BOSTON — Even beforehand — before the compulsive writing and the bipolar diagnosis, before the niche medical practice and the best-selling book — Dr. Alice Flaherty stuck out. She had grown up beside a duckweed-filled pond in rural New Jersey, and by the time she was a young adult, she’d become a neuroscientist in a family of engineers, a theorist among doers.
When she came home during breaks at Harvard, her father would rib her. “He’d say, ‘Yo, you talk big about pure science now, but you’re going to end up an engineer just like the rest of us,’” she recalled. “And when I went to med school, he was like, ‘See? See?’ And it’s totally true. It’s like tinkering. You tinker with the patients. It’s so fun. I love fixing broken machines.”
Her neurology work at Massachusetts General Hospital involves plenty of gadgetry — she heads up the deep brain stimulation unit, and sometimes uses electroconvulsive therapy to help patients with depression or mania — but these days, that’s not the kind of tinkering that’s at the front of her mind.
Instead, she has been toying with the boundaries of illness itself. She likes seeing patients other doctors have given up on. Many have faced questions about whether they’re really as sick as they say. For all of them, getting the proper treatment — pills or infusions or electrical currents — depends on a kind of collaboration with Flaherty, a workshop in which motivations are re-examined, stories reshaped, turns of phrase redefined.
“These poor patients are typically seen as just not wanting to get better, and I got interested in that whole thing, like if you want to get better then you’re sick, if you don’t want to get better, then it’s a vice,” she said. “What was it about us — the caregivers, family members, and doctors — what was it that made us attribute willfulness to people who were obviously miserable?”
Her schedule is stacked with examples.
“When we had a complicated patient … and we needed a neurologist who understood how we think, Alice would be our go-to consultant. She’s a great bridge.”
Dr. Jerrold Rosenbaum, Massachusetts General Hospital’s psychiatrist-in-chief
There was the Parkinson’s patient who was able to move when playing with grandchildren but not when asked to take out the trash. “The spouse is like, ‘Bullshit, you’re just not trying,’ and that’s totally true. … They lack dopamine, which is very important for motivation,” Flaherty said.
There was the medical student who’d become catatonic when faced with an exam, and was accused of wanting, at some level, to jettison his career.
There was the woman who came in with an anxiety-related tremor but insisted that, no, these shakes weren’t psychological. “You have to convince them, yes, you really are sick, I understand that, or they’ll never trust you,” Flaherty said. “And they are really sick, they’re disabled, totally.” Then, with a careful tweaking of language, she was able to prescribe the Valium that the patient had been refusing from other doctors, and the tremor faded.
To some, she might sound like a shrink tucked away inside a movement disorder clinic, and that isn’t entirely wrong. Historically, psychiatrists and neurologists often kept to their own floors, as if the feeling-thinking brain and the physical brain were two different organs. Flaherty was merging both long before it became a trend, explained Dr. Jerrold Rosenbaum, Mass. General’s psychiatrist-in-chief.
“When we had a complicated patient … and we needed a neurologist who understood how we think, Alice would be our go-to consultant. She’s a great bridge,” he said. “She’s more sophisticated with the use of our drugs than many of us are.”
But that doesn’t quite cover Flaherty’s unique role in the biome of Boston medicine. When the novelist William Styron was weighed down by depression, movement issues, and delusions — he thought that his writing hand had gone dead and his head was shrinking to the size of a pin — he sought out Flaherty.
She makes a habit of befriending her patients and counseling her friends. She sometimes worries her colleagues might see her as too empathetic, too credulous, too boundary-breaking. Then again, she knows from her own experience with mental illness that the opposite — an excess of formality, stiffness, distrust — can be worse.
Flaherty had heard about Stephanie Zaia before they’d ever met. Clinicians talk, and a case like Zaia’s made them talk more than usual. Her symptoms seemed so strange, and so complicated, that they were picked apart during grand rounds, at medical meetings, and in hospital staff rooms. What struck Flaherty was that her colleagues seemed to suggest that Zaia had invented her own bodily inferno.
The trouble began when Zaia was a 14-year-old in Medfield, Mass. She was a competitive swimmer, obsessed enough to make her parents drive her to practices at 5:30 a.m. She swam every weekday, spent her weekends at meets, but all of a sudden, at the end of a race in May 2003, her body went limp and she couldn’t get out of the pool.
Then she began having trouble moving elsewhere, too. Walking became hard. Sometimes she struggled to breathe. She stopped being able to digest, vomiting up almost everything she ate. She began to shed weight that she couldn’t afford to lose.
Her parents brought her to neurologists and psychiatrists and specialists of the gut, bouncing from practice to practice, from Massachusetts all the way to Maryland. They kept telling Zaia the same thing again and again: “They’d say, ‘Oh, it’s all in your head,” she said.
At first, Zaia and her parents went along with the idea. They probed her past for possible instances of trauma, but could find nothing besides garden-variety middle-school meanness from other kids, which hadn’t gone on for very long anyway. And the suggestions of depression and anorexia didn’t seem to add up with her mounting difficulty to move. “‘You’re trying not to walk because you hate to swim.’ That’s what they said,” Zaia recalled. “They were just like, ‘It’s a conversion disorder: You’re converting your not wanting to do this into physical symptoms.’”
No matter what she said, she couldn’t convince them that she wanted nothing more than to be able to swim again. Nor could she convince them, when they claimed her muscle spasms were an embodiment of her jealousy toward her siblings, that she did not feel jealous.
Her medical file began to take on an authority of its own, as if the hypothesis that her illness was psychological had, through repetition, become a fact. Doctors couldn’t unearth some underlying cause for the muscle tightness, and could find no relation to the mutiny in her gut. But there, in the pages of her record, was an explanation capable of tying these disparate threads together. The symptoms didn’t make sense, they thought, because she was, in some subconscious stratum, making them up.
It was only after years, in 2006, that Zaia got a diagnosis of primary dystonia — a condition characterized by involuntary muscle contractions — and learned just how common this kind of accusation is. “I’ve met lots of patients who spend five years being misdiagnosed,” said Pamela Sloate, a patient activist and board member of the Dystonia Medical Research Foundation. “They don’t have the skills to diagnose dystonia, so they tell the patient it’s imagined, or that it’s caused by depression.”
That can have a profound effect. As Zaia put it, “When somebody tells you that enough times, you start to believe it.”
Self-blame is something that Flaherty is familiar with. She felt it acutely in 1998, when her twin boys died immediately after birth. They were premature, so tiny their hands could hardly fit around her finger. To bury their ashes, she secretly took a folding shovel into Mount Auburn Cemetery to look for a spot where no one would see her digging. She chose a patch of shrubbery beside a pond grown green with duckweed: It reminded her of the scummy pool back home.
Ten days after their death, her sadness morphed into an overwhelming desire to write. She wrote on everything: paper, napkins, computers, her own skin. She’d written plenty before — waking up early to write a neurology handbook while she was a resident — but now it was uncontrollable, and the style had changed. “Looking at this stuff, I’m like, ‘Oh my, God, this is like teen diary garbage,’” she said.
She bounced between mania and depression, becoming obsessed with the idea that she’d been a bad mother, that it was all her fault. She knew, on the one hand, that she was sick — she’d been newly diagnosed with bipolar disorder, and was taking a pharmacopeia of pills — but also felt that her illness wasn’t real, that she was just fishing for attention.
“The most painful part of it was I thought I was making it up,” she said. “I thought I was this total loser that was making up something that had me in the hospital for nine days.”
Sometimes, she couldn’t physically lift her hand to her mouth to take her meds. She’d rock her arm back and forth, coaxing herself, like a volleyball player preparing to make a serve.
“The most painful part of it was I thought I was making it up. I thought I was this total loser that was making up something that had me in the hospital for nine days.”
Dr. Alice Flaherty
She was consumed by the doublethink of depression. She knew her symptoms weren’t fictional, but what if they were all in her head? She knew her obstetrician didn’t hate her, but what if he did? She wanted him to say that something terrible had happened. She wanted him to echo her own distress. She wanted him to cry.
Flaherty suspected the episode would end her medical career. Her colleagues told her not to tell anyone, but she was manic, and told everyone. She wrote about her illness in her book “The Midnight Disease,” and her story wound up in the glossy pages of magazines. Patients could idly flip through her postpartum mania while waiting for their appointments.
“The people who are most afraid of mental illness are doctors,” Flaherty said. “It turned out my patients were fine with it. … One guy said, ‘Yeah, that manic depressive thing you have, my internist has that. … Every six months or so, they have to lock him up, because he runs down the middle of the street naked. But I stay with him because he’s a really good doctor when he’s not crazy.’”
Even as her mood stabilizers did their job, the impressions she had during illness stayed vivid: her conviction that she’d created her own symptoms, her over-analysis of her obstetrician’s veneer.
“She knows from experience how imperious doctors can be. … When you’re really in a lot of pain, or not sleeping, or whatever, in an acute phase, you feel like a supplicant,” said journalist and author Pagan Kennedy. The two had met in a local writers’ group, and when Kennedy experienced a mysterious bout of insomnia and acute pain, Flaherty counseled her not to rush into surgery, and checked in with her every day, listening. Kennedy is now making a podcast about Flaherty’s treatment of Styron.
The same skills that cement a friendship, Flaherty has found, are useful clinical tools. But bedside manner hasn’t come naturally to her. “I didn’t have any body language,” she said. “I was brought up in this WASP community with 500 guns in the basement. … We communicated by raising our eyebrows one teeny little tiny bit.”
So she sometimes glances at a mirror hidden in among the drawings and plants of her office, checking her own features, making sure she echoes the patient’s devastation or anger or joy. Above all — whether the symptoms are psychological, physical, or some combination of the two — she wants them to feel heard. By now, after years of practice, she says that most of the emotions behind her gestures are real.
When Flaherty finally met her, in the fall of 2012, Zaia had been sick for almost 10 years. She needed a wheelchair, and her muscles were so tight she was not able to sit up. Every so often, she’d get dystonic storms: Her back would arch so she couldn’t breathe, her neck yanked backwards, her arms pinned behind her, her legs pulled as far as they would go. “I would turn into a literal pretzel,” she said.
The relationship began as pure coincidence. Zaia was an inpatient at Mass. General, home sick from the University of Illinois, Urbana-Champaign, and Flaherty happened to be the neurologist on duty. It wasn’t just the medical crisis that was worrying Zaia’s parents. Her primary neurologist, who had been treating Zaia’s dystonia for years, had put a letter in the medical record that signaled a change of tune.
“She was basically saying she had never believed Steph in the first place,” said her mother, Diane. “She basically treated Stephanie for dystonia for … years, and then said she did not have dystonia, and said that she was a wacko.”
And so Flaherty agreed to be Zaia’s neurologist. Already, to the family, that was a minor miracle. “No one wanted to touch me,” said Zaia.
During those years, Zaia had thought she might end up bed-bound in a nursing home. Now, she’s up every morning at 5:15 to catch the 7:16 train from Dedham into South Station. Her work, at Easter Seals Massachusetts, a nonprofit that provides disability services, is only a block away. She also helps run her own organization, PATH-WAY, which puts together social gatherings accessible to everyone and anyone, no matter their physical ability. To find members, she went to support groups for illnesses she didn’t have. At the end of the day, she catches the 4:43 back to Dedham.
On a recent afternoon in her office, Flaherty pulled up Zaia’s electronic file and began clicking through the details. The more she looked, the less she seemed to believe she’d contributed all that much to Zaia’s recovery. Sure, she’d changed some medications during Zaia’s inpatient stay. And it was true that she’d hashed it out with colleagues in the staff room, saying that, no, she didn’t think the intractable illness was just a lack of effort on Zaia’s part. But the bulk of the life-changing treatment had happened elsewhere: A deep-brain stimulator was surgically implanted at Lahey Clinic. A baclofen pump — which sends a steady stream of muscle relaxant into her cerebrospinal fluid — was proposed by Dr. Zachary Bohart at Tufts Medical Center.
Even so, the Zaia family gives Flaherty equal credit. Her work on the case was as much about language as it was about medicine. What other clinicians decided was anorexia, Flaherty called gastroparesis. What others had seen as psychogenic, Flaherty saw as being of unknown cause. Their exchanges flowed in and out of medicalese, Flaherty choosing technical terms that felt most useful, looking for words that described symptoms without attributing fault.
“She believed me,” said Zaia. “She treated me like a human.”
It’s an idea that’s central to Flaherty’s next book. “Doctors who call it the art of medicine are thinking about it as a monologue,” she said. To her, it’s more like interactive dinner theater, with the actors falling onto the audience members’ laps.
Yet even after writing hundreds and hundreds and hundreds of pages on the subject, and discussing the concept with her residents over and over, Flaherty still finds herself slipping up, talking about her patient’s illness as if being sick had been their idea from the start.
Partially, she thinks it has to do with a doctor’s own sense of competence, the affront of seeing that your expertly devised treatment isn’t working. But, borrowing from evolutionary psychology, she also explains this tendency as an adaptation gone overboard, like a good joke taken too far. In most social interactions, attributing motives to others is essential. We can tell if someone wants a leisurely chat or needs to hurry off. We can divine whether someone is hoping for friendship, or something more. But we can over-interpret, too. An email left unanswered makes us wonder if that person is harboring some unexpressed beef. An unexplained illness that gets in the way of work makes us wonder if it’s just an excuse.
She clicked Zaia’s file shut. On every other surface, it seemed, were artifacts from other cases.
To her left, a Ziploc bulged with what looked like miniature coconuts, the fibrous skins creasing the plastic. Flaherty had collected them while visiting a patient who now lives in Cambodia, just down the road from Angkor Wat. (“Best house call ever!”)
The ivy that snaked across the bookshelf and over the desk had started out as a miserable thing, cut back by a patient and given to Flaherty as both a prop and a gift: Its puny sprouts were meant to symbolize how ravaged the patient felt.
The tendrils that clung to the opposite wall had been a gift in the opposite direction. It was a rosary vine, with delicate leaves that looked like tiny lily pads. “I got that from my psychiatrist,” Flaherty said. “All we talk about today is plants, because I’m so sane.”
Unspoilt, and knowing not better, I’d have naught better, to do-#GumpIsUnsplainable
It looks like people need to be reminded that this Doctor is an outlier. She takes the most extreme cases, and due to her ability to communicate and show empathy, she is helping her patients. The Medical Community has chosen to interpret many much simpler cases, as if the patient is mentally disturbed. This adds a layer of guilt, self blame and doubt on to the patients already frustrating symptoms. Psychologists in order to expand their market, and expand the Pharma prescribing opportunities have jumped in and helped obscure this problem. Nowhere in the discussion is there any research, studies or facts, about the frequency of these “Somataform” Disorders.”
This Doctors patients had some serious and complicated issues, yet people, with more obvious conditions are continuously labeled, misdiagnosed, stigmatized and have their conditions worsen, when these labels are applied. Patients not only have to deal with the pain, trauma, financial decline, and stigma associated with an injury, or condition, they have to deal with the self doubt, shame, and frustration, imposed by misguided Physicians and Psychologists. This Mind Body connection as been used to explain away the failures of the Medical Industry. Instead of looking at numbers and statistics, or Evidence Based Facts, it is easier to just claim the patient is mentally ill. Of course the denial, stonewalling and general obstruction that goes along with getting a clear diagnosis, is never measured, by design. It is as if they are describing a supernatural phenomenon, when a patient fails to improve, or their conditions worsens, after they are told it is all in your head, then they claim they are seeking a “payoff.” This narrative is more prevalent than asking why did that “treatment” fail, or looking at the long term consequences. It is a lot more profitable to string these patients along, prescribe unnecessary or even painful treatments, while obscuring the facts.
The misapplication of this “Mind Body” connection can be very profitable, and help avoid accountability. Instead of looking at facts, science or data, they can choose to discredit the patient and undermine their credibility. This has been applied across the board for many decades and has only gotten worse. If an insurance company did not want to pay a claim, they could attribute a “Motive” to filing it in the first place. In the case of the big insurers, a little doubt can mean billions. The VA attributed the symptoms from Gulf War Illness, to a “Personalty Disorder.” Psychiatrists were more than happy to expand their role, in treating toxic chemical exposure. They did the same with defense workers who came down with cancers and immune disorder from working with dangerous substances. The idea was to postpone, deny, and avoid paying a claim. They attack a persons character and integrity in order to increase profitability, or avoid accountability. Psychologists, and Psychiatrists were more than happy to re-frame the narrative to expand their billable hours, prestige, or help market this convenient nonsense. They have an Industry based on marketing self help books, “innovative” mind body approaches to health, which by the way are not improving anyone’s health and well being.
We never see any basic research being done regarding why the U.S. has the most expensive medicine in the developed world the worst healthcare outcomes. No Study has ever been done on the impact of these “All in Your Head” Diagnosis, or the number of times they are wrong, and lead to more medical costs and procedures. No research is ever done on the number of suicides, ruined relationships, lost opportunities, caused by these over applied diagnosis. It has been proven that these “All in Your Head” diagnosis are more often applied to blue collar workers, women and minorities. It was really easy for them to define the distress, pain, and frustration caused by a misdiagnosed physical illness, and dismissive and downright cold Physicians, as a “Mental Heath Issue.” It is more profitable to undermine and attack the patient than provide adequate appropriate healthcare. Pharma found an entire new market, even though there is no evidence to prove that any of the drugs they are marketing are even effective for these illnesses. Too bad these discussions are not filed with more facts, they are taken out of context, using the most extreme cases. Since they had to find ways to profit from the dysfunctional medical system, where Lobbyists determine what kind of data can be collected, instead of scientists, a nice controlled and distorted narrative has been developed. I doubt that any Physicians reading this will challenge any preconceived ideas they had on this topic, nor do they have the ability to change the culture of denial and obfuscation. In the meantime every injured person or difficult patient can be re-framed as a Headcase. Doctors can have a good laugh at their patients expense, especially low income, minority or female ones. The don’t have to learn from mistakes or even acknowledge them, that would be bad for business. Blue Collar workers are only injured because they don’t like their jobs, and minority children are not stressed due to their environments, they just have the wrong “mindset.”
I graduated from the Medical School at the University of Cologne, Germany (Universität zu Köln) in 1965 where all psychiatrists were fully trained neurologists. Schizophrenia and bipolar disease were described as brain diseases of yet unknown etiology with a strong genetic risk factor. In contrast, Psychiatry in the USA was strongly influenced if not dominated by Freudian psychoanalysis, now largely rejected. The patients’ medical stories above give testament to the doctors psychoanalytical perceptions, language and biases.
I admire her work, but want to say that there IS such a thing as psychogenic illness, or somatization. The mind and body connections are very complicated. There is also the fact that people with psychogenic illnesses sometimes get sick with other types of illness. Untangling it all can be very difficult. Some patients with somatization are not open to hearing about somatization, and may refuse treatments or information that could help them. They can also be tragically vulnerable to snake oil. (Dr. Flaherty is obviously not offering snake oil; I’m just pointing out some other wrinkles to this subject.)
My “hypochondria” and “early perimenopause” (eg the night sweats) and “simple anemia” of 10+ years turned out to be follicular non-hodgkin’s lymphoma including B symptoms, repeatedly written off as (not biopsied) benign enlarged nodes… I think this kind of thing happens more often than one would imagine. I was lucky in that this cancer is, at least, an indolent one so the delay in treatment only meant misery and not death.
As a retired neurologist, I concur with Dr Flaherty’s findings that neurology & psychiatry are indisputably entwined. Treating MS patients has taught me that there are few patients who imagine their conditions. Osteopathic medicine has recognized this for decades.
Would like to know more. Pl call 281-967-4159
Thank you for sharing Dr. Flaherty’s incredible life and career. It has renewed my faith that there are caring doctors left who work with their heart AND brain and aren’t afraid to look outside the box. I am an RN who has lived through every negative experience mentioned-both as a nurse and a patient. I walked away from the medical field last year after losing hope as a nurse and as a patient. Reading about this incredible doctors real life story, her struggles, and her mission to get to the root of the illnesses of those who had been written off by her cohorts gave me hope. I pray that she will serve as an inspiration to those in or going into the field to be better, kinder and more caring about the lives they affect. God bless you, Dr. Flaherty.
Dr. Alice Flaherty’s way of treating patients — with respect for their humanity and understanding that very, very few people WANT to be sick — should be the default attitude of all physicians. Instead it’s so rare that it’s a noteworthy departure from business as usual. What a sad indictment of the medical profession!
I wish it’s had a Dr. Flarety years ago instead of a neurologist who asked if I really wanted to know what I might have because if have to tell me children…..I did finally find out what I had from a doctors at MGH and Johns Hopkins. Thank heaven for a PCP who always believed. Believing is what made the difference. And still I have doubts!
Comments are closed.