Code of Silence - International Nurses Day 2018

By Dannielle Stewart from The Daisy Diaries by Danni

This blog has been reposted with full permission from the Author


Nursing demands of one a different set of social rules, a set which can only be learned through, sometimes regrettably awkward, experience. As nurses we cross lines, break down walls, and defy boundaries in the name of health and healing. We must shun revulsion, embrace the happy face, and put aside our own problems in service to our patients. There is a talent to being able to make small talk while putting in a catheter or making someone feel comforted, and not weirded out, while showering them. There is just as much talent in smiling at an elderly patient when they turn the shower head on you, soaking you from head to toe, instead of crying “Mildred, we talked about this, if you can’t handle to hose, hand it back”. When I don my uniform I wear many faces, use many different voices, and pretend that body fluids do not smell. I am nurse, sister, hey you, whatever I need to be; I shake away my identity and take on a new one where for eight hours my problems don’t exist. I have such a talent for these skills because I have had years of practice, thanks to endometriosis.

It was a Monday morning in my second term of year eleven, the season had finally changed and the air had lost its suffocating humidity; I loved this time of year. I was fifteen years old. I have delivered newspapers to the office building, picked up a draft of my English paper from the humanities staff room, and checked the time to see how long I have before form class. It was during this mundane moment I was overcome by a pain that I had never felt before. It was like my uterus was turning itself inside out, slowly but surely, while simultaneously someone was stabbing me with a superheated knife throughout my abdomen. It was jarring, and it knocked the breath from me. I’d been having cramps for a few days, and they weren’t exactly subtle, but this was a new feeling and it took me by surprise. Walking suddenly felt impossible, but I couldn’t just plonk myself in the corridor where anyone would see. I looked at my watch again, form class was in twenty minutes or so, I could sit outside the classroom and not be bothered.  I took a dose of ibuprofen out of my bag and swallowed it hastily, praying it would bring some kind of relief. I made it to the classroom, the pain overwhelming, and I sat with my knees tucked under my chin. At this point I was used to pain, I had started getting cramps around fourteen and they hurt, but I didn’t think much of them. I reasoned that everyone had period pain and so I didn’t worry. But in all of my self scrutiny, I suddenly began to look at everyone else and wonder if other girls in my class even got their period. They didn’t look like they had pain, or if they did it wasn’t bad, all of them seemed so perfectly fine all of the time. Surely not everyone was pretending? I started to wonder, on occasion, what my problem was. It was telling that the first thing that came to mind was that my problem was not being able to handle the pain, not the aetiology of it. I decided that it had to be me, and I had to hide it. The message that subliminally floated around was that, as women, we weren’t really supposed to talk about these things outside of hushed circles, and that was where I surely had to keep this.  

The ibuprofen was having zero effect, in fact I was sure the pain was getting worse. I wasn’t sure what else I could do, I had taken painkillers and sat down, yet the feeling remained. I tried not to panic, taking deep breaths. My form teacher, also my biology teacher, was now making his way up the stairs to the classroom, early, unanticipated. When he saw me he was understandably concerned, because I imagine I looked awful, and I was mortified. This was the worse case scenario here, a teacher, a male teacher, asking questions that would quickly take them in the direction of my period. He was unfazed though. I asked him how long ibuprofen took to work, and cursed under my breath when his answer wasn’t what I was hoping for. His concern only heightened, and even though a small part of me wanted to break down and beg for answers, ask why this was happening to me, because he was nice and I was confident he’d say something reassuring; even in spite of this I felt myself straighten, erase the pained expression from my face and reassure him that I was fine. I did not escape the concerned gaze of my teacher for time, and with good reason, and as a result I began to wear a mask of sorts, one that hid what I was really feeling. I stopped talking about it to anyone, I never mentioned my pain. At times this was made easy by the remission of symptoms between each month, in this time I would forget how bad the pain was and assure myself that there was nothing wrong. When it came back the next month, I would scream on the inside and smile on the outside. My teacher knew all about endometriosis, before I did, and he encouraged me for many months to tell someone. He had proven to me already his genuine kindness and care, offering reassurances the few times he found me in so much pain I didn’t dare move,  He never lost his patience when, curled on the floor of the stairwell, I protested that I was fine and he needn’t call anyone to help, and I told him there was nothing wrong with me. He became my friend once high school was over, and he was the first person I called when I saw a specialist for the first time. 

Pain can be suffocating, both physically and emotionally, and at fifteen I was nowhere near equipped to deal with it, and yet I did because I thought there was no other choice. I pretended that there was nothing wrong for five years before I was diagnosed, and talked to only a few people about my pain, maintaining its benignity beyond a reasonable doubt. I recall at twenty years old the anaesthetist asked me about what medications I took before surgery, and he was visibly confounded when I said none. He asked me after the procedure how I had managed it considering the outcome. I shrugged. I hadn’t realised I had a choice.

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The above collection of photos are examples of a number of times where I have been in significant amounts of pain, but said nothing about it to anyone. I wager that when one looks at these, they wouldn’t pick that later that day I would be lying in bed clutching my stomach, or sitting in a bathroom crying where no one could see me, or on one occasion passed out on the floor of my high school physics lab. Endometriosis cuts into moments of your life that you want to enjoy, it is with you in the best and worst moments of your life whether you like it or not. I graduated from university the first time two weeks after surgery, filled up to my eyes with painkillers, worried I’d fall flat on my face as I walked across stage. My first day of my perioperative placement, I made it to four o’clock before I had to sit on the floor of the locker room because I was in so much pain I felt dizzy. After my best friend’s 21st birthday party I lay on a mattress on her floor, my other friends asleep beside me, trying not to scream and trying to strike a bargain with God, thinking of all the things I’d give up just to be able to sleep pain free. Naturally, many of you may ask why I didn’t say anything about my pain, if it was so bad. It’s a fair question.

There is a code of silence, and there has been one for some time, among those of us with endometriosis and severe period pain. We frequently stay quiet about our pain, for any number of reasons. Perhaps because we’ve been raised in a world that tells us periods are something we don’t talk about outside of closed rooms in quiet tones. Perhaps because there was a time where we shared our pain – with a friend, a parent, or a doctor – and one or more of them told us it was normal, or worse, that it was all in our heads. It may be that we have been in pain for so long, that it becomes normal to us, that pain is just a background noise in the song of everyday life. We become afraid to share, sure that we are alone, despite the fact that 1 in 10 women suffers with endometriosis.

Even once we receive our diagnosis, women with endometriosis often face barriers in a number of areas. Just because we have a diagnosis does not guarantee that others will understand it, including medical professionals. Many women face ongoing battles with their general practitioners, with emergency room or hospital staff, and even with specialists. As we bring endometriosis into the spotlight through global awareness campaigns, women with this disease become better equipped to understand the range of treatments available to them and what they can do to manage pain, preserve fertility, and improve mental health. I recently attended ‘An Hour of Endo With QENDO’ with my colleagues from Endometriosis Queensland, and it was enlightening to see the number of women who left better equipped than when they arrived. We are resilient and strong, and we are tired of pretending that there is nothing wrong, pretending that we are fine, pretending that it’s okay that people think our disease is unimportant.

As endometriosis is thrust into public consciousness through tireless and brave campaigning by people affected by the disease, mythology is shattered and more people begin to understand the reality of living with pain for years on end. As more knowledge makes its way into the mainstream, critical thinking and discussion can occur to ensure that women are equipped with facts, and that we do not slip into the stasis of accepting rhetoric that is untrue because “that’s the way it’s always been”. There has been silence on this front for too long, silence from those of us that suffer, silence from politicians with a platform to encourage funding and public knowledge.

The tide has begun to turn, with the Australian government just last week announcing $2.5 million dollars towards researching better diagnosis and treatment of endometriosis, the result of work by the Australian Coalition for Endometriosis -a group made up of associations like QENDO, EndoActive, and Endometriosis Australia among others. Women are finding their voice and becoming their own advocates in light of education and support from these groups, both of which empower them to value and own their stories and convince medical professionals, family, and friends to take their condition seriously. There is still much work to do to break the code of silence that exists, which highlights the importance of Endometriosis Awareness Month happening now. Women across the globe are sharing their stories through hashtags like #theendophotochallenge2018 and #1in10, and we have a duty to sit up and listen to what they have to say. The wall between sufferers and non-sufferers must be broken down and knowledge of endometriosis must become as ubiquitous as our knowledge of diseases like breast cancer, diabetes and asthma – because they affect people on the same scale. Women’s health is more important than it’s given credit for. Endometriosis does not only affect the person, but the society around them. Pain influences partners, friends, and family; pain is responsible for loss of productivity in workplaces and has an economic impact on the wider state and country. Understanding the systemic effects of this disease is important moving forward.

It’s not just bad period pain, but so much more. We must walk with eyes open, our lips must not remain sealed, and we must above all commit to listening – to women, to their partners, and to medical professionals who have committed their practice to providing evidence based, patient centred care to endometriosis sufferers.

As I walk through the wards each day, caring for my patients, my nurse face on, I smile and my problems melt away. But when I go home, I must learn to admit when my pain is too much, to demand better for myself. I must learn to show my true face and speak up, not only for myself, but for the millions of other women around the globe who share the same fear of ostracism, of pain, of being told they are crazy. We don’t have to be afraid. If you want to go fast, go alone, if you want to go far, go together.

There is a code of silence, and it can’t go on.

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