I recently vented in a rant that I had had the worst doctor-encounter since 2014, and I need to walk that back a bit. With a bit of space I realize that while it was at least top 10, it wasn’t nearly top five.
However, there were reasons it felt that way in the first days afterward, and it’s worth unpacking some of the those with a bit of distance.
Because when I say this happens all the time… All. The. Time.
- One of the doctors was rude to the nurse.
If a doctor doesn’t appear to respect the kind, helpful nurse who put me at ease and asked good questions, then I have zero expectation of the doctor listening to me, respecting my concerns, and believing me when I report symptoms and illness progression that may be outside of their training. - The medical equipment was crap, and there was no solution offered
It was an eye appointment. So the projected images need to be clear, with a high contrast. It was like trying to read a basketball score on a faded out tv from the 80s.
I explained several times that I was not able to give accurate feedback, and the doctor became increasingly short with me.
“You just said that was better”, etc.
Yeah, well, I also said both were crap.
– This could be extended to a long list of things that are wrong about the way all eye exams are administered, but the faded-out screen was the one thing that was unique to this appointment - I prepared short, clear bullet-point notes with examples, which were outright ignored. (see attached)
– One doctor skimmed through part of one section, didn’t read or process the rest, made assumptions that were clearly contradicted by both my spoken words and the printed words on the page.
– The other doctor handed it back to me without even the pretense of looking at it. - One of the doctors appeared to have wandered in off the street.
He rushed in, wearing blue jeans and casual street clothes, holding what appeared to be a lunch sack.
– Do we all have rushed morning? sure. (This was now 10am, but okay.)
– Do most doctors have zero intention of extending themselves beyond the standard decision-tree that they can recite in their sleep? Yes.
—>But throwing it in my face in such an obvious way is a special kind of idiocy. I’m already going to suspect that you don’t want to be here, don’t care about my case, and don’t really care what happens after I leave the office. Don’t give me proof. - Dismissal of concerns and declining to offer next steps
a. “Look this really isn’t that bad >shrug<“.
– Me: it’s getting worse.
– Them: but I mean, how can you tell?
– Me: because, wearing my glasses, there are things I could read a year ago that I can’t read now.
– Them: >squints eyes in a highly dubious way< “right….”
b. “Everybody’s eyes change when they get older >shrug<”
if I’m being referred to Neuro-Opth by two MD eye doctors I’d say that this is NOT what typical eye-age changes look like, but sure.
c. “Your eye scans don’t reflect what you’re telling me”
Me: right, I’m aware —
and then we proceed to cover all the information in the bullet points I gave them over and over again.
d. Me, in a last ditch Hail Mary: “look, if the nerve pain in my right side is actually vascular in origin — there are vascular and connective tissue disorders like Lupus, Sjorgen’s, Ehlers-Danlos, etc, which could be causing this. Which means that intervention with medicine like immunosuppressants could prevent it from getting worse.”
Them: but… you don’t have that diagnosis?
Me: No, which is my point — further investigation into this eye issue could be the tipping point in which my other symptoms are able to be diagnosed and treated.
Them: ….. I mean, you are of course welcome to go back and talk to another doctor about this… (it’s hard to get the passive-aggressive vibes to come across accurately in print)
I fully expected this appointment to be a waste of time – that I would leave with little more than a confirmation that “it isn’t Nuero-Opth”.
However.
The one thing I was hoping for was some – any – sort of direction on where/who to go to next. Instead, they acted like I was the idiot in the room for attempting to prevent my own vision loss.
I was also hoping that they would not be passive-aggressive and annoyed that I wasn’t following their script.
Things I, as a patient, had to orchestrate in order to get there that day:
1. See an optometrist and get a referral to an MD
2. See an MD and get a referral to to Neuro-Opth
3. Get an MD second opinion because I did not believe the issue was Neuro. Still sent to Neuro-Opth
4. Schedule Neuro-Opth which has a 7 MONTH wait
5. See another optometrist and request that I be allowed to prove the issue is cornea with rgp lenses
6. See a third MD armed with the rgp lense info. After a 30 second look at scans and a 4 minute discussion of our respective house cats, referred to His Own (as in, the doctor that he, himself, sees) Neurologist
7. Decided to wait out the 7 month appointment in order to have further proof that the issue is not neurology
8. Contacted independent patient advocate for advice on composing readable and helpful notes
9. Spent several hours composing and editing notes, and creating image examples
10. Spent several hours fixing printer
11. Spent nearly an hour researching Neuro-Opth location, parking, and transport options
12. Carefully scheduled the two days prior so I would have enough rest and energy to appear coherent, answer questions correctly and be able to advocate for myself
13. Drove myself to the appointment (for point of reference, I leave the house, driving myself, only two times per week. To do so for this appointment speaks to the importance of it).
14. Paid for all of this, including the wasted appointments that led nowhere, gas to get there, patient advocate, copays, and medical insurance on a fixed income.
Received: nothing. Complete waste of time. Zero direction, zero referral back to a different specialist for further investigation.
The notes I brought to the appointment: