The Great Pretender

CATERINA SCORSONE

It’s the name of a Grey’s Anatomy episode, albeit actually the one before where the quote I’m about to share comes from, one that I watched for the first time in the middle of my third year of university. It was during a time where my mind was waging a battle against itself, so much that finishing the last stretch of my degree seemed even harder. I remember looking at that episode title…The Great Pretender… and feeling like it was an indictment of everything happening in my head. The episode is part of a series of fantastic episodes during the show’s 11th season where Amelia Shepherd (pictured above and played by Caterina Scorsone), Derek’s little sister who is also a neurosurgeon, is attempting to remove Nicole Herman’s (Gina Davis) terminal astrocytoma. In these episodes she faces a crisis about her own abilities, having been overshadowed by Derek her whole life. This is the quote that stuck with me from those episodes:

“My whole career I have been the other Dr. Shepherd. He’s the real one, I’m the other one. Right now this plan of mine is theoretical. It’s just talk. But at some point I am going to slice into Dr. Herman’s brain. And I have this sick feeling that when I face that tumor, I will discover that I am not just the other Dr. Shepherd — I am the wrong Dr. Shepherd.”

What I was dealing with had nothing to do with brain surgery, or even my career, but that theme of feeling like a fraud or like you would eventually be proven wrong about everything you thought about yourself was palpable for me during that time. Re-watching the episode last night I thought about all the ways I still feel like the great pretender. Back then my fear was that I, like Amelia fearing that she was the wrong Dr Shepherd, was the wrong patient. Somehow my surgeon had chosen wrong and picked this girl still functioning, not in pain all the time, and still holding down two jobs and a full-time degree, to go looking for endometriosis inside of. I felt like I was wasting everyone’s time and I had thought so since the first time this kindly doctor handed me a surgical consent form. The reason I took it was because part of me wanted to believe that my pain wasn’t normal and someone could do something about it. I’ve written in previous posts about the mindset that women are taught to believe growing up, that everything that happens during menstruation is normal and ‘our lot’ and furthermore that we’re not to talk about it. I was very much in this mindset, having convinced myself of the normality of my pain and trying not to complain too much. I was in pain every month but for the days or weeks that I wasn’t I would forget how much it hurt. Pain is like that, when you’re in it you don’t remember what it’s like not to hurt and when it’s over you don’t know what you were so worried about…until it happens again. During those days and weeks I felt like a fraud.

Now that sounds rather arrogant when I look back on it, I somehow thought that I knew better than a leader in the field of endometriosis who thought that I had it. No, no, I knew better and there was no way I had it (sorry Dr T, you were right). My mind tore itself apart between this feeling of fraud one week and the pain the next week that would convince me that no, I did need surgery. I both wanted and deeply feared surgery, knowing that I needed it but was fearful of the actual business of doing it. The thing I feared even more was waking up from that surgery and finding that every moment I had been foolish enough to let myself think that I had endo would be repaid with the destruction of that identity. I spent every minute I wasn’t studying or working thinking about all of this, which actually isn’t as long as you’d imagine because I had two jobs, which cemented this identity of mine as the great pretender. What solidified it even more was that I didn’t let anyone know this was all I was thinking about, I pretended to be okay even when I wasn’t and the few times I went to try and tell someone it came out wrong or I couldn’t bring myself to. Part of me was afraid that because I had been quiet about my pain for so long, people wouldn’t believe me even when I said I had hurt for a while but just didn’t say anything. I became exceptionally good at pretending that I was one hundred percent fine.

Even now that I know I have endometriosis there is a doubt, perhaps because I doubted it for so long that I really was expecting a different outcome. I still don’t fully understand what it means to have endometriosis, for me.  I have heard many stories that share elements that are similar or identical to mine, but I have also heard many that make mine seem minor…unable to function, infertility, pain that never stops. Though at the moment my pain feels exceedingly bad, I still associate it with my IUD and not with endo…at least not yet. Sometimes it’s as though I’m waiting for someone to say it’s a mistake, it’s not really there. This is why follow up and having someone on your side to say, it’s okay now and we’ve got this, is so important with this disease. Doubt is a huge part of it. Dr Kate Seear in her paper “The Third Shift” describes how many women when they are diagnosed with endometriosis initially feel relief which later gives way to surprise, shock, or other emotional reactions. Furthermore, the information they had access to was often overwhelming with many struggling to decipher which sources were reliable and what action to take to mitigate their disease process. Uncertainty about what it means to have endo is only perpetuated through this confusion, as well as the many hours we often devote to thinking about everything associated with this disease.

I don’t know how long it will take for me to stop feeling like the great pretender, like I finally belong among my endo sisters. I only hope that it will come from fully understanding what was found during surgery and getting to the bottom of the fundamental questions anyone has about chronic disease: what does this mean? What has it done to me? What will it do?

2016: Ending Silence and Increasing Education Around Endometriosis

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2015 has been a spectacular year for endometriosis awareness in Australia. Sylvia Freedman, co-founder of EndoActive Australia and New Zealand has been, quite frankly, kicking ass. She and her Mum helped put together the first patient-centred endometriosis conference with a number of top-rate specialists, the content of which is now available in a DVD which has and will continue to help endometriosis sufferers. The Guardian also published a number of articles brining awareness to the condition and the voices of so many women were liberated in the process.

2015 was the year that I became someone with endometriosis after waiting for over a year and a half to find out. In the lead up to that surgery those articles helped me see the many different faces of endometriosis. Even up until the entered that operating theatre I doubted that I had it because I believed that girls with endometriosis didn’t look like me. They were in more pain, had to miss more school or work, and generally weren’t as okay as me…I felt like an imposter for even considering my meagre pain compared to their suffering. It took me a while to realise that I *was* in that much pain, I was too afraid of getting behind or being fired to admit it to anyone.  I was afraid that if I admitted it, the pain would feel more real and it would be worse…or, even more painful, people wouldn’t believe me. Reading the stories of other women made me realise that endometriosis looks like many different things. Some people have a lot of pain and very little disease, or a lot of disease and very little pain. Some people have surgery and end up in more pain because of scar tissue. Some women with stage IV, the most severe, endometriosis are able to conceive children while others have zero chance naturally or even with IVF. There are different levels, frequencies and severities of pain, but what matters is that women with endometriosis are in pain and they have been silent about it for too long. I discovered a million more stories as gained new sisters, endo sisters, who are keen to embrace you and welcome you into your brave new world.

What I have learned this year, and throughout the last couple of years, is that women are not encouraged to generally speak up about pain or periods. It is something that we are taught by society from an early age that menstruation is not something we talk about in polite conversation and questions become the realm of quiet conversations with only close friends, embarrassed Google searches, or if you’re lucky a conversation with a school nurse. In this environment of suppression how can we be expected to speak up about things we think are unusual? It is especially hard when we see that those of us that do speak up are often dismissed in the same way many a woman throughout history has been dismissed: we’re called crazy or hysterical, and told to suck it up because “it’s all in your head”. It’s not all in my head and I have the gory pictures to prove it. You know who never questioned my sanity? My specialist. And he’s a guy too and so is living proof that it is possible to be a male doctor and not condescend to your female patients. He always treated every word seriously and listened when I said I was afraid he wouldn’t find anything. I’ve been lucky to find him because hearing other people’s stories has assured me that many doctors out there, male and female, simply do not understand. That’s something we need to change.

In 2o15 we have come so far, but in 2016 we have further to go and more work to do. My personal contribution will be beginning to write about the experience of endometriosis and helping other voices come to light to help educate more people and maybe even medical professionals about what it is we live with every day. I’ll also be studying my nursing degree with the hopes that I can one day help girls like me by being a kick ass surgical nurse. But our goals as a community should be centred around further awareness and education, for everyone, so that women suffering feel safe and confident to say to their doctors, to their friends: I’m not okay, my period is hell and that’s not okay. Furthermore, we need to work harder in taking women’s pain seriously. Far too often women in pain are assumed to be dramatising or using pain as an excuse, and far too many times I’ve seen people make insensitive comments about that pain. The fleeting comment you make about how you wish you could get off work for period pain too hurts someone with chronic pain, because they would like nothing more than to have a normal life. The comment you make about your friend needing to “suck it up” because you get cramps too but don’t complain, is dismissive and frankly rude…you don’t know what is going on inside her body. Make 2016 the year you stop doing that. Make 2016 the year we take endometriosis seriously and start actively listening to the women that have it, because you will learn some astonishing things. You have an opportunity to learn so much and change the way the next generation of women think about their bodies, so they don’t think pain is their life sentence for being a woman. Reduce the average of 8 years it takes to get diagnosed because outside of the specialty area of endometriosis, an abhorrent number of medical professionals simply do not understand this disease.

March 2016 is Endometriosis Awareness and you can support the cause by sporting some sunny yellow attire and finding an awareness event. Endometriosis Australia is holding events in most major Australian capital cities. If you’re in pain, never assume it a sign of your own weakness or inability to deal with “a woman’s lot”…it’s not, and your pain matters. Ask you GP for a referral, and do your research. I was lucky enough to land one of the state’s foremost endometriosis specialists because my GP knew what she was talking about (because I really didn’t), but do better than I did at research. Find someone right for you and don’t be afraid to ask for second opinions. You have millions of Endo Sisters across the world eager to welcome you and help you through it, don’t be afraid to ask us!

Helpful Links:

Endometriosis Australia  http://www.endometriosisaustralia.org/

My Endometriosis Team (A social network just for us!)  http://www.myendometriosisteam.com/

Endo March Australia http://www.endomarchaustralia.com.au/

 

Help Wanted: Endometriosis Stories

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On December 17th I graduated from my Bachelor of Arts majoring in Criminology and English Literature, two areas that have vastly changed the way I see the world and make me think critically about everything I read or hear. I am also completely abandoning them to go into nursing, sorry Lit…apologies criminology….it’s not you, it’s me. But for me nothing is ever a waste, I learn something new from everything and truely believe the world would be a better place if more people had Arts degrees (politicians, I speak of you). One thing I certainly gained from my literature degree was the ability to write a damn fine piece of writing…fiction or non-fiction. Qualitative inquiry class in sociology taught me the importance of the personal narrative and how uncovering people’s stories can be a catalyst for social change. So I’m doing something with them. I am starting a long-term project: it’s a book, a book about the experience of having endometriosis.

Talking to other sufferers  I realise one thing most of us can agree on is that this disease is poorly understood and not just by the general public, some doctors cannot even seem to grasp that pain that puts you in bed half the month is not normal, and it’s not “all in your head”, it’s an incurable chronic disease. I want to write about what it is like for women with this disease at various stages…I’ve only just begun my journey so I need the voices of those who are further down the road. These stories will stimulate a discussion of fundamental issues with the understanding of the disease, the effects the disease can have on a person’s life, and how we can foster more awareness and understanding to enhance diagnosis and improve quality of life. It’s a big project, and will likely take me a while to complete, but that’s okay because it will mean seeing how my own journey unfolds as I discover more about what it means to have endometriosis.

So I need you Endo Sisters! If you have endometriosis and you are interested in sharing your story for this project (your identity will be protected and pseudonyms used for the purposes of ethical research), please get in touch! You can write about it, you can send me a video of you chatting about your story (and I’ll take some notes as if it’s an interview), or if you are into Art or photography you can present your story in this form and provide an explanation of what these mean to you. I’ll provide an email address. You also have the option of what you share. Given that this book is going to be in sections, have a look at some of the things below you may want to focus on (choose as many as you like to address, or add your own!):  Content and trigger warning: Infertility, mental illness. Only answer things you feel comfortable with, it’s YOUR story.

  1. Diagnosis: When did you first start experiencing symptoms? How long until you sought help? How long did it take you to get diagnosed? What barriers did you face?
  2. Medical Professionals: How did medical professionals treat you when you presented to them? Were they helpful, understanding, knowledgeable about the disease, empathetic? Did you experience people telling you that the pain was “in your head” or normal, were you told to “suck it up” etc? What do you think makes a good endometriosis specialist?
  3. Living with Endo: what does a typical day look like for you? How has endo changed your routine? Does your disease limit you in any way? How? How do you deal with living with endo, and how do you stay positive? Have you dealt with depression or anxiety as a result?
  4. Treatment: what are some treatments you have undergone for endometriosis? How have they made you feel? Have they worked or failed? Has the cost of treatments been an issue? What do you think of the treatments on offer for endo?
  5. Infertility: have you experienced problems with fertility? Have you tried treatments or IVF? Have you been able to successfully conceive?
  6. Surgery: Describe the experience of undergoing surgical treatments for endometriosis, have they improved pain? Have they left scar tissue etc that have caused problems?

If there’s anything else you’d like to share, feel free! Your story will be treated with the utmost care and confidentiality and your identity will not be revealed in the publication. If you decide you’d like to share your story I will send you a consent form, as I’m treating this the same way I would qualitative research. I am also happy to send you a sample of the section your story is used in to ensure you are satisfied with it’s representation.

Can’t wait to hear from you!

Email: nursedanni17@gmail.com

 

We Get Up Again….But Then Some Jerk Cuts Our Bulk Billing

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“It’s never been a more exciting time to be an Australian” – Malcolm Turnbull.

And yet for Australia’s ageing population, cancer sufferers, and patients of chronic disease it appears it’s never been a more expensive time. The LNP in the last few days announced their budget cuts and aim has been taken at Medicare, aged care, and radiation oncology programs. Specifically the proposal for $650 million to be cut from Medicare which will mean bulk billing  incentives slashed for diagnostic imaging and pathology. This article will focus on this particular aspect because it is one that has become increasingly important in my own life as well as my fellow endo sisters that I have connected with over the past few weeks. These kind of cuts are a blow to people with chronic illnesses including cancer. It seems that after enduring so much the government, a body with a duty to protect and care for its citizens, will be making it harder for us to live an already complicated life.

If you know anything about endometriosis, the second that diagnosis is delivered you know that you’ll be seeing the office you’re sitting in a lot. I remember thinking: I like these chairs, they’re comfy, that’s good because I’ll probably be back here again. I also remember the MRI my doctor sent me off for next, and the close to $350 pathology invoice I received a few days later. At the bottom of said invoice was the amount I would get back from Medicare, not all of it, but enough to make the amount I had to pay less significant. I got money back from Medicare on my surgeon and anaesthetist’s fees too which wasn’t a lot when compared with the total cost of the surgery, but it was helpful especially since I had no private health insurance. The thing about endometriosis is that not just any gynaecologist can pick up a scalpel and know what to do when they find it, or do what needs to be done without damaging the organs implicated. If you manage to find one of them in the public system it’s likely you’ll be waiting a while because the state of public health in this country is not something to be proud of. State governments like the Labor one in Queensland have been trying to fix that with initiatives like legislated nurse-patient ratios and policies to help clear surgical waiting lists. But many endo or “might be endo” girls have no choice but to go to private for the expertise or because they simply cannot wait. If they’re lucky they have private insurance, but not all of us do. So those little cash backs we get from Medicare are important. A lot of sufferers have tread a long road to get to the exploratory laparoscopy that will give them their diagnosis, a psychologically and financially draining road at that. When you finally get it your journey has just begun. The surgeon may have excised it, but endo can grow back and depending on the severity you could be in for a lot of time sitting in your specialist’s office. A part of making sure no one gets scalpel happy too soon is diagnostics and pathology. No Medicare benefits will only add more costs to our financial burden.

This comes after news earlier this year that certain over the counter medications may be set to become prescription only in an attempt to curb community addiction. The medications are the kind that endometriosis patients need just to get out of bed some days, not because they are addicted but because they are in pain. We already spend a good deal of our lives in doctor’s offices, adding more just to get pain medication seemed a dire prospect for many of us. We get knocked down so often by this disease, and despite getting up and trying to keep going things like this keep us falling. Being newly diagnosed I haven’t had to deal with as much yet, but the stories of my endo sisters are enough to make me expect the worst but hope for the best.

Now let’s talk about a more deadly consequence of these cuts. Patients who depend on diagnostics and pathology even more than endometriosis sufferers are cancer patients. In their case timely and accurate use of these services may literally be the difference between life and death. Delays in diagnosis cause delays in treatment and ultimately can mean progression to later stages of the disease which are harder or impossible to treat. If one truely wanted to save money and resources, one would realise that the cost of cancer treatment in the later stages which requires more staff, more medications, more resources, costs the public health system more. Therefore early detection, diagnosis and treatment would have economic benefits, not to mention lives saved. Once again the most vulnerable in society are footing the bill in the latest round of cuts.

It appears that no lessons have been learned from a leadership spill and fierce opposition to the last round of damaging cuts to health, education, and childcare. While Turnbull’s approval rating climbs, his policies reek of the same Abbott stench. These are not policies that are sustainable for people with chronic illness and isn’t it time someone who wasn’t vulnerable helped to “clean up the budget mess”? It’s time to stop playing the Labor blame game because more than two years in it’s your responsibility now and the situation has only gotten worse. We’ve suffered enough and so direct your poorly aimed wrecking ball somewhere else.

Well, it seems like I’ve been playing your game way too long
And it seems the game I’ve played has made you strong
But when the game is over I won’t walk out the loser
And I know that I’ll walk out of here again
And I know someday I’ll walk out of here again

– Trapped, Bruce Springsteen

Where Do We Go From Here?

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“The battle’s done and we kinda won, so we sound our victory cheer. But where do we go from here?”  –  Where Do We Go From Here from Buffy the Vampire Slayer’s “Once More With Feeling”.

Nothing about chronic illness is simple; not finding it, not treating it, and certainly not living with it. How you feel about it evolves in short periods of time and the questions you have in those early stages after diagnosis come thick and fast which can be overwhelming beyond all belief. For me the crash came when I realised that I didn’t feel how I expected to feel about my endometriosis diagnosis. I had expected after a year and a half of waiting to be able to even afford my surgery, during which I doubted myself frequently and questioned my sanity more than once, that I would feel good about finally having some answers. My last post on the subject indicated to me that at the beginning I was, I was relieved to finally have a name for it. But it’s everything that comes after that which makes it hard. The question that inevitably comes up is: what now? Where do we go from here?

My post-op appointment just five days after surgery answered the much anticipated question of whether I had endometriosis and added another possibility: indications of adenomyosis from my surgery. The surgeon sent me for an MRI to investigate further (more futile attempts to insert an IV cannula into my apparently veinless arms). I hadn’t really had a chance to ask too many questions at this point, even though I had so many, but assumed there would be time later. I know little about how specialists work even now because this is still all new to me, and wish I had known more about it so that I could have prepared myself for what happened next. The Monday after my MRI the specialist’s office called and one of his secretaries delivered the results: no signs of adenomyosis. She didn’t schedule any follow up and commented to just come and see them again if I ever needed to. I panicked because I was so surprised and just stammered a “sure, thank you” and let her end the call. But suddenly all my questions were unanswered and I didn’t know what to do, what was going to happen next. I had a Mirena IUD inserted during surgery as a treatment method to slow the growth of new endometriosis and to prevent pain, but that to me seemed like one aspect of the treatment. I wanted a game plan, a solid strategy that would help me through the pain because that’s the kind of person I am. Now I don’t blame my surgeon, he’s been amazing and lovely and from his point of view he’s done his job. But I still want him on my team, on my side as someone to talk this through with because at the moment I feel like I’m in the same place. I made it to the other side of the glass window but everyone has already left the room. I want to know where to go next. I know if I turned up in his office and said all this he wouldn’t turn me away, but in general before I really get to know someone I have an irrational fear of annoying them or wasting time. Deep down I know it’s ridiculous but on the surface it guides me to keep things to myself which so far has not served me terribly well.

The holiday break has no doubt complicated things too, surgeons like to tie things up for the year in nice packages and I’m done nicely with the delivery of that MRI result. I remember an allusion to some kind of 6-week follow up, so my plan is to keep that date even if they don’t. One thing I’ve learnt after all this time fighting to get my answers is that I should trust myself. I doubted my pain up until the day of my surgery; as I lay in that holding bay waiting to go into theatre I kept thinking: this is stupid, you’re wasting everyone’s time and money, they’re not going to find anything. I was completely wrong and so I’ve learned to trust the process and trust my gut instinct, which is maybe why I was so quick not to put up a fight. I need my questions answered so I know what to do next.

Something happened in how I see my endometriosis in the past 16 days, I went from being relieved that I finally having an answer to resenting it. The treatment at the moment means dealing with some pretty significant pain and swallowing strong pain medication which only makes me even more exhausted. It messes with your emotions too and can blow things out of proportion when you’re trying to remain calm and level-headed. I recall one afternoon a few days ago when the pain had reached a whole new level of hell, and I didn’t have any Tramadol on hand, sitting on my bedroom floor crying and whispering: “take it back, I don’t want it anymore.” I know I was saying this because I had asked for it, I wanted it to be endometriosis so I would have a reason for the pain because I couldn’t handle another second longer of having no reason. How does the relationship change so quickly? I think it comes from imagining your life and future with the disease and being okay with that comes from knowing what that future is. When  I look I can’t see what it looks like yet, whether it will grow back and I’ll need more surgery, whether I’ll need help conceiving children, or if prescription pain killers will play a major role. In order to see what the future looks like in my head, I need to ask these questions and I need a team so I have people on my side. I’ve been so grateful to find a social networking site just for girls with endometriosis because it’s a beautiful community full of support and it grows every day. Knowing you can vent or share with people who understand is incredibly valuable, and so far it’s helped me get through some hard days.

So where do I go from here? The surgery is over and I kind of got what I wanted and yet I feel unfinished, the journey has only just begun and yet I’m already feeling alone. When so much has happened so fast the hangover leaves you with hospital bills, pain, and a slowly healing reminder of everything you’ve been through in the form of a scar. To further quote from the aforementioned Buffy tune: “why is the path unclear, when we know home is near? Understand we’ll go hand in hand but we’ll walk alone in fear”. I cannot be alone in this anymore, so my goal is to not be afraid of asking for what I want. I want answers, and I want to read them for myself with assistance. I speak the jargon so I want to see the reports, the radiology summaries, the notes from the procedure. I want to see what the surgeons thought as they looked upon the endometriosis because that will help me understand. Then perhaps finally, I’ll be able to see what the future looks like.

Wishing all my endo sisters a pain free weekend.

Feeling The Calling

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Actual angels in plaid scrubs… yes plaid. The Wesley kit their surgical team out in only the best. 

In September I applied to a new degree. I’ve just completed my Bachelor of Arts in English Literature and Criminology, which hails from a time where I was going to be teacher, and next year I’m starting something new. The very first thing I ever wanted to be was a nurse, before I even really fully understood what it meant to be one, before I moved on to wanting to do medicine in year 10. I decided I wanted to be a teacher after that and nursing was forgotten until my second year of university. I remember suddenly missing the medicine, exacerbated by long study sessions in the Mater Hospital library where a table of happy nursing students let me sit with them while I studied a potent combination of physiology, statistics, and modernist literature. They were so nice and incredibly grateful for my physiology knowledge which more than once helped quash the frightened stares that ensued after one of them would read a tricky question. Hearing them quiz each other on  nursing topics and being more interested in said topics than my own coursework changed my mind soon enough and I began to research whether switching to nursing was a thing that I could do. That was when I found the awesome graduate entry degree Master of Nursing Studies which lets you do a nursing degree in 2 years after your undergraduate degree, as long as you’ve done at least one undergrad science course (thanks physiology!).

That was it. But even so, I was pretty sure I was only imagining what I wanted and, like anything, I questioned if I had done the right thing. Changing a well thought out plan to something completely new has that affect, and my head swam with possibilities. Should I just go to medical school? Nope, too much chemistry…and one first year anatomy class taught me that I was not great with cadavers, or origins and insertions for that matter (thank you nursing and your awesome mannequins that are NOT cadavers!). Should I just be a science teacher to get the med feels back? Not when the biology curriculum is 62.5% plants and animals,25% genetics, and 12.5% human stuff.  No, nursing was certainly what called me the most; I had sort of, kind of, felt the calling. A very recent experience changed all that, I felt the calling for real and I knew it was for real because I’d never been more sure about what I wanted. Like a nun seeing a vision of Christ, I felt changed.

The moment came  last week as I sat in a tiny room in a rather billowing hospital gown with an angel in plaid scrubs (yes, I said plaid) named Mel. She was sweet and kind, and was the first of many nurses that day who would try to keep me calm even though I was petrified. She made jokes about the attractiveness of theatre attire and complimented my hair as she tried desperately to get it out the way of pretty much everything she was doing. Mel was the first but not the last of these angels in plaid scrubs who helped me through my surgery.  These women were amazing and it wasn’t a superhuman gesture that made it so, it was every small gesture. It was the way the nurse running the board gave me a toasty blanket and asked “you good?” with a smile as I was transported to theatre; the way the nurses in the post-anaesthetic care unit reassured me, promising me everything was okay as I woke up in my drug-induced confusion; and the nurse in recovery who tried her best to decipher my chart and provide me with some answers in an attempt to quash the anxiety that nothing had been found. As I went into the theatre, and met the rest of the surgical team, I thought how much I wanted to be just like them when I became a nurse.

The nurse who I absolutely wanted to be more than anything was the anaesthetics nurse who held my hand and cracked jokes as the anaesthetist tried to find a vein (I’m apparently a terrible stick). She seemed in love with her job, even the part that included getting me tissues. She came to see me to ask the standard set of questions a third time over when I was in the holding bay. If you’ve never been in one, it’s a little curtained cubicle where you wait to go into theatre and you are pretty much all alone. It’s guaranteed to shake the confidence of even the calmest surgical patient, because when you’re alone with your thoughts you often realise how scared you really are. It hit me hard because I was already nervous, and the person who comforted me the most was this amazing nurse. The anaesthetist and my surgeon also came to see me; both were unwaveringly kind and greatly comforting, but something about this woman was even greater. I’ll never forget the look on her face as a chime was heard over the hospital intercom and she excitedly told me, “That means a baby’s just been born!”. That’s an awesome hospital feature by the way, but she looked so happy that it made me feel less sad. Even the anaesthetist, who was still helplessly looking at my apparently veinless arm, looked cheerier. I went home after my surgery feeling like if I ever had to do it again I’d be able to. Better yet, I felt the calling. I knew absolutely that I was destined to be a nurse, to spread happiness and kindness even in the darkest of times; to be optimistic and reassuring even when the patient feels helpless. That’s what I want to be.

I’d been thinking for a while that I wanted to go into paediatrics because I work with children at the moment and for the most part I adore it, my students are awesome and surprise me every day. While there are some that annoy and frustrate me quite a bit, I can always find something about them that makes me smile. Paediatric nurses seem kind of like superheroes to me and I wanted in, and maybe I still do – we’ll see what practical placement brings, but now I may have other plans. Being a surgical nurse, or maybe even anaesthetics, seems like an area I want to explore now because of the amazing people I met. Perhaps still with children, but I’m considering adult surgery more because it’s even more scary to be completely grown up but still find yourself at your most vulnerable. I would empathise with so many of my patients, knowing their fears and concerns because they were once mine. The strength of nurses in any area is admirable and something to aspire to, but I feel a particular affinity with several areas. It’s something I look forward to exploring as I complete my degree.

Expect much nurse blogging in 2016! Feel that calling with me 😀

The Name Game

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(Okay this isn’t *that* related, I just really like this AHS gif of The Name Game from American Horror Story Asylum)

Previously I wrote about the identity crisis that comes along with chronic pain and being in “disease limbo” and the emotional torture that comes with suffering pain but having no name for it. You’d be exceedingly surprised how empowering it is to have a name for something wrong with you. Patients with mental illness often talk about the relief they feel when someone gives them a name for everything that has happened and I can see why. I sat in my specialist’s office this morning and finally I have a name. The game is over and something else has just begun, and yet I am happy.

Last Wednesday I finally had my exploratory laparoscopy in the hopes that I would finally have my answer.  When I woke up from anaesthesia I had a moment that for days I would struggle to remember if it was real or imagined, and it turns out it really happened but I got the faces wrong. What I thought I remembered was waking up and asking the anaesthetist “did they find it?”. My brain, despite many many drugs, only wanted one thing: answers. I thought I heard him say yes, and I spent four days desperately trying to remember. This morning my surgeon very helpfully put me out of my misery by confirming that yes, that did happen only it was him I was asking not the anaesthetist (oops, anaesthesia). He found endometriosis and adenomyosis, and so I finally had my name. I know a lot of people wouldn’t consider this to be super good news, but to me it’s everything. To have a reason for the pain that plagued my adolescence and has followed me into my twenties is absolutely everything to me. I’m not in between two glass windows anymore, I made my way to the other side and it’s okay here for now. I have a sisterhood of amazing women around me through the support found through hardworking and amazing organisations such as EndoActive and Endometriosis Australia. The online community is a place of great comfort with so many people sharing their stories via blogs and vlogs, so consider this my drop in a vast ocean.

The surge of relief I felt this morning has protected me so far from anxiety, I’m almost certain it will come later once the relief has worn off and the reality of my situation sets in. But I’m okay with that. I can’t regret finally getting my answer, because it’s what I wanted. I was more afraid I would wake up with a dizzy head and still no reason for why I hurt so much. I spent many a night wondering if I was crazy and no one should have to question their sanity because society tells women that their suffering is normal. It dawned upon me surrounded by some of the most wonderful nurses and doctors last week that so many of them understand and are willing to help, despite stories I’ve heard fellow sufferers tell. For every doctor that brushes one of us off with a “just go on the Pill” or a “it’s all in your head”, there is a surgeon like mine who didn’t need to be convinced because my pain did all the talking. You shouldn’t need to convince people that your pain is real, and if your doctor doesn’t take you seriously find a new one. There are people out there who can and will help if only we ask. So please ask. I was scared (okay…petrified) before I went into theatre but when I came out and realised it wasn’t horrible, I knew I had done the right thing. Today as I sat in my surgeon’s office and he showed me the proof that I had endometriosis I felt liberated, and I it reassured me that the whole thing was worth it: from the hyperventilating as the anaesthetist tried to find a vein for my IV to the anaesthesia-induced stupor I woke up in where I couldn’t remember what was real or imagined. Totally worth it, and I’d do it again and maybe I’ll have to depending on how bad this all gets but for now I’m taking comfort in my discovery.

Identity crisis, solved.

“A Job For Girls”: How Gender Stereotyping in Nursing Hurts Us All

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One may recall a statement made previously by education minister Christopher Pyne about how teaching and nursing and tend to be female-dominated professions, whereas dentistry and law are more likely to be male-dominated. I shall ignore the loaded political context of these comments and the fact that he was attempting, albeit poorly, to sell us on a policy that critics were concerned disproportionately affected women. The main focus is a widely held notion that teaching and nursing, nursing in particular, is a job for women and thus male nurses are often the butt of jokes, depicted in comedy films, and stereotyped as gay when they attempt to enter the profession. In a society where patriarchal power structures are present in many professions, including dentistry, law and medicine, we as women spend our time fighting stereotypes that insist we cannot possibly compete in such professions despite demonstrated skill and aptitude. But gender equality is just that, equality, and sometimes the situation involves men feeling unwelcome in a female dominated profession; not necessarily because of the women in the profession but because of societal beliefs about what is a man’s job and what expectations of masculinity are present for men.This can often be the case for jobs where women feel unwelcome, it may not be the employees themselves but social structures that impose gendered stereotypes on men and women. The situation in nursing is an example of how gender stereotyping hurts all of us in the profession, men and women.

Just as men are perfectly capable of being loving and emotionally attuned fathers who are not only willing but often active participants in domestic life, men are perfectly capable of being gifted nurses. Nursing is a fine balance of understanding of physiology and medicine, ability to perform delicate and technical practical tasks, and the emotional intelligence to be a pillar of support for patients of all ages, genders and nationalities. It’s a job for the person, not an entire gender. Being a woman doesn’t automatically give you an aptitude for nursing, just as being male doesn’t automatically disqualify you. It’s a profession that not all can do, much like teaching or medicine, it is a particular skill set that should come from a calling or passion. The patriarchal structures that box women into traditional femininity and sideline us as assistants or helpers also constructs men into the one-dimensional figure of the traditionally masculine male. This is problematic in a number of ways, socially, culturally, and more and more, psychologically. The norms of traditional masculinity is highly Westernised, and excludes people of other cultures who have different culturally prescribed ideas of masculinity. Intersectionality is increasingly essential for the feminist movement in order to recognise that oppression based on gender is just one facet of discrimination for many individuals and groups.

This construction of “real men” implicates any man who feels anything other than the culturally prescribes norms; he is effectively marginalised and in the field of mental health this has tangible consequences. If your gender role tells you that expression of emotions isn’t “manly” then your feelings about seeking help for mental health issues are going to be highly problematised and fear of stigma will be apparent. Additionally, if a man enters a field such as nursing these structures may place pressure on him to modify his behaviour in order to distinguish himself from the women of the profession. None of these reactions are helpful or necessary. The perpetuation of gender stereotypes is not merely a women’s issue. It is a feminist issue, for sure, as those who truly understand the goals and aims of feminism will recognise – patriarchal structures that are hurtful towards women are just as much so for men who deviate from what that system has falsely defined as normal.

Many have reiterated the notion that the role of men in feminism is to take spaces that are not feminist and make them so, and in this case both men and women have a role in making the profession a safe place for both genders. The implication that men cannot be nurses unless they are some deviation from the masculine norm is demeaning to women too. It implies that women are somehow inferior and that the profession is inferior. Nurses at present face stereotypes of hyper-sexualisation, being sidelined to the role of “assistant” to doctors instead of autonomous members of a multi-faceted health care team, and treatment as waitresses or hostesses instead of university educated medical professionals. The dimension of gender-stereotyping hurts all men and women in this profession, and needs to be acknowledged. A profession dominated by women does not make it any less professional, nor does it implicate the character of any man who belongs to the profession. The model of traditional masculinity is just as problematic as traditional femininity, in the sense that women and men are set up as binaries when any person can embody characteristics of either model.

Rejection of stereotypes which uphold archaic patriarchal structures in the nursing profession is essential for the development of the profession as a whole as it moves towards higher levels of autonomy with roles such as Nurse Practitioners, Nurse Prescribers, and other autonomous positions become increasingly common. The profession cannot engage with this development if it is shrouded in gendered stereotypes and gender used as political ammunition to make false implications about what constitutes men and women’s work. All work can be anyone’s work should they choose to engage in it.

Chronic Pain and Identity Crisis

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This time last semester I was writing a piece of research which was, for me, the hardest I’ve ever written. It wasn’t the structure or the requirements that had thrown me despite the new and challenging course content, it was my research subject. The class was advanced qualitative inquiry, a research methodology class where we were able to study whatever we wanted as long as it involved existing data such as online comments, blogs, newspaper articles etc. Inspired by the work of online support communities such as Syl and Lesley Freeman’s EndoActive AUS & NZ and Endometriosis Australia I decided to do a thematic narrative analysis of some of the extraordinary stories told in these communities. For ethical reasons I cannot share that analysis here, but those stories are readily available for anyone who is part of these online communities; the sharing and support is amazing and I’ve never seen so many strangers so willing to guide each other through the often frightening and tumultuous world of chronic pain. I found as I wrote my analysis it became harder and harder to do so without my own emotions getting the better of me, and that’s because I am currently in that frustrating land known as disease limbo…where you’re waiting to find out what the hell is wrong wth you. It is in this way that chronic pain and the process of diagnosis can trigger an identity crisis.

Before I started on this journey I was someone else. That girl wasn’t perfect, she overthought, overstudied, and under-appreciated herself on so many levels; but she didn’t know what I know now. That girl knew about endometriosis from a book she’d read at fourteen about a girl with an eating disorder who also ended up with endo (how prophetic), but she hadn’t thought on it for more than the length of the page. That girl started to become me at the age of fifteen, sitting in the corner of a library wondering “what fresh hell is this?!” as she began to notice the pain. The word endometriosis was offered to her by a concerned person, and it began to grow on her. It would take that girl until seventeen to fully become the person that I am now. At seventeen I had been trying to manage that pain all the usual ways, my GP asking hopefully every time I saw her: Is it feeling better? At eighteen I had myself a referral and I learned that when someone actually knows what they’re talking about they work fast. It took a gynaecologist all of thirty minutes to decide to not just wait around, as had been my process for so long, but to figure it out once and for all. Unfortunately the only way to track down endometriosis is to go straight to the source…exploratory laparoscopy. That was a year and a half ago. What you may already know about fast-acting specialists is that they’re not cheap, especially if you’d never thought to get private health insurance. So I’ve been waiting, and luckily it won’t be too much longer. But the wait is torturous. Many a diagnosed endo sufferer will tell you this, and my research project highlighted it, but the waiting around in disease limbo to figure out the reason for your pain is hell.

The main reason for this is that time is a fickle friend…if surgery scares the crap out of you time whispers calmly in your ear: “that’s a future you problem”. But time betrays you just as easily when you spend your time wondering what is really happening. There is a crisis of identity as you pass from being your old self, the one who knew so much less about what you know intimately now, to being someone with whichever disease you happen to draw. The time spent in the middle leaves too much time to think. The thought that I find comes up frequently, and research has told me is a thought I am not alone in, is that maybe I am crazy. Perhaps it is all in my head. Maybe I have a really low pain threshold and just cannot deal. All of these thoughts happen and make you doubt yourself and you begin to believe the crap rhetoric that is delivered to women in pain (suck it up, it’s normal, it can’t be that bad, it’s all in your head..etc.). It takes all of five minutes for me to realise how wrong I am when the pain starts. You realise it can’t be in your damn head, because it hurts too much.

The identity crisis also comes from knowing what you “probably” have, but not knowing for sure. Sometimes I feel like I am between two glass windows. One is my old self, before the pain, and I know I cannot go back but I can’t go forward either. Through the other window is everyone diagnosed with what I probably have, and while some of the things I see are terrible and terrifying they have each other and they have some kind of plan. It becomes a terrible curse after a while that you just wish you have it, because at least then there is a reason for your pain. It has a name, one that can be used to come up with a plan, one that can be thrown in the faces of those who spurt the crap rhetoric (Ha! In my head is it? Then what’s this?). I have come to a place where I am ready to be the girl who has endometriosis, because that girl will be so much more than just that. That girl will be able to carry on knowing that it is just another part of her, not her whole life. I am ready to be that girl because I cannot be this one any longer, the one who doesn’t know who she is yet. It is a sad feeling to be comforted by your specialist saying, “don’t worry, I’m pretty sure this is what you have”, because not knowing is just the worst.

The crisis of identity in the journey to finding your answer is one of the hardest things in chronic pain. The human mind seeks a logical resolution, an answer; we don’t like unanswered questions. So the psychological torment that I know is suffered by so many on that journey is one that needs to be talked about. I am grateful for those brave women who tell their endo or adeno or PCOS story, knowing that there is solidarity and empowerment in shared narrative…it is you who have empowered me with the knowledge to be unafraid of the diagnosis which may lie ahead. But for every other person who is suffering that identity crisis, know that I stand in solidarity with you. Qualitative data is some of the richest and most powerful in the field of sociology, and I have come to prefer this methodology because of all that I found out. Every comment, every blog, every post  made about this harrowing journey is one that helps another recover their identity in the face of the unknown.

A Response to ‘Women Against Feminism.’

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Imagine this:

The year is 2014. You are a white Western woman. You wake up in the morning in a comfortably sized house or flat. You have a full or part-time job that enables you to pay your rent or mortgage. You have been to school and maybe even college or university as well. You can read and write and count. You own a car or have a driver’s licence. You have enough money in your own bank account to feed and clothe yourself. You have access to the Internet. You can vote. You have a boyfriend or girlfriend of your choosing, who you can also marry if you want to, and raise a family with. You walk down the street wearing whatever you feel like wearing. You can go to bars and clubs and sleep with whomever you want.

Your world is full of freedom and possibility.

Then you…

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