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.
This happens ALL THE TIME & it is infuriating. As a traditional author, when working through a draft with critique partners, you learn that "an issue is always an issue." They may not know why something doesn't quite work in the narrative, and their solution to fix it is often wrong, but... if they identify something is off- it is. IMO, the medical establishment needs to learn this lesson. Patients may not always know "why" something isn't right, and it may not even make sense when they explain the symptoms, but if they notice something is wrong, it is. An issue is always an issue, and it's the medical practitioner's job to decipher the clues and apply context based on their expertise without discrediting the experience from those of us living 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’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.
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!
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
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.
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!
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).
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.
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.
This happens ALL THE TIME & it is infuriating. As a traditional author, when working through a draft with critique partners, you learn that "an issue is always an issue." They may not know why something doesn't quite work in the narrative, and their solution to fix it is often wrong, but... if they identify something is off- it is. IMO, the medical establishment needs to learn this lesson. Patients may not always know "why" something isn't right, and it may not even make sense when they explain the symptoms, but if they notice something is wrong, it is. An issue is always an issue, and it's the medical practitioner's job to decipher the clues and apply context based on their expertise without discrediting the experience from those of us living 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’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.
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!
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
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.
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!
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).
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.