Picking up diseases was my mother’s favorite pastime. Some parents joined the PTA, formed book clubs, or became dedicated groupies for whatever sport their child happened to be playing that week. My mother had something even better: her prized edition of the Oxford Medical Dictionary. A learned hypochondriac, she slept next to it every night, and sometimes I could swear I saw her praying over it, silently begging Hippocrates for guidance.
My mother spent her idle hours perusing its pages the same way most housewives read tabloids. She was looking for answers to questions she didn’t know she had. For most people, a pain in the stomach is just an ill-advised taco, but for my mother, it bespoke of myriad strange and exotic possibilities: an ulcer, cramps, perhaps an untreated hernia, or even the faint rumblings of a rare Asian flu.
She’s been the proud bearer of West Nile virus, epilepsy, and more cancers than I can count. When most children are acting up, their parents will either ground them or say something like, “Oy, you’re giving me a headache!” My mother would tell me that she had a brain aneurysm and could die any second. While helping my mother avoid living (because, hey, she could be dying after all, so why try?), the implication was always that I’d better appreciate her while I had the chance—she might not be around forever.
This tactic was a surefire way to get me to do chores, but it was less effective at helping me pay attention in math class, where I frantically worried if my mother would be alive when I got home. It’s a really good thing kids didn’t have cellphones in 1996, and it’s even better that my mother didn’t have an Internet connection.
• • •
Disease was my mother’s hobby, and I never set out to make it my own. I spent most of my adult life avoiding doctors like one of those celebrities who thinks vaccines give your kids eight eyes. When I threw out my back during my freshman year of college, I accepted a lower grade from my professor in exchange for not having to bring a doctor’s note to class. Instead, I waited out the pain in bed with a bottle of Aspirin and reruns of Veronica Mars, just like God intended.
As a nascent technoskeptic, I looked at the Internet with studied cautiousness, like the old man who suspects his neighbor could be a Russian spy, but at the time, I felt that no corner of the Internet was more of a threat to national security than WebMD. If Pentecostals and revivalists have faith-healing, the power of Jesus’ hand to reach out and cure you, the digital era has WebMD.
A hypochondriac’s best friend, the website exists to tell you what’s wrong with you—or what could be wrong with you
Except the difference is that unlike megachurch televangelists, WebMD doesn’t promise to make your pain go away. A hypochondriac’s best friend, the website exists to tell you what’s wrong with you—or what could be wrong with you. It’s a commonly accepted truth that after five minutes on WebMD, you will be convinced you are going to die. At any moment, you are less than three clicks away from cancer, like a Choose Your Own Adventure Story with one ending.
But I didn’t need WebMD to tell me I might have cancer. Luckily, I had a doctor for that.
• • •
During my senior year of college, I started to drop weight like an actor angling for an Oscar. My eyes looked hollowed out and perpetually sunken, and my grandmother thought I was on drugs. My parents argued about what to do with me. My father wanted to pull me out of school and bring me back home to Cincinnati. My mother, ever the lay doctor, tried to diagnose me, but I wasn’t listening. I held the phone away while she talked, and from far away, the jibber-jabber sounded the same as if I were listening.
My doctors first decided it was a gluten sensitivity. This was 2012, and diagnosing people with gluten allergies was very in at the time, as health food stores and upscale grocery chains across the country expanded their organic sections. A world without wheat promised liberation—and normal poops. When your stomach doesn’t digest food properly, you spend more of your life on the toilet than you would ever like to see tabulated. I live in fear that when I die, my life will flash before my eyes, and it will have been nothing but shit.
I did as I was told. I lost more weight, and when I look at old pictures of myself, I look like a ghost with a plastered-on smile, like you might see on a pumpkin on Halloween. I researched what I could and couldn’t eat. I wasn’t totally sure what gluten even was, but I was very adamant about not having it. I ate really gross breads. I requested special menus. I became that person at the restaurant everyone hates. And I didn’t feel any more alive than when I started. I just felt like someone going through the motions of wellness. I was waiting for my breakthrough.
• • •
The first time I saw blood in my shit I was 12, and I thought I was having my period. I paid attention in health class long enough to understand that only girls “got that time of the month,” and most of my female peers had already been through the change, with more than a few accidents leading to tearful exits from fourth-grade classrooms. “But there has to be a first time for everything,” I thought to myself. “Would I have to start wearing tampons?”
I live in fear that when I die, my life will flash before my eyes, and it will have been nothing but shit
I went to a doctor at a university who told me it was perfectly normal for a young man to have bowel issues. He stuck a giant tube up my butt and pumped me full of air, and I imagined my body expanding like a giant balloon and floating away like in a Jules Verne novel. While I longed for escape, to touch down in any land where I could be normal, my adult life would be spent searching for answers in any place I could find them. I tried new diets. I spent money on laxatives and probiotics. I listened to a podcast that told me happiness was in the stomach and key to my holistic health. This was hardly new information.
My mother, who had long since added celiac disease to her stable of self-diagnosed plagues, would often remind me that she was going through the same thing, referring to it as “our disease.” Having her steamroll my very real health problems with her pretend time made me want to scream all the air out of my lungs. But most of the time I just wanted to eat in peace, without having to consult a website.
Six months after moving to New York, my doctor called me in for some additional testing after hearing my symptoms—constant bleeding, flatulence, and stomach pains—and getting a gander at my blood and stool samples. It looked like tar covered in a cherry topping. Unlike my mother and her medical dictionary, they wouldn’t be fishing as much as ruling things out. Among my options were Crohn’s disease, ulcerative colitis, and the biggest C of them all: cancer.
I scheduled my appointment for a colonoscopy—and then I waited.
• • •
I was pretty sure I didn’t have cancer. I was positive I didn’t have cancer. Cancer was something that only happened to Valerie Bertinelli in Lifetime movies, where a dedicated team of makeup artists sought to make her look like a human Cabbage Patch doll. I crossed it off the list almost immediately.
But if I didn’t have cancer, what was wrong with me? With two weeks to pace around my Sartrean waiting room until my colonoscopy, I went to the only place I could think of. I consulted WebMD.
The website not only sold confidence but it also promised me things would get better. It didn’t have to be like this
Unlike my mother, I wasn’t concerned with performing my own eventual death. I just wanted to learn how to live better—or at least found out what “ulcerative colitis” even is. According to the website, ulcerative colitis is a “type of inflammatory bowel disease that causes sores in the colon,” whereas Crohn’s disease is “chronic inflammatory disease of the digestive tract.” That didn’t clear up things much, but I found the simple fact of seeing a vague definition on a screen surprisingly normalizing. Putting a name to my pain made me feel like I wasn’t alone in this.
Reading about the daily realities of ulcerative colitis and Crohn’s disease didn’t sound exactly like my life, but it was an existence I could relate to, one filled with a lifetime of weird poops and ritual embarrassment, in which shitting yourself becomes surprisingly normal. I lived in France for a short while, and on my first proper night in the country, my friend’s family celebrated my stay with a buffet of cheese, and I was much too busy trying to look gracious to turn it down.
After nearly a half hour of constant dairy intake, I felt like I had to fart. I was very, very mistaken. I politely excused myself from the dinner tabled and bowed to my hosts, as I casually went to throw away my shit-filled underwear in the bathroom. At this point, I was an old pro at humiliation.
• • •
Instead of using the Internet as a list of reasons to be unhappy, I decided to treat the medical information age like a tool I was using to cram for a test. When my diagnosis came and my doctor gave me the results, I would be ready and researched. I was going to ace this.
The difference was that I wasn’t going into WebMD blind; I already had the opinion of a medical professional, and I was using the website to fill in the gaps. In addition to briefing myself on the causes and symptoms of inflammatory bowel diseases, the site provided tips about how to maintain my social life with one, which included being prepared for emergencies, scouting all possible exits, and finding a seat close to the door. All of which sounded suspiciously like tips for surviving a fire.
Most importantly, though, WebMD often offers a chance for solace.
The website not only sold confidence, but it also promised me things would get better. It didn’t have to be like this. The Crohn’s disease main page links to a recent article from HealthDay reporter Amy Norton that highlights successful experimental trials that have been shown to reduce the symptoms of Crohn’s for short periods of time. Of course, the drug was only tested on 150 adults and such tests are in no way definitive, but the article’s inclusion speaks of the site’s mission to do more than provide information. It offers hope.
• • •
WebMD, however, was only the start, a mere gateway drug to the glories of the medical information age. For the sake of an exercise, I began with the assumption I had Crohn’s. Using a simple Google search, I researched what foods were recommended for daily consumption (read: salad, more salad) and what was considered trigger foods (read: well, basically everything else).
I made a Crohn’s-friendly shopping list and ordered the permissible foods on Instacart. I went to a health food store and bought $15 almond bread, which tastes like food but smells like a wet dog. I downloaded an UrbanSpoon-like app that helps me find health-conscious restaurants in the area. Another app keeps track of my symptoms and flare-ups, like a diary for my colon. A third provides me easy recipes for all meals of the day, simply because it’s hard to eat unless you cook it yourself.
Most importantly, though, WebMD and irritable bowel syndrome (IBD) apps often offer their users a chance for solace. On the WebMD page, the Crohn’s and Colitis Exchange offers comment threads to give users the chance to ask for tips and get feedback. On “Son’s crohns,” WebMD user louisbruce reports that his college-bound son’s weight has dropped from 225 to 148. He already has ample medical advice, but what he’s really looking for is community, the opinion of others who have been through it and have come out alive.
I think that’s all any of us are looking for.
• • •
When I woke up from my colonoscopy, I thought I was still dreaming and promptly went back to sleep, drooling all over my hospital bed. It took two nurses to shake me back into consciousness and force me to sit up. My doctor told me the good news: They found no evidence of polyps, the nefarious harbinger of colorectal cancer. But, of course, the bad news: I had an inflammatory bowel disease.
Even though I was still drugged and couldn’t stand without the help of two swarthy Russian nurses, I couldn’t but smile a little bit, knowing that I was more than prepared for what came next. WebMD gave me peace of mind and made me feel a little less lonely in the world, but I got something even better: an A+ in IBD.
Photo via Katrin Morenz/Flickr (CC BY SA 2.0) | Remix by Jason Reed