“Would you mind humoring me for a minute?” I asked the doctor, a maxillofacial surgeon I’d met 30 minutes earlier.
He’d already taken X-rays of my head and palpated the tender, knotty mass inside my swollen cheek. It was a nonspecific muscular strain — not an everyday injury, he conceded, but not a reason to get my affairs in order either. What a relief, I said, before asking if I could still run through some of the conditions I’d come across online.
With the doctor’s blessing, I went down the list: salivary stones, Sjogren’s syndrome, buccal cancer, your garden-variety gland blockages. He nodded along, explaining why each one didn’t quite match my symptoms. He also taught me the correct usage of the word “buccal.” This Q & A session took about five minutes, and it probably spared me from the anxiety of shining an iPhone light inside my mouth, wondering if the doctor had considered buccal cancer, and rereading the Wikipedia entry on the parotid gland.
Here’s the thing: I’m always going to Google symptoms before I see a doctor. I’m always going to do a quick sweep of the medical literature. I’m always going to read up on the parotid gland. And I’m in good company; studies suggest that most of us hit the internet with questions about our bodies, even if we’re planning to see a doctor. Experts regularly take issue with this approach, arguing that Dr. Google can diminish trust in actual doctors and cause patients needless health paranoia, potentially taking a toll on mental health and contributing to healthcare avoidance. But there’s nothing inherently harmful about the activity, and research indicates that online info-seeking can actually improve healthcare experiences if patients discuss their findings during appointments.
In other words, go ahead and see Dr. Google. Just get a second opinion afterwards.
There’s a growing body of literature examining our relationship with online health information and how it affects our real-life behavior. Studies on the topic don’t encourage worst-case digital deep dives, but collectively, the research doesn’t tell patients to stay offline either.
In one 2017 review paper, published in the Journal of Medical Internet Research, informatics researchers from Singapore analyzed 18 different studies on seeking health info online and its impact on the doctor-patient relationship. Most patients admitted to pre-appointment internet time, and they were more likely to say it heightened, rather than hindered, their exam-room interactions: Some said it helped them understand clinical jargon used by doctors; others reported feeling better equipped for conversations regarding their care, as well as more confident and comfortable with their doctors’ advice. Patients who reported the best healthcare experiences and strongest doctor-patient relationships were those who discussed their online findings during appointments — with doctors receptive to having those discussions.
My recent cheek-mass scare was the first time I made a conscious decision to lay bare the fruits of my googling during an appointment. The decision paid off: My doctor’s response told me that he was a human being who knew way too much about head-and-neck anatomy. What more could I have asked for?
That’s just one anecdote, though. For certain patients or types of medical problems, it might not be a great idea to dabble in casual self-diagnosis, even if you loop in your doctor. Plenty of studies say that health anxiety and cyberchondria, a digital-age analog to hypochondria, are serious, growing problems, and that people prone to either condition should scale back on googling symptoms — or just quit altogether and get some therapy. And I was fortunate to have a positive experience talking about my online research with a doctor; that’s not the case for everyone. But things could be trending better for patients.
The growing patient-centered care movement rejects old-school medical paternalism and invites patients to become active participants in their care — paper gowns and white coats as teammates. Still, research suggests that patients are often wary of asserting themselves in the diagnostic process as teammates would. In the Singaporean paper, the most commonly cited reason for patients staying mum about online research had to do with fear of doctors reacting badly, as well as perceived discouragement from doctors. Patients who felt discouraged weren’t planning to hide their internet searches, but they clammed up when doctors acted dismissively, seemed irritated or made efforts to avoid the issue. Study authors generally found the implications of bringing up health information to be more positive than negative. But when attempts to talk about Dr. Google didn’t go well, it mattered a lot to patients. They felt anxious and angry, and unhappy with their care and their relationships with doctors.
Annemarie Jutel, a medical sociologist in New Zealand whose work focuses on “all social phenomena related to diagnosis,” has a theory about why doctors want patients to ditch Dr. Google (or at least feel enough shame to pretend to). To her, it speaks to medicine’s overreliance on diagnosis. “I think you can be sick without a diagnosis, and that doesn’t make your sickness any less valid,” says Jutel, who also has a background in nursing. “A disease is a material phenomenon which exists, but the diagnosis we give to the phenomenon is a social agreement about what counts as disease.”
It might sound strange to think that doctors lean too hard on diagnosis. But the use of a rational, scientific system to explain disease wasn’t always a defining part of a doctor’s job or identity, Jutel explains. In the late 19th and early 20th centuries, doctors fought to establish the value of diagnosis in two ways: as an indispensable clinical service and a signifier of legitimate expertise, i.e., a tool for separating doctors from both patients and uncredentialed quacks. Doctors won the fight; diagnosis became “simultaneously pivotal to the expansion of medicine’s reach and also to the cultivation of self-diagnosing patients,” Jutel says. “On the one hand, medicine asks patients to believe in diagnosis as an explanatory framework. On the other hand, doctors are dismayed that [patients] should use diagnosis to explain what ails them.”
A diagnosis can become the devil you know; a shared label to bond over; a word to set a Google alert for.
Back in those days, newspapers shouldered the blame for igniting unfounded illness fears and emboldening patients to disregard medical advice, much the same way Dr. Google earns disdain now. Of course, it’s true that the internet teems with dubious health information. (See: anti-vax Twitter, exaggerated study reporting, wellness blogs exhorting the evils of toxins.) Jutel acknowledges that “people need to be smarter about online junk, which is much of what Google proposes.” But rather than express irritation, she believes doctors should help patients make sense of the junk, and of their health: “It gives the doctor a good starting point for understanding the patient, even though there will be plenty to set straight because of the low quality of online material.”
When your symptoms are baffling and interfering with your life, a diagnosis from any source can be a tremendous relief. After years of waking up to raw, hivey rashes covering my face, testing positive for a severe fragrance allergy gave me a renewed sense of control over my body. When my right hand went from tingling to barely functioning, it felt like a win to learn that I had a defunct muscle compressing my carpal tunnel. Compared to unnamed symptoms, a diagnosis can become the devil you know; a shared label to bond over; a word to set a Google alert for.
Still, Jutel says it’s not always a diagnosis that patients need most. She isn’t calling to dispense with diagnosis entirely — she just wants doctors to make treating the patient, not the disease, their priority. “I have been involved in a study,” she says, “where we found that patients who were given an explanation, a plan and a treatment were usually satisfied. Most wanted that, whether it came from diagnosis or not.”
The maxillofacial surgeon acknowledged that he didn’t give me the formal diagnosis I probably expected. But it was OK. I didn’t feel like I needed a name for my unspecified cheek strain to take charge of the issue. I had a good idea of how to care for the mass, and enough of a reason to believe it wasn’t cancer. And if my cheek didn’t un-chipmunk, I knew I had my doctor — my teammate — on my side.