I’m not entirely sure why I’m mentioning this, other than I sympathize deeply with your wife. What an absolute ordeal.
Oof. That one resonates so much for me - even living in a country with far better healthcare.
There's a term I dislike but is apt: medical misogyny. Basically it's, "systemic, conscious, or unconscious gender biases [which] affect how a patient is treated by the healthcare system."[1]
Systemic in particular is that basically the vast amount of knowledge amassed in the medical sciences has come from studying men. Comparatively little for those not assigned male at birth.
One of my kids has complicated health issues, pretty much from the time they hit puberty. If they hadn't had me (someone born with a penis) advocating for them and attending most medical appointments throughout their teenage years I'm pretty sure they would be dead now.
My most appalling memory is a gastroenterologist who patronisingly told my kid with a diagnosed anxiety disorder which exacerbated awful gut pain from irritable bowel syndrome that, "If you weren't anxious all the time you wouldn't be in so much pain." We both had a good cry in the car park after that appointment. It certainly set treatment of their IBS back a couple of years at least.
(Fortunately after a string of bad ones, we found a GE that treated them with compassion, and not as a gastrointestinal tract with an annoying human around it.)
Whew, yeah, touched a nerve there. So, medical misogyny. It's a thing.
[1] https://australiainstitute.org.au/report/medical-misogyny-in...
This is a loaded UK-centric policy/humanities term and I would suggest using sex/gender disparities instead which does not imply animus and is therefore much more useful for productive discussion.
Implicit and systemic biases in medicine are very real and supported by ample data.
> Systemic in particular is that basically the vast amount of knowledge amassed in the medical sciences has come from studying men. Comparatively little for those not assigned male at birth.
At least for the US this hasn’t been the case in clinical research for the past 15 years or so which in aggregate leans a bit more female than male if anything. Some specific fields still have sex disparity in clinical research for a variety of reasons but that’s the minority these days.
Yes, the implication of animus is the chief reason for my dislike of the term. The main failing of most alternatives is they don't roll off the tongue as easily or succinctly.
> this hasn’t been the case in clinical research for the past 15 years or so which in aggregate leans a bit more female than male if anything.
Oh yes, I didn't mean to imply the situation isn't improving (and an overcorrection in research at this point in time is probably a good thing, IMO (if it is in fact happening, which I struggle to believe (but that's my issue))).
The body of knowledge in medical science is a lot older than 15 years though, so I would think it will take a lot of time and effort to equalise.
Thanks for your response. I found it constructive and informative to my own thinking.
My doctor's diagnosis? Depression. Oh, and my foot arch must be getting higher.
My sister's best friend going up lost her dad because he was told that the pain from recent dental work couldn't be that bad and that he should just tough it out. The infection broke through into his brain and he died very quickly.
My dad almost died from lupus because doctors wouldn't test him for it because it primarily affects women.
Women, statistically, are more neurotic. I'm sure that affects how doctors diagnose them, and it shouldn't. However, I don't like things like what you're describing to be attributed to misogyny. It could be, but it also could just be that doctors focus way too much on horses when it could actually be a zebra. Hopefully LLMs will help with that - when GPT 3 or so came out way back when, one of the first things I did to test it was to give it what I knew about my condition at the time. It told me 3 tests I should have done, one of which was correct, and one of which I still haven't managed to get a doctor to give me after trying for many years.
If you blame it on misogyny the actual problem won't get fixed.
Also, in this sibling comment thread[1] to yours I discussed with haldujai why we both dislike the term, specifically because of the animus is implies, which is inaccurate.
It is however, a term you will hear in discussions like this, so it is good to know what it means, and the fact that the problem as defined exists, no matter what you call it.
Even obvious things like “I can’t move my left hand after 1 hr of light typing” were excruciating difficult to get diagnosed by “board certified” specialists with 20 years experience. It’s not that they were wrong —- they flat out weren’t even interested in making diagnosis nor conducting a simple test that could lead anywhere. Financial costs and insurance requirements weren’t the issue either.
“My chest hurts after walking slowly to the mailbox. ‘Well, you waited 1 month for this appointment, we’ll do an ultrasound in 2 months, discuss it 1 month later, and then maybe figure out next steps “
I cannot imagine a more dysfunctional aspect of modern society. The Department of Motor Vehicles is a paragon of efficiency by comparison.
Imagine if I told my boss the critical issue escalated by a major customer would be handled that same way…
There are a lot of bad software engineers but they tend to get weeded out since most are employees. Imagine paying them 2x-3x the amount with no direct managerial supervision and even more poorly informed customers. The name for this is “doctors”. The game is played by not trying to be great in medical practice - instead the strategy is only to be financially successful.
People with intellectual disability continue to receive substandard healthcare as program to train doctors risks closure
~ https://www.abc.net.au/news/2026-06-03/intellectual-disabili...
in which an above average fitness footballer with Downs Syndrome has a lung infection ignored by doctors.
Honestly, I think when you're facing any sort of potentially serious health issue you need a wingman coming to the appointments with you. Someone who can hopefully be a little more emotionally removed. Who can ask the questions you didn't think of to make sure you've covered everything. Who you can debrief with afterwards to make sure you've taken in all the important information you were just scrambling to wrap your head around while you were in the room. And sometimes to argue on your behalf.
Done this with my kidult for most of their life, obviously. Did it with my dad's oncologist visits for prostate cancer. Had it myself with cancer and other times. You just need someone you trust in your corner when you're vulnerable.
FYI I’m not American. Your medical misogyny comment is dead on, in my opinion. This sort of thing can happen anywhere.
> FYI I’m not American.
Whoops. Guess that was an assumption on my part. Here I am, doing human things…
I was talking to a specialist in a field where a rare condition has started to trend on TikTok. It was also eye-opening to learn how much they're struggling under the weight of bad referrals for patients who don't have the condition they claim.
That's not to say they aren't sick. The patients are suffering from something. However between hours of TikTok and ChatGPT they can convince themselves they have a condition and learn how to convince their primary care doctor to put in the referral
This doesn't work as much for conditions that have objective criteria like blood tests, where it's easy to filter out the patients who have both negative blood tests and a PCP who hasn't tried to investigate other explanations.
An example of a popular self-diagnosis is MCAS: Mast Cell Activation Syndrome. MCAS specialists are overwhelmed by self-diagnosed patients trying to get appointments who have never even have a tryptase blood test. If you go on to any subreddit or forum for chronic health conditions you will find a large number of people there have been convinced they have MCAS, and new members are told they might have MCAS too.
This is creating a separate fatigue among providers who need to keep their guard up at all times so they can maintain focus on the patients who really have these conditions instead of letting their schedules get destroyed by patients who don't. It's a hard problem.
I have a worsened lifelong issue because of repeated sub-optimal "solutions" to a problem, such that the best long-term solution was found by the THIRD doctor that looked at my problem. "Solutions" from the first two guaranteed my problem will forever be worse than it would have been (solely due to their treatments), if only the third doc's solution had been considered/presented first. Even worse, I was a teenager and young adult when dealing with the first two. My mistake for not doing my own comprehensive research, apparently -- the thing we entrust doctors to do for us...
There are going to be casualties of doctor's triage, and those stories will be beyond upsetting, but most would agree its better than an 8 month wait to get an MRI.
Even the uncontrolled, daily falling.
It’s wild how much of a practice medicine is but people take the first diagnostic opinion because their profession
In my case, the misdiagnosis up front was entirely reasonable. (EDIT: Well, maybe not. See below.) The generalized anxiety disorder diagnosis from my PCP made a lot of sense given what was happening. I hadn't had delusions yet at that point. It was... a mixture of panic attacks, night sweats, jaw pain and a greatly increased level of anxiety compared to my baseline.
My PCP did run a bevy of tests (chest x-ray, and took tons of blood) to try and rule out anything biological.
Given what was known at the time, I think my PCP did the right thing. And when my symptoms really escalated (delusions, suicidal ideation, falling and hitting my head), my PCP suggested going to an ER. And that's what we did.
I think it was the ER that really dropped the ball. Given the sudden onset of everything, the fact that they didn't get me in front of a neurologist is, in retrospect, really quite baffling. That's when I went to a psychiatric hospital, where I spent 3 nights.
I only got out of that hospital due to total luck. My neighbor was old college buddies with a neurosurgeon. (We had no idea about it. It just came up randomly when my neighbor was dropping my son off at home for us.) That was the critical connection because he ended up talking to the neurology department at Brigham and Women's, then talked to the psychiatric hospital and was the one who facilitated my transfer.
My wife tried to do it on her own but they wouldn't allow it because I had been medically cleared. She had to give 3 days notice to pull me out. Or otherwise, by default, I would see a neurologist after 2 weeks. According to the psychiatric facility.
I really don't know if I would have made it that long. The encephalitis wouldn't have killed me in that span of time, but I was in an extremely dark place.
I'm also really lucky that this is an autoimmune disorder that has a pretty objective diagnostic criteria: a positive antibody test in your cerebral spinal fluid. You "just: need to have your spine tapped to get that though. Fun times.
So you have had a life changing experience. I am really sorry for all the pain and fear this has caused you and your family. Iv ig is a miracle for autoimmune trainwrecks. It saved one of my loved ones lives too. I am so glad you are still here with us.
I know nothing about your recent reality. I can tell you this. Psychosis, immense fear, and near death experiences aren't something to brush off. Perhaps best not dwelled on, but I hope you either stay in therapy or begin therapy with someone who understands trauma. Not to discuss it as trauma, but to keep tabs.
You may be good to work! Good to be a kick ass dad! But if there are things you haven't dealt with here they may rear their head at a random inconvenient time down the road. Maybe you are all good, I bet you are. But please remember to take care of your mind.
Wishing you and your family the best. Stay well!
Reminder that he is the one who is ill, not his wife.