Every single ms specialist, rhespirtory specialist, nurse or gp i have seen have gaslit me when it comes to my more odd ms symptoms. Yet when you look them up or ask on social media they are actually very common with others suffering the same gas lighting. I was told muscle fasciculations and twitching cant be ms.... turns out it is i was told my breathing pattern disorder is only common in people with very advanced ms...turns out over 1000 people on a single comment thread on an ms charity page also suffer it in some form or another. What dissapointed most is the lack of help for symptoms as soon as its dismissed as not your ms! You end up going round in circles with refferals for the next gp or specialist to say you need to see someone else which takes months and no one wants to help you figure it out. Im very very lucky with ms specialist ms nurse who goes above and beyond and communicates great but the pressure and patient load is sometimes too much for him to remember every detail of a catch up regarding progression. I think there needs to be some sort of door stop where the person you speak to initially takes responsibility and you go back to them directly if the person they refer to cant help.
I have no patience for being fobbed off, I feel let down and irritated by it, so I stay away. It's far from ideal but the stress of it makes me feel worse and I gain nothing for it. Interestingly I have been on the cancer pathway since December, have completed treatment and have reached the monitoring stage without any gaslighting. Why can't neurologists do that?
Thank you for discussing this, it’s so important. I have a rare heart and bp impact due to MS. It seems on the forums that other individuals have this as well, although rare. It is always dismissed by my old neurologist. The current neurologist admits they don’t have an answer but they will keep working with me to handle anything else that might make this worse because there is no other treatment right now. I appreciate this so much.
My wife is suffering from disinhibition and is now gaslit against and no one will believe that it’s my wife that needs the help can anyone please help or going through this also
I am playing catch-up on your newsletter.. I just got to this one about Medical Gaslighting. I spent some 3 decades going thru this exact thing. I was finally Dx'd at age 58 because a GP decided to listen to my complaints, order an MRI and the rest is history. I can't help but wonder how much LESS disabled I would be today, if even one of the doctors over the 3 decades had taken a moment to think deeper and even run a test. The gaslighting went so far as to have a CT scan done in 2013 that showed over 50 lesions in my brain and they still refused to send me to get an MRI or do any further testing. After that I waited another 2 years to finally receive Medicare and get that MRI after switching GP's and she was mortified that numerous brain lesions had not been followed up on. I had seen so many doctors that told me everything from, its relapsing fibromyalgia, to being patted on the head and being told it was all gonna be ok.. I have been told I am imagining things, I making up how bad things are, that I can't possibly be that sick. I wanted to scream. TY for continuing to publish this newsletter. I would have loved to have taken the survey but I missed it apparently because it will not open the page it was on...
I have been gaslighted for years now. My neurologist said it wasn't my MS, other specialities only saw MS. After begging for help for years, telling people the same area of concern over and over again, I finally was taken seriously in June. Today I have been told I have a serious, aggressive, late diagnosed cancer, that looks as if it has local spread and possibly lymph node spread. So many months of gruelling treatment to follow with no certainty. of a positive outcome If you have MS you are gaslighted by all department, written off because it just MS and get on with it. Gaslighting is a problem throughout the medical profession, where many medical personnel, think they know better than the patient, and are deskilled by computers, tests and scans, rather than what does the patient look like, and what are their symptoms telling me. This is a problem that needs addressed at the grass roots level, during training, and those in post currently need to training (CPD) to shift their mind set and open their mind to the patient might actually know what they are talking about. The bottom line is LISTEN to your patient, they know when something is wrong.
Julie I think this may be to do with the intensive communication skills training Oncology Drs & Nuses get ( in my experience ) they also see their patients & relatives more frequently & wouldn’t get away with fobbing them off ! . To be fair to Neurology most other specialties have staff that don’t listen. In the past few months I’ve encountered 2 Consultants in different specialties who were dreadful. One made me laugh out loud she talked such drivel & the other was lucky that I didn’t reach across the table & grab him by his tie. Gaslighting doesn’t begin to describe it! I think using that word is unhelpful for such a serious and widespread failing in healthcare.
Could I please ask for your opinion (or anyone else who has any knowledge on this) I have many symptoms with this dreadful illness but feel I could accept the pain bladder and bowel symptoms if only I were able to get out more. My mobility is greatly affected by weakness and drop foot on my left side Have spoken to my nurse and Neurologist only to basically be told it's to be expected. I have tried numerous AFO and splints none of which make much difference However I have seen videos of the Bioness l.g 300 just wondering if yourself or anyone else has any information
Yes, I have experienced gaslighting, I am a 59 year old female. I have had RRMS for around 16 years. I asked about the discrepancy in my EDSS scale, my neurologist has me down as a two, my MS nurse says I'm a one. I asked if I could be tested (I have done the MS Olympics when I was on a clinical trial) and was told that they didn't do them, so my MS is only monitored through my MRI scans. Not happy. I know I am slowly getting worse, certainly my mobility is changing. I also suffered a pseudo relapse having had Covid, when I contacted my MS nurse, explained about the excruciating pain in my neck, back and face (Trigeminal neuralgia), I was told to get a massage. There was an issue getting my Gilenya tablets delivered, it all revolved around a prescription not being issued by the hospital, when I spoke to the lead MS nurse at the hospital, I was told it was all my fault.
Gaslighting by its definition is centred around blame culture but is it always the HCP’s fault or could it be a “not enough hours in the day” scenario?
I remember reading a previous selfie news letter which talked about self assessments as they do with rheumatoid (if I’ve remembered rightly) an HCP has no idea what’s about to come out of the patient’s mouth and is also assumed to know everything, but if they had a heads up, do you think this could result in a few less dismissive responses?
I believe there’s a simple solution somewhere which may reveal the real culprit.
Aug 22, 2022·edited Aug 22, 2022Liked by Gavin Giovannoni
Hi Gavin
It doesn't have to be black & white, all or nothing. Gaslighting implies denial or rejection of an idea (or diagnosis, symptom) but in reality, it can be shades of fobbing off. From "I'll think about it" to "I'll get back to you". And to use one of your phrases, "watchful waiting", though I still prefer to call it wait-&-see. Either way, it avoids making a decision.
This isn't a medical profession thing - it's human nature! We all hate making important decisions. I come from the commercial world and trained in selling techniques including handling objections. All designed to provoke a decision - ideally a positive outcome but also to flush out real reasons not to proceed yet could be addressed and, most likely, reasons to just avoid making a decision. The thing is, most people don't get training in how to make decisions, so left unchecked, those people can become non-decision-makers.
In the case of NHS MS Consultants, non-decision-making doesn't help the patients or their department but MS is inexact, there's a lot of trial & error about treatment plans and an ineffective individual can go undetected. Decision making is a skill which can be trained, much like time management.
7 GP appointments in one year (Jan -Dec) with MS symptoms (extreme fatigue, Bell’s palsy, drop foot, speech intermittent, forgetfulness) and he diagnosed me with depression twice. The last interaction being “no further tests can be done, I’ve left a script for antidepressants on the front counter for you”. I never took him up on it as I was adamant I didn’t have depression.
Neck shocks which I now know, were lhermitte's sign led me to a chiropractor who asked for an MRI after I had trouble walking home after his treatment. Four months later I’m in front of a neurologist arranging for me to go to the hospital for intravenous steroids. Time from first GP app to neurologist was 16 months, without the chiropractors request, who know how long it would have taken.
I can’t help but wonder what additional damage was caused by the GP delaying my access to a specialist. I relapsed twice after that hospital visit and they referred to as being very active MS with a high lesion load. I sadly, I’ve never fully bounced back.
Can you do an article on MOG? I’ve spent the last almost 3 years being dismissed due to being treated as MS when it’s probably MOG. All because I was gaslight and told my MS modulator wasn’t making my symptoms worse but it was “in my head” or “my perception”
I wanted to complete thee survey, but its closed. I have had similar experiences as Dan. There has been MS nurses in the past that have helped, but they are not always the same.
I understand they are also learning and gaining experience. It occurred to me that when the pandemic first started there was a lot more collaborative work and "crowdsourcing" of data etc to find a vaccine. Could the same platform not be able to used for MS too?
I know companies need to make a profit, but patients have skin in the game and have a vested interest in working to achieve better outcomes for themselves and by extension others too.
Every single ms specialist, rhespirtory specialist, nurse or gp i have seen have gaslit me when it comes to my more odd ms symptoms. Yet when you look them up or ask on social media they are actually very common with others suffering the same gas lighting. I was told muscle fasciculations and twitching cant be ms.... turns out it is i was told my breathing pattern disorder is only common in people with very advanced ms...turns out over 1000 people on a single comment thread on an ms charity page also suffer it in some form or another. What dissapointed most is the lack of help for symptoms as soon as its dismissed as not your ms! You end up going round in circles with refferals for the next gp or specialist to say you need to see someone else which takes months and no one wants to help you figure it out. Im very very lucky with ms specialist ms nurse who goes above and beyond and communicates great but the pressure and patient load is sometimes too much for him to remember every detail of a catch up regarding progression. I think there needs to be some sort of door stop where the person you speak to initially takes responsibility and you go back to them directly if the person they refer to cant help.
I have no patience for being fobbed off, I feel let down and irritated by it, so I stay away. It's far from ideal but the stress of it makes me feel worse and I gain nothing for it. Interestingly I have been on the cancer pathway since December, have completed treatment and have reached the monitoring stage without any gaslighting. Why can't neurologists do that?
Thank you for discussing this, it’s so important. I have a rare heart and bp impact due to MS. It seems on the forums that other individuals have this as well, although rare. It is always dismissed by my old neurologist. The current neurologist admits they don’t have an answer but they will keep working with me to handle anything else that might make this worse because there is no other treatment right now. I appreciate this so much.
My wife is suffering from disinhibition and is now gaslit against and no one will believe that it’s my wife that needs the help can anyone please help or going through this also
I am playing catch-up on your newsletter.. I just got to this one about Medical Gaslighting. I spent some 3 decades going thru this exact thing. I was finally Dx'd at age 58 because a GP decided to listen to my complaints, order an MRI and the rest is history. I can't help but wonder how much LESS disabled I would be today, if even one of the doctors over the 3 decades had taken a moment to think deeper and even run a test. The gaslighting went so far as to have a CT scan done in 2013 that showed over 50 lesions in my brain and they still refused to send me to get an MRI or do any further testing. After that I waited another 2 years to finally receive Medicare and get that MRI after switching GP's and she was mortified that numerous brain lesions had not been followed up on. I had seen so many doctors that told me everything from, its relapsing fibromyalgia, to being patted on the head and being told it was all gonna be ok.. I have been told I am imagining things, I making up how bad things are, that I can't possibly be that sick. I wanted to scream. TY for continuing to publish this newsletter. I would have loved to have taken the survey but I missed it apparently because it will not open the page it was on...
I have been gaslighted for years now. My neurologist said it wasn't my MS, other specialities only saw MS. After begging for help for years, telling people the same area of concern over and over again, I finally was taken seriously in June. Today I have been told I have a serious, aggressive, late diagnosed cancer, that looks as if it has local spread and possibly lymph node spread. So many months of gruelling treatment to follow with no certainty. of a positive outcome If you have MS you are gaslighted by all department, written off because it just MS and get on with it. Gaslighting is a problem throughout the medical profession, where many medical personnel, think they know better than the patient, and are deskilled by computers, tests and scans, rather than what does the patient look like, and what are their symptoms telling me. This is a problem that needs addressed at the grass roots level, during training, and those in post currently need to training (CPD) to shift their mind set and open their mind to the patient might actually know what they are talking about. The bottom line is LISTEN to your patient, they know when something is wrong.
Julie I think this may be to do with the intensive communication skills training Oncology Drs & Nuses get ( in my experience ) they also see their patients & relatives more frequently & wouldn’t get away with fobbing them off ! . To be fair to Neurology most other specialties have staff that don’t listen. In the past few months I’ve encountered 2 Consultants in different specialties who were dreadful. One made me laugh out loud she talked such drivel & the other was lucky that I didn’t reach across the table & grab him by his tie. Gaslighting doesn’t begin to describe it! I think using that word is unhelpful for such a serious and widespread failing in healthcare.
Could I please ask for your opinion (or anyone else who has any knowledge on this) I have many symptoms with this dreadful illness but feel I could accept the pain bladder and bowel symptoms if only I were able to get out more. My mobility is greatly affected by weakness and drop foot on my left side Have spoken to my nurse and Neurologist only to basically be told it's to be expected. I have tried numerous AFO and splints none of which make much difference However I have seen videos of the Bioness l.g 300 just wondering if yourself or anyone else has any information
Yes, I have experienced gaslighting, I am a 59 year old female. I have had RRMS for around 16 years. I asked about the discrepancy in my EDSS scale, my neurologist has me down as a two, my MS nurse says I'm a one. I asked if I could be tested (I have done the MS Olympics when I was on a clinical trial) and was told that they didn't do them, so my MS is only monitored through my MRI scans. Not happy. I know I am slowly getting worse, certainly my mobility is changing. I also suffered a pseudo relapse having had Covid, when I contacted my MS nurse, explained about the excruciating pain in my neck, back and face (Trigeminal neuralgia), I was told to get a massage. There was an issue getting my Gilenya tablets delivered, it all revolved around a prescription not being issued by the hospital, when I spoke to the lead MS nurse at the hospital, I was told it was all my fault.
Gaslighting by its definition is centred around blame culture but is it always the HCP’s fault or could it be a “not enough hours in the day” scenario?
I remember reading a previous selfie news letter which talked about self assessments as they do with rheumatoid (if I’ve remembered rightly) an HCP has no idea what’s about to come out of the patient’s mouth and is also assumed to know everything, but if they had a heads up, do you think this could result in a few less dismissive responses?
I believe there’s a simple solution somewhere which may reveal the real culprit.
Hi Gavin
It doesn't have to be black & white, all or nothing. Gaslighting implies denial or rejection of an idea (or diagnosis, symptom) but in reality, it can be shades of fobbing off. From "I'll think about it" to "I'll get back to you". And to use one of your phrases, "watchful waiting", though I still prefer to call it wait-&-see. Either way, it avoids making a decision.
This isn't a medical profession thing - it's human nature! We all hate making important decisions. I come from the commercial world and trained in selling techniques including handling objections. All designed to provoke a decision - ideally a positive outcome but also to flush out real reasons not to proceed yet could be addressed and, most likely, reasons to just avoid making a decision. The thing is, most people don't get training in how to make decisions, so left unchecked, those people can become non-decision-makers.
In the case of NHS MS Consultants, non-decision-making doesn't help the patients or their department but MS is inexact, there's a lot of trial & error about treatment plans and an ineffective individual can go undetected. Decision making is a skill which can be trained, much like time management.
Graeme
Doctors always take me seriously. I wish they'd send me away and tell me I'm wasting NHS time, but they never do. And they are usually right.
7 GP appointments in one year (Jan -Dec) with MS symptoms (extreme fatigue, Bell’s palsy, drop foot, speech intermittent, forgetfulness) and he diagnosed me with depression twice. The last interaction being “no further tests can be done, I’ve left a script for antidepressants on the front counter for you”. I never took him up on it as I was adamant I didn’t have depression.
Neck shocks which I now know, were lhermitte's sign led me to a chiropractor who asked for an MRI after I had trouble walking home after his treatment. Four months later I’m in front of a neurologist arranging for me to go to the hospital for intravenous steroids. Time from first GP app to neurologist was 16 months, without the chiropractors request, who know how long it would have taken.
I can’t help but wonder what additional damage was caused by the GP delaying my access to a specialist. I relapsed twice after that hospital visit and they referred to as being very active MS with a high lesion load. I sadly, I’ve never fully bounced back.
Can you do an article on MOG? I’ve spent the last almost 3 years being dismissed due to being treated as MS when it’s probably MOG. All because I was gaslight and told my MS modulator wasn’t making my symptoms worse but it was “in my head” or “my perception”
I wanted to complete thee survey, but its closed. I have had similar experiences as Dan. There has been MS nurses in the past that have helped, but they are not always the same.
I understand they are also learning and gaining experience. It occurred to me that when the pandemic first started there was a lot more collaborative work and "crowdsourcing" of data etc to find a vaccine. Could the same platform not be able to used for MS too?
I know companies need to make a profit, but patients have skin in the game and have a vested interest in working to achieve better outcomes for themselves and by extension others too.