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Wednesday, June 7, 2017

Medical Gaslighting

4:14 AM Posted by Tiffany Taft , ,
Ever walk out of a medical visit questioning your own reality?  Like, what the hell just happened?  I am having symptoms, right?  They are serious, right?  I wouldn't show up to see a doctor if I wasn't actually in distress, right?

The term "gaslighting" has been around for a long time, gaining in popularity in recent years, as a way to describe a strategy of psychological manipulation to make someone question their own perceptions of reality.  The term comes from a 1930s play Gas Light where a husband goes to great lengths to convince his wife she's insane and her only tangible symbol of reality becomes the nightly dimming of the gas lights in their home.

Gaslighting is a malicious act.  I don't portend in the slightest that 99.9% of medical professionals intentionally gaslight their patients.  However, there are definitely qualities of our exchanges with the medical system that can leave us feeling, well, insane.

Fundamental to this, I believe, is the inherent power dynamic that exists between doctor and patient.  Some doctors are really good at keeping that as even as possible, but at the end of the day we as patient have an inherent vulnerability.  Throw in a flimsy exam gown and we're knocked down a few more pegs.

Recently, I had an emergency room visit.  I really dislike the ER.  Not for the obvious reasons, but because I feel like the ER is one of the worst places, but not the only place, for medical gaslighting.  You have to tell your story to at least 3 different people - the triage nurse, the room nurse, the attending physician, maybe a medical student or a resident, then if a specialist is summoned you tell them and maybe their resident.  It's like nobody communicates with each other, either verbally or via the electronic medical record.

The same questions are asked in a relatively robotic manner, and each answer is received differently based on each person's personality, perspective, and bedside manner.  You can tell the nurse about your pain and receive an empathic response and tell the attending physician the exact same words and have her imply you're drug seeking.

My recent ER trip was via my gastroenterologist's clinic.  So she took me there after an exam in her office for, let's just say a lot of bleeding (I'm fine).  I didn't walk into the ER and I actually was just going to go home but was summoned by my doctor to come in after I called her because, you know, bleeding is a bad thing.

My hesitancy to do so reflects what gaslighting can do to you as a patient with a chronic illness:  "It's just some blood.  Nothing to see here.  It'll stop.  I'll be fine."

Based on her office assessment, I wasn't fine and she took me to the ER where I proceeded to sit, with her in the room the whole time, for 5 hours.  We even talked about this very topic as the parade of ER people came through, did their exams, ordered their tests, and each interacted with me in a different way.  By hour 4, I looked at her and said "this is the point where I start to feel crazy."

I had bled enough to make my clothes look like a crime scene, yet I questioned my whole reality and perception of just how bad it really was.  My gastroenterologist of 7 years, who I trust implicitly, made the ER decision after her own assessment, yet I questioned my whole reality and perception of just how bad it really was.

The tests didn't identify the source of the bleeding (as I predicted), but a couple of things were ruled out, which was good.  I have to see another doctor to check things out, but I like him and he won't gaslight me so I've got that going for me.

For a while I thought I was wrong about this phenomenon, like my reality about medical gaslighting was wrong (I think that opens up a wormhole with Morgan Freeman on the other side).  A few months ago I took a good friend to the same ER who ended up being admitted for a few days, but not before she went through a similar experience.

The nurse that night was really phenomenal and he kept us informed of the test results, plan, etc. There was a shift change during our time there so she saw 2 different attending physicians.  The first one reported that she had a normal CT scan.  Unbeknownst to him, the nurse had read us the preliminary report verbatim about 15 minutes prior which did show some things related to her Crohn's disease, but nothing super serious.  She looked at me like "did that just happen?"  The second ER physician was worse than the first; I think he discussed her gut microbiome at some point but it was probably 2 in the morning by then and we were getting kinda delirious.

To me, it was obvious what was going on with her and it was serious.  Her gastroenterologist wanted her admitted and called the ER with her instructions after she spoke with my friend about the plan.  Yet this was essentially ignored and she was put through the same maddening process that left her feeling, well, insane.  It was somewhat validating to witness this first hand with another person.  Which sounds shitty, but it was.

Seeing her experience was my own gas lights to remind me that this isn't normal.

I'm not sure what the answer is other than being aware when it's happening and doing our best to remind ourselves that we're not delusional, that our symptoms are real, that our distress is real, and we deserve good medical care.

I want to end with a genuine acknowledgement that being a physician, especially an ER physician, is a really tough job.  There are people who abuse the ER, who are seeking narcotics because of an ongoing addiction, who lie about their situation.  I don't know what the actual percentage of ER visits is that fall into these categories, and I appreciate that this reality, and the reality of the whole damn system, can foster cynicism.  I would guess until some major changes happen in our medical system, gaslighting will continue to be something we, as patients, struggle with.