Chapter Thirteen: The WebMD Generation: Diagnosing Ourselves When Doctors Don’t Care
Like many spoonies — the affectionate term that those with chronic illnesses use to describe themselves — I spent years thinking I was just a hypochondriac. Because that’s what doctors implied when I started seeing them about my odd collection of symptoms. They implied that I couldn’t possibly be in as much pain as I thought I was. They told me that my symptoms were psychosomatic — my anxiety was making me sick. And they told me that I wasn’t sick. They stopped just short of diagnosing me with hysteria, and probably only because the diagnosis isn’t as in vogue as it was in the 1900’s.
Part of me believed them when they told me I wasn’t sick. But another part of me couldn’t ignore my bodily experience. Couldn’t ignore that I felt awful all the time. So, I kept going to doctors. And I kept being dismissed.
After years of seeing new doctors, dozens of trips to Urgent Care and the ER, and hundreds of appointments where I wasn’t believed, it became clear that I would need to find answers on my own. I was nervous about turning to the Internet for answers. My own experience of my body was already being dismissed by the medical community. I didn’t want to add to that by being “that patient” who was trying to diagnose myself with the Internet.
The hypochondriac trope is an established part of pop culture. On television and in movies, the hypochondriac character is a joke. They’re always neurotic, usually annoying, never actually sick, and very often women — which is troubling considering how often women’s legitimate illnesses are dismissed as hypochondria or psychosomatic. These characters are never taken seriously, and their perceived illness is always the subject of eye rolls and exasperation, especially from the doctors from whom they seek treatment.
They’re the person who uses WebMD’s symptom checker every time they sneeze, who Googles their symptoms and becomes convinced they have cancer. This now familiar character is the one who goes to the doctor and announces the diagnosis they found on the Internet as soon as the doctor is in the room. They have their phone ready so they can show the doctor all the research they’ve found.
This “Internet Doctor” diagnosing their non-existent illness is the butt of the joke. They’re not really sick, they’re looking for attention. They’re not really sick, it’s a hilarious manifestation of their anxiety. They’re not really sick, hypochondria is just their “quirk.”
The experience of being or thinking that you’re sick and looking for answers is the butt of a joke. The implicit message is that people shouldn’t seek information about their symptoms when they feel sick. Regular people can’t diagnose themselves because they are not doctors. Only doctors can diagnose sick people.
And doctors have made their disdain of the “Internet Doctor” or the “WebMD Patient” known, both in the media and in real life. Every medical show in the age of the Internet has episodes featuring characters who have used the Internet to check their symptoms and diagnose themselves. Every time this character pops up on any of these shows, the wise doctor reacts with either kind dismissiveness or outright disdain, depending on the personality of the TV doctor.
Unfortunately, these reactions of dismissal and disdain are not limited to doctors on TV. Doctors are not shy about saying they wish their patients would stop using WebMD. They say that Internet self-diagnosis makes for difficult patients who want unnecessary tests and are unwilling to believe what doctors say.
I was acutely aware of my desire not to be “That WebMD Patient” when I started to scour the Internet for information about my symptoms. But I didn’t know what else to do. None of the doctors I was seeing were taking me seriously. None of them were willing to truly investigate my symptoms. I figured maybe if I could give the doctors a starting point, they could take it from there. Of course, that’s not how it played out.
As soon as I said, quietly, tentatively, “I was reading…” I could see the skeptical glances, hear the exasperated sighs. I was dismissed even more readily. Anything I brought to the table was immediately brushed off. Not a single doctor even let me finish my sentence. They always cut me off with some version of, “You’re not going to get reliable information from the Internet.”
I always wanted to reply with, “I don’t feel like I’m getting reliable information from you either,” but I never did. I always kept my mouth shut, embarrassed and scared of being further scolded for the audacity of seeking medical information.
***
Sometime in 2014, I was sitting in my latest doctor’s office, waiting to go over the last round of test results. We’d been here dozens of times since the first time I called him two years before. Literally dozens of times I’d sat in that same chair and listened to this kind, patient doctor explain tests.
Blood tests. At one point I was having my blood drawn every week. My fear of needles dissipated out of necessity. Spit tests. I’d spit into more sample cups than someone who chews tobacco spits into the nasty cup they carry everywhere. Stool tests. Yes, cups of my stool sat in my refrigerator, waiting to be sent to out of state labs. Labs that charged me hundreds of dollars to examine my poop. Hundreds of dollars that weren’t covered by my insurance. Hundreds of dollars that I had to pay out of pocket. If I wasn’t a project manager for a tech startup, I would’ve gone broke from all the tests.
I was waiting to hear the same thing I heard every time we reviewed my test results — “these numbers are off, but they don’t give us a great idea of what’s wrong.” Waiting for him to explain the results of each individual test, to tell me about how abnormal my results were. Waiting for him to say one more time that the results didn’t add up to a diagnosis.
I’d been hearing this same speech for two years. As I listened to the same speech, again, I nodded and made the appropriate facial expressions to express my comprehension. But inside I was screaming, sobbing, raging. Because I already knew he was going to say this. I Googled all of my test results before I walked into the office.
I got tired of waiting to hear his interpretation, the same speech. I got tired of getting my hopes up that maybe, maybe these test results would give us some answers. So, I started logging into my doctor’s web portal and copy/pasting all my test results into Google. And I got the same answer that he was giving me — your test results are abnormal, but there’s no diagnosis that fits. There’s something wrong with you, but even the Internet doesn’t know what.
As the test results got more baffling, my doctor’s diagnostic guesses, which were never more than guesses, started to sound a lot like WebMD. Each time we got abnormal test results he’d offer a list of possible diagnoses that included everything from the mundane — like food allergies — to the life-threatening — like cancer.
At one point he was fairly sure I had leukemia. I even got a bone marrow biopsy. I went through one of the most painful diagnostic tests out there just to find out that, though my white blood cell counts were dangerously low, my bone marrow was completely fine. I was definitely happy to not have cancer, but to be honest, I’d gone into the test almost hoping it was cancer. Having cancer would be better than not having a diagnosis, yet again. That probably sounds crazy. It probably was crazy. After four years of being sick and two years of tests without a diagnosis I felt pretty crazy.
When he told me the bone marrow biopsy came back negative, and gave me the same speech again, I didn’t feel anything. I was too numb. I calmly told him that I needed to take a break from diagnostic testing. I needed a break from hearing that yet again, we didn’t have a diagnosis.
He tentatively agreed and told me to get in touch when I was ready so he could schedule a new round of tests — hormone testing since this was the next diagnostic path he wanted to explore. In the meantime, he suggested I go off my hormonal birth control. I agreed and scheduled the appointment to get the Paraguard IUD inserted so I could get all the hormones out of my system before we scheduled more tests.
A few months later, during a particularly awful period, I was on Google yet again. I typed in all of my regular symptoms — diarrhea, nausea, vomiting, abdominal pain, cramps, migraines, hormone imbalances, hypothyroidism, low white blood cell counts, weakness, fatigue, compromised immunity — and this time I added one more symptom I’d never added before: abnormal menstrual cycles. I’d never added it before because it had never seemed like a symptom to me. I’d always had bad periods. They were always painful; I always bled a lot. I didn’t know these were symptoms. I thought that they were just part of having a period. In fact, numerous doctors had told me that this was normal and nonchalantly prescribed me another form of birth control. But as I lay in the fetal position on the floor because my cramps were so bad, adding abnormal menstrual cycles to my symptom list seemed like the right thing to do.
The first result on Google was a blog about Endometriosis. I’d never heard of it before. I clicked on the blog and read a few of the entries. It was like reading my life story. Then I went into the forums on the blog and started reading what hundreds of women had shared about their experiences with endometriosis. Their symptoms matched all of mine. And they talked about more symptoms that I hadn’t identified as symptoms — pain during sex, pain during gynecological exams, sharp pelvic pain. They shared their experiences with being dismissed by doctors, with being misdiagnosed for years.
For the first time since I’d gotten sick, I felt seen. I felt validated. I felt like I had found the answer.
I began to scour the Internet for everything I could find about endometriosis. The more I read, the more convinced I became that my diagnosis was endometriosis. And the more I read, the more heartbreaking stories I found about women with endometriosis and similar reproductive illnesses — PCOS, Adenomyosis, Fibroids, uterine cancer — who were told by doctors that there was nothing wrong with them. I discovered that it takes an average of seven and a half years to get diagnosed with endometriosis after the onset of symptoms. Why? Partially because women think that suffering is part of having a period so they don’t seek treatment, and partially because doctors don’t believe women when they do seek treatment.
I gathered all my research, called my doctor, and scheduled an appointment instead of scheduling the tests he’d wanted me to schedule. When I sat down in his office, he started by asking if I needed more information about the tests he wanted to run before we scheduled them.
I shook my head and said as firmly as I could, “I have endometriosis.”
I braced for the eye roll, the dismissive hand wave, the exasperated sigh. But they didn’t come. I watched intently as my doctor’s face went from intrigued, to shocked, to ashamed. He literally hung his head, unable to make eye contact with me for a moment.
When he raised his head again, he looked me right in the eyes and said, “I’m so sorry. I should have seen this so long ago. I should have asked you about your menstrual cycle. Believe it or not, my wife is a doctor who specializes in women’s health. If you’d seen her instead of me, she probably could’ve diagnosed you at your first appointment.”
He went on to explain that his diagnostic perspective had been rooted in my GI symptoms since that was his specialty. He was also humble enough to admit that as a male doctor viewing my menstrual cycle as a possible symptom hadn’t occurred to him.
If I’d seen a woman, one with a different specialty, it might have saved me two years of diagnostic hell.
He referred me to an OBGYN who did, in fact, diagnose me with endometriosis at my first appointment. I cried when she confirmed my diagnosis. I felt the weight of years of not knowing lifted. Even as she explained that endometriosis was a chronic illness, that it would probably get worse over time, that I would probably need surgery, I was overjoyed. I finally had a name for the way that I felt. I finally had proof that I wasn’t making it all up. I finally had confirmation that I was really sick.
I only got that confirmation by being “That WebMD Patient.” I only got my diagnosis because I went to the Internet to self-diagnose. The thing that I wasn’t supposed to do because it makes me a difficult patient, because I’m not qualified to make a diagnosis, because I’m supposed to trust doctors, is the only thing that allowed me to get well.
Unfortunately, my story isn’t unique. My story is just one of thousands I’ve seen shared by Spoonies all over the world. The common thread in all these stories is that we had to find our own information; we had to diagnose ourselves because doctors refused to diagnose us. Why? Because we weren’t taken seriously. Because our pain wasn’t real enough. Because our symptoms didn’t make sense. Because the doctors we saw looked for answers in their own specialties, never thinking to look for systemic, chronic diagnoses.
Spoonies are the WebMD Generation. Adults who’ve had the Internet since we were tweens, if not our whole lives. We’re the generation that doesn’t take “I don’t know” as an answer. We relentlessly seek out the information we need to answer any question we have and we ruthlessly advocate for ourselves when we aren’t heard. And when doctors tried to tell us that we weren’t really sick, we turned to the only place that gives answers when there are none to be found IRL — the Internet. Instead of being insulted when we were called “Internet Doctors” or “That WebMD Patient” we insisted that doctors paid attention to the answers we found until we got confirmation of the diagnoses we’d already made.
Because if we hadn’t, we’d all still be sick.
