The doctors were confused. My symptoms didn’t add up neatly. They couldn’t explain the vomiting. My urine sample showed an abnormally high white blood cell count and I had a fever but it didn’t seem like an infection. I saw three different doctors that night, each with a furrowed brow and a barely veiled air of impatience. I felt frightened that they didn’t know what was wrong with me. I felt exhausted from the fear and morphine. I felt guilty that I was making the doctors work so hard.
By the early hours of that morning, unable to find a more suitable explanation, the doctors had decided to treat me for a urinary tract infection. They filled my body with intravenous antibiotics; the sound of the drip mesmerized my addled mind.
But the pain didn’t go away. It would take many more emergency room admissions before I was referred to a specialist. Each time, I would sit for hours on the green chairs of the waiting room, in between being carted to ultrasounds and doctors’ rooms and blood tests. They would each present something slightly worrying – inflammation in my blood, strange movements on my ultrasound – but nothing conclusive. So they would treat me, again, for a UTI or a pelvic infection and send me on my way. I got the sense that they were glad to see the back of me.
On one of those nights in the emergency room, the pain was so severe that I could barely breathe or speak. I briefly lost consciousness on the sticky green chairs. The doctors thought I might have appendicitis. I didn’t.
After this admission, I was encouraged to see a gynaecological specialist. I complied. I made an appointment with a woman whose name escapes me now, and whose face I can barely remember. In fact, I remember almost nothing about that appointment except the alarm in the woman’s voice when I explained my symptoms to her. I told her I was in pain almost all the time. I estimated it was about an eight out of ten. I explained that no, it didn’t come in waves. It was constant. I learned the word ‘collicky’.
I told her it was very sharp for most of the day, like daggers. I told her that it sometimes dulled and felt more like period pain or the muscular pain I remembered from my gymnast days. In those moments, I said, it was probably only a six out of ten.
She looked worried. As the conversation wore on, my guilt expanded and I started to amend my experience to relieve the pressure I imagined she felt. I didn’t tell her about how frequently the pain induced vomiting. I didn’t tell her about the bleeding. Or the nausea. Still, she was alarmed. She said I needed a laparoscopy to find out what was going on. I told her I was too busy. She said it was urgent. She handed me a letter addressed to the triage department of the ER, instructing them to admit me immediately and prepare me for surgery. I told her I didn’t want to. She told me I could be in real danger.
The surgery found nothing. They checked for ovarian cysts, but I had none. They checked my appendix again, but it was fine. The gynaecological surgeon was impatient with me. I see so many young women who overstate their symptoms and won’t accept it when they find they are perfectly healthy, he said. It felt unjust. I wanted to protest, I wanted to tell him that I had tried to avoid being here at all, that I had said I was too busy. I did not choose this, I wanted to tell him, again and again and again. I would not choose this for anyone.
But my body was full of anaesthetic; the nausea from it so strong I was sure I would vomit if I opened my mouth. I wanted to stand up for myself, but I was too sick. Too tired. I fell asleep, feeling angry and confused, and dreamed about being eaten by human-sized cockroaches.
I lived like this for months. I was in and out of hospital every few weeks for the rest of that year. My existence was divided into the days and nights I spent in hospital beds and the weeks I spent clinging desperately to the functional, high-speed life I had perfected in the years before. I kept trying to go to lectures, to speak up in tutorials, to hold down my callcentre job. I pretended I wasn’t sick, with pain and desperation bubbling awfully close to the surface but never breaking through.
After some months of this, the facade of competence started to fracture. My sadness turned into anxiety and I stopped going out. The pain got worse; sometimes it was so bad I couldn’t move my legs. My iron stores plummeted from the bleeding. I lost my appetite. I barely ever made it to class. From what I can recall of those months, I think I mostly just lay on my couch with a hot-water bottle for each side of my abdomen and watched Titanic on repeat, crying like clockwork when Rose says, I’d rather be his whore than your wife.
I remember oscillating between total resignation and total panic, one moment feeling exhausted and cynical and the next, thoroughly convinced I was dying. Cutting through all of my madness was pure confusion, constantly wondering how it could be that my body was being assailed by a malevolent predator that no one could name.
I had more surgeries – endoscopies, colonoscopies, cystoscopies, a few more laparoscopies. They suggested irritable bowel syndrome. They checked my appendix a third time. ‘Due diligence.’
I had more tests, too – ultrasounds, MRIs, pap smears, blood tests, urine tests, STD screens, X-rays, HIV tests. I had my first internal ultrasound when I was nineteen. When the young male doctor explained how it would work, and the fear of penetration danced across my face, he paused, and then said softly, I have never understood why young women feel so uncomfortable about these ultrasounds but are happy to have sex with multiple men in their spare time.
My understanding of the complexities of gender politics was puerile. But I felt the sting of it somewhere very deep inside me, somewhere my conscious thoughts could barely reach.
As 2010 wore on the saga continued. I saw so many specialists and doctors and surgeons that I stopped trying to remember their names or their faces. I perfected my story. I learned that each pause I allowed between question and answer made me an increasingly untrustworthy witness. I learned the true meaning of statements like ‘That all sounds very strange’ and ‘I’m surprised you manage to make it to work if the pain is that bad’ and ‘Why don’t you calm down and start from the beginning’.
I learned to detect each tiny morsel of the phrase I don’t believe you, no matter how veiled by sympathetic smiles or how fragmented by furious note-taking. I adopted a professionalism they lacked; my answers became clinical and unfeeling, my descriptions matter-of-fact.
I handed out my histories to stranger after stranger until I barely recognized them – my medical history, my family history, my academic record, my employment status, my mental health history, my sexual proclivities. I was not yet whole enough to deflect the doctors’ disapproval. Instead, I internalized it.
I felt ashamed of myself for needing help. I felt ashamed of my imaginary pain. Sometimes, I would sit in appointments and convince myself that perhaps I really was imagining it. But then, a few hours later, the pain would come back and I would take myself to a bathroom and find myself bleeding heavily through my underwear, down my legs, into my socks, until I could feel it beneath my feet. I would sit on the tiled floor and wonder what to do, would watch the blood pool beneath me and wonder how I could ever leave the stall.
I would be lying if I said that these moments didn’t sometimes spark intrusive thoughts about another thing I wasn’t sure if I had imagined. There were times when I sat there, wishing I could disappear, and I thought to myself: I have only seen this much blood once before. But as soon as I regained control over my thoughts, I mopped up the memory, got myself clean and kept going.
Again and again, doctors asked me if I was feeling stressed, or anxious, or depressed, or panicked. I realize now that they were suggesting these things were the cause of my pain, but at the time the question felt insultingly obvious. Of course I feel stressed, I wanted to yell at them, my body is tearing itself apart and no one can tell me why.
After months of this, I remember sitting in an indistinguishable specialist’s office and being told I needed to go to a ‘pain clinic’. The woman explained to me gently that sometimes, when a person has been in pain for a long time, their mind loses its ability to craft �
�appropriate’ pain responses, firing thousands of pain signals when it only needs one, turning a stubbed toe into a day’s agony. I clearly remember not understanding a word of this, but it felt legitimizing. It also felt hopeful; I was promised expert psychologists who could train my mind so completely that I would no longer experience pain. To a girl desperate to get back to herself, it sounded terrific.
The pain clinic was all white walls, sterile smells and bearded male psychiatrists. In my first appointment, I started the story I had rehearsed. My symptoms, my history, my surgeries. One psychiatrist explained that ‘young women’ were often referred to pain clinics when doctors decided their conditions were ‘psychosomatic’. I had never heard that word before but I got his message loud and clear: I had spent months trying to convince doctor after doctor that I was losing my body, and they all thought I was losing my mind.
At nineteen, realizing that everyone around me thought my problem was psychological was the hardest part of all. Another psychiatrist at the clinic explained to me that some mental conditions are so powerful that they can begin to control the body, to manifest themselves in increasingly physical ways. I did not doubt that it was true, but I didn’t believe it was true for me. My problem was not that I could use my mind to control my body. It was that for the first time in my life, I couldn’t.
I persevered with the pain clinic for a few months before making an excuse to cancel an appointment and avoiding their calls for a year. I’m sure it would have been very helpful, had I been ready for it. But I wasn’t, and so I kept running.
After I abandoned the clinic, my symptoms got worse. I started having acute episodes more frequently. I could never predict when they would come on. Once I was on an evening walking tour while on holiday with my sister, standing in a graveyard near a church, a young guide telling us a story about a ghost dog of some description – my memory fails me at this point – and I started to feel light-headed. The pain in my abdomen came on like lightning, my muscles contracted, my legs felt wobbly. I rushed off to a bathroom in a nearby pub, barely making it down the stairs, and locked myself in a cubicle. I lost my vision, and then my consciousness.
Years later, a surgeon friend of mine would tell me that many doctors don’t take female pain particularly seriously. At the time, I wasn’t sure if I believed him. Could that be true? Do people really think like that?
But now I know that the truth is this: studies have consistently found that doctors working in emergency rooms take women less seriously than men. Women who present to an emergency department with acute pain are less likely to be given effective painkillers than men reporting the same amount of pain. Even when women are prescribed pain relief by emergency doctors, they wait longer to receive it.
A study by Swedish academic Ann-Sophie Backman at the Karolinska University Hospital’s Clinical Epidemiology Unit showed that a woman presenting to an emergency department was less likely to have her condition classified as ‘urgent’. She was also more likely to spend significantly longer waiting in emergency wards than men who arrived at the same time with similar complaints.
A study by Diane E Hoffman and Anita Tarzian published in the Journal of Law, Medicine and Ethics showed that doctors are more likely to dismiss complaints of acute pain when they come from women. Another study from Healthline showed that when female pain is recognized and treated, it is treated less aggressively than the same degree of pain reported by men.
A UK study by John Guillebaud, professor of reproductive health at University College London, found that women presenting to emergency with pain will wait an average of sixteen minutes longer than men presenting with the same degree of pain. Women are also given smaller doses of pain relief than men who report the same degree of discomfort. Research cited by Hoffman and Tarzian has found that doctors are more likely to assume that female pain is a result of ‘emotional causes’, whereas male pain is presumed to be a result of a physical problem.
When doctors do consider that a woman’s ailment may be a physical one, she is often presumed to be suffering from a gynaecological problem, which is less likely to be treated with pain relief, according to a study by Esther Chen, an emergency medicine doctor at Zuckerburg San Francisco General Hospital. I’d be willing to bet there’s also an element of the profoundly inaccurate but deeply held belief that women should be blamed for any irregularities in their sexual health.
But far too often doctors never get past the point of presuming there is a psychological problem with the woman before them. So doctors refer her to a counsellor and send her home, still in pain, still potentially in danger, still completely unaware of what is wrong with her, and having just been told she’s imagining things again.
I hear so many stories about being that woman. I have been that woman, again and again and again: riding home from hospital in a taxi, in pain I physically cannot bear without yelling, legs shaking, unable to move, having just been told that there is absolutely nothing wrong with me.
How could that be?
There is also a widely held belief that women are more likely to go to the doctor with less serious complaints than men, and therefore, when they do go to the doctor, they are taken less seriously. But a 2011 report from the Institute of Medicine shows that women and men are equally likely to consult doctors for conditions relating to pain; we also now know, contrary to cultural belief, that women actually have a higher pain tolerance than men. This evidence runs counter to deep-seated assumptions about the fragility and sensitivity of women – studies show that their pain is more likely to be seen as ‘hysterical’ or ‘exaggerated’ – and from our corresponding assumptions about the stoicism of men. Each of these studies bears out, to a frightening degree, the experience I had with doctors over the ten years in which I was hunting for a solution to my suffering.
Once I learned of these patterns, I filled out an elaborate legal document that allows a patient to access all of their hospital records. I collected the thick pile of medical records with bees in my throat. I cringed as I looked at how many hospital admissions they represented, how many hours of waiting in emergency rooms for nothing and no one, the indignity of it all.
As I leafed through the pages and pages of records, I saw just how naive I had been. Doctors’ notes included comments like ‘some guarding in response to pain but seems voluntary’; ‘patient seems well enough; nothing organically wrong’.
Those scribbled notes haunt me in my sleep like a ghost, representing every experience of being disbelieved, right there on the page, in black and white.
The notes ended with comments such as ‘Lucia’s pain and discomfort was successfully managed and she is well and stable.’ My pain and discomfort had not been successfully managed. I was not well and stable. I was a disaster.
The notes speak repeatedly about my sex life, about the possibility of sexually transmitted diseases. I kept insisting I didn’t have any, that this wasn’t possible. There are several separate reports of the pathologies that later came back regarding those supposed infections. I turn the pages over and over and each one said the same thing:
Negative.
Negative.
Negative.
Negative.
Negative.
And I turned the final page. Negative.
On not a single one of those occasions did I have a sexually transmitted infection. That’s several courses of intravenous antibiotics I was given because doctors associate female abdominal pain with promiscuity.
It is important at this juncture to make one thing clear. That my pain was not taken seriously is certainly how I experienced these years of medical treatment. But I am also a journalist, and facts matter a great deal to me. While writing this book, I have spoken to doctors who have told me that if you present to emergency with abdominal pain as a woman, medics will immediately turn their attention to gynaecological emergencies first because they can be fatal much more quickly than other conditions. So doctors will immediately check for ectopic pregnanc
ies and other gynaecological conditions that are life-threatening and require urgent surgical intervention.
So now I understand why doctors often jumped to conclusions about my sexual health. But it doesn’t explain why, when those conclusions turned out to be wrong, they gave up on me altogether.
Once, I was sitting in a specialist’s office and she said, Wow, it really doesn’t take a lot for the wheels to fall off your cart; have you considered a psych analysis? I wanted to defend myself but I knew if I made a sound, the tears in my throat would well up and reach my eyes and prove the very thing she was accusing me of: being weak, indulgent, playing victim.
At one point in the medical notes, a doctor wrote: ‘The laparoscopy was normal and photos of the internal organs were given to Lucia to show her the organs are fine.’ It turned out that my endometriosis specialist, when he later examined those photos, could see evidence of the disease. The doctor reported in a separate letter about that visit: ‘[Lucia] was thoroughly investigated including a diagnostic laparoscopy which was noted to be entirely normal.’
Next I leafed through the stack of blood results that had come in the package of hospital records. Every single time I went through emergency the doctors told me that all my blood work had come back ‘relatively normal’, so there was nothing to investigate there. This is only a half-truth.
In every single one of the fifteen blood results I have records of, bar one, my lymphocyte levels were abnormally high. In many, my eosinophils were also abnormally high. In some, my neutrophil levels were abnormally high too. In some, my white-blood-cell count was higher than it should have been. Each of these indicators tells us about how the white blood cells in the body are behaving. Each of them is raised when the body is going through an inflammatory process. Both endometriosis and Crohn’s diseases are inflammatory conditions.
I Choose Elena Page 3