My Doctor Didn't Know What My Horrible Stomach Bug Was. So I Did Exactly What You're Not Supposed to Do.

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Do you know what giardiasis is? I had not heard of the intestinal infection before I had it. It's caused by a parasite and gets diagnosed about a million times a year in the US And there's no need for me to ruin anyone's lunch by outlining the precise shape of how unpleasant it is, but believe me, you do not want to have giardia. You can, if you like, Google it.
Which is exactly what I had to do to get it treated. I had, of course, been to the doctor about my really quite dramatic stomach problems. He asked me a bunch of questions, then tried me on some antibiotics, all of which did nothing, and I remained overwhelmingly, disgustingly unwell. After about six months of chugging Pepto Bismol and becoming intimately acquainted with all the various ways one's bowels can malfunction, frustrated and worried by my lack of improvement, I took my symptoms to the internet. Almost immediately, I found a potential answer: giardiasis.
I went back to the doctor and asked him whether that might be what I had. “Seems unlikely, given you haven't been in contact with contaminated food or water,” he told me. In fact, I had: I'd recently been working in refugee camps in Greece, in conditions where proper food hygiene was a tall order. I had actually told him this during my first appointment. I explained it once again, he finally agreed with my assessment, and he prescribed me two pills. I was cured within a week.
I don't often have a reason to revisit this period in my life—it happened 10 years ago—because it is over, and it was gross. But I was thinking about it again recently. I had my gallbladder removed last year because I had gallstones—another quite unsexy thing for me to have to disclose, but there we go: The body is full of vile wonders. The primary symptom of gallstones is agonizing episodes of pain. These episodes, which last several hours and tend to come on at night, are sometimes said, by people who have experienced both, to be more intense than labor. Once I saw a doctor, I was quickly referred to surgery. The operation was straightforward, and the recovery time was minimal.
Nine months after that, though, I had another two of these episodes, despite no longer having the organ that was presumably causing the issue in the first place. I duly went back to the doctor (a different one from the “It's not giardiasis” guy—I'd long since moved on from him), who ordered an MRI, blood tests, and other panels. Those tests turned up nothing. He was stumped. And so was I.
That is, until I took to the internet. Pancreatitis seemed unlikely, as did residual gallstones, given the negative test results. Then I thought to try “codeine + gallbladder + painful.” Before both episodes, I had taken painkillers containing codeine. On a Reddit thread, of all places, I discovered that codeine can apparently cause “biliary spasms,” which feel like gallstone attacks in patients without gallbladders. Once again, I had told the doctor about the codeine, and he had decided that it wasn't relevant. The posters on Reddit had also had to figure this out for themselves, using the internet.
You've probably heard the advice not to Google your medical symptoms. But I've begun to wonder how useful that advice really is, and why it's given. The accepted wisdom is that if you consult Dr. Google about, say, a pain in your side, you could either end up convincing yourself you have an outraged form of cancer (a phenomenon sometimes known as cyberchondria) or, conversely, come away thinking it's nothing to worry about when it might in fact be something to worry about. You simply can't know, just from reading a list of symptom causes on WebMD, which of them have any relevance to you personally. Further, you know a lot less than a doctor, especially when it comes to connecting the dots.
And yet, like so many people, I ignore this advice and fire up my laptop whenever a medical mystery arises. Partly it's that I have the vanity to consider myself one of the Good Googlers. In the same way that I quietly disregard the caution not to use Q-tips to clean my ears, I think that, yes, other people shouldn't Google their symptoms, sure, but I am doing it the Good way. I am rationally discounting the unlikely possibilities, I am keeping an open mind, I am using my special, safe swirling method to get the cotton-tipped stick in there. Despite the warnings, I have removed satisfying globs of wax. I have Googled my symptoms and gotten it right .
But also, the internet and I got it wrong about my gallbladder. Before the initial surgery to remove it—indeed, before even seeing a doctor about it in the first place—I Googled my symptoms. For months, I tried things like excluding lactose, fizzy drinks, and spicy food and not eating late at night, all to no avail, because the internet said it might help. I didn't know where the gallbladder was, or that it could have stones, and so I didn't think to Google any of the keywords that would have led me to discovering my problem. An ultrasound found it, in the end. I did need the doctor, in that case, and I could have saved myself months of intermittent suffering if I had gone sooner.
I wanted to know what the medical literature had to say on this topic. While the research is pretty limited, it seems that not everyone is convinced of the detrimental effects of symptom searching. I found a Harvard study, published in 2021 , that suggests that, in fact, searching for symptoms online increases a patient's ability to correctly self-diagnose a problem and does not compound health anxiety in the process. Five thousand participants were given clinical cases and told to imagine that a family member was experiencing the symptoms described. First, they had to come up with a diagnosis on their own, then repeat the task using the internet to help inform their decisions. The study found a small but still significant improvement in the accuracy of the participants' diagnoses when they used the internet for help as opposed to when they didn't: 54 percent vs. 49.8 percent. So perhaps the internet can help a bit, and maybe it doesn't hurt.
I got in touch with the study's lead author, Harvard Medical School associate professor David Levine, to ask him whether he would actually advise people to search for their symptoms, contrary to the usual guidance doctors give. He provided the kind of answer scientists often gave: a measured one. “I think this really depends on the patient,” he said. “For example, it may be that patients with limited health literacy should not use internet health search, as these patients may not be able to decipher and interpret the results. Patients with excellent health literacy may be able to do this.” He gave another classic scientist answer: Perhaps more research could illuminate things.
I was curious about his response to another question, though. I asked him: “Do you think Googling symptoms comes from a lack of trust in medical professionals?” He said, “No, I think it comes from the age-old desire to have quick answers to our questions.” And I found this less interesting for what he said—although I think he has a point—than for my surprise at my own question. Because this is, I think, why I do it.
I don't have a lot of faith in doctors. And I use the word faith advisedly. I understand that the vast majority of doctors have a huge bank of knowledge and understanding that I do not, that they work very hard and try their best for their patients. But I find it hard to believe in their ability to make me better.
This is something I've come to understand about myself only recently, when I had to justify to my poor mother why it took me several months of experiencing intense gallstone pain to schedule a doctor's appointment. But looking back at my medical history—mine is curiously long and colorful—it makes sense. At 8, I had my appendix removed, but the surgery went wrong, leading to a further surgery and me becoming a lot more unwell in the process. I have had a chronic pain condition since the age of 19 that has never been diagnosed. Investigations into it halted when the doctor told my dad—not me—that she thought the pain was purely psychosomatic. That was over a decade ago, and I've simply never trusted a doctor with it since. Doctors, in some subconscious part of my mind, don't really know what they're doing, and so I'm better off alone, just me and my search engine.
This is, plainly, quite a stupid way to live, and thank God my mother pressed me into seeing a doctor and having the gallbladder surgery, or I would still be writhing around on the floor now, bleating things like “I think it's IBS” and “Maybe it'll just go away.” But I am not the only person I know who has a deep-seated sense that going to the doctor is a futile endeavor. Among my female friends especially, it's a common enough feeling. Why go to the trouble of seeing a doctor (and in the UK, where I live, getting an appointment is no mean feat these days) when they probably won't have any idea what's wrong with you, or the time to figure it out, or the inclination to take your aches and pains seriously?
I don't have an answer to any of this, really. I don't know how to regain my faith in doctors, and I don't intend to stop using the internet as a tool for getting to the bottom of my medical problems. But at the very least, I think “Don't Google your symptoms” is an unrealistic piece of advice, and one that doesn't answer the question: What the hell else are you supposed to do when the doctors can't work it out? And if I hadn't asked the internet, would I still be sick?
