by 2015 Stanford Medicine X ePatient Scholar, Abby Norman (@notabbynormal). Presented September 28th, 2015 at Stanford University.
“Each patient carries his own doctor inside him.”
― Norman Cousins, Anatomy of an Illness
It all started in Bronxville, New York in September of 2010 when I took what I now consider to be the worst shower of my life. I lifted my arms to rinse my hair and pain shot through my belly as though I’d been stabbed. But there was no Psycho-esque horror movie playing out in my dormitory bathroom: the killer was inside of my body.
Five years ago, I spent the last week of September and the first week of October in and out of the hospital. I know this because social media, email and other portals of technology can take me back there whenever I dare enough to go. I can watch my Facebook statuses become progressively more frantic. My emails to my professors shorter, apologetic. I can see — almost in real-time — how I went from a thrilled-beyond-measure college sophomore to a terrified, emaciated, wandering girl of nineteen.
Of course, I can corroborate my social history with my medical records, which became my coursework that autumn. Stacks and stacks, despite the healthcare system’s drive for digital, still exist in my life and probably always will. I was so ill that if not for those records, and my own real-time account via emails and social media, I wouldn’t remember a thing about the fortnight during which my entire life upended.
I know that on September 30th 2010 I began a 48 hour movie marathon because I could not leave my bed. It ended with me being readmitted to the emergency room where a well-meaning physician asked me how I knew the pain and nausea had gotten bad enough to warrant another hospital trip.
“All I’ve done for two days is watch Barbra Streisand movies,” I choked.
He looked at my roommate gravely, “That is serious.”
By October 5th, 2010 I had returned to my home state of Maine with no place to go and no idea why I was so sick. The school had promised to hold my scholarship, a full merit-based scholarship which had been the only way that an emancipated minor from podunk Maine could have landed at one of the top liberal arts colleges in the nation.
Spoiler alert: I never went back to Sarah Lawrence.
Overnight my education went from the classroom to the operating room. I began a five year journey that, while it appeared to be moving me forward, managed to somehow jilt me back in time.
When it comes to women’s health, there are many attitudes encountered in the current medical culture which are strikingly reminiscent to turn-of-the-century modalities; young women are still often assumed to be “busy” or “high achieving” and “stressed” — the modern day equivalent of “hysterical” or “nervous”.
The first few times I was admitted to the emergency room I was chided for being a “Sarah Lawrence girl”: bright and wound-tight.
Imagery yielded nothing “definite” — I was given two courses of very strong antibiotics and told to drink cranberry juice for my bladder infection. Which, presumably, I got from having casual sex.
Even though I was a virgin.
Throughout all of this, I did what I think most people would have been tempted to do — I Googled. And I Googled deeply. I was convinced it was appendicitis — not acute, but chronic. When I got my medical records, the radiology report said “periappendicial fat stranding,” — the radiologist recommended that the emergency room doctor consider appendicitis based on my clinical presentation. Whether or not it was in his differential, I was prescribed a course of Cipro, an antibiotic often giving to patients with UTIs. I always wonder if that was the reason the appendicitis smoldered rather than becoming irrefutably acute.
Over the next few months, after I’d been forced to give up my full scholarship and leave NYC, couch-hopping as a woefully uninsured twenty-something, the subject of my “neurosis” came up often. During the first six months of my illness, I was told that I was frigid, nervous, high-strung, depressed, anxious and —
“Probably molested as a child and this illness was my body’s way of trying to deal with it”
That last one produced a silent guffaw, to which I replied to the doctor: I reject the notion that my appendix is the site of my emotional turmoil.
I felt as though I had traveled back in time. It wasn’t 2010, but 1910. Doctors prescribed me vaginal stretching and Kegels, gave me sedatives, told me to get fresh air. The pain that spread through my middle, gripping me by the iliac crests, felt like a corset, pulling me tighter into my self with each month that passed. I was homebound. I did a lot of handicraft. I fainted. I was living like a delicate Victorian lady.
With one major distinction: I had wifi.
Despite the fact that my symptoms were largely abdominal (persistent LRQ pain, chronic nausea, early satiety, a forty-pound weight loss, muscle wasting and wonky blood work) because I had also been experiencing some issues with my period, and the initial ultrasounds I had revealed a cyst on one of my ovaries, the reproductive health route was pursued. This wasn’t wholly incorrect, it just would prove to be the lesser of two bodily evils.
I had my first diagnostic laparoscopy in December of 2010.
The surgeon was happy to report she thought she had found the culprit — not only did I have endometrial lesions in the posterior cul de sac, but I had a sizable endometrioma on the fimbria of one fallopian tube — which had, with its size and position, torqued my tube out of alignment. She had not been comfortable removing it, however, and instead, drained it and used a surgical mesh called Interceed to staunch it.
She released me confident that I would be feeling better.
By the next spring, I felt considerably worse. My pain remained and had begun to spread. I continued to lose weight — at one point my former strong, dancing body wasting to hardly one hundred and ten pounds on my five foot six frame.
I was accruing more medical debt by the minute and couldn’t work, since most days I could hardly lift my body from bed. I tried to at least do some work on my degree at the local university extension, but considering how much debt I was already in, by the summer I had been forced to suspend my studies again.
At least formally. My course of study shifted from art history to anatomy and physiology. Instead of reading classic literature, I read medical journals. I had always been a wordsmith but soon my vocabulary became saturated with medical terminology. I devoured Latin, replaced my Grey’s Anatomy DVDs with a hardbound copy of Gray’s Anatomy from my local used bookstore. I began my self education thinking that if I was going to die, at least I would know why.
From then on, whenever I found myself in the emergency room or my doctor’s office, I was hoping I could verbally articulate what my body failed to show. I never wavered in my symptomology, I just became better at explaining it. I brought research. Case studies. I asked for more blood tests — but not a wide, all-encompassing panel — specific ones that wouldn’t be wasteful. Inflammatory markers. Thyroid panels. CA125.
For a while my doctors humored me, yet they still insisted upon having me run the gamut of treatments — meds, which only masked the pain and even then it was never gone for long. Deep tissue massage when they thought my belly pain was muscle wall pain.
Each time I had a trans-vaginal ultrasound, I begged them to be gentle, because I was still a virgin — yet there was no way for these procedures to be comfortable, and so many nurses held fast to my hand as I cried, the agony of being torn apart again and again.
Years passed. I moved. I got a job in the same hospital I usually landed in the emergency room of. I filed medical records and worked with physician dictation, a job I was unusually good at because of my medical terminology. Despite being sick most of the time, I did pretty well. I could sit for much of the day and, if I felt truly awful, the ER was never more than an elevator ride away.
While biding my time, I continued my research in the hospital’s medical library. I came in early, stayed late, or had my lunch in that small room, leafing through medical textbooks. I asked to observe surgeries, an autopsy, get certified in basic life support, stroke training — even HAZMAT — all of which I did with a keen eye and a fearful but willing heart.
It was during those years in the basement that I realized it was no longer about my journey — people were suffering at the hands of an inefficient system all around me, and if there was no hope for me, maybe I could take what I knew and try to help others. I started writing, and connecting using social media — places like Twitter and Medium, websites like xoJane and The Huffington Post. I started to tell my story.
And I was shocked to realize that people were listening.
In the spring of 2013, I went back to a surgeon I had consulted with several years earlier and urged him to do another exploratory laparotomy. I had been walking through the hospital corridors the previous week and with each touch of my heel to the floor, a searing pain ripped through my abdomen and pelvis. To me, it felt like peritonitis.
“You are either brilliant — or the most well-educated hypochondriac I’ve ever met,” he said. But he humored me. He scheduled another surgery.
The only thing I remember is waking up in recovery, being fed ice chips, and smiling at the absence of something. When I asked what it was that had been removed, the nurse laughed,
“You were right,” he said, “It was your appendix.”
For three years, my appendix had been chronically inflamed, slowly poisoning me. Whether or not it was ever linked to my concurrent endometriosis, I’m still not sure.
The problem was, it was an uncommon occurrence. The surgeon was uncertain what the future of my intestinal health would be. Considering I also had endometriosis, it was already hard to parse out what symptoms were from what. But that was a journey I could begin at last, since one very painful variable had been removed.
I went back to my research. Back to social media. I shared my story, wider this time. I yelled it to anyone who would listen. I spoke candidly about how my gender stalled a diagnosis. How my reproductive organs obscured a poison in my body, because my womanhood was so stark and imposing that no doctor dared look away for another answer.
I ranted and raved about how hard I bled, how my sex life was a joke because I was too scarred, physically and emotionally, from those afternoons spent splayed on an exam table. I told every single girl in my life about endometriosis. I wrote it on napkins, on the palms of their hands, in instant messages and emails. I casually dropped the words “vagina” and “cervix” into dinner conversation. I held the hands of those I could, and extended virtual hugs to those who lived miles, or a world, away from me.
And then, the emails started. Then the tweets. Then the messages on Facebook.
“Your story saved my life.”
“Your story gave me hope.”
“I took your story to my boyfriend, to my mother, to my doctor.”
The doctors always say they are sorry, and I believe them.
In many ways, my experience as a woman navigating the healthcare system in 2015 has not been dissimilar to what a woman’s experience would have been in 1915.
I’ve been told it’s all in my head, or in my hysterical womb, more times than I can count. But I’ve challenged the healthcare professionals I’ve worked with to come into the 21st Century with me by utilizing social media and empowering myself. In that process, empowering others.
Having worked in healthcare alongside physicians who were, at times, the same ones I was slapping a copy of The New England Journal of Medicine in front of, I had empathy for them as they sat across from me, apologizing — not just for the lack of options, but for their inattention, their shoddy documentation, their incorrect CPT codes. My foray into healthcare administration was brief — because the inefficiency terrified me. For a moment I thought I could change the culture, but I couldn’t survive in it long enough to find out.
So, I went back to the internet culture I knew that I could live in — and I wrote.
And I tweeted. And I blogged. And I kept reading, and I kept listening.
And I am listening.
And what I’m hearing is this: “Each patient carries his own doctor inside him.”
Mine helped me learn that endometriosis affects nearly 1 in 10 women.
That I was lucky, because my diagnosis came within the first five years of my search.
Most women will wait at least a decade.
There is no cure. And the available treatments may not work for all women, or even the safe woman during the course of her life. The disease is chronic and progressive.
Endometriosis is a chronic, progressive disease. It may have autoimmune components. In my case, it made what should have been a fairly uncomplicated bout of appendicitis into a nightmare that almost took my life and permanently compromised my intestinal health.
On social media, we women connect often with the hashtag #endosister. And it really is a sisterhood. A sisterhood of the traveling endometrial tissue. Because that’s where our connection begins — our traveling uterine lining. But once we find one another, learn that we are part of that sisterhood, the connections abound. Our failed relationships. Our horror story hospital visits. Our failed treatments. Miscarriages. Infertility. Pain — physical yes, grinding unrelenting pain. But also emotional pain. Spiritual pain. Depression. Anxiety. Poverty. Disability. Hopelessness.
Feeling unheard by family. By friends. By medical professionals. By history — we call out to the internet, hoping that someone out there might be listening.
Sometimes it feels like we’re screaming into the void.
But sometimes — the void is where we are finally heard.
My first book, a memoir called FLARE, is forthcoming from Nation Books. Follow me on Twitter and #AskMeAboutMyUterus!