A Letter to my Nurse Colleagues

By Dannielle Stewart

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To my fellow nurses,

Long before I entered the halls of my first hospital as a student nurse, I admired you, I looked up to you, I cherished you. You see I was a patient before it even occurred to me that I wanted to be a clinician, the day I saw my endometriosis specialist for the first time at eighteen. At twenty I had my first laparoscopy, just months before I started my nursing degree, with no tangible idea of the sheer bravery, compassion and intelligence of nurses. You held my hand as I discovered that I had small, sparse veins, the kind that made the anaesthetist sweat and my heart race. You passed me tissues as I cried, terrified that all my surgery would do was prove that I was making a big deal over nothing, reassuring me that you would trust my surgeon with your own life and the lives of your children. When I awoke, pain hitting me with the force of a runaway freight train, you medicated, you stroked my hair and patted my back when I vomited from the anaesthetic - something so foreign and overwhelming to me, and I felt safe. Later, you walked me to the bathroom, holding my waist and arm because every step was shaky and my head spun, but you never let me fall. I knew straight away that you were who I wanted to be.

Enter nursing school, where I learnt the skills and knowledge that would deliver me to that elusive registered nurse role. I was newly diagnosed with endometriosis, and passionate about raising awareness. I was saddened to learn that in my time at school, we would not talk about endometriosis once, and the textbook that we considered essential had only half a paragraph on the condition - and the definition was incorrect. As I went on my first clinical placement I still battled postoperative pain as my first Mirena settled and I learned to manage my chronic pelvic pain, and I was worried that my new colleagues wouldn't understand. At times I was partnered with those of you that seemed like hard taskmasters and I felt as though I messed everything up, but I know now that you just wanted to teach me to think for myself. Then one morning in my second semester I found the 1 in 10, you and I were making a bed and you mentioned that you were grateful for my help because you too had endometriosis, and you were flaring. We bonded, and you taught me that endometriosis wouldn't be the end of my career.

As I grew into a registered nurse I learnt that not all of you were knowledgeable about endometriosis, and how could you be? Nursing school doesn't equip us with that knowledge, unless we actively seek it out ourselves or encounter a patient with endometriosis. I encountered my first endometriosis patient in general surgery, a young woman who had an appendectomy and surgeons incidentally saw endometriosis scattered across her pelvis - I could see it too when I looked at her surgery photos. The general surgeons, not skilled in excision or gynaecology, gave her the news and left to see the next patient, as is their way. I could see the expression on her face, I recognised that face - overwhelmed, exhausted, and terrified. I explained to her what endometriosis was, drawing on resources from my new role as support coordinator with QENDO, and that her next step was to find someone who knew their stuff, because while the team were right - endometriosis couldn't be cured - it could be managed, she just had to take it one step at a time. I learnt then that nurses could bring comfort and clarity, and that despite time restrictions and increasingly heavy workloads, I had to always make time to educate and reassure patients - they need it just as much as medication, to understand and to participate in their own care journey.

Despite noticing that not every one of you knew enough about endometriosis, I learnt that sometimes that didn't matter, because knowledge could be acquired (and anyone that spent time in the break room with me certainly got an education, sometimes against their will) but no one can teach empathy and compassion. You may not have known all the latest surgical techniques or the neuroscience of central sensitisation or even the correct definition - but you were understanding anyway. You provided comfort and pain relief, you advocated to doctors for referrals to someone who could help. As I continued in my journey as a nurse I also found more of you who shared my status as patient, and you wanted to help, to change the way things worked for patients for the better. Whether through quiet voices in tea rooms and cubicles, or a loud and noisy prayer like mine, you have been part of raising awareness.

When I became a patient once again, you showed me how much you take care of your own, your sister. During my graduate year you saw me, crouched on the floor in a hallway, doubled over in pain and so dizzy I couldn't stand - you surrounded me. Despite my protests you sent me to emergency for pain relief, the charge nurse among you telling me "I have called the porter to take you to ED", and when I shook my head you peered at me over your glasses and repeated: "sister, I have called the porter to take you to ED" - and I didn't argue anymore. When I arrived in emergency, you solidified for me the importance of what we do for endo patients in the acute setting. Sometimes in emergency, despite the pain we experience, there is little more to be done than relieve that pain and recommend follow up with our own practitioners. That doesn't mean that in those moments we do not need compassion and understanding, someone to hold our hands and tell us that we are safe here. One of you whom I had worked with several times in ED before came to me at the bedside and put your hand on my shoulder and asked "is your endo flaring again?". When I nodded you pulled a heat pack from the pocket of your scrubs and gave it to me, and when the registrar came you in demanded that I have IV pain relief, especially, you said, if the same reg didn't want me to vomit up whatever meds he administered orally; because didn't he know that endometriosis patients often suffer from severe nausea alongside their pain? I nearly cried I was so grateful for your knowledge, that you clearly took the time to acquire after listening to me in our previous work together, for your advocacy, because I was too tired and too sore to fight, and for that simple gesture of comfort that made me feel better despite it all.

So dear colleagues, I have seen the best of what our profession has to offer the world, and sadly at times I have seen the opposite side, but remain steadfast in my belief that nurses are the beating heart of any hospital or clinic, any medical workplace where they are employed. My plea to you as both your colleague and your patient is this: be generous - with your time, with your heart, with your spirit, because it makes such a difference in my care. Never stop learning, because it is easy for us to become too set, too comfortable, so convinced we know everything after all this time; no matter how close to true that becomes, there is always something new to learn and so I implore you to learn about endometriosis. It effects 1 in 10, we walk beside you every day as your colleagues, your patients, your managers, and your friends - if you know ten women, you know endo. Knowledge empowers and inspires, it makes us better clinicians, better advocates, and better able to provide patient centred care. Finally, endeavour to never lose your compassion and caring touch, no matter who you care for. I know this job is not easy, it grinds us down and sometimes there is nothing left of us to give, and we continue to give anyway. Sometimes our patients may seem ungrateful, they may appear disingenuous or even like they are here to take advantage of us; I implore you not to view every patient through the lens of this experience. Those of us with endometriosis fear the most being accused of fabricating our illness or seeking drugs, because perhaps the face we show the world in order function in society has played it's part too well - we don't look sick, even when inside we are dying. My blood pressure of 92/55 and heart rate of 120 has at times been the only sign of how awful I feel, because I have mastered the art of keeping calm and carrying on. We're not so different, I know you use that face too, I use it every day because I do not want my patients to know the toll this work sometimes takes on me, the questions I ask myself - why do I do this? Eventually I remember the reasons why, and it is you my nurse colleagues who remind me - whether I am your fellow sister or your patient.

We need you, I need you, because doctors do not always listen but you and I have remarkable power in the form of passion. We are passionate about care, about advocacy, we protect our patients like a mama bear - keep that fire burning sisters and brothers, because it does not go unnoticed. Thus I conclude by asking you, my colleagues a favour: reflect upon your knowledge of endometriosis, adenomyosis and PCOS, of women's health and ask: can I do better, for my patients?

Your forever grateful patient, and valued colleague,

Dannielle Stewart, RN

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