Gaslighting is simply another form of abuse or discriminatory behaviour no different from sexism, racism or ageism. This is why I am so shocked with the survey results.
You asked for feedback on what could improve the situation, this is one hugely important one (I think) coming at it from a system design perspective: Often patients don’t have the right language to adequately describe what is happening to them, and this is a barrier to good care. For example, someone who doesn’t know what vertigo is, may describe this as simply “dizziness” which is quite non-descriptive, nor does it screen whether or not it is 24/7 constant, or provoked by head movement. Rarely do GPs, the first line of contact, or even neurologists, take the time to help probe a patient to better (or more accurately) articulate their symptoms (and patients may have not had the time to introspect carefully, self-examine, and think to describe them better).
In essence, physicians are taught to think about symptoms in very specific terms, and can fail to remember patients can’t always arrive at the right descriptions on their own, making it harder to get adequate care and taking many visits. A large communication gap also exists as well as a time issue.
An easy way around this, that doesn’t eat up physician’s time, is to develop electronic waiting room surveys (on a tablet) that ask the patient why they are here today, providing questions to help discern and describe their symptoms with greater specificity. E.g., if “dizziness” is the reason for the visit (key word of what is input), the app gives differentiating questions to determine what kind of dizziness, when it occurs: e.g., “Is it light headedness? Is there a sensation of motion (vertigo)? When standing up? When standing for long periods of time? Is it made worse with motion? On head turns? Is it constant or episodic (with definition/examples)? Etc.” The doctor reviews this data, it serves as a time, education, and communication bridge between doctors and patients, where there’s a huge gap. Can also help to teach patients to be more self aware, synthesize observations about, and better communicate their issues to health providers.
This could be powerful diagnostic aid, to help busy doctors, but they’d have to be well designed, and they could include algorithms for referral etc, especially when a symptom is reported that is beyond a generalist or other’s skill set. In short, some of the fallibility of humans, and human situations, can be carefully addressed and augmented with technology. This could help remove some tendency towards dismissiveness and bias, perhaps. A diagnostic aid such as this can also help level the playing field between new and experienced physicians, and perhaps even between generalists and specialists, at least in terms of better recognizing and knowing when to refer for specialized problems, and who the most relevant specialist is likely to be in “fuzzier” problems. I shouldn’t have had to figure this out on my own as a patient, so I could “calibrate” my language accordingly, and request the most relevant tests and specialist from physicians, but sadly, I’m 3/3 for having to do this on diagnoses I basically figured out myself, before I could get a physician to refer, test, or treat as needed. That’s not good.
spot on ! Thats a brilliant. solution. So easy for patient and clinician. Think how much time, money, and heartache it would save. I too learnt that unless you use exact clinical terms whatever you say is dismissed, you are told it doesn not fit any diagnosis ( as if we all react the same way to a illness) , it is all in your head blah blah , ,learnt it the hard way too. Took years .
Then I learnt if you did use exactly the right clinical terms they can also get suspicious and think that because you are using google that you are hypochondriac, overdiagnosing...... so you keep on using evidence based logial questioning and not giving up until you get evidence based logical answering but oh the time, the exhaustion, teh frustration .it takes to get it sorted............
Yes to both of these! If you're too dumb, they blow you off because you didn't articulate it correctly. If you're too smart (a much greater sin) they almost sneer at you and accuse you of googling. I had a GP do this to me when I told him I wanted a booster for whooping cough. When I explained my actual reasoning (which did not include google), he backed way off, looked a bit deflated, and said, "Oh, OK." But the point is, his first inclination was to just assume I was too stupid to know why I wanted what I wanted and to go on the attack. So it is exhausting, yes, having to tippy toe around doctors' unconscious biases and monstrous egos, and go to every appointment girded for battle.
Having read the article and other comments, I'm amazed that nobody has mentioned the N-word.
Not that N-word, the other one: Negligence. Being very concerned about my disease progression, it was necessary to be very assertive with my MS Team. Eventually I said "I've asked about XYZ but you won't investigate it. Just to clarify my thinking, if it was subsequently found to be XYZ and you'd previously rejected it, would that make you negligent?" I didn't need to say more, the point had been made. Not long after, my case was being brought up at MDT meetings and the tests etc. were conducted. Worth saying that I'm happier with my team these days.
I can't believe how arrogant, high-handed, dismissive some HCP's can be when they pay so much insurance to guard against negligence claims, because when gaslighting situations get seriously out of hand, that's where they could end up.
Sorry to say that I expected the survey results to be a shock for you & the researchers. Part of me was wondering why you were opening this can of worms. Medicine is such a power imbalance on so many levels. PwMS are left feeling more hopeless and helpless when they’re communicated with this way. And I must add traumatised.
Would you also call medical gaslighting, the rubbish that is written after the appointment that is then sent on to our GP’s. Again, another story different than that said and done. They have a great imagination, that may affect any future medical procedures.
My first neurologist wrote a letter to my GP that did not record anything of what was discussed or happened at my visit . He wrote that
I could not have optic neuritis because the hospital where I was diagnosed could not have had a neurologist back then ( it did, he was a UK trained neurologist and had published research papers – thank goodness he started me on the right treatment of steroids within 48 hours of my first symptoms) )
I could not have any cognitive problems ( despite all the numerous examples of the cognitive difficulties that I told him ) because I used the word Decibels! ( well it’s a word I have lots of experience with because; I studied physics at university, my daughter got Meniere’s disease at age 7, I worked in and managed an audiology department, and if that was not enough he would have seen in my notes, that a few months before I had SSNHL with audiograms on alternate days for a while )
I did pass a simple short test in the quiet room but he did not ask about my background educationa and abilities . he did not discuss the test or results .
When he didn’t seem to be listening to my explaining my cognitive problems I gave examples of how my capabilities had deteriorated and he said’ oh that happens to all of us. Good grief how many people did he tell that to that had problems ?
He wrote I did not have cognitive problems yet looked at my MRI and told me I had a brain of an 84 year old ( 20 years older) with lots of white matter lesions ( an MRI for just my ear but a wonderful radiologist saw there were all -of -brain problems and did a full brain MRI instead)
He wrote that the lesions must be due to micro vessel disease yet he did not take my BP. I tried to tell him that I was fit and healthy , that my BP was normal around 120/80 or less, pulse 50 -60 – he did not record that.
Its not just the sheer inaccuracy of what was written it is also the false impression that it sent to other medical professionals about me potentially instilling preconceived biases .
Why was he so biased and incompetent ? he was a nice kindly man but 1. He was a leader in his field , power ( dismissive of me) and near retirement age ( lost interest and lost skills) 2. His specialty was Stroke and Rehabilitation ( so his norm was the mostly old, CVD, seriously cognitively impaired )
And becasue of him I have had a hard time, and expense getting things sorted - thankfully there also some brilliant professionals too - just far too few though .
The slightly surprising thing is how much of a surprise this is to you. Few within the patient community are remotely surprised.
I agree with you that this is not confined to MS but is ubiquitous, which speaks to the point that this is a systemic issue in the medical profession.
We, the patients, are far from perfect and I wonder what behaviours could be learnt in patients to get the most from the relationship?
The NYT article has excellent suggestions. My stock response if I am not happy with the way things are going is to put on a big smile, ask that my requests/questions are written down, the HCP response recorded and the explanation why they declined/disagreed etc
Notes completed after the patient has left rarely reflect the patient view of proceedings. They tend to reflect how the Dr would like to recall the encounter, no matter how it deviates from reality.
I can’t think of anyone I have ever spoken to that hasn’t experienced it to some extent.
Recently. a friend who is a well educated, articulate, middle-aged white man was recently the recipient of a v rude and high-handed dismissal from his neuro when he had the temerity to enquire about HSCT. I was shown the follow-up letter and even that was pretty terse. My friend was very upset and that is one relationship that is beyond repair.
I subsequently met the Neurologist who had done this and was expecting a difficult individual. Instead, they were charming and good company in a social setting.
Why strange? I was told by my charming ex-Neuro that HSCT would kill me and other negative things until the day I left for Russia, so I stopped taking her calls. Saw different registrars for a few years and Tuesday I met my named Neuro who didn’t introduce herself to me, totally ignored my new difficulties and put them down to Covid. She didn’t ask anything to realise some problems go back 7 years and that my gp had asked me to ask her about them. She had already made up her mind and discharged me summarily. Said drugs have too many side effects damaging the immune system and no good at my age. I know and research so much that I never ask for drugs. She left me high and dry, to just call a local ms nurse if I want to talk to someone. They’re not experienced like the National hospitals ms nurse but will they be able to help without being registered with a neurologist .
Before she ushered me out the room, she also said it was a drug clinic and it wasn’t suitable for me. It’s only ever been a normal annual check up clinic. The same as the one where Dr G was my Neuro many years ago before he moved on to Barts. He was always open and honest with me. Honestly to me, is the best policy, as although we might not like what we hear, we learn to adapt, make the most of it and get out to enjoy life the best we can.
No shock here, generally HCP seems to now not be centred around “care” for the patient - although I do understand how we get there, with people being repeat offenders visiting HCP for no real reason. It seems that a lot of HCP just want to pass you onto another HCP and so it goes on. There was a delay in my diagnosis as I had a concurrent back issue but 4+scans and no-one spotted the obvious scars on my CNS. So sadly I’d suggest some incompetence too. It’s not only gaslighting but downright rudeness and abject stupidity sometimes- was told by one neurologist ( still employed but not mine!!!) that he had a lot of patients worse than me….
Leading up to dx I had some trouble with my first neurologist. My LP was inconclusive regarding OCB's. So by McDonald criteria no DX. Walking distance was 400m at that time and I had in my eyes clear worsening of symptoms over de last 3 years. There was no room for discussion about those last 3 years. So I went for a second opinion, took my list with symptoms over the last 3 years with me. My new neurologist took my list very serious and she and her team gave me my dx of ppms so I could start with Ocrelizumab ASAP. Being assertive is so important.
I can relate to this. One thing I left out was prior to diagnosis, for 5+ years, I was working, feeling awful, having a plethora of sensory issues and was diagnosed with peripheral neuropathy. Absolutely no follow up. My legal fellows were aghast. You don’t have that from nothing, they lectured. Are you a drinker? A diabetic? By that time, my balance was on the fritz I noted when trying to backpack or ski. Took several more years to get a diagnosis, and that was after a few years of cancer treatment and surgeries. One in the states must be vigilant of the money angle regarding DMTs. (Ie. Now: Your only choice is siponimod.) In the beginning, only my GP took me seriously. I never go to a physician with more than a just a few questions. Also, if one is a complicated patient, I’ve found a few sadistic physicians, rather than read my printed history, insist on making me recite it. Talk about traumatizing. I’ve more than once gotten up and walked out. That makes me a noncompliant patient.
This is a very interesting topic and has given me pause for thought.
Let’s look at what gaslighting is. It is manipulating someone by psychological means into questioning their own sanity. Even the movie was about this. In the movie, the husband was deliberately trying to hurt the wife. It is about intentionally causing harm.
I don’t believe our doctors are deliberately trying to hurt us, so I think using this term is to describe what is happening is incorrect. I sincerely believe doctors (and most people for that matter) are good intentioned and go into this career with the hope to help people.
Using the term gaslighting to describe what is happening is inflammatory and sets up an ‘us against them’ attitude which is not helpful. It may even cause harm to the patient doctor relationship.
There is definitely a problem, though. The data shows it.
Perhaps we could try to reframe it into something a little less toxic? A little less inflammatory?
Neurologists are high on the charts you show, but is it because the illnesses and symptoms they deal with are harder to define and diagnose? Is it because they don’t have good quantifiable tests for fatigue and cog fog?
Are some of the problems associated with the business of healthcare in general? I am in the U.S. where our doctors are limited to the time they can spend with patients and also the tests they can order by the insurance companies. I often have to advocate for myself with the insurance company, not the doctor. The doctors are also overwhelmed by the number of patients they need to see in a day. Not that this is an excuse, but it could explain how sometimes symptoms may be brushed aside.
Are doctors sometimes callous, or dismissive, or bad communicators? Do they fail to understand patients sometimes? Heck yeah! Do they perhaps need training in listening and better communication? Probably. But to say they are intentionally trying to cause harm by using the term gaslighting is going to far in my opinion.
Please don't shoot the messenger. I didn't invent or appropriate the term 'gaslighting' it seems to have happened by stealth. The NYT's article have been very influential in cementing the use of the term to describe the phenomenon and the BMJ then took up the challenge. I agree we need something less inflammatory. I also agree that HCPs are not doing it deliberately; i.e. they are not trying to cause harm.
Maybe we all should get into a room together, have a debate and sort thing out. In this divided world that is easier said than done.
"Education, education, education" of medical students would undoubtedly be helpful but from what I understand there is much more training about communicating with patients than there used to be. The thing is, it doesn't seem to have the desired effect in all cases - as seen by the responses to the survey and this article. Why? Is it that those who specialise in disciplines like neurology are primarily interested in research, not people? As part of their job they "have" to see people but really they'd rather be researching and writing papers. In the same way, many university academics would rather be writing papers and researching than teaching/lecturing but their contracts demand that to do the former they have to do the latter. The result - some pretty awful teaching by people who hate it and don't like the students much either. Feel there is something of a parallel with certain medics.
Yes, to all of this. A friend of mine from college, an ER doc, along with several other docs from his state's medical association, used to hold parties for incoming medical students. After a bit of socializing, they would stand aside and watch the kids and basically hold a contest amongst themselves trying to figure out which specialty each one would pick. He said they usually did really well picking them, just from watching them interact socially. Meaning that there really ARE personality types that gravitate to the various specialties. His take on neurologists? They are very cerebral and all about the difficult and interesting diagnosis. They love the challenge of that, it's why they picked such a top-o-the-difficulty-heap speciality. The flip side is that once that puzzle is solved, they mostly aren't terribly swift at caring for actual patients. His observation, not mine. Not at that time at least.
Before, individual symptoms were treated (except for fatigue which was put down to either stress or depression) according to protocol with varying levels of success but nobody connected the dots for 6+ years.
Would it have made a difference? Given the very mediocre (at best) efficacy of OCR in PPMS, hard to say really. An MRI at the right time might have allowed for alemtuzumab back when it was still available first line but would it have changed anything?
Medical gaslighting and gender bias in medicine are subjects about which I am pretty passionate. They are huge problems that have been around pretty much forever, but are just now truly bubbling up from the medical midden. I could go on far too long, but I'm going to just post a couple of links to recent articles that, while they are not about MS, reveal beautifully the attitudes that undergird and drive the dismissals and biases.
These are two articles from The Atlantic, both about long covid. Hopefully you will be able to get to them since I tried to make the link a shareable free article - I supposedly get several of these a month.
This first one you could give a miss - unless you're interested in long covid of course - except for a few statements in there - quoted below - that acknowledge things pretty clearly:
"...more than 90 percent of the patients the center has seen—was a puzzling group “where we couldn’t see what was wrong,” Chen said. These tended to be the patients who had originally had mild to moderate symptoms. They were overwhelmingly women, even though men are typically hit harder by acute COVID‑19. ...And they tended to be young, between the ages of 20 and 50—not an age group that, doctors had thought, suffered the worst effects of the disease. "
And then there were these:
"Medicine’s history with hard-to-identify chronic illnesses, particularly those that mainly affect women, has not been a good one. For decades now, marginalized patients who have felt mysteriously unwell—with ME/CFS, with post-treatment Lyme disease syndrome, with Ehlers-Danlos syndrome, and more—have banded together into activist groups to try to legitimize their suffering. The same is happening online in the long-hauler groups, which are full of patients who have been met with disbelief by local physicians. "
Sound familiar to anyone here?
And this....
"Amy Kontorovich, for instance, has been treating dysautonomia patients for almost a decade, and she’s become passionate about advocating for patients whose conditions are dismissed. “Most of my patients were young women between the ages of 20 and 45. And the story was often one of a long diagnostic journey,” Kontorovich told me. “Patients had been told symptoms were in their head or purely due to anxiety.” Her patients epitomize the kind whom the medical system frequently fails—by contesting the reality of their illness, sending them from specialist to specialist, loading them up with drugs without getting to the root cause."
What do both of those indicate other than gaslighting on a grand scale?
But really, the above is old news to most of us here. It was actually this classic which stuck with me and is why I remembered the above article so clearly. I was gobsmacked to read the attitude I've long suspected, stated so blatantly:
"...also because when patient groups began calling attention to it (long covid), they were reaching out to clinicians who were primed to listen. After all, many of those who first reported the experience of relapses and persistent trouble are doctors, like Jessica Cohen. Another such doctor is Dayna McCarthy, who struggles with long-COVID symptoms. “These are doctors that we work alongside,” Chen told me. “And we know that these aren’t patients that are faking it. If my fellow doctor, whom I work with closely, is telling me that they can’t get through the day because they can’t think straight, I’m going to believe that.”"
So it's now a real condition, but only because it is being reported by doctors who are apparently the better sort of people, more honest and trustworthy, while patients' reports of the same things can't be trusted because patients are "faking it". Ouch.
The next article, also dealing with long covid, and which should really be entitled "What Goes 'Round Comes 'Round", or "Hoist on Their Own Petard", highlights that once a doctor becomes a patient, all bets are off as to whether he, but mostly she, is accorded professional status and courtesy, or whether that doctor morphs into a "faking it" patient and is treated accordingly.
"I’ve interviewed more than a dozen similar people—health professionals from the United States and the United Kingdom who have long COVID. Most told me that they were shocked at how quickly they had been dismissed by their peers. When Karen Scott, a Black ob-gyn of 19 years, went to the emergency room with chest pain and a heart rate of 140, her physicians checked whether she was pregnant and tested her for drugs; one asked her if her symptoms were in her head while drawing circles at his temple with an index finger. “When I said I was a physician, they said, ‘Where?’” Scott said. “Their response was She must be lying.” Even if she had been believed, it might not have mattered. “The moment I became sick, I was just a patient in a bed, no longer credible in the eyes of most physicians,”".
...and this...
"ME/CFS and other chronic illnesses that are similar to long COVID disproportionately affect women, and the long-standing stereotype that women are prone to “hysteria” means that it’s still “common to write us off as crazy, anxious, or stressed,” Oller said. This creates a cycle of marginalization. Because these conditions are dismissed, they’re often omitted from medical education, so health-care workers don’t recognize patients who have them, which fuels further dismissal. “No one’s ever heard of POTS at med school,” Small told me. (POTS, or postural orthostatic tachycardia syndrome, is a disorder of the autonomic nervous system that is common in long-haulers.) It doesn’t help that medicine has become incredibly specialized: Its practitioners might have mastered a single organ system, but are ill-equipped to deal with a syndrome that afflicts the entire body."
And finally, the book that really helped ME put my and my family and friends' experiences in a greater context and crystallized it all for me, and which I cannot recommend enough:
Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick Paperback – by Maya Dusenbery
And all that is just the tip of the iceberg of what we out in the world really deal with. And there is absolutely no reason to hope that neurology would be any different or better in a less-gaslighting-than-thou contest. Other than a few anemic pointers out there on how to walk the tightrope of showing too/not enough emotion, presenting our concerns using too many/not enough exquisitely correct medical terms and generally taking lessons in "the care and feeding of neuros" (yes, there are MS forums I've visited in the past that have had whole threads with that title) there isn't really that much we can DO about it, but knowledge being a good thing and all...
And as my last comment on this topic, I'm going to post this, another thing I recalled - and was able to find again - from a forum I used to visit in my early dx days.. It is a glaring example of a physician morphing into the "faking it" patient. (Sadly, this women has long been gone from that site, so I can only assume the worst, given her fast progression and age) While her story is reasonably awful, the responses, of which there are many, contain more than a few stories that are at least as bad.
So anyone thinking that the blow-off and the gaslighting just can't possibly be as bad as most of us understand that they are, is truly in denial.
Prof G I haven't experienced gas lighting with any of my HCPs during my MS diagnosis fortunately, it might be because I was in my early 40's before I received my diagnosis and I've had support from my family to learn about my MS and I'm still learning about my own MS as I head towards my 50th birthday next year, you live and learn with your own MS! I wish I'd come across MS selfie earlier in living with my own MS, it's so insightful, keep up your good work, it's appreciated.
While not to dismiss the findings, one has to keep in mind that this survey contains a certain amount of bias inasmuch as the respondents would have been in large part those that read your previous article on gaslighting, and included readers drawn to the topic by their own experiences, and therefore surely were more likely to fill out the survey if they had suffered medical gaslighting than if they had not. So people with no gaslighting experiences is likely significantly under represented.
Personally, I haven’t spoken to one person (at least one who is female) that hasn’t been dismissed by doctors regarding at least one valid medical concern. As I work(ed) in a supportive healthcare role, the topic came up often, though in different terms and many different people.
I think such experiences are more common than people realize. I also think there are many contributing factors are at play, not just physicians, especially in public systems. There really are a good number of unfortunate experiences though, I’ve had more than my fair share (Canada).
Sure I am sure it is biased. The kind of people who subscribe to or read MS-Selfie are very different to those who don't. However, it does not distract from the size of the problem.
Given the unrandom nature of the respondents I think it would be best to focus on the raw counts, and not the percentages (i.e. your "90%"). Is gaslighting a problem? Yes. Is it a 90%-size problem? We cannot know due to the survey's sampling bias.
You asked for feedback on what could improve the situation, this is one hugely important one (I think) coming at it from a system design perspective: Often patients don’t have the right language to adequately describe what is happening to them, and this is a barrier to good care. For example, someone who doesn’t know what vertigo is, may describe this as simply “dizziness” which is quite non-descriptive, nor does it screen whether or not it is 24/7 constant, or provoked by head movement. Rarely do GPs, the first line of contact, or even neurologists, take the time to help probe a patient to better (or more accurately) articulate their symptoms (and patients may have not had the time to introspect carefully, self-examine, and think to describe them better).
In essence, physicians are taught to think about symptoms in very specific terms, and can fail to remember patients can’t always arrive at the right descriptions on their own, making it harder to get adequate care and taking many visits. A large communication gap also exists as well as a time issue.
An easy way around this, that doesn’t eat up physician’s time, is to develop electronic waiting room surveys (on a tablet) that ask the patient why they are here today, providing questions to help discern and describe their symptoms with greater specificity. E.g., if “dizziness” is the reason for the visit (key word of what is input), the app gives differentiating questions to determine what kind of dizziness, when it occurs: e.g., “Is it light headedness? Is there a sensation of motion (vertigo)? When standing up? When standing for long periods of time? Is it made worse with motion? On head turns? Is it constant or episodic (with definition/examples)? Etc.” The doctor reviews this data, it serves as a time, education, and communication bridge between doctors and patients, where there’s a huge gap. Can also help to teach patients to be more self aware, synthesize observations about, and better communicate their issues to health providers.
This could be powerful diagnostic aid, to help busy doctors, but they’d have to be well designed, and they could include algorithms for referral etc, especially when a symptom is reported that is beyond a generalist or other’s skill set. In short, some of the fallibility of humans, and human situations, can be carefully addressed and augmented with technology. This could help remove some tendency towards dismissiveness and bias, perhaps. A diagnostic aid such as this can also help level the playing field between new and experienced physicians, and perhaps even between generalists and specialists, at least in terms of better recognizing and knowing when to refer for specialized problems, and who the most relevant specialist is likely to be in “fuzzier” problems. I shouldn’t have had to figure this out on my own as a patient, so I could “calibrate” my language accordingly, and request the most relevant tests and specialist from physicians, but sadly, I’m 3/3 for having to do this on diagnoses I basically figured out myself, before I could get a physician to refer, test, or treat as needed. That’s not good.
spot on ! Thats a brilliant. solution. So easy for patient and clinician. Think how much time, money, and heartache it would save. I too learnt that unless you use exact clinical terms whatever you say is dismissed, you are told it doesn not fit any diagnosis ( as if we all react the same way to a illness) , it is all in your head blah blah , ,learnt it the hard way too. Took years .
Then I learnt if you did use exactly the right clinical terms they can also get suspicious and think that because you are using google that you are hypochondriac, overdiagnosing...... so you keep on using evidence based logial questioning and not giving up until you get evidence based logical answering but oh the time, the exhaustion, teh frustration .it takes to get it sorted............
Yes to both of these! If you're too dumb, they blow you off because you didn't articulate it correctly. If you're too smart (a much greater sin) they almost sneer at you and accuse you of googling. I had a GP do this to me when I told him I wanted a booster for whooping cough. When I explained my actual reasoning (which did not include google), he backed way off, looked a bit deflated, and said, "Oh, OK." But the point is, his first inclination was to just assume I was too stupid to know why I wanted what I wanted and to go on the attack. So it is exhausting, yes, having to tippy toe around doctors' unconscious biases and monstrous egos, and go to every appointment girded for battle.
I’ve experienced this my entire adult life by many doctors. It’s very frustrating and difficult to get second opinions at times so you’re stuck.
I do find all the information your provide to help me better self advocate for myself. I’m so thankful for your outreach to all of us!
Having read the article and other comments, I'm amazed that nobody has mentioned the N-word.
Not that N-word, the other one: Negligence. Being very concerned about my disease progression, it was necessary to be very assertive with my MS Team. Eventually I said "I've asked about XYZ but you won't investigate it. Just to clarify my thinking, if it was subsequently found to be XYZ and you'd previously rejected it, would that make you negligent?" I didn't need to say more, the point had been made. Not long after, my case was being brought up at MDT meetings and the tests etc. were conducted. Worth saying that I'm happier with my team these days.
I can't believe how arrogant, high-handed, dismissive some HCP's can be when they pay so much insurance to guard against negligence claims, because when gaslighting situations get seriously out of hand, that's where they could end up.
Sorry to say that I expected the survey results to be a shock for you & the researchers. Part of me was wondering why you were opening this can of worms. Medicine is such a power imbalance on so many levels. PwMS are left feeling more hopeless and helpless when they’re communicated with this way. And I must add traumatised.
This is a comprehensive and helpful follow-up post. Thanks for taking the time to analyse survey answers and provide constructive feedback.
Would you also call medical gaslighting, the rubbish that is written after the appointment that is then sent on to our GP’s. Again, another story different than that said and done. They have a great imagination, that may affect any future medical procedures.
Ha ha oh yes indeed.
My first neurologist wrote a letter to my GP that did not record anything of what was discussed or happened at my visit . He wrote that
I could not have optic neuritis because the hospital where I was diagnosed could not have had a neurologist back then ( it did, he was a UK trained neurologist and had published research papers – thank goodness he started me on the right treatment of steroids within 48 hours of my first symptoms) )
I could not have any cognitive problems ( despite all the numerous examples of the cognitive difficulties that I told him ) because I used the word Decibels! ( well it’s a word I have lots of experience with because; I studied physics at university, my daughter got Meniere’s disease at age 7, I worked in and managed an audiology department, and if that was not enough he would have seen in my notes, that a few months before I had SSNHL with audiograms on alternate days for a while )
I did pass a simple short test in the quiet room but he did not ask about my background educationa and abilities . he did not discuss the test or results .
When he didn’t seem to be listening to my explaining my cognitive problems I gave examples of how my capabilities had deteriorated and he said’ oh that happens to all of us. Good grief how many people did he tell that to that had problems ?
He wrote I did not have cognitive problems yet looked at my MRI and told me I had a brain of an 84 year old ( 20 years older) with lots of white matter lesions ( an MRI for just my ear but a wonderful radiologist saw there were all -of -brain problems and did a full brain MRI instead)
He wrote that the lesions must be due to micro vessel disease yet he did not take my BP. I tried to tell him that I was fit and healthy , that my BP was normal around 120/80 or less, pulse 50 -60 – he did not record that.
Its not just the sheer inaccuracy of what was written it is also the false impression that it sent to other medical professionals about me potentially instilling preconceived biases .
Why was he so biased and incompetent ? he was a nice kindly man but 1. He was a leader in his field , power ( dismissive of me) and near retirement age ( lost interest and lost skills) 2. His specialty was Stroke and Rehabilitation ( so his norm was the mostly old, CVD, seriously cognitively impaired )
And becasue of him I have had a hard time, and expense getting things sorted - thankfully there also some brilliant professionals too - just far too few though .
Thanks
The slightly surprising thing is how much of a surprise this is to you. Few within the patient community are remotely surprised.
I agree with you that this is not confined to MS but is ubiquitous, which speaks to the point that this is a systemic issue in the medical profession.
We, the patients, are far from perfect and I wonder what behaviours could be learnt in patients to get the most from the relationship?
The NYT article has excellent suggestions. My stock response if I am not happy with the way things are going is to put on a big smile, ask that my requests/questions are written down, the HCP response recorded and the explanation why they declined/disagreed etc
Notes completed after the patient has left rarely reflect the patient view of proceedings. They tend to reflect how the Dr would like to recall the encounter, no matter how it deviates from reality.
I expected it to be there but not close to 90% that is the shock. And there are the personal stories.
I can’t think of anyone I have ever spoken to that hasn’t experienced it to some extent.
Recently. a friend who is a well educated, articulate, middle-aged white man was recently the recipient of a v rude and high-handed dismissal from his neuro when he had the temerity to enquire about HSCT. I was shown the follow-up letter and even that was pretty terse. My friend was very upset and that is one relationship that is beyond repair.
I subsequently met the Neurologist who had done this and was expecting a difficult individual. Instead, they were charming and good company in a social setting.
Strange.
Why strange? I was told by my charming ex-Neuro that HSCT would kill me and other negative things until the day I left for Russia, so I stopped taking her calls. Saw different registrars for a few years and Tuesday I met my named Neuro who didn’t introduce herself to me, totally ignored my new difficulties and put them down to Covid. She didn’t ask anything to realise some problems go back 7 years and that my gp had asked me to ask her about them. She had already made up her mind and discharged me summarily. Said drugs have too many side effects damaging the immune system and no good at my age. I know and research so much that I never ask for drugs. She left me high and dry, to just call a local ms nurse if I want to talk to someone. They’re not experienced like the National hospitals ms nurse but will they be able to help without being registered with a neurologist .
Whereas I can think of 3 people I know from 65-72 that are all on cladribine as their neuros believe it is worth treating.
Before she ushered me out the room, she also said it was a drug clinic and it wasn’t suitable for me. It’s only ever been a normal annual check up clinic. The same as the one where Dr G was my Neuro many years ago before he moved on to Barts. He was always open and honest with me. Honestly to me, is the best policy, as although we might not like what we hear, we learn to adapt, make the most of it and get out to enjoy life the best we can.
No shock here, generally HCP seems to now not be centred around “care” for the patient - although I do understand how we get there, with people being repeat offenders visiting HCP for no real reason. It seems that a lot of HCP just want to pass you onto another HCP and so it goes on. There was a delay in my diagnosis as I had a concurrent back issue but 4+scans and no-one spotted the obvious scars on my CNS. So sadly I’d suggest some incompetence too. It’s not only gaslighting but downright rudeness and abject stupidity sometimes- was told by one neurologist ( still employed but not mine!!!) that he had a lot of patients worse than me….
Leading up to dx I had some trouble with my first neurologist. My LP was inconclusive regarding OCB's. So by McDonald criteria no DX. Walking distance was 400m at that time and I had in my eyes clear worsening of symptoms over de last 3 years. There was no room for discussion about those last 3 years. So I went for a second opinion, took my list with symptoms over the last 3 years with me. My new neurologist took my list very serious and she and her team gave me my dx of ppms so I could start with Ocrelizumab ASAP. Being assertive is so important.
I can relate to this. One thing I left out was prior to diagnosis, for 5+ years, I was working, feeling awful, having a plethora of sensory issues and was diagnosed with peripheral neuropathy. Absolutely no follow up. My legal fellows were aghast. You don’t have that from nothing, they lectured. Are you a drinker? A diabetic? By that time, my balance was on the fritz I noted when trying to backpack or ski. Took several more years to get a diagnosis, and that was after a few years of cancer treatment and surgeries. One in the states must be vigilant of the money angle regarding DMTs. (Ie. Now: Your only choice is siponimod.) In the beginning, only my GP took me seriously. I never go to a physician with more than a just a few questions. Also, if one is a complicated patient, I’ve found a few sadistic physicians, rather than read my printed history, insist on making me recite it. Talk about traumatizing. I’ve more than once gotten up and walked out. That makes me a noncompliant patient.
I know it's late to make a post to this topic, but I JUST read this and it seemed like it needed to be here.
While Doctors May Hear Patients, Are They Really Listening?
— Empathy training can help doctors communicate better with patients
by Rosa E. Mino, PhD
September 20, 2022
The VERY first sentence of this piece:
" "Assume all patients are lying," my professor told my class during my first year of medical school."
https://www.medpagetoday.com/opinion/second-opinions/100831?xid=nl_secondopinion_2022-09-25&eun=g1575492d0r
There seems to be a theme here...
This is a very interesting topic and has given me pause for thought.
Let’s look at what gaslighting is. It is manipulating someone by psychological means into questioning their own sanity. Even the movie was about this. In the movie, the husband was deliberately trying to hurt the wife. It is about intentionally causing harm.
I don’t believe our doctors are deliberately trying to hurt us, so I think using this term is to describe what is happening is incorrect. I sincerely believe doctors (and most people for that matter) are good intentioned and go into this career with the hope to help people.
Using the term gaslighting to describe what is happening is inflammatory and sets up an ‘us against them’ attitude which is not helpful. It may even cause harm to the patient doctor relationship.
There is definitely a problem, though. The data shows it.
Perhaps we could try to reframe it into something a little less toxic? A little less inflammatory?
Neurologists are high on the charts you show, but is it because the illnesses and symptoms they deal with are harder to define and diagnose? Is it because they don’t have good quantifiable tests for fatigue and cog fog?
Are some of the problems associated with the business of healthcare in general? I am in the U.S. where our doctors are limited to the time they can spend with patients and also the tests they can order by the insurance companies. I often have to advocate for myself with the insurance company, not the doctor. The doctors are also overwhelmed by the number of patients they need to see in a day. Not that this is an excuse, but it could explain how sometimes symptoms may be brushed aside.
Are doctors sometimes callous, or dismissive, or bad communicators? Do they fail to understand patients sometimes? Heck yeah! Do they perhaps need training in listening and better communication? Probably. But to say they are intentionally trying to cause harm by using the term gaslighting is going to far in my opinion.
Please don't shoot the messenger. I didn't invent or appropriate the term 'gaslighting' it seems to have happened by stealth. The NYT's article have been very influential in cementing the use of the term to describe the phenomenon and the BMJ then took up the challenge. I agree we need something less inflammatory. I also agree that HCPs are not doing it deliberately; i.e. they are not trying to cause harm.
Maybe we all should get into a room together, have a debate and sort thing out. In this divided world that is easier said than done.
Thanks Gavin. It would be great to all get in a room to talk about the complexities of this topic.
"Education, education, education" of medical students would undoubtedly be helpful but from what I understand there is much more training about communicating with patients than there used to be. The thing is, it doesn't seem to have the desired effect in all cases - as seen by the responses to the survey and this article. Why? Is it that those who specialise in disciplines like neurology are primarily interested in research, not people? As part of their job they "have" to see people but really they'd rather be researching and writing papers. In the same way, many university academics would rather be writing papers and researching than teaching/lecturing but their contracts demand that to do the former they have to do the latter. The result - some pretty awful teaching by people who hate it and don't like the students much either. Feel there is something of a parallel with certain medics.
Yes, to all of this. A friend of mine from college, an ER doc, along with several other docs from his state's medical association, used to hold parties for incoming medical students. After a bit of socializing, they would stand aside and watch the kids and basically hold a contest amongst themselves trying to figure out which specialty each one would pick. He said they usually did really well picking them, just from watching them interact socially. Meaning that there really ARE personality types that gravitate to the various specialties. His take on neurologists? They are very cerebral and all about the difficult and interesting diagnosis. They love the challenge of that, it's why they picked such a top-o-the-difficulty-heap speciality. The flip side is that once that puzzle is solved, they mostly aren't terribly swift at caring for actual patients. His observation, not mine. Not at that time at least.
Since the diagnosis, no complaints.
Before, individual symptoms were treated (except for fatigue which was put down to either stress or depression) according to protocol with varying levels of success but nobody connected the dots for 6+ years.
Would it have made a difference? Given the very mediocre (at best) efficacy of OCR in PPMS, hard to say really. An MRI at the right time might have allowed for alemtuzumab back when it was still available first line but would it have changed anything?
Medical gaslighting and gender bias in medicine are subjects about which I am pretty passionate. They are huge problems that have been around pretty much forever, but are just now truly bubbling up from the medical midden. I could go on far too long, but I'm going to just post a couple of links to recent articles that, while they are not about MS, reveal beautifully the attitudes that undergird and drive the dismissals and biases.
These are two articles from The Atlantic, both about long covid. Hopefully you will be able to get to them since I tried to make the link a shareable free article - I supposedly get several of these a month.
https://www.theatlantic.com/magazine/archive/2021/04/unlocking-the-mysteries-of-long-covid/618076/?utm_source=copy-link&utm_medium=social&utm_campaign=share
This first one you could give a miss - unless you're interested in long covid of course - except for a few statements in there - quoted below - that acknowledge things pretty clearly:
"...more than 90 percent of the patients the center has seen—was a puzzling group “where we couldn’t see what was wrong,” Chen said. These tended to be the patients who had originally had mild to moderate symptoms. They were overwhelmingly women, even though men are typically hit harder by acute COVID‑19. ...And they tended to be young, between the ages of 20 and 50—not an age group that, doctors had thought, suffered the worst effects of the disease. "
And then there were these:
"Medicine’s history with hard-to-identify chronic illnesses, particularly those that mainly affect women, has not been a good one. For decades now, marginalized patients who have felt mysteriously unwell—with ME/CFS, with post-treatment Lyme disease syndrome, with Ehlers-Danlos syndrome, and more—have banded together into activist groups to try to legitimize their suffering. The same is happening online in the long-hauler groups, which are full of patients who have been met with disbelief by local physicians. "
Sound familiar to anyone here?
And this....
"Amy Kontorovich, for instance, has been treating dysautonomia patients for almost a decade, and she’s become passionate about advocating for patients whose conditions are dismissed. “Most of my patients were young women between the ages of 20 and 45. And the story was often one of a long diagnostic journey,” Kontorovich told me. “Patients had been told symptoms were in their head or purely due to anxiety.” Her patients epitomize the kind whom the medical system frequently fails—by contesting the reality of their illness, sending them from specialist to specialist, loading them up with drugs without getting to the root cause."
What do both of those indicate other than gaslighting on a grand scale?
But really, the above is old news to most of us here. It was actually this classic which stuck with me and is why I remembered the above article so clearly. I was gobsmacked to read the attitude I've long suspected, stated so blatantly:
"...also because when patient groups began calling attention to it (long covid), they were reaching out to clinicians who were primed to listen. After all, many of those who first reported the experience of relapses and persistent trouble are doctors, like Jessica Cohen. Another such doctor is Dayna McCarthy, who struggles with long-COVID symptoms. “These are doctors that we work alongside,” Chen told me. “And we know that these aren’t patients that are faking it. If my fellow doctor, whom I work with closely, is telling me that they can’t get through the day because they can’t think straight, I’m going to believe that.”"
So it's now a real condition, but only because it is being reported by doctors who are apparently the better sort of people, more honest and trustworthy, while patients' reports of the same things can't be trusted because patients are "faking it". Ouch.
The next article, also dealing with long covid, and which should really be entitled "What Goes 'Round Comes 'Round", or "Hoist on Their Own Petard", highlights that once a doctor becomes a patient, all bets are off as to whether he, but mostly she, is accorded professional status and courtesy, or whether that doctor morphs into a "faking it" patient and is treated accordingly.
https://www.theatlantic.com/health/archive/2021/11/health-care-workers-long-covid-are-being-dismissed/620801/?utm_source=copy-link&utm_medium=social&utm_campaign=share
"I’ve interviewed more than a dozen similar people—health professionals from the United States and the United Kingdom who have long COVID. Most told me that they were shocked at how quickly they had been dismissed by their peers. When Karen Scott, a Black ob-gyn of 19 years, went to the emergency room with chest pain and a heart rate of 140, her physicians checked whether she was pregnant and tested her for drugs; one asked her if her symptoms were in her head while drawing circles at his temple with an index finger. “When I said I was a physician, they said, ‘Where?’” Scott said. “Their response was She must be lying.” Even if she had been believed, it might not have mattered. “The moment I became sick, I was just a patient in a bed, no longer credible in the eyes of most physicians,”".
...and this...
"ME/CFS and other chronic illnesses that are similar to long COVID disproportionately affect women, and the long-standing stereotype that women are prone to “hysteria” means that it’s still “common to write us off as crazy, anxious, or stressed,” Oller said. This creates a cycle of marginalization. Because these conditions are dismissed, they’re often omitted from medical education, so health-care workers don’t recognize patients who have them, which fuels further dismissal. “No one’s ever heard of POTS at med school,” Small told me. (POTS, or postural orthostatic tachycardia syndrome, is a disorder of the autonomic nervous system that is common in long-haulers.) It doesn’t help that medicine has become incredibly specialized: Its practitioners might have mastered a single organ system, but are ill-equipped to deal with a syndrome that afflicts the entire body."
And finally, the book that really helped ME put my and my family and friends' experiences in a greater context and crystallized it all for me, and which I cannot recommend enough:
Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick Paperback – by Maya Dusenbery
And all that is just the tip of the iceberg of what we out in the world really deal with. And there is absolutely no reason to hope that neurology would be any different or better in a less-gaslighting-than-thou contest. Other than a few anemic pointers out there on how to walk the tightrope of showing too/not enough emotion, presenting our concerns using too many/not enough exquisitely correct medical terms and generally taking lessons in "the care and feeding of neuros" (yes, there are MS forums I've visited in the past that have had whole threads with that title) there isn't really that much we can DO about it, but knowledge being a good thing and all...
And as my last comment on this topic, I'm going to post this, another thing I recalled - and was able to find again - from a forum I used to visit in my early dx days.. It is a glaring example of a physician morphing into the "faking it" patient. (Sadly, this women has long been gone from that site, so I can only assume the worst, given her fast progression and age) While her story is reasonably awful, the responses, of which there are many, contain more than a few stories that are at least as bad.
So anyone thinking that the blow-off and the gaslighting just can't possibly be as bad as most of us understand that they are, is truly in denial.
https://www.medhelp.org/user_journals/show/7625/My-Journey-to-Diagnosis
Prof G I haven't experienced gas lighting with any of my HCPs during my MS diagnosis fortunately, it might be because I was in my early 40's before I received my diagnosis and I've had support from my family to learn about my MS and I'm still learning about my own MS as I head towards my 50th birthday next year, you live and learn with your own MS! I wish I'd come across MS selfie earlier in living with my own MS, it's so insightful, keep up your good work, it's appreciated.
While not to dismiss the findings, one has to keep in mind that this survey contains a certain amount of bias inasmuch as the respondents would have been in large part those that read your previous article on gaslighting, and included readers drawn to the topic by their own experiences, and therefore surely were more likely to fill out the survey if they had suffered medical gaslighting than if they had not. So people with no gaslighting experiences is likely significantly under represented.
Personally, I haven’t spoken to one person (at least one who is female) that hasn’t been dismissed by doctors regarding at least one valid medical concern. As I work(ed) in a supportive healthcare role, the topic came up often, though in different terms and many different people.
I think such experiences are more common than people realize. I also think there are many contributing factors are at play, not just physicians, especially in public systems. There really are a good number of unfortunate experiences though, I’ve had more than my fair share (Canada).
thank you for saying this!
Sure I am sure it is biased. The kind of people who subscribe to or read MS-Selfie are very different to those who don't. However, it does not distract from the size of the problem.
Given the unrandom nature of the respondents I think it would be best to focus on the raw counts, and not the percentages (i.e. your "90%"). Is gaslighting a problem? Yes. Is it a 90%-size problem? We cannot know due to the survey's sampling bias.