Medical Examiner

If You’ve Self-Diagnosed on the Internet, Should You Tell Your Doctor?

Internet etiquette has changed since WebMD first came around.

Woman with a tissue in hand and a laptop on her lap, self-diagnosing her illness online.
Photo illustration by Slate. Photos by Thinkstock and WebMD.

My wife, Cassie, is a medical mystery junkie. She loves Mystery Diagnosis (which I can only watch if I cover my eyes at the gross parts), books on the history of yellow fever, and Googling grotesque details about obscure diseases. When she gets sick, the first thing she does is try to self-diagnose, via the internet, and she’s actually pretty good at it. In college she once thought she might be dying of a brain tumor, but when she checked online, she found that a splitting headache combined with a lightning bolt blotting out her field of vision was most likely an ocular migraine. So she skipped the doctor visit and still only relies on Advil and coffee when she feels a migraine coming.

The approach I take to medical concerns is nothing like my wife’s. If I think something might be wrong, I first ignore it for 48 hours, and if it hasn’t gotten worse, I continue ignoring it, for months or even years if necessary. Who wants to go to a doctor, much less find out they have some sort of condition?

Cassie does. When she woke up a few years ago with a sore throat, a slight fever, and a patch of light red rash on her stomach, she was instantly suspicious. She turned to the internet, typing everything into WebMD’s Symptom Checker. A few minutes later she had the very answer she’d suspected: scarlet fever. It seemed like a pretty mild case, but she said it was something she should go to urgent care and get some antibiotics for. The rash looked pretty innocuous to me, but I’ve learned not to doubt her diagnoses. Before she left for urgent care, we planned her strategy.

“Just tell them you looked up your symptoms, and you think you may have scarlet fever,” I suggested. She gave me a look like I’d suggested we just tell the president to stop tweeting so much.

“I can’t do that,” she said. “Doctors hate that. I’ll get a lecture, and the diagnosis will take forever.”

She had a different plan in mind: Start with the rash, then let the doctor ask enough questions to come to the same conclusion she already had. This plan, to dole out symptoms like breadcrumbs leading to a diagnosis you knew ahead of time, was something I wanted to see, and so I tagged along to urgent care. My wife reported just the rash on her stomach to the nurse and then again to the doctor, an older gent. The doctor asked whether Cassie had any soreness in her throat while I tried to maintain a poker face. Cassie answered yes, she thought she might have just a touch of soreness, and then the doctor took her temperature, which was slightly elevated. He took a throat swab, then left the room for several minutes. When he came back, he warned us that though the diagnosis might sound serious, we didn’t have to worry: My wife had scarlet fever, and he’d be prescribing antibiotics. Cassie nodded seriously—she never once broke character—while I made an amused face behind the doctor’s back.

By now, the stereotype of the hypochondriac who goes on WebMD and becomes convinced she has some rare and deadly disease is so well known—and assumed to be reviled by doctors—that many people who still use the internet to assess their symptoms also know to hide this tendency, or deploy a breadcrumb method like Cassie.

But after watching this dance in action, I wonder if we’ve gone too far in the direction of worrying about people worrying about their health. Is self-diagnosis always bad? I’ve seen the benefits of using the internet to check out your symptoms before a doctor’s visit: Information hounds like Cassie can discover weird new facts about the body, which can be fascinating all on their own and could also guide you to the right questions to ask your doctor, or related symptoms to alert them to. Or if you’re like me and would prefer never to visit the doctor at all, online tools like WebMD or the somewhat less disreputable Mayo Clinic Symptom Checker can warn you on the rare occasions when a problem might be more serious.

What do doctors think about patients who use tools like WebMD? I talked to Sydnee McElroy, a physician in family practice who co-hosts the medical history podcast Sawbones, and her responses confirmed my suspicion that there can be a place for pre-emptive Googling—to a point.

“I’ve had that stereotypical patient who, whatever their symptoms were, [going online] led them to cancer,” McElroy told me. “As much as I think it can be beneficial, there’s just so much misinformation out there.”

It is certainly true that a quick symptoms check can often catapult someone into panic. But that’s no longer even surprising or unexpected. Instead, the real test is whether patients go on to prioritize the information they’ve found online over the direct diagnosis they’re receiving from their doctors.

“If the patient still clings to that misinformation after we’ve done the testing and come up with a diagnosis, it can be a case where this is eroding the trust you should have in your physician,” McElroy said. And while she noted that some doctors might be dismissive of printouts from the internet, she strives to engage with self-diagnosers about what they found, why it might be right, and why it might be wrong.

“It’s no good if I give someone a diagnosis and they’re still worrying, wondering if I got it wrong,” she said. “Sometimes I even go online with the patient, and help them see that, say, this parasite is only found in a certain part of the world so that’s why I’m so sure you don’t have that.”

It comes down to these three questions: How are you using online medical information? Are you able to evaluate the information you find online objectively? And, do you ultimately trust your doctor’s expertise? If you’re using the internet to supplement, rather than supplant, expert medical advice; if you are more curious than panicked when you look up your symptoms online; and if you do have a regular physician whose opinion you trust, then checking out your symptoms on WebMD can be useful. But if you find that you’re use of WebMD is creating tension with your doctor and introducing a lot of stress into your life, you may be doing yourself more harm than good.

McElroy was amused at our scarlet fever story and admits that some doctors can be difficult. That’s why, she says, it’s so important to have a family doctor who knows you, who you’ve built a relationship with, and who you can be upfront with about what is on your mind.

“Doctors are like any other profession, there are better ones and worse ones, and some are just going to be jerks,” she said. “I would hope, though, that most of the time that’s not the case.”

For Cassie’s part, she’s still cautious but says that sometimes she may mention her thoughts about possible diagnoses to a doctor. “I’m still not likely to mention WebMD in particular, because I think it has an especially negative association, but I may mention a conversation with a previous doctor or, if I sense I might be able to get away without a lecture, say something like, ‘I read this and thought it might be relevant,’ and if they respond well, I’ll keep talking, if not I’ll backtrack and hope for the best.”

In other words, she’s the model WebMD patient.