Kyla crying out to God, "Why won't he take me now? I don't know why he makes me wake up. Why won't he just take me?" 

"No one believed I was sick," she told me. "I wanted the pain to stop. I wanted the pain to die." 

She was prescribed Ativan: one milligram in the morning, one milligram at noon, and one milligram at night, and then more as needed. "I followed doctors' instructions to a T," she told me. "I tried several times to stop the medication, but kept going back. My doctors continued prescribing it with no conversation." Over a twenty- five- year period, she became dependent on the drug. Kyla is exactly the kind of patient with whom physicians become impatient, and she knows it, and she told me stories of the way she was hustled in and out of their offices. 

"I can't take your vitals," she remembers one doctor telling her. "You need to stop crying." 

"Your tests came back fine," another said, "but because of your symptoms we will treat you." 

"I can't help you," another doctor said, "you need to see a psychiatrist." 

Once, with her heart racing above 150 beats per minute, she was dis missed from a physician's office and told to drive home on her own. 

Through it all, she remained active, married, raising her kids, and working as a pianist, singer, and music teacher. The year 2016 was difficult for her. Several friends died. There was a flood in her house, and she lost her kitchen. She woke up on the morning of October 8, 2016, in pure, dark terror. 

The room was spinning. She had no sense of balance. Her heart was racing, pounding like it wanted to escape her chest. She had what she describes as "internal shaking," like everything inside her was trembling, and the right side of her body was in a tremor. She had pain in her head— "I didn't even know that kind of migraine existed"— a pain that affected her entire face. She had tunnel vision. She had to get to work, to the church, to sing at a wedding, but she was incapacitated. 

"The shaking became unreal," she told me, "like someone was just literally shaking my insides"— her description reminds me of classical and Shakespearean language about hysteria, an animal within the animal, a force rising up from within. 

She drove to the wedding, with her eyes struggling to focus on the road. She sang, though even as she was singing, she could hear her heart pound. She had a terrible pain in her face, pressure all around her eyes and nose. Everyone around her dismissed her physical symptoms, she said, no one believed she was suffering anything more than her "typical anxiety." 

Her primary care provider upped her anxiety and depression medications, to no effect. She saw a dentist, an eye doctor. One prescribed a series of antibiotics, on the theory that she had a sinus infection. Another prescribed guaifenesin, an expectorant usually not to be taken for more than nine days— he kept her on it for five months. At one point, a year into her suffering, a psychiatrist suggested she undergo shock therapy. 

She decided— through much research, she told me, and with a strength she credits to her faith in God— that her problem was neurological, and she began calling every neurology department at every hospital in the Boston area, and that's how she ended up at Massachusetts General, in the office of Dr. Haatem Reda, a young neurologist, an intellectually curious and sympathetic man. It was December 2018. 

She held out her right hand to Dr. Reda, and he examined her tremor. He asked her to lift her left hand beside her right, and to gently and systematically touch her left thumb to each finger of her left— her good— hand. As she pressed together the digits of her left hand, the tremor of her right hand vanished. In the language of neurology, the tremor showed variability and distractibility. 

"What the heck, why is it stopping?" she asked. 

"Don't be upset," Dr. Reda told her. 

"No one believes me," Kenney complained. 

"I believe you," he said. "There's a functional problem." The tremor's distractibility demonstrated that the nervous system of her right hand was intact. This was a rule- in diagnosis, a demonstration of the cause of her tremor. "This is a software issue, not a hardware issue," said Dr. Reda. 

Unlike every physician she had seen up to that point, he diagnosed her tremor positively, not negatively, and not with guesswork, but with a clear and convincing test— he didn't tell her what she didn't have, he didn't tell her that her problem was psychological; instead he embarked on forging a story with her, forming a narrative with healing power. 

"We have to retrain your brain." He told her to make an appointment with Dr. David Perez at the FND Unit. 

Unfortunately, Perez had no openings until May. In the meantime, Dr. Reda directed Kyla to the book used in Perez's clinic, Overcoming Functional Neurological Symptoms: A Five Areas Approach. Reda recommended she take up an engrossing activity to distract her brain from its obsessions— Kyla decided to learn Italian. "Try to change the direction of your thoughts," was his advice, and then in May, finally, she had her first appointment at the FND clinic. 

"I've never ever met a doctor like Dr. Perez," Kyla told me. 

"Tell me," he said, as Kyla remembers it. "What's going on?" 

At first, she couldn't answer. She was crying. She was shaking. Instead of describing her symptoms for Dr. Perez, she began to list all the things she once could do that she could do no longer. 

Perez confirmed her diagnosis, and as he did so he helped her con struct a narrative of her own illness. "He explained how the brain worked, the amygdala, the insula, all the anatomy of my brain," Kenney told me. "I was crying hysterically pretty much the whole time." But the anatomical descriptions helped her. "If I understood, if I was able to visualize what's going on, I was more able to work with the problem." She began to describe her fears. "One of the biggest symptoms I had was sheer fear," she told me. When she complained to Perez about the way her symptoms assailed her, he said, in Kenney's words, "Of course that's going to happen. Your nervous system is revved up, so you're not getting the right signals. It's not functioning properly, but we're going to work with you." 

"Never have I had any doctor that compassionate," Kenney told me. "All you need is someone to say, 'I get it,'" Kenney told me. "'It must be scary,' 'you must feel alone,' 'I've got you,' 'we'll figure this out,' 'there's hope.'" 

They discussed a treatment plan together: cognitive behavioral therapy, occupational therapy, and simple, calm diaphragmatic breathing. "I had tried to meditate before," Kenney told me. "But I came to the conclusion that it was something my brain just couldn't do." Perez had her begin very simply, just one minute at a time. Over the weeks, months, and years, she developed a meditation practice, one that helps her enormously. "It started calming me down enough in order to focus. And it taught me that it's okay to take ten minutes of the day to focus on myself." 

She was assigned to Julie MacLean for an eleven- week course of occupational therapy. "What does your day look like?" MacLean asked Kenney on their first meeting. They began to work on pragmatics. Making sure she got out of bed, that she showered by noon. That she ate. They built Kenney a schedule. Instead of dwelling on negative thoughts, Kenney could practice Italian. She could try to work out a new piece on the piano. She could bake something— Kenney likes to bake. 

"When I have a physical symptom," Kenney told me, "that is what my brain is doing: thinking about that specific physical symptom. Thinking about how bad it is makes it worse. When I was doing things, at least, my focus was on some other activity." 

MacLean worked to help Kenney find concrete ways to distract herself out of the grips of anxious, ruminative thought patterns. At one point, she gave her patient a bunch of different candies and asked her to pick out the one that tasted worst to her— Super Sour Warheads, it turned out— and now Kenney carries them with her, and when she begins to find herself in obsessively bleak thoughts, she puts one in her mouth, and it shocks her out of her old thought patterns. Simultaneously, she was working with Ellen Godena, a social worker expert in treating FND with cognitive behavioral therapy. She met Dr. Perez on May 15 and started working with Godena on May 17. 

"I started telling her all about how horrible my week was, and all the awful things I'd experienced, and she just cut me off. She said, 'Okay, rough week. What are we going to do about it?'" 

One day, Kenney came in sobbing. 

"I couldn't stop crying because things were so terrible, and she just looked at me. No therapist has ever done this with me before. She just looked at me, and said, 'I can't help you until you stop and realize what we need to do here.'" 

Godena worked with Kenney on concrete ways of coping with her symptoms and her unhappiness. Together, they filled out a form to better understand Kenney's vomiting and nausea. Kenney shared this with me. Under PHYSICAL SYMPTOMS, she wrote: shaking, hands and feet, feeling hot and cold, feeling like I'm blacking out. Under EMOTIONS, Kenney wrote: fear, anger/frustration, lonely, tired, defeated. Under AUTO MATIC THOUGHTS, she wrote life ends and there's no stopping that, and here we go again. Under COGNITIVE DISTORTIONS, Kenney wrote: Magnifications. The chart helped her see how her thoughts intensified her symptoms. 

Still, sitting at a funeral, getting ready to sing, Kenney can find herself in old bad habits— gripped by depressed, anxious ruminations, imagining someone she loves in the coffin, imagining the end of everything she loves. But before her tremors begin, before she becomes incapacitated, she'll take a Super Sour Warhead, and she'll try to find a new set of thoughts. 

"My brain is like a big field," Kenney told me, "and all my negative thoughts have been walking down this one area. So there's a beautiful path to all the negativity, because my brain knows that path so well." The path is marked as if with billboards. "WE'RE GOING TO DIE, or THIS WON'T WORK OUT WELL. That path is worn and clear. Now, I'm trying to create a new path in a different part of my brain. A path that's saying, 'everything is OK,' or 'life doesn't have to be this way.'" 

The work is not easy. I spoke with Kenney in the summer of 2022, four years after she had begun treatment at Mass General. 

"It's only in the last six months that I feel like I've really come out of it," she told me. "I'll hear myself laughing and it'll shock me— I can't believe it! Is that me, laughing? Holy crap! My family makes fun of me because I'm super sensitive. Before when they made fun, I'd get really upset. I'd say, 'You don't understand.' I would turn it into a big emotional argument. But now I sit there and laugh." 

This, for Kenney, is the opposite of FND: laughing together with the people who love her. Her symptoms afflict her less violently, her life is happier, and Kenney is the protagonist of a story in which she has taken control. 

"It's a bit peculiar," Dr. Perez told me, "that there are two medical specialties for the same organ." 

The organ he has in mind is the brain, and the specialties are psychiatry and neurology. His treatment and research into FND operates in both specialties simultaneously, and he sees the mind, brain, and body holistically (the phrase he finds himself using, he told me, is "brain-mind-body"). 

"We think of functional neurological disorder as a network- based disturbance," Perez explained. 

Contemporary neuropsychiatry conceives of the brain as operating through several interrelated networks, different sets of different parts of the brain working together to bring about different cognitive tasks. In the brain there is a motor planning network, and a network to figure out what's important in the world (called the "salience network"), and a network for our internal mind- wondering and self- reflections (called the "default mode network"). FND patients don't suffer any overt structural damage to any particular brain part— neither to the amygdala, the little node deep in the brain central to much of our threat and salience processing, nor to the right temporoparietal junction, which is associated with the reorienting of attention and performing calculations that contribute to the sense of self agency (that when a person moves, that person perceives themselves as the author of those movements). But in images of FND patients' brains of the kind produced in Perez's lab, researchers can observe irregularities that suggest unusual network connectivity. 

For Perez, FND is "a multi- network brain disorder." Scans of his patients show abnormalities both "within a given network and across different networks." The working hypothesis is that in a patient like Kyla, threat/emotional processing, other bodily information processing, and motor control get somehow scrambled, causing breakdowns in movement and in perception. Altered feedback cycles and feed- forward cycles within the brain— information reinforcing itself in unhealthy patterns— can cause problems like Kyla's limb shaking. The goal in treatment is to retrain the patient's brain so it can relearn the proper pathways. In this way, FND doctors are reconceiving thought, emotion, and even human agency— the ability of a person's mind to control their own body— as biological, physiological, and psychological. As Perez explained it to me: the brain shapes our life experiences, and our life experiences shape our brains. Bridging the gap between psychiatry and neurology means challenging our basic preconceptions about mind, brain, and body, and about health and disease. 

"I think what's most exciting about FND," says Dr. Perez, "is that because it sits right in between neurology and psychiatry it very clearly challenges these artificial distinctions between physical health and mental health that are pervasive in society and are very problematic. Ultimately mental health is physical health. I see patients who can't walk, who can't speak, who drag a leg, who have convulsions. Yes, there are cognitive, affective, and perceptual disturbances in this population, and these disturbances are important, but my patients' symptoms are every bit as real as patients with stroke, Parkinson's disease, and multiple sclerosis. Every bit as real, and every bit as brain- based." 

***

Doubters may still want to call FND a "waste- basket" diagnosis, but that's inaccurate. There's variation within Perez's patients' suffering (seizures, tremors, gait disorders), and his patients struggle with a variety of comorbidities (anxiety, disease, depression, and trauma), but similar variations can occur in other neuropsychiatric diagnoses, like autism or migraine. FND is a rule- in diagnosis. A physician can see if a tremor is distractable, if a patient who can't walk can run, and— with a test called "Hoover's sign"— if an apparently limp leg can apply force. FND is demonstrable within a clinical setting. Contemporary physicians who doubt the actuality of the condition are expressing more clearly than anything else their prejudices. They are stuck in old ideas, dualistic notions, the belief that the mind is separate from the body, that "hysteria doesn't exist," or that "conversion disorder" is just a psychosomatic expression of repressed desire. 

In the interpretations and reinterpretations of Bertha Pappenheim's ill ness, we see a compendium of such prejudices, a 150- year history of very smart people unwilling to accept a basic fact: that mind, brain, and body are of a complicated piece, and that, given such complexity, there will be breakdowns. Our struggle to understand Pappenheim is our struggle to understand ourselves.

The Secret Mind of Bertha Pappenheim: The Woman Who Invented Freud's Talking Cure by Gabriel Brownstein (£28, PublicAffairs) is available now