By Thomas Larson
Is it just me or do you, too, notice that the preponderance of published and reviewed books about medical matters are by doctors, not patients? Is this just my ego griping, the author of a memoir about heart disease, who lingers, uncalled, in the waiting room of the healthcare debate? Perhaps. But I want my voice heard because patients speak to health and illness as participants and not, as doctors do, as witnesses. It’s a perspective largely neglected in our culture. If the media gatekeepers show any interest in what we write, it’s to question our credentials. What medical authority does the patient have in a system run by experts?
I’ll tell you mine. I’m a survivor of three heart attacks over a recent five-year period in which I was shocked awake to my problems: the deadline stress of a journalist, extra weight, crappy diet, and a lousy genetic hand—all of which caused the disease. I was saved by three angioplasties but I received no nutritional or lifestyle advice, and nary a nod to that health-trade axiom, “patient empowerment.” I got stents, I got drugs, I got fixed, but I felt a divide between me and my overburdened cardiologists. Every visit to the doc, I would count 20 other discouraged people waiting for their precious eight to ten minutes. I put these things in a memoir—a patient’s story. But mine, like thousands of others, has fallen by the wayside, due in part to our media’s imperial deference to doctors and advice-hawkers.
When it comes to Americans and their “recovery” from disease, we have two domains of medical authority—those who treat disease and those who live with it. The pairing sounds balanced; however, only a few thousand providers oversee, like an occupying force, the millions who are ill. (The US cardiologist ratio for the 65 and older demographic is 500 per 100,000 population.) What’s more, we characterize these imbalanced domains with extreme prejudice. Against the CEO-like physician who prowls the stage with product lines and Big Pharma endorsements are bovine spectacles like the TV show The Biggest Loser, a circus act that “fights obesity” with competitive embarrassment and drama-plagued weigh-ins.
Of course, it’s not true that doctors author most health books. The terrain is littered with good and bad efforts by, or on behalf of, the ill, the diseased, the terminal, the ex-addicts, those who didn’t die and got “sent back,” and a legion of nameless caretakers and codependents who midwife fraught confessions.
We hear little directly from the ill, not their successes and failures, their healed and broken relationships, their anger, or their sorrow.
However, the fires of these patient tales flame out quickly. Look at Amazon’s Top 100 in Medical Books and you’ll find only two from authors testifying to an illness: a caretaker’s memoir, <target=”new”>A Three Dog Life, and a patient’s story of sudden madness, <target=”new”>Brain on Fire. Otherwise, it’s an endless roll of diet/recipe books, first-aid manuals, conditioning texts, folk remedies, self-psychologizing philosophy, nursing journeys, and doctor reflections—most stamped with professional bona fides and offering achingly sincere relief.
In such homiletic analysis, we hear little directly from the ill, not their successes and failures, their healed and broken relationships, their anger, or their sorrow. This vast, emotionally suppressed army is a constituency without a voice, which our non-elected medicine chiefs—not much different than our political representatives—ignore.
As health consumers, we all complain about feeling dehumanized in the emergency room or during routine visits. We kvetch about feeling disregarded by a physician who neither touches us nor makes listening eye-contact, who, while typing on his iPad, asks, “On a scale from one to ten…” We know all that. I’m criticizing the doctor-knows-best nature of our healthcare culture and the media bias that misrepresents and disregards the patient.
Even as I rail about access and fairness, I am a joyful reader of doctor-writers like Jerome Groopman, Atul Gawande, and Danielle Ofri. It was Ofri, a writer and a physician at Bellevue Hospital, who got me thinking about the domineering voice of the medical professional in our culture. Not long ago, in a column, “<target=”blank”>Medical Memoirs,” in the New York Times Book Review, Ofri wrote capsule appraisals of books by a doctor, a cancer researcher, and a medical examiner, two of whom required co-authors. Despite her rosy notices, even she calls the current rash of physician-authors an “epidemic.”
The health voice in our culture belongs to the siloed specialists—physicians, counselors, researchers, and self-help gurus.
The publishers’ equation is simple: professionally-authored books sell, and the prescriptive sell far more than the descriptive. I’m not denying such authority its due. I’m pointing out the clannishness of these books, their odd entangling of similarity and exclusivity. More germane is how that exclusive sameness gets created. The rhetorical term is agenda setting: control of who’s in the discussion and who’s sidelined. According to Thomas Jesse Roach, Purdue University communications professor, agenda setting is a “higher level exercise of power than creating a public argument” because media barons “can frame the argument in ways that are helpful or hurtful or eliminate the argument altogether by denying access to the mass audience.”
As the field’s Top 100 and Ofri’s shortlist indicate, the health voice in our culture belongs to the siloed specialists—physicians, counselors, researchers, and self-help gurus. When the camera turns to the white-coated expert, Americans believe they’re getting the whole story. Patient experts, on the other hand, rarely acquire book deals, go on Doctor Oz, do Terry Gross, lecture at medical conferences (even in the new field of medical humanities, where only docs need apply), give a TED talk, or shill for PBS pledge-drives.
The problem is, this model may push pills, but it has a negligible impact on health. Surveys by the Centers for Disease Control and Prevention suggest that by 2020 three-fourths of Americans will be overweight or obese, up from the current two-thirds. If the health cautions offered by the medical brass, its media yes-men, and the cozy drug industry are so sound, why are incidences of heart disease, obesity, diabetes, depression, PTSD, and cancer steady or rising?
75 percent of the healthcare dollar, <target=”blank”>according to Leah Sottile at TheAtlantic.com, is spent on chronic conditions—arthritis, cardiovascular illness, cancer, and other ailments that debilitate many Americans. Chronic means constant monitoring. How are we going to handle this epidemic with the young sicker than ever and clinics bulging under the rising enrollments of Obamacare? In caring for an increasingly ill population, we have created what Andrew Weil—the rare physician who is also a patient advocate—calls our “disease-management system,” a trinity of troubled nouns. Such a system has brought with it a culture of med-speak and med-think whose bad effects are now the norm.
First, so much of medicine has a one-dimensional admonitory tone, the rhetoric of do-this and the factoid, the briefer the better. The American Heart Association is one of the naggiest with its endless tweets about healthy snacks and walking reminders like “Are you shopping till you drop? Remember those long walks to the parking lot are good for your heart!” Such eat-your-spinach advice is pushed incessantly, as if bullet points change behaviors. Most patients blow off such pestering—pamphlets tossed when you get home from the hospital.
In place of the factoid, we need story or reflection or drama from articulate sufferers who speak to the psychological stress of illness. For example, in <target=”blank”>Sonya Huber’s Cover Me: A Health Insurance Memoir, we get a painfully candid view of her years spent chasing medical care as a middle-class temp worker, and the harm such frustrations put her and other overstressed families through.
Second, when patient testimony is snubbed, bad medicine, Byzantine protocols, and mechanized healing go unchallenged. Tally you and your friends’ grievances: wrong diagnoses, needless treatments, hopscotching among specialists, lawyered forms, insurance delays, over-prescribed meds. Who are the people most harmed by this convoluted system? Patients and caregivers.
I suggest reading <target=”new”> Losing Tim: How Our Health and Education Systems Failed My Son with Schizophrenia by Paul Gionfriddo. This harrowing memoir reveals a father’s vigilance in trying to save his mentally-ill son, still homeless and isolated, whose treatment as an adolescent was inadequate or nonexistent.
Third, doctoral authority enforces the top-down, hierarchical thinking by which patients learn to invalidate their instincts. As a result, we are dumbstruck when querying a doctor or trying a non-Western source for healing. Why do we believe doctors and nurses know best? I like what <target=”blank”> Hollis Walker says about her recovery in her patient-centered <target=”new”>The Booby Blog: A Cancer Chronicle, reflecting on surviving breast cancer with and against medical authority: “I let go of the idea that any of these [medical] people are experts on my body. I’m the only expert on my body…. I gave myself permission to make decisions that were the opposite of what my doctor might recommend to me.”
Fourth, doctor narratives—because of the physician’s daily diet of trauma—are seen as more dramatically gripping than those by patients. But in <target=”blank”>Sarah Manguso’s <target=”new”>The Two Kinds of Decay, the tale of her blood disease, bloodletting treatment, and bottoming depression, we get thrilling/disturbing vignettes of her, her family, and her nurses and doctors, in 30,000 words. She focuses us on her wobbly rituals of health and recovery, engaging what we recognize—and feel—as our own panic, pain, and hope.
Patients can speak to, and learn from, other patients via story and sorrow, an exchange about which most doctors and the self-help class have no clue.
We are the ones the media should be attending to, we are the ones we should be reading about—far less than those, no matter how sensitive, who offer scripts and admonitions to the querulous. I’m advocating that we press the medical media to raise patients and their stories to the level of the health professionals’ tales, so we are equals, not servants. It’s simple: Patients can speak to, and learn from, other patients via story and sorrow, an exchange about which most doctors and the self-help class have no clue.
I’m calling for a Chekhov-like understanding of the ill in our culture (Oliver Sacks’ stress on his “cases” comes to mind) where the sufferer and her total healing regimen are at the forefront of health awareness and the physicians and advice-mavens are realigned. We in the public sphere must demand that our voices be heard, liberated from the theater wings where we’re waiting our cue. We can begin by knocking “medical authority” down a notch or two, off its kingly perch.