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Elizabeth Dougherty remembers exactly when her skepticism of doctors took root. Decades ago, as a varsity fencer at Cornell, the now-49-year-old Marlborough resident developed an excruciating pain above her left ankle. A doctor diagnosed a stress fracture. “He told me that I should take eight weeks off, and that if I didn’t, I would never walk again,” she recalls. “He was very aggressive with this. There was no middle ground.”
She ignored his advice, and the pain disappeared on its own. She can still walk — she runs marathons, actually — but the episode instilled a deep distrust of physicians. “It just seems like they don’t necessarily know what they’re talking about,” she says. For most injuries and illnesses she now prefers self-care: “I just figure I’ll have ginger ale and soup and it’ll go away.”
It’s one thing to take a chance on a stress fracture, but other patients follow the same course for more serious conditions. Roger, a 58-year-old small business owner who lives in Arlington, knew he should see a doctor about 18 months ago. Roger (who asked for anonymity to keep his medical information private) was having some “pretty dramatic” health problems: extreme fatigue, “absurd” thirst — “just needing to drink water constantly,” he recalls — and a cough he couldn’t shake. The previous year, his doctor had told Roger that he was pre-diabetic, and now it seemed likely he had developed full-blown diabetes, a condition that, untreated, he knew could result in blindness, permanent nerve damage, or even death.
Roger understood all that, but he still avoided the doctor because, well, you know. He’s self-employed, so insurance is always a hassle. His doctor seemed to need a few minutes to remember him at every visit. And he didn’t want to hear the bad news he already kind of knew. When he finally went — before anything really bad happened — he was indeed diagnosed with diabetes, started treatment, and felt worlds better.
Did he learn anything from this brush with calamity? Not really. Visiting the doctor was “good in a rational sense,” he says. “But I’m always fighting the internal fight between my rational side, which knows better, and my irrational side, which would rather just not know.”
Most of us put off seeing the doctor on occasion, and there can be consequences. Nobody likes mammograms and colonoscopies, but women over 40 who get annual mammograms see a 40 percent reduction in breast cancer deaths, while if you’re over 50 and don’t get a colonoscopy, you’re skipping a procedure estimated to reduce chances of dying from colon cancer by 60 percent. High blood pressure doesn’t hurt, but it can, eventually: The Centers for Disease Control says that only 54 percent of American adults are controlling their hypertension, which can lead to heart disease and stroke. “You might not feel a lot of things that are very silent, that can eventually really, really shorten your life,” says Gary Balady, professor of medicine at the Boston University School of Medicine, and director of preventive cardiology at Boston Medical Center. He adds it’s “not uncommon” for people to avoid symptoms like chest pain or shortness of breath for weeks, then arrive at the ER with a heart attack.
If the possibility of preventable death or disability doesn’t motivate you, maybe cost will. Research shows that early intervention and good primary care can keep chronic problems like diabetes, asthma, and congestive heart failure from turning into emergencies that lead to hospital stays. And you really don’t want to go to the emergency room for the stuff your primary care physician could have handled: A 2013 study found that the average cost for “sprains and strains” at the ER is $1,498; for a urinary tract infection it’s $2,598. At a doctor’s office, according to the website CostHelper.com, a sprained ankle costs about $500 without insurance, and a basic UTI $300 (both are about $100 if you have insurance).
Dr. Carolina Abuelo, a primary care physician at the MGH Charlestown HealthCare Center, says people have arrived at her clinic with advanced cancer, horribly infected bedsores, and out-of-control hypertension. “It’s a huge issue,” she says of patients’ failure to show up for appointments, or follow up with care. On the other hand, even doctors procrastinate, especially when the problem seems small. When Abuelo twisted her ankle walking down a step a few years back, she just iced it and popped some ibuprofen — basic treatment for an ankle sprain. But weeks went by, the pain got worse, and when she could barely walk she finally visited an orthopedist, who told her the ankle was fractured. Whoops.
Why did Abuelo, a physician, wait so long to go? She ticks off the reasons the rest of us cite: too busy with kids and work, and a hope that the problem will just go away. Those reasons map on pretty well to what researchers have found when they ask this same question. A 2015 study called “Why Do People Avoid Medical Care?” noted three broad categories of reasons, which boil down to: “It’ll get better on its own”; “I just don’t like doctors”; and “It’s a hassle and costs too much.”
“Cost and hassle” falls under what the study’s lead author, Jennifer Taber, calls “traditional barriers” to care, and includes logistical problems like lack of transportation, inconvenient hours, and no child care. Taber, an assistant professor of psychology at Kent State University, says that cost, or lack of health insurance — which is pretty much the same thing as cost — was the most common reason people gave for avoiding the doctor.
What surprised her, though, was how many people fell into the “I just don’t like doctors” category, which she calls, more scientifically, “unfavorable evaluations of seeking medical care.” People don’t just distrust physicians but also fear bad news, and have concerns about unnecessary procedures, communication issues, embarrassment, guilt, long wait times, and bad smells.
Patients describe doctor visits as everything from “humiliating” to “Kafkaesque.” “It always feels like the Spanish Inquisition,” says Belmont resident Bill Lattanzi. “‘Here’s this form. Go fill it out. Go sit down.’ And then you wait, and you feel utterly powerless.”
“It’s dehumanizing,” he adds. “You get dehumanized when you go to the DMV or you call tech support, but because it’s your body, I think that’s what feels so wrong.”
Certain groups have more pointed complaints. African-Americans have a historically fraught relationship with the medical system, the most infamous example being the Tuskegee study, in which doctors withheld effective treatment from hundreds of black men suffering from syphilis between 1932 and 1972. The legacy of such maltreatment lingers. In a 2017 poll, 32 percent of African-Americans reported experiencing discrimination at a health clinic or doctor’s visit, and 22 percent said they have avoided medical care for fear of discrimination.
“Those types of responses are the ones that are really interesting to me,” says Taber. “What can you do to either change people’s perceptions or change the medical environment?”
One step might be increasing physicians’ cultural competence, and decreasing their burnout, says BU’s Balady, who admits to occasionally putting off doctor visits himself, though not for anything serious. If a doctor “seems disinterested and annoyed when you show up, or too busy, then of course it’s going to be a turnoff,” says Balady. “I would never go see anybody again if I got a turnoff on the first visit.” Conversely, he says, “once you establish that reputation that ‘Hey, this guy cares,’ then it’s easy.”
He has had patients brush off chest discomfort, heartburn, shortness of breath, and jaw pain — the symptoms of a heart attack — as work stress, indigestion, and even mere toothaches. Such misinterpretations are part of what makes the final category — “It’ll get better by itself” — the toughest nut to crack, because sometimes serious problems like high blood pressure or early-stage cancer are silent, painless, or easy to dismiss. Of course, people may sometimes be right to avoid treatment, because evidence shows some medical procedures can be unnecessary and sometimes harmful. Just last month, researchers reported that inserting stents into clogged arteries to relieve heart pain, a common procedure used in a half-million people every year, works no better than a placebo. Another 2017 study found that doctors were pretty poor at judging the value of treatments, tests, and screenings, often underestimating harms and overestimating benefits.
“Maybe people’s instincts are right sometimes,” says Taber. The challenge, she says, is helping people identify when to follow their instincts, and when to recognize fear or some other obstacle is preventing them from getting important medical care.
Taber is not a physician and would not offer a checklist for deciding “When You Absolutely Must See the Doctor,” noting that the danger signs are different for each person. She did point to some common-sense advice offered by the University of Minnesota: Know your personal risk factors and warning signs, based on your age, family history, and existing conditions. And call your doctor if new symptoms appear suddenly after surgery or starting a new medicine.
Balady urges everyone to have a primary care doctor, and not to feel silly calling them about worrisome symptoms. Most Massachusetts residents seem to have this part in hand: Only 16 percent of men and 6 percent of women do not have a personal doctor or health care provider (nationally, the average is 28 percent of men and 17 percent of women). And while there’s no proof, actually, that annual physicals have much medical benefit, they do offer doctors and patients a chance to establish a relationship, which might prove valuable in the long run. If primary care doctors do their job right, says Balady, they’ll help keep you healthy and out of the hospital. “Because,” he says, “you don’t want to meet your first doctor in the emergency room.”Barbara Moran is a science writer based in Brookline. Send comments to firstname.lastname@example.org. Follow us on Twitter @BostonGlobeMag.