How stigma unfolds for patients with Functional Neurological Disorder 2024 McLoughlin, Carson, Stone et al

[Andy]

Highlights

• Patients with Functional Neurological Disorder experience stigma from many sources.
  
  
• Work, family and online interactions contribute to stigma.
  
  
• FND is often perceived as something unknown, fuelling experiences of being “othered”.
  
  
• Self-stigma and anticipated stigma are common and can amplify distress and isolation.
  
  
• Clinician behaviour can both create and alleviate stigma.
  

Abstract

Objective
The aim of this study was to explore experiences of stigma in Functional Neurological Disorder (FND) from the perspective of the patient as it manifests from the onset of symptoms, up to diagnosis and subsequently.

Background
The existing literature clearly shows that stigma exists for many patients with FND, and is associated with poorer quality of life. However, it is less clear how stigma unfolds, and how it can be alleviated.

Methods
We performed a qualitative interview study with patients who were diagnosed with FND, using data based on semi-structured interviews. Participants were recruited purposively via outpatient clinics. We analysed the data using a reflexive thematic analytic approach, through the lens of recognised stigma frameworks.

Results
15 participants were included in the study, aged between 19 and 68 years, with varying presentations of FND. We identified six themes and 16 subthemes relevant to their stigma trajectory. We found that stigma unfolds through four main domains: 1) through their symptom experience; 2) through “othering” by the healthcare system; 3) through everyday interactions; and 4) from within the self. Across these four domains was a central theme of 5) stages of knowledge, which both fuelled and countered stigma. Lastly, 6) validation of the patient experience emerged as a theme that alleviated stigma.

Conclusions
Stigma did not unfold as a linear process, rather it came from multiple interacting sources. Interventions to target stigma could take the form of improved clinician training, communication, especially around point of diagnosis, and public interventions, co-produced with patients with FND.

Open access, https://www.sciencedirect.com/science/article/pii/S0022399924000795

 

[Hutan]

Wow, first harm people by suggesting they have a health condition that can be fixed by thinking and behaving more normally, and then get them to tell you about the harm they have experienced. Then get a paper published about it. It seems the Carson, Stone et al crowd are fascinated by stigma.

It has been described how a collective social rejection of a group influences policy and healthcare planning, perpetuating a damaging cycle that has been described in other functional syndromes [16,17].

Ref 16 is about DGBI - disorders of gut-brain interaction - I assume that's largely IBS; Ref 17 is about fibromyalgia

Excerpts***
“it was like a kick in the back because it wasn't even really a consultation, it was a case of … suddenly oh you've got FND, it's almost like just putting me in a bracket, you've got FND here's the website, go away” -Charles

“I haven't told um the people I work for and I don't know if they would let me continue to work there if they knew…part of me thinks that I would be written off … like they won't trust me to do things…because…its difficult though because there are times when it would be useful for them to know” - Haile

“I never heard of it and it wasn't until I started reading [online] oh my god, oh my god that's when I just lost all respect, all my self-respect…just reading things like you're nuts basically” – Norah

“it had a huge impact on my self-esteem because it made me feel my on my god you are a complete fruit loop, I mean you made this happen…you are making this happen to yourself and it made me, it was actually yeah, I ashamed of myself” -Norah

Importance of explanations
“and then leaving from there I felt a little bit more satisfied that somebody took it more seriously…and understands that there is a problem there, but we don't know what…I think the way to explain things saying it could be this, it could be that… he says right what will we do with you, we take a step at a time” – Ali

“She … kind of propped it up, you know…and didn't make me feel ashamed…I think because she was the first doctor that actually made me feel like that, I then felt a bit better about having it, does that make sense” -

“they do make you feel like it's all in your head, you're dreaming this, you're making this happen” (Norah).

This self-judgement often abated when given the official diagnosis: “it was a relief when I found out what it was because I thought ehm, I thought I was causing it”” (Orla)

Shame led to many not disclosing their diagnosis, linking to anticipated stigma around misperceptions of FND; “I'm not ashamed to tell people that I have ME uhm but if it ever gets to that stage with FND I don't know… there is so many people out there insisting that it's Freud's conversion disorder” (Norah)

One patient was told that diagnosis was her choice; “it was quite strange the whole process you don't have to be diagnosed with this…it's your choice” (Hailey). Another had an opposing experience where diagnosis felt forced; “…got to the point where I ended up crying like…I don't understand, she was demanding me just to confirm I believe that I had FND” (Bridget).

While many were open to psychological components in their formulation, simply attributing FND to mental illness felt invalidating, and an excuse for professional inaction; “ehm it just felt like a dismissive kind of you've got FND eh…saying without saying it's all in your head …it's all because you were abused…it's very easy for people to kind of block you” (Bridget).

Several patients used the online space to interact about FND, and for several their stigma experience really ignited in this domain. Reading inaccurate posts drove self-doubt, which was exacerbated when professionals were discredited; “do you know what was very unhelpful recently… …from a COVID group…eh and basically it was to do with FND research being led by [name removed] basically he is a fraud, they are all frauds uhm… that just set me back just all the way (Norah). It also arose when they encountered individuals whose experience did not fit at all with their own, leading to confusion and fear; “I was like …wait a minute here …but I'm nothing like these guys on this website so what are they talking about” (Charles).

The importance of having an explanation that fit their experience was outlined in all interviews, helping them feel less “othered” and more confident in narrating their difficulties to others; “but just seeing the professional for maybe forty minutes like changes everything, I was like oh wow ok, that was easy once I actually was given the proper care” (Laura). It also helped them with any self-doubt/blame that FND was their fault. All patients were realistic about how a clinician might not have all the answers, expressing a desire for open communication.
***

 

[rvallee]

"The kettle is clearly black"
- The pot

What's amazing is that this only shows how utterly incapable these people are of self-reflection. Then they have the hubris of inventing models where it is the patients who lack self-reflection. Which only emphasizes just how oblivious they are to their immediate environment, their own behavior and the consequences of their own actions.

They don't even clue in that the "self-stigma" is literally their own gaslighting. These ideologues will always insist that they don't gaslight, but they'll actually spend time talking about interventions to address this self-stigma. Absurd level of cluelessness.

 

[rvallee]

Good grief the patients' comments, it's heart-wrenching. They hear all of this and still can't find anything wrong with what they're doing. This is like being roasted (a comedy thing where someone has to sit while people make mean jokes about them) and never realizing that they're talking about you. It's like lacking all self-awareness is a requirement in psychosomatic ideology. They even hear themselves referred to as frauds and think nothing of it.

They're basically hearing people describing anguish from their own gaslighting and the only thing they can think of is to do more of it.

 

[Gradzy]

As someone repeatedly misdiagnosed with FND, and having been hostile to the diagnosis (with good reason), i find the comments from FND patients quoted above very sad and somewhat distressing.

 

[SNT Gatchaman]

“they do make you feel like it's all in your head, you're dreaming this, you're making this happen”

Recent Reddit thread on r/fnd I came across (non-identifying, we only know from the comments she's a 19yo Canadian woman). Posting as a real world example of current practice. Patient referred to neurologist who tells her —

“I can tell you what you are NOT dealing with. You haven’t had a stroke, you don’t have MS, you haven’t had a TIA. I can’t tell you what your problem is”. told him the last neurologist diagnosed me with FND. He said “yes, there are a million different names for it. conversion disorder, functional neurological disorder, mental illness. It’s all in your head and you are dealing with mental illness.”

At that point I was just shook and humiliated on how this man was treating me. His tone of voice was so condescending and mean. I ended up walking out crying. He didn’t even let me tell him what else I was dealing with besides the seizures.

I had a phone call with my nurse practitioner. I told her I was unsatisfied with the appointment and I wanted a second opinion. She told me that the neurologist had already called her and she spent the next 10 minutes backing up the neurologist telling me it’s all in my head and there’s nothing anybody or I can do. She told me she wouldn’t refer me to another neurologist because there is no point.

So where am I left now? My pain and all of my symptoms have not stopped, and are not stopping on their own. I walk with a cane multiple days out of a week because some days my pain and weakness becomes unbearable and a mobility aid is required. I don’t even know if i’m using the correct mobility aid. Some days I can’t get out of bed. I have falls from seizures and drop attacks and get hurt often. I’ve concussed myself twice now and am always filled with bruises.

Good job everyone.

 

[bobbler]

Wow, first harm people by suggesting they have a health condition that can be fixed by thinking and behaving more normally, and then get them to tell you about the harm they have experienced. Then get a paper published about it. It seems the Carson, Stone et al crowd are fascinated by stigma.


Ref 16 is about DGBI - disorders of gut-brain interaction - I assume that's largely IBS; Ref 17 is about fibromyalgia

Excerpts***
“it was like a kick in the back because it wasn't even really a consultation, it was a case of … suddenly oh you've got FND, it's almost like just putting me in a bracket, you've got FND here's the website, go away” -Charles

“I haven't told um the people I work for and I don't know if they would let me continue to work there if they knew…part of me thinks that I would be written off … like they won't trust me to do things…because…its difficult though because there are times when it would be useful for them to know” - Haile

“I never heard of it and it wasn't until I started reading [online] oh my god, oh my god that's when I just lost all respect, all my self-respect…just reading things like you're nuts basically” – Norah

“it had a huge impact on my self-esteem because it made me feel my on my god you are a complete fruit loop, I mean you made this happen…you are making this happen to yourself and it made me, it was actually yeah, I ashamed of myself” -Norah

Importance of explanations
“and then leaving from there I felt a little bit more satisfied that somebody took it more seriously…and understands that there is a problem there, but we don't know what…I think the way to explain things saying it could be this, it could be that… he says right what will we do with you, we take a step at a time” – Ali

“She … kind of propped it up, you know…and didn't make me feel ashamed…I think because she was the first doctor that actually made me feel like that, I then felt a bit better about having it, does that make sense” -

“they do make you feel like it's all in your head, you're dreaming this, you're making this happen” (Norah).

This self-judgement often abated when given the official diagnosis: “it was a relief when I found out what it was because I thought ehm, I thought I was causing it”” (Orla)

Shame led to many not disclosing their diagnosis, linking to anticipated stigma around misperceptions of FND; “I'm not ashamed to tell people that I have ME uhm but if it ever gets to that stage with FND I don't know… there is so many people out there insisting that it's Freud's conversion disorder” (Norah)

One patient was told that diagnosis was her choice; “it was quite strange the whole process you don't have to be diagnosed with this…it's your choice” (Hailey). Another had an opposing experience where diagnosis felt forced; “…got to the point where I ended up crying like…I don't understand, she was demanding me just to confirm I believe that I had FND” (Bridget).

While many were open to psychological components in their formulation, simply attributing FND to mental illness felt invalidating, and an excuse for professional inaction; “ehm it just felt like a dismissive kind of you've got FND eh…saying without saying it's all in your head …it's all because you were abused…it's very easy for people to kind of block you” (Bridget).

Several patients used the online space to interact about FND, and for several their stigma experience really ignited in this domain. Reading inaccurate posts drove self-doubt, which was exacerbated when professionals were discredited; “do you know what was very unhelpful recently… …from a COVID group…eh and basically it was to do with FND research being led by [name removed] basically he is a fraud, they are all frauds uhm… that just set me back just all the way (Norah). It also arose when they encountered individuals whose experience did not fit at all with their own, leading to confusion and fear; “I was like …wait a minute here …but I'm nothing like these guys on this website so what are they talking about” (Charles).

The importance of having an explanation that fit their experience was outlined in all interviews, helping them feel less “othered” and more confident in narrating their difficulties to others; “but just seeing the professional for maybe forty minutes like changes everything, I was like oh wow ok, that was easy once I actually was given the proper care” (Laura). It also helped them with any self-doubt/blame that FND was their fault. All patients were realistic about how a clinician might not have all the answers, expressing a desire for open communication.
***

They are fascinated by it because this is a Trojan horse (like we see when bps claim mental health stigma they really mean ‘against them’ and are trying to pretend it’s the poor patients targeted by then) for them feeling people think their work is nonsense for any reason other than their work being nonsense- so are weasel wirding trying to pretend it’s some sort of victimhood for themselves of people just don’t like us cos …. And pretending it’s stigma affecting the patients ie it’s ’all About them’ whilst trying to pretend they care ‘cos it affects the poor patients (I suspect they aren’t genuinely helping and their techniques are hurting)’ to try and make those calling them out ‘the bad guys’

certain personality types who are very nasty are also hilarious in how thin skinned they are ego wise to factual appropriate calling out of something they did wrong or that is under par. They love calling real victims ‘acting like the victim’ but tend to be the ones who just wake up attention seeking one day thinking they are victims being picked on. It’s common plain to see and fascinating.

but yes because it’s about then trying to heal their cognitive dissonance and rewrite the world about how they are unfairly criticised at the bottom of this of course they are obsessed.

 

[bobbler]

Good grief the patients' comments, it's heart-wrenching. They hear all of this and still can't find anything wrong with what they're doing. This is like being roasted (a comedy thing where someone has to sit while people make mean jokes about them) and never realizing that they're talking about you. It's like lacking all self-awareness is a requirement in psychosomatic ideology. They even hear themselves referred to as frauds and think nothing of it.

They're basically hearing people describing anguish from their own gaslighting and the only thing they can think of is to do more of it.

It really is a weird documentation of excruciating harm isn’t it.

watching people explain what their behaviour has done to them and their attitude and response is to mess with their brain even more until they are eventually worn down by attrition and coercion

do we believe any of them genuinely are less psychologically and psychically harmed (I use this term rather than feel better because they’ve even coerced that to make people eventually zombie into saying ‘oh yeah I think I feel better’ when it’s been long enough in the invalidation they can’t even remember what’s it’s like to feel those basic rights of believing your own thoughts anymore) for being given more gaslighting on top

it’s disturbing reading it and not far off some of the dangerous unregulated psych experiments you hear about happened in the 60s . None of this should be allowed under duty of care and safeguarding some fake term doesn’t give you the right to mess with people minds like this? It’s so bad what they are documenting doing to people and they are writing it down as if it isn’t something like abuse … very weird

 

[rvallee]

This twitter thread will always represent to me how little they care about patients. Even when they're told in very simple terms about the consequences of what they do, they just refuse to accept it. Because it never makes a difference to them. We're not real to them, our lives don't matter, have no bearing on their own. Only the opinion of their peers and their employers, and almost all are fine with this.

"Well if that were true it would be terrible. But it is not."

One thing that's especially ridiculous is that papers like this one pretty much say the same things, but they simply attribute it to... whatever. Other people. General vibes. Not them. Never them. It's never their fault is something bad happens. It's always to their credit if something good does. A system built to fail.

 

[bobbler]

This twitter thread will always represent to me how little they care about patients. Even when they're told in very simple terms about the consequences of what they do, they just refuse to accept it. Because it never makes a difference to them. We're not real to them, our lives don't matter, have no bearing on their own. Only the opinion of their peers and their employers, and almost all are fine with this.

"Well if that were true it would be terrible. But it is not."

One thing that's especially ridiculous is that papers like this one pretty much say the same things, but they simply attribute it to... whatever. Other people. General vibes. Not them. Never them. It's never their fault is something bad happens. It's always to their credit if something good does. A system built to fail.

View attachment 22981

classic Sharpe 'being raconteur'


Like someone living in a film based on some hero who read a paper from 1912 on neuresthenia and thought it was the latest genius scientific development for the 2020s. But you know genuinely believed that 'I've discovered the transformation for all illness: no condition doesn't have a psychological component! this is our new approach to 'disease' in the 21st century'. I'm sure I've seen some hollywood films where there is the time-travel from one century to another type thing, but it's a bit ham still - they rarely get those ones to work brilliantly yet but you never know...

 

[Maat]

I suspect this will/is appearing in the ME/CFS final delivery plan is some format or other looking at the NHS website updates from around the same time last summer on Medically unexplained symptoms.

[The findings of this study suggest that training for clinicians could be improved, so FND is not perceived as “lesser” or “other”. FND should be placed within formal core curricula, at an early stage in training, for all relevant specialties involved in the care of FND, (for example nursing, paramedical training, physiotherapy, speech and language therapy, occupational therapy and medical social work). In addition, the “hidden curriculum” [34] is also worth serious consideration by educators. This more subtle method of learning, which includes processes such as role modelling and informal conversations, is an influential vehicle for perpetuating stereotypes, but can serve to impart helpful attitudes.]

https://www.nhs.uk/conditions/medically-unexplained-symptoms/

Updated 5 June 2024
Next review 5 June 2027

Edited to tidy up quote and add update and next review dates on NHS page

 

[Maat]

Added to this little gem from the BMJ in September 1991 (same year as Oxford criteria jrsocmed00127-0072.pdf February 1991.)

Medically unexplained physical symptoms. | The BM

explains the links in the NHS page above all the way to personality disorders and thence to derivation of liberty orders and sectioning for some.