Caught in the Cogs

The Mayo Clinic in Rochester, MN, is a well-oiled machine, managing to fit a handful of appointments into a single week, where it would have taken several months and many phone calls to coordinate something similar with doctors' offices in the area (plus, they know the weird stuff when your local physician has reached their limit).  When I was going to Mayos it seemed every other month, there was almost always bloodwork before the first couple of appointments.  By default, this included a fasting blood test, which meant I could only have specific foods the night before AND I could not have anything to eat until the blood draw itself.  Sometimes, this was particularly difficult when the scheduled time for blood draw wasn't until 1430.  

With this particular test, I found myself getting chewed in the cogs of that well-oiled machine.  I still got through the machine, mind you, just a bit more crumpled than I needed to be.  At certain points of my Crohn's journey, I could not tolerate not eating when I was hungry--skipping one meal meant literally three days of catching up.  So, while it seemed like something simple and routine, I was emphatically not okay doing the fasting part of the bloodwork.  I suffered in silence twice, and then (with familial prompting) thought to call and ask if I that part was strictly necessary.  Turns out, it was a pretty routine piece--something that they have as part of their standing orders.  BUT given that I was the age I was and my other medical history, it, in fact, was not necessary.  They took that particular test out of the blood draw and I was clear to eat what I needed to the day of.  

All it took was one question.  All it took was knowing to ask that one question.  The kind of pain and discomfort that this standard order caused was preventable with a single, polite inquiry via phone call.  

There was another time, when I was arranging my reconnection surgery of my ileostomy (which a few years later became a permanent colostomy), and I had foolishly made an assumption:  I had assumed that I wasn't supposed to be on my medication yet, based on previous surgeries, and I had also assumed that my local doctors and Mayos doctors might talk to one another.  It made for one furious ride home, while I made multiple calls to my GI doc after Mayos delayed the surgery for about a month so I could resume the medication.  

The material point:  I have been doing this for years, and there are still places where I get caught in the cogs of the machine of healthcare.  I've learned so much, including what questions to ask and how to get answers from both the insurance company and a doctor's office that is slow to return calls, but I've come by that information through a lot of work and experience.  

Something happened in clinical lately.  I watched a patient that had very similar behaviors to my older sibling, that they were possibly on the autistic spectrum.  It worried me that this patient might get caught in the cogs.  I could see a potential breakdown in communication happening--there were different steps that had to be taken to help the patient fully understand the circumstances.  There were some significant diagnoses and prognoses happening to that patient, and I was very much focused on recognizing their humanity while honoring their neurodiversity.  With this person, I made the code switch to speak to them in a way that we could more effectively communicate, specifically changing how I asked questions to get the information I wanted in a way that minimized confusion, stripping out most of my more colloquial turns of phrase.  It made perfect sense to me what was happening, but I couldn't figure out how to help my compatriots make that code switch in a concise and/or subtle way.  

I do not want to imply that this individual received any less care--they were absolutely treated and informed--rather, I'm highlighting the emotional exacerbations to not feeling heard that could be preemptively avoided.  I wanted to tell the other caregivers with my eyes that the client wasn't being obtuse on purpose; I wanted to tell the others how to alter their questions to get the information they actually wanted and not to imply the real question; I wanted to empower the next caregiver for this patient how to do the same.  The client's needs were being met, but there was space to communicate better.

There are places where neurotypicals get caught in the cogs, too.  There are questions that we don't know to ask; there are changes we don't know are an option; there are inconveniences that we don't recognize don't have to borne.  

How do we know these places?  By asking questions, even the dumb ones.  And it's important to teach others to ask questions, too.  This is the best way to extricate yourself from the machine.  Sometimes the answer will be "no," but that doesn't mean the time it took to ask the question was wasted--occasionally, it might be a "yes."  As a blossoming medical professional, I want you to be able to trust us, but I also want patients to understand and to be able to identify pain points that I haven't the right perspective to understand.  There are things that are a simple inquiry away from resolution; there are things that are the way they are; I cannot guess which yours might be until I hear it.  

So the short version?  Again, ask questions.  I don't mean go full-Karen.  You as a patient and/or insurance recipient have a right to understand why decisions are made the way they are made, why a particular recommendation is suggested.  If you can approach these questions with grace and genuine curiosity, you have taken great steps toward self-advocacy.