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

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.
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