I’ve been amplifying the #DoctorsAreDickHeads hashtag the last few days but haven’t actually shared my own story. It starts there, traverses through #DoctorIRespect and #DoctorsAreAwesome and ends with #DoctorsAreHuman (something for everyone!)
And of course it is not the entire profession, but the profession has a major systemic problem when it comes to disabled patients and those with #chronicillness that it seems to have little to no knowledge or self-awareness of. THAT – not the hashtag – is the problem #medtwitter
#MedTwitter, your patients have been trying FOR YEARS to speak out on hashtags like #spoonies #pwd #medtrauma and no one has listened (on this platform) at this scale until patients got....confrontational #DoctorsAreDickheads
Here, for example, is a vintage thread from FB (it’s also about the cruelty of friends and family but many dozens of appalling medical stories): facebook.com/22422544104853… #DoctorsAreDickheads
When I shared one of the most off the wall #DoctorsAreDickheads things I‘d experienced, it started a thread where people shared hundreds of interactions and experiences that were much, much worse.
But trust me we know, it’s really not all of you. And we know this because if we stick it out through the first 5-20 of your colleagues, we’ll find you and you’ll actually believe us and take the time to try to truly, truly help. But what a gauntlet to run.
And that’s why I decided to start this thread. After perusing the #DoctorsAreHuman hashtag and reading so many defenses of the kind “we all get tired” or “everyone has a bad day and messes up.” “We aren’t perfect.” I see so many doctors missing the point entirely.
What #DoctorsAreHuman fails to understand is that #DoctorsAreDickheads was not started by a patient who had a case of strep throat and you were mean about it because something went wrong at home that morning.
Or even the case of a single, horrific medical error, which even the BEST of doctors working within the highest-performing systems will commit several times over the course of their careers.
Those kinds of errors we get. Those kinds of errors can be minimized but never truly avoided because #DoctorsAreHuman and every medical intervention involves risk. That is not what this is about.
#DoctorsAreDickheads was started by EDS patients. It was amplified by the disabled and chronically ill. It is the primal scream of people who have had repeated, negative, traumatic, dehumanizing, life-threatening experiences, often with dozens of doctors, over the course of years
It went viral because of patients where the ratio of negative to positive experiences is more like 5:1 to 30:1. This is not one doctor having one bad day.
#DoctorsAreDickheads is the story of Selma Blair, whose MS went undiagnosed for 15 years, of my friend’s ruptured brain cyst that was dismissed as anxiety, of nearly every person I have ever met (at this point, that’s probably 3000-5000 people) who lives with a chronic illness.
It is because the AVERAGE experience of these patients over hundreds of interactions is not that #DoctorsAreAwesome or even that #DoctorsAreHuman. It is that #DoctorsAreDickheads. That core problem needs to be absorbed and understood if it is to be changed.
And if you are an MD, I hope you care about changing it. Because it’s actually *not* that hard.
I got sick after a 104+ fever in 2011. 10 days later I KNEW something was deeply, deeply wrong because I started experiencing symptoms I had never experienced in my life. If you’re curious, my story in short: ted.com/talks/jen_brea… My story in long: @unrestfilm
I was went to my PCP with my *correct* diagnosis of #MECFS within the first three months of onset and was told “there’s a lot of overlap with depression.” Granted, I was only dizzy and walking into walls then. A year later, these were my symptoms. #DoctorsAreDickheads 
You know what? I am actually going to #DoctorsAreHuman that one. He was actually a really nice guy who tried repeatedly to help, but his form of help was to tell me over and over again, as I deteriorated over the course of 18 months, that I wasn’t actually sick.
Apparently the threat of “health anxiety” was > than the threat I was sick. Reassurance > getting to the bottom of it. The bottom turned out to be an absolute beast of an illness. #DoctorsAreDickheads
The delay in diagnosis and that first year I spent still trying to ski, kayak, live is why I became so severely ill. It changed the course of the rest of my life. It was “nice” but it was still gaslighting. It stole from me the best chance I had of recovery #DoctorsAreDickheads
The doctor who thought that the clumsiness in my right foot was just my imagination, took the Iiterature I brought in about my most likely diagnosis and threw it on the floor #DoctorsAreDickheads
Ascribed all my other symptoms to a migraine, gave me an injection of Imitrex which promptly caused my brain to start burning #DoctorsAreDickheads
Freaked out when he came in and saw me crying and screaming, but then I guess was reassured when the computer told him it wasn‘t a known side effect (again, that imagination of mine!) then declared my foot clumsiness/ataxia/gait issue cured. #DoctorsAreDickheads
It only took 7 years but I just found out THIS week why that happens: my right hip is unstable and subluxes. #DoctorsAreDickheads
That time I randomly woke up in 2011 and couldn’t use my right leg because it felt numb and my propioreception was totally messed up so I went out and bought a cane and used it for three days? Turns out I don’t have Munchausen’s! I’m just hypermobile. #DoctorsAreDickheads
(Note to future doctors out there: there is always, always, always a reason and it’s almost never “in the head.” Unless your patient is a liar, which is EXTREMELY rare as compared to the case where your patient is actually sick and trying to get help. #medtwitter
It may be that you’re not the doctor who is going to find that answer but empower them. Tell them you believe them and encourage them to keep fighting and searching until they find the answer.) #medtwitter
That time I went to the ER because I couldn’t stand upright, walk with a stride longer than 2 inches, touch my chin to my chest or turn my head. I was told by a doctor who did not touch or examine me, that I had a headache and should take some aspirin #DoctorsAreDickheads
On the phone with the house call doctor who said: “I sounded young and healthy and couldn’t possibly need her help.” I was supine, unable to lift my head, legs, or arms. I laughed. “See, you’re laughing. You’re absolutely fine.” #DoctorsAreDickheads
That doctor who took my husband in the other room and said, “You know, it’s OK if you leave her.” #DoctorsAreDickHeads
The neurologist who told me all of my symptoms were being caused by some distant trauma I might not remember. #DoctorsAreDickHeads
Yes, he was only following his training, but God is that idea idiotic. Diagnoses based on the *absence* of evidence have no place in medicine. The bodies of all the people (mostly women) who have been misdiagnosed with conversion disorder... #DoctorsareDickheads
I didn’t know then what I know now. I decided to keep an open mind. I ignored my body’s pain signals, contemplating whether they could be psychosomatic, walked home, crashed, and spent the three months before my wedding completely bedridden. Fun times! #DoctorsAreDickheads
That time I went to the ER and was diagnosed by three different people with anxiety and repeatedly offered psych meds, before finally being diagnosed with torticollis...even though my head was locked dead center, not twisted to one side. #DoctorsAreDickheads
Honestly, I’ve had it easy. I’m an annoying-ass patient who reads a lot and advocates for herself, but I self-present as credible and always have a man in the room, which lets be real, increases my credibility.
I’m from the same social class as the doctor sitting across the table. I’m cis, thin, light-skinned. I don’t have a mental health diagnosis. What happens if you don’t have the education or social capital, or if English is not your first language. What happens to everyone else?
I shared my experiences because they are mine but they are nowhere near as bad as what has happened to others.
I didn’t die of lung cancer because my preexisting diagnosis of ME meant no one took my lung cancer symptoms seriously. I wasn’t ripped from my home by psychiatrists for three years. No one medically kidnapped my child. #DoctorsAreDickheads
So what it does it take to become a #DoctorIRespect? It’s really simple, actually. If you have no idea what is going on, if you don’t know the answer, just tell us. Say, ”I don’t know.” That’s it.
There was a rheumatologist who must have been in his 70s that I saw when I first got sick. He couldn’t diagnose me but he said, “It’s clear that you’re very sick, I believe you, but not all illnesses have a name yet. Yours may never have a name.” #DoctorIRespect
It was a period of intense physical suffering and uncertainty, I was surrounded by specialists either proffering really silly diagnoses or whispering about my mental health #DoctorIRespect
And here was this man who had seen everything and knew enough to know that there is so much in medicine that is unknown. It was honest and it felt like a deep hug from a grandfather. I cried. #DoctorIRespect
Another #DoctorIRespect move? Treat us like we can understand and take the time to explain *why*.
I have an empty sella (not incidental – I have intracranial hypertension) and was once concerned that it could be affecting my pituitary function.
My endocrinologist went on Google, found a diagram of an adrenal gland, and explained the loss of function we would expect to see and in what order if my pituitary had been affected #DoctorIRespect
Gah! The thread broke here. Here is the thread:
