by Abby Norman
Throughout my teen years I developed an online voice through instant messaging and the early days of social media. I carefully curated a Myspace page, and I changed my AOL Instant Messenger handle as though it were a digital mood ring. The Internet also provided me with the same kind of reassurance as the library, or a set of encyclopedias. Before Google, there was Ask Jeeves, and trust me: I asked Jeeves a lot of weird shit. There were so many esoteric questions for which I had not yet found answers in books, and the Internet provided me with new avenues for exploration.
After I got sick, the Internet became an invaluable research tool—and a conduit through which I could connect to others, to know that I wasn’t alone. I hated to think that there were other women out there, awake in bed at odd hours of the night, staring at their computer screens with the same kind of desperate, validation-seeking gaze I wore—but at the same time, I was terrified to think that I was experiencing something that was without precedent. I didn’t want to be a pioneer in illness.
I wrote, I read, I listened—and I began to realize that the patients I’d been connecting with online shared many of the same fears. The same story repeated itself over and over and over again: my doctor didn’t believe my pain was real, I can no longer have sex, I’m nauseated all the time and I can’t eat, I’m so bloated I look five months pregnant, I’m so exhausted all the time I’m losing my ability to work, I’m terrified I’ll lose my job, my husband, my children…
Many of these women were on forums reporting their symptoms, their experiences, without having the anchor of a diagnosis. These women were from all backgrounds, all races, all ages. Some had mothers or sisters or aunts with endometriosis, or uterine cancer, or ovarian cancer. Some worried that they had cancer. Some worried that endometriosis might lead to cancer. Many worried they would never get pregnant. Some had managed to get pregnant only to have their symptoms return with a vengeance once their pregnancies ended. Many were no longer able to enjoy sex, but were having it anyway because they were afraid of losing their partners. Of losing themselves. Many had either lost their jobs, and been forced to go on disability, or were dangerously close to doing so. Almost all said that they felt alone, that no one in their lives really understood how they felt, because they didn’t look sick most of the time.
Endometriosis is sometimes called an invisible illness, as a person may look fine on the outside, with no obvious sign that she is ill. It’s an interesting characterization, but there is another meaning as well: sometimes endometriosis lesions are clear, and are thus even invisible to a surgeon staring directly at them. The lesions may be detectable only through tissue biopsy, which may or may not be performed, depending on the surgeon’s level of knowledge.
It’s true that those suffering from endometriosis haven’t lost all their hair from chemotherapy or taken on that gray hue of a person with a terminal illness. They are not wheelchair bound or using a cane. They may well get up every day, wash their hair, put on makeup, get dressed, and go to work.
But they do suffer, likely far more than even those closest to them know. Especially in the moments when they are alone and can let their guard down. For me, it was usually in my car that I felt safe to fall apart, where I hid away to nap or fend off a bad wave of nausea. I’m sure everyone has their own place to escape to, or to sequester themselves where they can suffer privately. Lonely places that swallow the sounds, smells, and sights of pain, sucking the proof right out of the marrow, washing it away so that not even a filmy residue remains.
It would be noble of me to say that I started writing about my experiences because I wanted to reach out and help, but that impetus came later. At the beginning, I was writing purely as a means to understand my own grief. When I started yelling into the void of the Internet, I was startled when it began to whisper back.
Other women like me were out there, dying to be heard. After spending a few months digging through and considering what was in my own medical history, I put out a simple call on Twitter: if you have endometriosis, please answer these questions. I specifically encouraged people of color and LGBTQ folks to participate, as I was aware that their perspectives were woefully underrepresented. I attached a link to a Typeform I’d set up, which allowed people to answer the questions, include some demographic information and contact info, and choose whether they wanted to remain anonymous.
I received a small number of responses over the next week and was amazed at how varied they were. A few people I already knew—I had met them on the Internet through our mutual endo struggles—responded—but even more strangers answered. As I read through the responses and began to put together the larger picture of what life with endo is like for those of us who live with it, I found myself with more questions than answers.
I also started talking about endometriosis more openly offline, and when I brought it up, I found that I got one of two responses: “What’s that?” or, “Oh, my [mother, sister, second cousin twice removed] has that!” The latter came a lot more frequently than I had expected. I noticed that it was often said dismissively, like, “Yeah, my sister’s a brunette, too.” At first I didn’t challenge it or offer up anything else, for fear that I was going to overshare. But eventually my curiosity got the best of me.
Did people not realize how debilitating this condition was? That’s a given, for those who don’t know someone with it, and of course their ignorance is obvious, maybe even slightly forgivable. But for those who knew someone with endo, I couldn’t believe how blasé they were about the whole thing. So I started asking more questions, risking sounding like I was entitled to other people’s business. People often just shrugged, saying stuff like, “Well, she had trouble getting pregnant,” and didn’t seem to know much else. I’m sure if I’d pressed further, asked them to describe their family member’s or friend’s health, they would have shrugged and said, “Fine.”
I had a sneaking suspicion that if I were to actually talk to the women in question, rather than talking about them, their version of endometriosis would probably be quite different. And the word “fine” probably wouldn’t factor in—unless it was said through gritted teeth.
After the Huffington Post picked up a piece I wrote about endometriosis, women started emailing me or reaching out to me on Facebook to share their stories, or to tell me that I’d given them a voice. They’d taken my article with them to their doctors, or shown it to their spouses. They felt validated. I’ve lost count of the women who have emailed me to say, “Thank you for making me feel like I’m not crazy.”
Although these emails were gutting and overwhelming, they so closely mirrored my own experience that I couldn’t help but feel validation myself. I hated thinking that so many women were suffering the way I was—but what were the odds we were all just “making it up”? There’s strength in numbers, right?
IN THE FALL OF 2015, five years after the life-altering shower, I gave a presentation at a medical conference at Stanford University. Stanford Medicine X is designed to make patients equal stakeholders with physicians and researchers—no small task when you consider the hierarchy that dictates the health-care system in our country. I’d heard about it on Twitter and submitted a presentation for consideration earlier in the year. It wove my personal narrative with that of others, and explained the process by which I became an advocate for myself as I journeyed through the US health-care system. My perspective was unique, because at that point in time, I had been working in health care for several years and was well acquainted with the system’s dysfunctions and idiosyncrasies. I also believed that the hierarchy in which it operated had long ago ceased to work, and was more than happy to challenge its integrity. Mostly, though, I was looking forward to connecting with other patients with chronic illnesses who had largely diagnosed themselves and devised innovative and practical ways to deal with their day-to-day needs.
Many of the patients at Stanford Medicine X were medical “zebras” with rare conditions, or diseases for which there is no known cure. They are
pioneers not just in their own care, but in the care of anyone else with their condition. These patients are extraordinary individuals who, instead of letting their disease strip their lives of meaning, have forced it to give them a sense of purpose. They are advocates, luminaries, researchers, teachers, brilliant and passionate speakers—and above all, they are people who have been empowered by the fragility of life. Being among them, sharing my experience, made me consider that maybe I had not experienced a total loss in being ill, but instead, just a seismic shift in priorities.
When I finished my presentation, a physician approached me with a rather grave expression on his face. It took him a moment to gather himself, to get out what he wanted to say.
He looked at me quite intently, and at first I thought maybe he was going to ream me out because I had his profession. But as I watched him, I realized he was actually somewhat teary-eyed. He wasn’t angry, he was moved.
“I can’t stop thinking about how many patients like you I’ve sent home,” he said, shaking his head. “How many patients I might’ve done this to.”
Before I departed health care entirely, I left the medical records department and took a temporary job that would allow me to put my health literacy and patient advocacy experience to good use. The program was based out of the hospital system at large, not specifically the hospital I’d been working in, so early on in that process I was given the grand tour of the primary hospital’s campus. Part of a larger group of new hires, I was walked through a literal Hall of Fame that was lined with photos: one for every CEO the hospital system had had since its inception. Although the photographs became of increasingly higher quality, and evolved from black and white to technicolor as we made our way through the decades, there was one very noticeable constant: they were all men. I knew this wasn’t true at every level: I’d sat on committees myself, and taken notes for my boss in more than a few midlevel meetings over the years, so I knew that there were women in leadership roles—but only up to a certain point. I was more familiar with the administrative power structure in health care than the clinical one, but in casual conversation with physicians and nurses over the years I’d certainly gleaned that there was, undeniably, a “boys’ club.” No girls allowed.
INEXPLICABLE COINCIDENCES, CONNECTIONS, and an overdosing of pure luck has described my life thus far. I’m not sure if the connections are abundant or if I’m just unusually good at seeing them, but those breaths of splendid fortuity have saved my life on more than one occasion. Certainly they are always welcome, always enchanting.
I met Lorraine on the Internet because we both were part of an online group that faithfully watched Downton Abbey together each week and then thoroughly critiqued it. I actually wrote the weekly recaps for The Mary Sue during the last season, which bolstered my freelance writing career and legitimized my Tumblr rants. Lorraine, a fire-haired, twenty-something nurse from New Jersey, is a magnificent cosplayer. Her legendary collection of hand-sewn costumes, wigs, accessories, and props is astounding to my untrained eye, and I marvel at her many handicraft skills.
Although I had talked to Lorraine and the others in the group every week for a year, we’d never met in real life. I was preparing to take a trip to New York City to visit Rebecca, who had been living in Brooklyn since graduating from Sarah Lawrence. Lorraine lived in New Jersey, so it would be easy to meet up. She mentioned that she could come into the city with her father, who worked at Weill Cornell Medical College in Manhattan. We could meet for lunch, and since I had worked in health care and understood medicine well enough to appreciate its many exciting applications, she could show me around her father’s office at the Skills Acquisition and Innovation Laboratory.
Lorraine looked exactly like she did in her online pictures, which I thought was hilarious, because oftentimes, that’s not the case. We hugged, immediately fangirled over each other as her father procured some bagels, then carried on along Sixty-Eighth Street toward First Avenue, where we’d spend the better part of the day at Weill Cornell. When I had a chance to chat with her father, Dr. Rosenberg, and thank him for allowing me to visit the skills lab (which I was spellbound by), he asked me about myself and I explained the situation regarding my diagnostic odyssey and the research I was doing.
As soon as I mentioned my study was on endometriosis, he beamed. The universe had somehow handed me Lorraine, who led me to Dr. Rosenberg, who just so happened to be best friends with Dr. Harry Reich.
“Oh, Uncle Harry!” Lorraine laughed, “Yeah, he’d be a great interview.”
My jaw nearly hit the floor. Dr. Reich was a world-renowned pioneer in laparoscopic surgery. He was also heavily involved with the Endometriosis Foundation of America (EFA), which I knew was an invaluable resource and had been eager to learn more about. Dr. Reich was certainly positioned high on the list of people I’d want to discuss endometriosis with.
“Here’s his email,” Dr. Rosenberg said, dropping his fountain pen back into the pocket of his white coat before leaving Lorraine and me to head off for lunch and a trip to Lush—the environmentally conscious bath bomb emporium you could smell from a mile away. “Tell him you’re friends with my daughter.”
So that’s exactly what I did. As soon as I got back to Rebecca’s apartment in Brooklyn that afternoon, I plopped down on her couch and crafted an email. Dr. Reich emailed me back almost immediately, saying simply, “Call me.” He included his phone number. I never expect people to just hand out their phone numbers anymore. I mean, talking on the phone seems like a strictly personal activity to me, or a desperate matter of debt negotiation. I have an eternally dwindling list of people that I actually talk to on the phone, and the ones who remain are people with whom I am very intimate and comfortable. The only other time I use the phone is to call a credit card company or schedule a dentist appointment, and I usually have a few hours’ worth of anxiety preceding the event.
Since I was calling Dr. Reich the same afternoon I’d emailed him, there hadn’t been enough time for any apprehensiveness to fester, so I was fairly calm and collected. Besides that, given Dr. Reich’s state of renown, I naturally assumed he’d think me a peon compared to the people he normally spoke to. So when he answered the phone and starting telling me, with a rather easy and casual tone, all about his connections to Maine, and his current level of stress related to helping plan the EFA’s next conference (which was less than a month away), I was pleasantly surprised and quite relieved. He was extremely personable, and naturally wanted to know where in Maine I was from. He was currently visiting his grandchildren, he explained, and every few minutes I’d hear a child squealing or a dog barking, or he’d turn the receiver away from his mouth for a second to say something to someone. He told me he was recovering from surgery, chatting me up like we were old pals. Then, he volleyed me a most unexpected question: Would I like to speak at the conference as a patient?
I didn’t hesitate to say yes—mostly because he’d also prefaced the offer by telling me about the vacancy he still had to fill for the conference’s slate of speakers. But I also figured that accepting his offer would be even better than my original plan, which had been simply to attend as an observer, a writer, and a patient who was forever trying to unravel the mysteries of this disease. Here was one of the experts asking me to be a part of it at a much higher level, and from there, the view would no doubt be far more interesting.
WHEN I RETURNED TO NEW York City a few weeks later to attend the conference, I was in the middle of a pretty bad flare-up of endo symptoms, which seemed fitting. The first day was Patient Day, where the physicians came together with patients and other people who were not necessarily interested in the academic part of the conference, but still wanted to learn about endometriosis. They could come hear some patient stories and learn about research efforts. I was to speak in the afternoon, which seemed impossibly far away, considering that within the first hour of being there, I’d soaked through three or four pads and taken two anti-nausea pills.
The presen
tations weren’t that revealing to me, and I’m sure they weren’t to many of the other patients in the room, either: we hear the same story over and over again from one another, hear ourselves telling it again and again to doctors, friends, lovers, bosses—this inescapable narrative having become something that none of us wants to be a part of, but at the same time, the very proof that we are not concocting some elaborate lie about the inner failings of our bodies. We are forced to seek out the suffering of others to validate our own.
Besides, the whole morning was really geared more toward doctors. I don’t think it was intentional—but when medical professionals give speeches, they give speeches. By this time, I had a not insubstantial medical background, so I followed most of what they were saying, but I wondered how those in the room who did not understand felt. There were women in the room who, like me, probably understood but could not follow or make sense of the jargon, because they were exhausted, and in pain, and their intellects had no room to open up and bloom under the weight of their suffering.
The moment of revelation happened, for me, not during the speeches, but at a very specific moment during the first coffee break, when a large group of women tried to cram into a very small, two-stalled bathroom. I’m an observer by nature: had I not channeled my observations into writing, I would have liked to become an anthropologist. That bathroom was the purest, most unfettered kind of vignette that could have been in someone’s case study on endometriosis. There we were, leaning against the cool tile of the bathroom wall or trying to suck in the fresh April air by crowding before the smallest of cracked windows next to the sink. We groaned and gritted our teeth, the pain we’d been sitting with finally more than we could bite down on, the nausea burning our stomachs, fatigue glazing over our eyes so that we had to remember to knit our brows together (so we’d look interested and not exhausted).