The Unique Challenge Of Becoming A Patient

Imagine this scenario: you go to a place you hang out all the time.  Maybe it’s a restaurant, or a park or the local YMCA.  In any case, it’s the place where, to paraphrase “Cheers”, ‘everybody knows your name’.  One day, however, you walk in.  Everything looks different.  No one acknowledges you as you’re accustomed.  Instead of the usual, friendly, casual, “Hey (nickname), how you doing?  How’s that renovation/hobby/kid coming along?”, you are greeted “Hello, and welcome to the YMCA.  How can I help you Mrs. So-and-So?  Can you please give us your member number?”

You’d probably feel a little disconcerted.

Infertility, in so many ways, has changed even the fundamental ways I view myself.  The day I became a patient was a major blow.  Most of the time, I’m a nurse.  I’m the caregiver.  I am not the one being cared for.  It’s taken me a long time to even acknowledge how distressing I find to be present in a healthcare setting and not be on the professional side of the equation.  I’m no longer Kat-the-nurse who casually interacts with other staff as a peer or professional colleague, suddenly I’m Mrs. A the patient who is here for a test.  It’s as though Katherine A is two very different women.  This dissonance, predictably, does a number on me.

I’ve never been sure if it’s better or worse to have treatment or tests in my own workplace or outside.  I had my disastrous HSG/panic attack in front of what felt like half of radiology – a group I know well and interact fairly frequently with in my professional role.  I remember clearly wondering if they’d ever be able to view me again as a nurse or if in their minds, I would always be remembered for crying uncontrollably.  For the record, everyone there was breathtakingly lovely and professional and did an excellent job of keeping everything very confidential.  Despite that professionalism and caring, I still felt deeply embarrassed.

On the other hand, it can be very frustrating when I’m getting care in my RE’s office or in an unfamiliar setting.  My usual doctors and their staff more or less know who I am, have generally interacted with me at some point in a professional context and take that into account.  My RE and his staff, on the other hand, have never worked with Kat-the-nurse.  They just know Mrs. A, the patient.  It can feel intensely demeaning when people are trying to explain treatments or conditions in layman’s terms, even when intellectually I know they’re just trying to make sure I understand.  A huge part of my identity rests in the fact that I’m an ‘insider’ to the healthcare community, that I speak the language.

I’m also used to being one step removed from all those difficult choices regarding health treatments.  How will I pay for this new medication?  Do I trust that what the physicians and nurses are telling me is accurate?  Is a major procedure my only viable option?  Will my insurance cover any of this?  Do I really need that test?  Do the benefits outweigh the considerable risk?  These are just a few examples of the questions patients are faced with daily.  In the end, as a nurse, I’m not the one who makes the decision.  I can care, offer empathy, offer support, explain aspects or side effects, call the physician to come better articulate risks versus benefits, contact social services, give an appropriate intervention, or just listen depending on the situation.  I’m not the one who consents to surgery, for example, the patient and/or family depending on the legalities is the one who ultimately must make that decision.

Right now, Arthur and I are in the process of trying to decide whether to go for one more IUI cycle since the previous one looked so good, or cut our losses and jump straight to IVF.  It’s been awful.  One day I’m set on doing another IUI, the next I’m certain that IVF is the better pathway.  I’ve written out tons of pros and cons for each and still can’t come to a decision.  I just want someone to tell me exactly what I should do.  As a patient, however, this is my choice.  My RE, Dr. D and his staff can’t make it for me.  They can give me their best recommendations, listen, and empathize, but they cannot make the final call.  It’s happening to me, to my body, and I have to live with the results.  I’m not used to being in that position and it upsets me to be there.

One component of denial for me has been refusing to classify myself internally as a patient.  I know how to talk to a physician as a nurse.  I know how to talk to other nurses as a professional myself.  I’m mortified to be talking to my RE sobbing my eyes out because that’s not what nurses do.  I’m afraid I’ll look stupid or unprofessional, even though I know intellectually I’m entitled to have and express my feelings about my care.  I want to be the tough one who marches through brutal treatments with a smile on my face, the one who is always pleasant, the one who has it all together and doesn’t panic ever.

Because somehow, in my mind, I can’t allow myself to be a patient with real fears, real sadness, real problems, real physical pain, real emotional pain.  That would mean I’m not in familiar territory, that I’d have to acknowledge that I’m suddenly uncomfortable in a place that has always felt like home, that I’m not fulfilling my accustomed role.  And that would be…terrifying.  Force me to face the reality that I have a life-altering condition.  That my life, that Arthur’s life, will not be the same after this.  Facing that reality means that eventually I have to face my deepest fears: that I will never have children or that I will never resolve.

So I get angry, although I almost never say what I’m thinking out loud.  I’m resentful when a nurse misses my good vein (“no one misses that vein, it’s practically a garden hose!).  I’m furious when my RE chides me that I need to be more positive (“if I wasn’t positive, would I be putting myself through this torture?  I’m not a masochist, I don’t enjoy pain”).  When someone tells me I need to breath slowly in through my nose, out through my mouth during my panic attack in radiology, my first instinct is to wail: “That’s my line!  Don’t tell me that!”.  Instead of acknowledging my own real distress, I critique the clinical technique of others in my head because then I can almost pretend it’s happening to someone else.  Every time I cry or lose control of my emotions in a healthcare setting, I feel like I’ve somehow failed.

It’s certainly made me more empathetic and cognizant in my professional role of the emotions and physical effects of being treated for a major condition.  I always wanted to be a great nurse, give great care, and be an advocate, but until I had this happen, coping mechanisms and the ways people deal with conditions were items that I’d studied in textbooks.  Now, I’ve had brought home to me in a very vivid, personal way how incredibly important excellent advocacy, giving excellent care to patients is for me as a nurse.  It has given me new insights and understanding.  While I’d 100% rather not have infertility and this experience, I’d be foolish since I’m stuck with the condition not to use those lessons to better care for people.

I’ve largely been extremely fortunate to have fantastic, caring, wonderful physicians and their nurses and staffs along this journey, and I’m realizing just how blessed I am by that care.  It’s something I am excited to understand and work with all my might to pass on that kind of care as a nurse to those I care for.

Balance.  Hopefully someday, I’ll find it.


2 thoughts on “The Unique Challenge Of Becoming A Patient

  1. Wow. This post really hit home with me. I’m also an RN and have really stuggled being on the ‘other side of the fence’. As if having a uterine biopsy wasn’t hard enough.. the embarrassment I felt sitting in my REs procedure room – sobbing like a baby – was really unsettling.
    I remember silently telling myself to stop carrying on – You’re a nurse for god’s sake! Out of anyone YOU should be able to handle this!
    I don’t know why we make ourselves feel like it should be somehow “eaiser” for us – because we understand how everything “works”. If anything – I think it sometimes makes it harder.
    *hand squeeze and gentle understanding*

    • Thanks for your comment. It really is sort of a difficult place to be – both the professional and the patient. I think you are totally right that it makes it really hard – I don’t have quite the same faith many people have that doctors will cure me because I know the limitations of medicine. Thinking of you and hoping your treatments work out.

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