House, Symptom Checker, and Being Sick in the 21st Century
Last June, stuck in traffic en route to a wedding and having exhausted ourselves conversationally, my friends and I invented a game called “Guess what episode of House I’m thinking of.” It’s interesting what sticks in the collective mind; I have since played this game with a number of people and probably 40% of the time they answer “tick in vagina.” Runners up: poison jeans, swallowed toothpick, bra staph infection.
House holds an outsize amount of mental real estate for a show that ended in 2012 and that I never finished. (I never liked the second gen doctors. Bring back Chase!) It was the first medical procedural I ever watched, more like a cop show than like its contemporary Grey’s Anatomy, which premiered a year later. It is now mostly unwatchable, not just because of the jovial racism and misogyny, but also because the model of care is incredibly distracting. I know all procedurals require suspension of disbelief, but the premise of the show is that four doctors are working full time on one patient. Who’s paying for this? Where are the nurses? What is the CPT code for “breaking into a patient’s home to search for deadly mold?” One doesn’t get the impression there were a lot of doctors on the writing staff of House. Still, House’s catchphrase, “everybody lies,” is telling of the cynicism the layperson has absorbed from the American medical industrial complex.
House premiered in fall 2004; in spring 2005, WebMD rolled out Symptom Checker. My sin, my soul. You may already be familiar with Symptom Checker, but if not, it works like this: you click on a body part and check off your symptoms, and the software gives you a list of potential diagnoses. There aren’t that many symptoms, broadly speaking. It’s basically pain, dizziness, fatigue, nausea, bruises, congestion, and coughing, and alone or in combination, all of them can indicate anything from mild anxiety to terminal cancer. So you end up in the same exact place as you were before you played Symptom Checker, but with the illusion of having done research.
Symptom Checker was compelling for the same reasons as House. It allowed us to imagine that if we paid attention, we could add symptoms A, B, and C to find D, the diagnosis. If we can only collect enough knowledge, we can protect ourselves. Sometimes this is true, which is why I hesitate to ever tell anyone to get off Google. I know a couple of people who used the internet to self-diagnose their cholestasis, a dangerous pregnancy-related liver condition. Plus, it’s not so easy to get off the internet and leave medicine to the professionals. Even the most expensive Internet plan is cheaper than a single incorrectly billed visit with even a trusted in-network provider. Most people know how to navigate the Internet faster and more effectively than MyChart or a call with Aetna.
When I initially presented with signs of tuberous sclerosis, the first geneticist and neurologist I saw both told me my symptoms weren’t severe enough to warrant further investigation. Based on what I’d read online, I thought it was too strange a coincidence that I had both the hallmark lower back marking and an eye tumor, and pursued further imaging. Scans revealed tumors on my brain and kidneys, confirming my diagnosis. Google: 1, doctors: 0. (Me: -1.) After this incident I became Google’s little bitch. The Internet helped me pursue my diagnosis, but it also told me a ton of terrifying shit that was either outdated or patently untrue, like that the average lifespan of someone with TSC is 31.5 years, or that the average life expectancy is only seven years after the onset of lung symptoms.
Interminable information can occupy us interminably. In The Undying, a memoir about the very particular experience of living with breast cancer in 2014, Anne Boyer writes, “A newly diagnosed person with access to the Internet is information’s incubant. Data visits like a minor god. Awake, we pass the day staring into the screen’s abyss, feeling the constriction of the quantitative, trying to learn to breathe through the bar graphs, head full of sample sizes and survival curves, eyes dimming, body reverent to math.” I find it impossible to imagine what illness was like before the Internet, though of course millions and millions of people did it.
Because TSC affects so many different organs, a patient, depending on their age and sex, must find a neurologist, nephrologist, pulmonologist, geneticist, ophthalmologist, cardiologist, and dermatologist, ideally each with some knowledge of TSC, ideally who communicates well not just with you but with these other doctors as well. My doctors are mostly fine; two are excellent. My pulmonologist spent hours on the phone with me in the days following test results indicated a malignancy. But even compassionate care didn’t cure my compulsion to Google. This was because there was no way I could rephrase the question “What is going to happen to me and when?” that would make Dr. Goldklang tell me I would be okay.
We’re turning to Google, emphatically not a doctor, because we want something our doctors can’t give us, which is certainty. In this way, Googling is like praying. Sometimes we don’t get answers from our doctors for artificial reasons pertaining to insurance or money. Sometimes we can’t get answers because they are limited by the science currently available to them. Sometimes the answer simply doesn’t exist, because people will never be able to predict the future. The nature of sickness in the twenty-first century is that we are wedged between the fantasy of internet-enabled omniscience, the limits of modern medicine, and corporate greed.
A friend’s parent recently received a serious diagnosis; in the throes of the initial panic, her therapist told her her concrete tasks were to help with an administrative insurance-related task, and to stop googling the diagnosis. “I told her I would absolutely do the first,” she recounted. And although we both knew the second was good advice, like having a vegetable-forward diet or not looking at screens for two hours before bedtime, we knew it was overly ambitious. I will continue Googling until we have equitable and accessible care to healthcare, or until the Singularity, or until I’m dead, or (least likely) until I achieve whatever spiritual transcendence helps you stop needing to know the future. I am so accustomed to information; perhaps what I am looking for will be there this time.