Medical gaslighting describes a behaviour in which a HCP dismisses or downplays a patient's physical symptoms or attributes them to something else, such as a psychological condition.
Such a coincidence to have received this today as I was lying in bed last night thinking about this very thing and how it's happened to me on more than one occasion. It was mostly prior to diagnosis but also after. The conclusion of my first GP appointment when half of my body had gone numb was to download a mindfulness app. And since diagnosis I have been questioned by a professional as to whether I'd imagined some symptoms after reading more about MS following diagnosis. Really interesting to see these survey results - thank you!
This is also the first time I've ever posted anywhere about this illness.
Hi Lou! So glad you posted here! I just had to comment because I can't believe you were told to download a mindfulness app. I am sure you would have loved to tell your GP what they could do with that suggestion. I know I would have some choice thoughts. lol
Thank you! It took a couple of appointments before it was considered it could be something neurological. I understand GPs are humans and can't get everything right, but it was a difficult time and it felt like my symptoms were purely being put down to anxiety. I kept at it and got some answers in the end.
The harm goes further than delayed diagnosis for one condition (eg MS) as after a while you start to lose all confidence in your own judgement on anything - your body and senses tell you one thing, but you've been told that they lie to you, so how do you know what is real and what isn't? It does lasting psychological harm. Every medical appointment you go in with anxiety that you won't be believed, that if you show any emotion your symptoms will be dismissed and that you'll be patronised. Then you are told you are anxious or antagonistic and again your physical symptoms are dismissed. If a practitioner truly believes that someone does not have the symptoms they report, then refer for psychiatric evaluation. Otherwise, believe the patient.
I totally agree, and to add I think that the black and white take on things adopted by some (not all) HCPs, whilst ignoring the elephant in the room i.e. progression/ deterioration doesn’t help the PwMS who outside of the brief medical apt has to deal with insurance companies, with income protection policies with benefit systems etc that will take this written word as gospel
Pip, family and friends can absolutely be added to that list. I’ve heard variations of “surely it can’t be that bad” or “sorry for your troubles”. Troubles? Look the disease up! 🌷
My favourite from family and/or friends is "you look great" while your body is throbbing with pain and you can't follow the conversation because too many people are talking at once and all you want to do is sit or lie down in a room without all of the noise of people around you! Good gracious, I am the Queen of sentences that never seem to end!
That is truly one of the best ways to put it. What they also don’t know is how much of the energy pie it took to get ready, dressed etc. I’m done in and wobbly before I get there. There’s no way they can understand the losses either. I loved dancing, music gatherings. There are certain family members that think “I’m sure she’s got more energy!” while I’m, as you say, waiting until I can leave. I have one adult child of 3 that gets it. It’s depressing!
Forgot to add that there are peoples’ voices with a certain timbre along with certain screaming kids (think Charlie and the Chocolate Factory - “I want it NOW!!) that make me want to just run away. But since that’s not an option (ha!) I wrap it up! Well, there’s my bitching and moaning for the week! ;)🌷
I’ve been thinking about this a lot recently. ‘Your MS is in remission’ were the words written in my last letter from my consultant who I haven’t seen in years (I have been reviewed by other HCP’s).
I thought those were magic words that I’d love to read and hear, and whilst I am glad I am stable on scan, this phrase jarred, it just doesn’t sit alongside my lived experience, is this it? Is this remission? Tripping more, stumbling more , forgetting more, needing more meds for nerve pain…whose needs do those words meet? Not mine.
Your experience is a familiar one that is played out across the world thousands of times per day. Have you read 'getting worse'? It is one of the most read MS-Selfie Newsletters and is need of updating.
Smck, this certainly is familiar. I thought “you have plateaued” was good news. It became a smouldering nightmare. Fortunately, I have a good neurologist now. But there are other specialists (ahem, urology) that while not exactly gaslighting, are irritatingly condescending while you, person w/MS, have been living through this awful reality for what seems forever. I tried new uro’s suggestion to stop intermittent cathing. Now I’m down with the fourth UTI. Eye roll. I understand and wish you well.🌷
This is great! As someone who has ‘suffered’ from medical gaslighting a lot over the years leading up to diagnosis and beyond, I’m so pleased it’s going to be presented at ECTRIMS. Good luck!
How do you think the ECTRIMS attendees will respond to the poster? Chances are very few people will read it as we have only been given an ePoster slot.
You would be better at predicting the responses of your colleagues than we are. How DO doctors (being human, plus being humans also accustomed to seeing themselves as the smartest guys in the room) generally respond to being criticized by patients? I would predict those who read it will dismiss it, or buck up and get defensive, while trotting forth supposedly rational reasons that dismissing patients' concerns as inconsequential was the best response.
Absolutely delighted that this data has not only been collected but will now be shared at this international conference. It is empowering to have our community voice represented, to be taken seriously and noticed.
Greatly said! We (pwMS) know all of this, and many of us have experienced it. But the real question is, will your thoughts reach HCPs... Best regards Prof G
Oct 9, 2023·edited Oct 9, 2023Liked by Gavin Giovannoni
The amount of times over more than a decade I was told I suffer from anxiety and stress and offered anxiety medicine pre dx for my numbing, tingling limbs is infuriating and insulting! And while my current neuro is pleasant, he and his team are over worked and only have time to gaslight and not take complaints seriously. It's just easier that way. And boy does my current doc hate it when I come in well researched and talk about anything MS related. He does NOT appreciate me knowing anything or questioning anything he says. I can't wait until my next appointment when I drop all my "But Dr. Gavin Giovannoni says" mwhahahahahahaha!
ME, I have been astonished that the GPs don’t realize how “little” things (to them) can quickly become acute for pwMS. Once there is an infection, we can be in deep water. My neurologist gets it, but your garden variety GP and other specialists seem clueless. I’ve had to beg to get infections addressed. I’ve got a deal - do some griping and groaning for me and I shall repay you five times over! ;>) 🌷
Well said. GP and covid doctors let my pneumonia go wild, and that fu*ked my MS very much. I will never forgive myself for placing trust in doctors from covid clinic, instead of going to private practice pulmologist.
In fact when I think about it, this was classical gaslighting, I was telling my GP for 2 weeks that I was feeling terrible (I was in fact having pneumonia), and GP would tell me that this is normal since I have MS haha.
It’s awful when time is of the essence and you know your body! There was a time a while back when a CT scan was necessary to prove a sinus infection! I think most of us know when we have those, especially when they’re chronic. And as you say, your MS goes wild.
Thank you so much for highlighting this. When I was first diagnosed I was in denial and my neurologist certainly didn't help. It went on for years and I used to come out of his clinic in tears feeling totally dismissed. Thankfully I have now got a brilliant, female, neurologist who listens , i feel taken seriously and I am doing much better mentally.
this is why avoid male doctors if possible. Just my personal experience, but 'on average', female doctors tend to be less 'efficient' and do not downplay symptoms so much.
Feel a bit sorry for the neuros, particularly the generalist neuros, to be accused of ‘gaslighting’ (annoying term which is used ad nauseam (another annoying term) by all sorts of professions). The reality is, that they see their patients deteriorating, despite being on anti-relapse drugs / having a no-change MRI, but are powerless. There are no drugs available to them to slow / stop smouldering MS. So they smile at the patient and tell them all looks fine. What else can they do? Tell them the anti-relapse drugs aren’t really impacting the real disease and that the patient will get more and more disabled!
1500 abstracts are being presented at the ECTRIMS 2023 meeting. 95%+ of these abstracts will have no benefit to an MS patient. They keep MS research teams busy / keep the publication count up. Until the issue of “getting worse” is addressed (new therapies to address the real disease), so called gaslighting will continue. I suspect the ECTRIMS 2023 meeting will be another damp squib. The only positive is a bit more focus on EBV (but no signs of any positive news on trials of anti-virals).
I think you are wrong. The 'Ostrich Syndrome' or head-in-the-sand never provides a satisfactory answer for anyone and leaves the HCP frustrated. Acknowledging the problem is important to finding a solution. Instead of ignoring or fobbing patients off, HCPs should acknowledge their problems, and document them. There are many things that can be done to tackle smouldering MS outside of pharmaceuticals. Please see:
Sending you prayers, I was diagnosed in 2010 and seemed to go down hill quickly. In six years I could no longer work and had real problems with balance and joint pain. Brain fog was really bad sometimes. I took rebif and had a lot of problems and had to quit. I have been on techfadera (not spelled right) for a few years and have several side effects. I felt lost and decided to quit my meds due to side effects. Our care provider introduced me to Ayurvedic treatment. I had a total decline of all symptoms including vision problems, numbness and others. Sometimes, i totally forget i ever had MS. Visit Natural Herbs Centre web-site naturalherbscentre. com. I am very pleased with this treatment. I eat well, sleep well and exercise regularly. God bless all MS Warriors
As this is studied further, I think it would be good to see more demographic breakdowns. I imagine this problem is worse for people of color, people with low income, and people who don't natively speak the language of the country they live in.
But of course. And if you're a female of any of the groupings you mention, you're double-screwed. And really, no studies, no breakdowns are needed at this point. What good are those in this situation? To tell us what we really already know?
If this does get formally studied, how long do you think it will take before said study(s) get downplayed or ignored? Paying attention to the findings would be too too uncomfortable and would require the medical training to quit reinforcing outdated cultural attitudes about whole groups of people, and we can't have that. The frustrating bit is that medical gaslighting, for all its supposed blasting onto the scene out of the blue and catching the medical community off guard, (remember the #metoo hashtag and how so many people were SO shocked at the extent of the problem? Please) is to most women - who exist in every one of those underserved groups you mention - ancient news: we've known about this for ages. The biggie is we finally started TALKING about it. In public! Oops.
It's not unreasonable to make the assumption that if the problem is cultural (and it is), then every social evil involving bias against those groups, is going to be at least as bad in medicine too. Even assuming that a portion of the depressing number of anecdotal reports of gaslighting may be overstated (but it is a slippery slope to assume this as one is prey once again to the allure of simply dismissing the criticisms as "complaining") gaslighting is clearly enough of a "thing" that the real issue now is getting it away from the ivory tower of "Hmmm. How interesting. We MAY have a bit of a problem" and into the real world where working on the problem (medical training that reinforces biases) can have an actual downstream effect. But that is admittedly a much heavier lift than another academic study that will be ignored.
And really, articles about this issue abound right now. The slightest search will return buckets of them. Pretty much all saying the same depressing thing. Here's one that might be of interest, since most men have either not experienced this or the women in their lives haven't bothered to mention it to them.
As I read the responses here, I keep remembering a bit from a book by Henry Marsh, a retired British neuro surgeon, who is describing the dehumanizing (his word) experience of becoming a patient after decades of being a doctor. According to him, because of complicated reasons, doctors operate on the assumption that THEY don't get sick and that patients are far removed from them and a vastly different breed than they are. Finding out that he was wrong, and being treated as a mere patient, he admits was...quite difficult. At one point he is ruminating on the experience of waiting rooms from his new perspective as a cancer patient. He notes that most of them have some sort of plaque that assures the reader that patients HERE are treated with respect and dignity, blah blah blah. He observes that if they actually treated patients that way they probably wouldn't need to blare it from the walls all the time.
The assertion of "WE do dignity and respect" contains its opposite and is therefore the tacit acknowledgement that SOMEwhere "dignity and respect" are missing. Clearly, someone has a more than a clue that there is a problem or they would not be constantly proclaiming "Hey man, not US!"
Such a coincidence to have received this today as I was lying in bed last night thinking about this very thing and how it's happened to me on more than one occasion. It was mostly prior to diagnosis but also after. The conclusion of my first GP appointment when half of my body had gone numb was to download a mindfulness app. And since diagnosis I have been questioned by a professional as to whether I'd imagined some symptoms after reading more about MS following diagnosis. Really interesting to see these survey results - thank you!
This is also the first time I've ever posted anywhere about this illness.
Hi Lou! So glad you posted here! I just had to comment because I can't believe you were told to download a mindfulness app. I am sure you would have loved to tell your GP what they could do with that suggestion. I know I would have some choice thoughts. lol
Thank you! It took a couple of appointments before it was considered it could be something neurological. I understand GPs are humans and can't get everything right, but it was a difficult time and it felt like my symptoms were purely being put down to anxiety. I kept at it and got some answers in the end.
Lou, I had a mindfulness app suggested when I was getting no sleep whatsoever. So I believe it!🌷
The harm goes further than delayed diagnosis for one condition (eg MS) as after a while you start to lose all confidence in your own judgement on anything - your body and senses tell you one thing, but you've been told that they lie to you, so how do you know what is real and what isn't? It does lasting psychological harm. Every medical appointment you go in with anxiety that you won't be believed, that if you show any emotion your symptoms will be dismissed and that you'll be patronised. Then you are told you are anxious or antagonistic and again your physical symptoms are dismissed. If a practitioner truly believes that someone does not have the symptoms they report, then refer for psychiatric evaluation. Otherwise, believe the patient.
I totally agree, and to add I think that the black and white take on things adopted by some (not all) HCPs, whilst ignoring the elephant in the room i.e. progression/ deterioration doesn’t help the PwMS who outside of the brief medical apt has to deal with insurance companies, with income protection policies with benefit systems etc that will take this written word as gospel
Very good point, I totally agree. And family and friends can sometimes be added to that list which means support and understanding is hard to come by.
Pip, family and friends can absolutely be added to that list. I’ve heard variations of “surely it can’t be that bad” or “sorry for your troubles”. Troubles? Look the disease up! 🌷
My favourite from family and/or friends is "you look great" while your body is throbbing with pain and you can't follow the conversation because too many people are talking at once and all you want to do is sit or lie down in a room without all of the noise of people around you! Good gracious, I am the Queen of sentences that never seem to end!
That is truly one of the best ways to put it. What they also don’t know is how much of the energy pie it took to get ready, dressed etc. I’m done in and wobbly before I get there. There’s no way they can understand the losses either. I loved dancing, music gatherings. There are certain family members that think “I’m sure she’s got more energy!” while I’m, as you say, waiting until I can leave. I have one adult child of 3 that gets it. It’s depressing!
Forgot to add that there are peoples’ voices with a certain timbre along with certain screaming kids (think Charlie and the Chocolate Factory - “I want it NOW!!) that make me want to just run away. But since that’s not an option (ha!) I wrap it up! Well, there’s my bitching and moaning for the week! ;)🌷
I’ve been thinking about this a lot recently. ‘Your MS is in remission’ were the words written in my last letter from my consultant who I haven’t seen in years (I have been reviewed by other HCP’s).
I thought those were magic words that I’d love to read and hear, and whilst I am glad I am stable on scan, this phrase jarred, it just doesn’t sit alongside my lived experience, is this it? Is this remission? Tripping more, stumbling more , forgetting more, needing more meds for nerve pain…whose needs do those words meet? Not mine.
Your experience is a familiar one that is played out across the world thousands of times per day. Have you read 'getting worse'? It is one of the most read MS-Selfie Newsletters and is need of updating.
https://gavingiovannoni.substack.com/p/getting-worse
I’ve read it! And shared it… but have they
Pro G, that’s a great one.🌷
Smck, this certainly is familiar. I thought “you have plateaued” was good news. It became a smouldering nightmare. Fortunately, I have a good neurologist now. But there are other specialists (ahem, urology) that while not exactly gaslighting, are irritatingly condescending while you, person w/MS, have been living through this awful reality for what seems forever. I tried new uro’s suggestion to stop intermittent cathing. Now I’m down with the fourth UTI. Eye roll. I understand and wish you well.🌷
This is great! As someone who has ‘suffered’ from medical gaslighting a lot over the years leading up to diagnosis and beyond, I’m so pleased it’s going to be presented at ECTRIMS. Good luck!
How do you think the ECTRIMS attendees will respond to the poster? Chances are very few people will read it as we have only been given an ePoster slot.
You would be better at predicting the responses of your colleagues than we are. How DO doctors (being human, plus being humans also accustomed to seeing themselves as the smartest guys in the room) generally respond to being criticized by patients? I would predict those who read it will dismiss it, or buck up and get defensive, while trotting forth supposedly rational reasons that dismissing patients' concerns as inconsequential was the best response.
Absolutely delighted that this data has not only been collected but will now be shared at this international conference. It is empowering to have our community voice represented, to be taken seriously and noticed.
Greatly said! We (pwMS) know all of this, and many of us have experienced it. But the real question is, will your thoughts reach HCPs... Best regards Prof G
Hi Belma, Required reading perhaps?
The amount of times over more than a decade I was told I suffer from anxiety and stress and offered anxiety medicine pre dx for my numbing, tingling limbs is infuriating and insulting! And while my current neuro is pleasant, he and his team are over worked and only have time to gaslight and not take complaints seriously. It's just easier that way. And boy does my current doc hate it when I come in well researched and talk about anything MS related. He does NOT appreciate me knowing anything or questioning anything he says. I can't wait until my next appointment when I drop all my "But Dr. Gavin Giovannoni says" mwhahahahahahaha!
ME, I have been astonished that the GPs don’t realize how “little” things (to them) can quickly become acute for pwMS. Once there is an infection, we can be in deep water. My neurologist gets it, but your garden variety GP and other specialists seem clueless. I’ve had to beg to get infections addressed. I’ve got a deal - do some griping and groaning for me and I shall repay you five times over! ;>) 🌷
Well said. GP and covid doctors let my pneumonia go wild, and that fu*ked my MS very much. I will never forgive myself for placing trust in doctors from covid clinic, instead of going to private practice pulmologist.
In fact when I think about it, this was classical gaslighting, I was telling my GP for 2 weeks that I was feeling terrible (I was in fact having pneumonia), and GP would tell me that this is normal since I have MS haha.
It’s awful when time is of the essence and you know your body! There was a time a while back when a CT scan was necessary to prove a sinus infection! I think most of us know when we have those, especially when they’re chronic. And as you say, your MS goes wild.
Thank you so much for highlighting this. When I was first diagnosed I was in denial and my neurologist certainly didn't help. It went on for years and I used to come out of his clinic in tears feeling totally dismissed. Thankfully I have now got a brilliant, female, neurologist who listens , i feel taken seriously and I am doing much better mentally.
this is why avoid male doctors if possible. Just my personal experience, but 'on average', female doctors tend to be less 'efficient' and do not downplay symptoms so much.
I mean: "why I avoid male doctors". It's not meant as a general recommendation;)
Feel a bit sorry for the neuros, particularly the generalist neuros, to be accused of ‘gaslighting’ (annoying term which is used ad nauseam (another annoying term) by all sorts of professions). The reality is, that they see their patients deteriorating, despite being on anti-relapse drugs / having a no-change MRI, but are powerless. There are no drugs available to them to slow / stop smouldering MS. So they smile at the patient and tell them all looks fine. What else can they do? Tell them the anti-relapse drugs aren’t really impacting the real disease and that the patient will get more and more disabled!
1500 abstracts are being presented at the ECTRIMS 2023 meeting. 95%+ of these abstracts will have no benefit to an MS patient. They keep MS research teams busy / keep the publication count up. Until the issue of “getting worse” is addressed (new therapies to address the real disease), so called gaslighting will continue. I suspect the ECTRIMS 2023 meeting will be another damp squib. The only positive is a bit more focus on EBV (but no signs of any positive news on trials of anti-virals).
I think you are wrong. The 'Ostrich Syndrome' or head-in-the-sand never provides a satisfactory answer for anyone and leaves the HCP frustrated. Acknowledging the problem is important to finding a solution. Instead of ignoring or fobbing patients off, HCPs should acknowledge their problems, and document them. There are many things that can be done to tackle smouldering MS outside of pharmaceuticals. Please see:
https://gavingiovannoni.substack.com/p/brain-health-how-important-is-it#details
Sending you prayers, I was diagnosed in 2010 and seemed to go down hill quickly. In six years I could no longer work and had real problems with balance and joint pain. Brain fog was really bad sometimes. I took rebif and had a lot of problems and had to quit. I have been on techfadera (not spelled right) for a few years and have several side effects. I felt lost and decided to quit my meds due to side effects. Our care provider introduced me to Ayurvedic treatment. I had a total decline of all symptoms including vision problems, numbness and others. Sometimes, i totally forget i ever had MS. Visit Natural Herbs Centre web-site naturalherbscentre. com. I am very pleased with this treatment. I eat well, sleep well and exercise regularly. God bless all MS Warriors
As this is studied further, I think it would be good to see more demographic breakdowns. I imagine this problem is worse for people of color, people with low income, and people who don't natively speak the language of the country they live in.
But of course. And if you're a female of any of the groupings you mention, you're double-screwed. And really, no studies, no breakdowns are needed at this point. What good are those in this situation? To tell us what we really already know?
If this does get formally studied, how long do you think it will take before said study(s) get downplayed or ignored? Paying attention to the findings would be too too uncomfortable and would require the medical training to quit reinforcing outdated cultural attitudes about whole groups of people, and we can't have that. The frustrating bit is that medical gaslighting, for all its supposed blasting onto the scene out of the blue and catching the medical community off guard, (remember the #metoo hashtag and how so many people were SO shocked at the extent of the problem? Please) is to most women - who exist in every one of those underserved groups you mention - ancient news: we've known about this for ages. The biggie is we finally started TALKING about it. In public! Oops.
It's not unreasonable to make the assumption that if the problem is cultural (and it is), then every social evil involving bias against those groups, is going to be at least as bad in medicine too. Even assuming that a portion of the depressing number of anecdotal reports of gaslighting may be overstated (but it is a slippery slope to assume this as one is prey once again to the allure of simply dismissing the criticisms as "complaining") gaslighting is clearly enough of a "thing" that the real issue now is getting it away from the ivory tower of "Hmmm. How interesting. We MAY have a bit of a problem" and into the real world where working on the problem (medical training that reinforces biases) can have an actual downstream effect. But that is admittedly a much heavier lift than another academic study that will be ignored.
And really, articles about this issue abound right now. The slightest search will return buckets of them. Pretty much all saying the same depressing thing. Here's one that might be of interest, since most men have either not experienced this or the women in their lives haven't bothered to mention it to them.
https://www.cnn.com/2023/09/06/opinions/medical-gaslighting-social-media-women-health-oleary/index.html
As I read the responses here, I keep remembering a bit from a book by Henry Marsh, a retired British neuro surgeon, who is describing the dehumanizing (his word) experience of becoming a patient after decades of being a doctor. According to him, because of complicated reasons, doctors operate on the assumption that THEY don't get sick and that patients are far removed from them and a vastly different breed than they are. Finding out that he was wrong, and being treated as a mere patient, he admits was...quite difficult. At one point he is ruminating on the experience of waiting rooms from his new perspective as a cancer patient. He notes that most of them have some sort of plaque that assures the reader that patients HERE are treated with respect and dignity, blah blah blah. He observes that if they actually treated patients that way they probably wouldn't need to blare it from the walls all the time.
The assertion of "WE do dignity and respect" contains its opposite and is therefore the tacit acknowledgement that SOMEwhere "dignity and respect" are missing. Clearly, someone has a more than a clue that there is a problem or they would not be constantly proclaiming "Hey man, not US!"