I’m also struck by the number of times my notes reflect that I reported the pain and vomiting became worse during my period. That, along with the telltale signs of an inflammatory disease in my blood work, should have pointed the doctors to endometriosis. At the end of the stack of papers, I found a number of ultrasound reports of my abdomen, all of which were reported to be ‘normal’. However, the ultrasound reports themselves – which I now have access to – consistently showed a large amount of free fluid in my Pouch of Douglas, which often indicates there is endometriosis in that area.
In another act of determination to prove that my illness was brought on by my audacity to be having sex at eighteen, when I reported an episode of bleeding so extreme that I passed out, the doctors decided I had had a miscarriage. This was unlikely, I explained, as I had a long-term partner and was very responsible with the contraceptive pill, but that didn’t seem to matter all that much to them.
It seems so cruel to sit in front of a stack of old scribbled notes and blood tests and pathology results that tell you that you weren’t, as the doctors said, ‘in fact completely healthy’, but that you had a serious and permanent condition and desperately needed treatment.
I cried for how much they had taken from me – my autonomy, my health, my resilience – and I couldn’t decide whether to put the medical records away somewhere safe or burn them so no one would ever know how much they degraded me, how foolish I had been.
The problem was not medicine itself; the answer was right there on the pages. The problem was that no one was looking for it.
A few days before Christmas in 2010, I lay in a hospital bed after another emergency room visit and another surgical procedure. I felt exhausted. A psychiatric nurse kept coming in and out of my room, asking me about my plans for the holidays. A gynaecological surgeon came to my bedside and told me he thought he knew what was wrong with me.
He explained that he thought I had a gynaecological condition that had affected my uterus, my ovaries, my bladder, and possibly other organs too. It was called endometriosis, he said. Even after months of exploration into every crevice of my body and my personal history, I had never even heard the word before. I didn’t understand what he was saying, but he seemed so sure of it. I felt comfortable in his presence.
He explained that endometriosis is a disease of the tissue in the uterus. In women who have the condition, the tissue grows outside the uterus, in all sorts of unsuitable places. The tissue – called endometrial cells – can grow on various abdominal organs: the bladder, the bowel, the ovaries, the kidneys.
The abnormal cells spread, and can grow so much that they overrun these organs like a cancerous carpet. If it is particularly aggressive, the tissue can reach such a critical mass that it stops the organs from moving around in the body, trapping them and suffocating them until they can barely function. I wouldn’t learn this until years later, speaking to a doctor after an internal ultrasound – which I was very accustomed to by that stage – who told me my endometriosis was so bad that it had brought my whole abdominal infrastructure to a standstill.
The endometriosis, my surgeon explained, could be so damaging that it can cause other organic problems too. Kidneys, bladder, bowels. The endometriosis will destroy their functionality as it grows and spreads. And, he told me, it can be very painful.
He did the surgery and found a great deal of endometriosis as well as a related inflammatory bladder condition.
Sitting in his cosy surgical office, he showed me images of my organs from the surgery. It looked like an abandoned battleground: everything torn apart, shredded, bloody. Broken.
He paused and let me process the images. He watched my face as it moved from shock, to fear, to relief.
You didn’t make this up, he said. I’m not surprised you’ve been in so much pain.
In The Empathy Exams, Leslie Jamison reflects on what we mean when we talk about empathy. Is it enough to simply imagine the pain of others? Is it enough to imagine what you would feel like to exist in their body, in their life? Or is it more than that: is it the ability to not only imagine a person’s pain but to then calculate exactly what that person needs from you in order to alleviate a small piece of it? Reading this, all I could think about was that appointment. Even though I had never once communicated to that doctor, never even hinted, that my biggest fear was not being believed, he knew. And not only did he know, but he knew that he needed to legitimize my pain by voicing it. He knew my fears about my credibility ran so deep that he needed to wait until he had proof, hard evidence, of my disease before he could reassure me.
He never uttered the words until he knew they would mean something. He needed to puncture a self-doubt that was more pervasive even than I recognized.
I needed people … to deliver my feelings back to me in a form that was legible. Which is a superlative kind of empathy to seek, or to supply: an empathy that rearticulates more clearly what it’s shown.
That is how Jamison described her expectations of empathy. That is exactly how I felt about that conversation with my surgeon; that he was delivering something to me that I was too vulnerable even to know I needed.
He explained to me that my condition was aggressive, and that we needed a treatment plan. That it might affect my fertility, and certainly my quality of life. He explained that there was no cure, that there was barely even a consensus on a cause. He said I was very unlucky.
He told me he was sorry.
He told me we needed to do another surgery to scrape out the diseased tissue. He said it was likely the cells had torn holes in the linings of my organs; that I probably had masses of scar tissue floating around inside my body like castaway lifeboats. He explained that the surgery would be hard, but that it would help.
I loathed the thought of another surgery but I revelled in his certainty. He had answers. He had a plan. I waited, and I think I even started to feel better.
He explained that he would also inject Botox into my bladder to stop it from attacking itself and to ease the pain. He explained that Botox was a good tool to create an artificial barrier in the battleground my abdominal organs had become. I trusted him.
It was mid-2012. The surgery was scheduled for the week following our appointment. The pain was becoming unbearable, and I ached for respite. I was almost excited.
When I came out of surgery, the doctors told me it had been worse than they thought. I was re-anaesthetized to keep me under for the several hours they needed to rid my body of the disease. I vomited for two hours after I woke up. I was so tired.
The surgeons explained that the disease had created lesions and tears all throughout my abdomen, and that it had taken them hours to patch me up. They told me my bladder was angry and sore. They told me my appendix was covered in endometriosis, so they decided it would be easier to just remove it rather than spend hours scraping the diseased tissue from its walls. Finding this out caused me to feel a funny sort of grief: I longed for the return of an organ I had never needed, never used, one which was imbued with value only when its removal became a physical manifestation of my profound loss of control.
The next morning the doctors removed the catheter from my body and began the testing they were required to do before letting me go home. It was just some routine checks, the nurses explained. They had to make sure that my bladder was working and that all my critical organs were functional. Unfortunately, my bladder was so damaged from the surgery and the anaesthetic that it didn’t work. I failed all the tests. It was too dangerous to send me home. I stayed in hospital for days, hoping each morning there would be my last. After a week of this, my surgeon sent me home with my catheter and some complicated testing devices.
You’ve been in hospital too long, he explained. You’ll only get sicker.
He told me to go home and rest for a week, and come back, and they would disconnect the wires and see if my body was ready to work again. He told me he wasn’t surprised. Your organs have been through so much, he said. They are exhausted. They’ve
got no fight left in them.
I went home and lay in the spare room of my parents’ house for a week and cried. I wasn’t allowed any codeine in case it damaged my organs further, so I soaked in the bath for hours at a time, the steaming hot water my only hope for a natural painkiller. I barely moved. My sister was in the final throes of her thesis, but she set up a temporary working space in my parents’ living room to keep me company. At regular intervals she walked to the local shops to buy me cranberry juice: the one thing I was allowed to use to fight off developing infection.
I had panic attack after panic attack, convinced my organs had abandoned me for good. I called the nurses daily and implored them to help me. I cried often. I craved distraction. I begged for relief. I needed my body back. One night I called a friend in tears and told him I didn’t know if I could stand any more pain. I am ashamed to admit this, but in that moment I really meant it. I didn’t know how to keep going. What if I don’t get through this? I asked.
I’m not sure what I was asking exactly. My condition wasn’t severe enough to be life-threatening, but I felt as though it had the potential to change me in some deep, irreversible way.
You will, he said.
How do you know?
I was so used to people telling me it would be okay, that I would recover, that I could return to my life as a 20-year-old as if nothing had happened. I braced myself for one of those soliloquies.
He sighed heavily.
Because you don’t have a choice.
It was the first time I felt as though someone understood how far away I was.
This went on for weeks. My parents looked after me tirelessly and constantly found new ways to distract me. This was a routine they would perfect over the years that followed. Every day they brought me things to read that they knew reminded me of my other life: the newspaper, the Economist, novels I loved. In fact, years later I would be lying in a sterile hospital bed, unable to move or walk, and my parents would bring me the first of Ferrante’s Neapolitan novels. It’s only thanks to them that I got to choose Elena.
When I went back into hospital, they disconnected my body from its helpers and it came to life again. It was August 2012 and the winter sun felt as though it was shining only for me. My sister took me to Nando’s and I ate solid food for the first time in two weeks. We laughed for hours, filled with relief, and then I slept for three days straight.
I have had four more surgeries since that one, each an attempt to rid my body of its disease faster than it can grow. Each with a doctor I trust. Each one has been successful, but the condition is unstoppable. My doctor says that soon we will have to start talking about freezing my eggs; it is unlikely they will survive many more years in the war zone my body has become.
In 2014, I found myself pregnant. I was on the contraceptive pill and I was strict with myself about taking it at the same time every day, but like everyone else, I am human. I don’t know for sure how this pregnancy happened. It’s possible that I missed a pill, or took one too late. My doctors were astounded, delighted that I had been able to conceive despite my rampant disease. They told me seriously to consider keeping the baby because I might never get pregnant again. I was twenty-two.
But this is a miracle, they said, again and again and again.
Why would a doctor encourage a sick person, a girl who struggles every single day to look after herself, to bring a new person into the world? And why did this male doctor think he had any right to counsel me on my decision as to whether or not I should have a child at twenty-two? He had never even asked if I wanted children at all. Why would he presume to be a part of a decision like that?
One doctor also told me that sometimes when women get pregnant for the first time, the disease slows down. Sometimes it goes away entirely.
I held firm eye contact with him and said, No, a baby is not a Band-Aid.
I was so young and my then-partner and I were living in my parents’ house and I had been in and out of hospital for five years and my life felt like a mess so I got the abortion anyway.
I am an anxious person and that day in 2014, as soon as I realized my period was late, I ran home and took a pregnancy test. I went to the doctor first thing the next morning and he told me it was extremely early in the pregnancy. The abortion clinic wouldn’t let me have the operation until I was six weeks’ pregnant. I hung up the phone in the tiny office of the local paper I worked for and stared at a notepad I had been scribbling headline ideas on the day before. I wondered how I would get through those next two weeks, knowing there was something miraculous happening inside me, something I had never wanted but had morphed into a fantasy after being told I couldn’t have it, wondering if I might look back on this time and think how lucky I was, wondering if I could ever forgive myself for what I was about to do, wondering if I had the strength to do it at all.
Eventually, the weeks passed and I woke up on the morning of my appointment. I woke up scared and heavy with guilt. I dragged myself to the clinic. I thought about the fact that after all these years of emergency surgery, I was having one that was planned. One that I had chosen. How did I end up here?
I am strongly pro-choice and resisted any shame the doctors or nurses associated with this decision. I managed not to hate myself as the male protestors outside the clinic lunged at me as I walked in. But I did truly despise myself later that day, when I got home, with stomach cramps that left me curled in the foetal position in the shower, bleeding, admonishing myself for making a choice that caused extra pain when I had so much already.
And also, in the smallest, most apolitical part of me, believing what the doctors had said, asking myself: Why had I given up an opportunity that might never come around again?
I wish I could say this experience didn’t hurt me, but it did.
The surgery cost me hundreds of dollars. I told almost no one. So it went: more surgery. More trauma. More pain. More secrets.
I was deeply disconnected from my body during this time in my life already, but something shifted inside me after the abortion. It took something human out of me. Even though sex had always been painful for me, I suddenly stopped being able to force myself to do it. The thought of it made me feel sick with guilt. I kept running.
In 2015, I had a surgery that resulted from months and months of pain that was building again, worse than it had been in years, plaguing my body each day like clockwork. After the surgery, the symptoms didn’t let up. If anything, they got worse. I told my doctor this in a very weak moment, sitting in his office, exhausted, confused, afraid. He explained to me that I can never expect his surgeries to fix me. He told me I had a condition that no one could fix.
He explained that it was devastating that so few people – so few doctors – understood the condition. That so few medical professionals understood its symptoms, or knew how debilitating it could be.
This lack of understanding of the legitimacy of the disease is the reason I still pull taxis over in the street and pay them to let me lie down for twenty minutes, to calm myself, to let the painkillers I have just taken sink into my body; all to avoid ever having to take a day off. To avoid ever needing to explain myself. Until a sustainable treatment or cure is developed, regular surgeries are my only option.
Multiple studies have now connected severe cases of endometriosis to the physiological effects of sexual trauma. But I didn’t know that at the time of my diagnosis; I hadn’t even accepted that I had been assaulted. I was still so far from getting better.
In among all of this, I slowly learned to accept my chronic illness but I was entirely dissociated from its cause. Once, in hospital, I was reading The Empathy Exams again and I was struck by Jamison’s description of her anger at her own difficult medical situation. She wrote of her doctor:
Dr M. became a villain because my story didn’t have one.
I identified so strongly with those words that I cried when I read them. I thought of all the misplaced anger and hurt I felt at the fact that I was sick,
that I wasn’t getting better. That I would never get better. I imagined myself yelling at all the doctors who couldn’t fix me, demonizing them because my story had no demons.
Except that it did. My story had a villain, but I was too afraid to face him. My mind had erased him from the narrative because the thought of him was unbearable. I thought, in that moment, lying in the hospital bed, thinking of all the villains my story lacked, that this confusion was the greatest indignity.
What I didn’t realize then was that the indignity was far greater than I knew: the world had the answer to who had caused this pain, but it had kept it from me. Just like the memory itself, the truth of the connection between severe physical trauma and chronic illness was hidden.
This conceit made a spluttering fool out of me.
Later in 2015, in mid-November, I found myself, once again, in the emergency department of a Sydney hospital, doubled over in agony and shaking from head to foot. The doctors on call decided to do an MRI to check for inflammation of the bowel. They found that a section of my small intestine was markedly inflamed.
That night I was diagnosed with Crohn’s disease. I was put on a course of IV steroids and spent the next week in hospital. My body, it seemed, was in full-scale revolt. Still, it did not occur to me to think or speak of my assault. So, in my mind, my story remained untethered and devoid of appropriately directed cause.
What I would have given, in those moments, to know that my story could have a villain – a narrative – if only I were brave enough to see it. What I would have given to know there was someone to blame. That he was there somewhere, hiding in the darkest corners of my mind. That his face is permanently etched into my memory even though I will never know his name.
I had spent the years following the rape running so far away from myself that I thought the memory could not catch me. My life was an abstraction; I was a conscious being but I had no form, no boundaries. My body caused me so much pain that I refused to engage with it altogether. I only tended to it when it caused a crisis and gave me no choice. At all other times, I neglected it entirely.
I Choose Elena Page 4