AIBU to wonder whether some disability content rewards staying visibly unwell?

I never said it should be looked at entirely through a medical lens. I explicitly said that there can be psychological factors involved. Maybe we mean something different by the word "psychosomatic"?

If you mean "entirely caused by psychological factors", then I would disagree. If you mean that psychological factors can be a contributing factor (or even are often a factor), then I would agree.

There is no evidence to say that FND is caused by psychological factors. That too is an outdated view of FND. Psychological factors can play a role for some people, but that isn't the same as saying they are the cause. That is why now we say "functional seizures" and no longer "psychogenic seizures" or "conversion disorder". Those are outdated terms relating to outdated views.

There can also be physical and sensory triggers. Drop attacks, for example, can be triggered by sensory or physiological input, such as someone putting food in their mouth or holding an ice cube. (I have seen this happening.) Expectation itself can also have physiological effects through changes in neural signalling and activity at a cellular level. The brain's expectations can influence how sensory information is processed and how the body responds to it.

I agree. My Nan was a schizophrenic, a revolving door MH patient, but she did have huge trauma in her life. She also had FND. In her 70s after years of medication, ECT and hospital stays she finally gained access to specialist psychotherapy. Not your average counselling or CBT. Hours of specialised therapy each week. She made huge gains with her mental health and she spent the last 10 years of her life in relative mental peace. At one point she even came off lifelong psych meds. The most fascinating thing was seeing her remove herself from the wheelchair and become recovered from FND. She spent the final ten years being the most active and mobile she had been in a long time.

My DSis was diagnosed with FND after a week in hospital because,one day she got out of bed,wobbled and toppled backwards-every time she tried to get out of bed she was literally thrown backwards again-:she had no control over her body.
one day fine and next day disabled-for no apparent reason.It was terrifying to watch -we all assumed it was a brain tumour.There is one FND charity but that’s it.Its underfunded but there are quite a few sufferers too.I must admit I’d never even heard of it before.
Surely it is a really good idea to show the impact of FND as so few people have knowledge of it,none of my friends had heard of it and we are all in our 50/60’s.
i think it’s great for these women to put themselves out there and it would maybe make my sister feel not so alone.

Same for one of my friends too.
To set the scene.. she used to be very vocal about how a lot of mental health issues were "made up" (she was a paramedic, so thought she knew better too). She got diagnosed with PTSD, then fibromyalgia, and then FND. She now gets about in a scooter. Has been eating a lot of humble pie.

No it isnt. My best friend has this and it came out of nowhere and ruined her life.

There is lots of discourse about FND on this thread. The thing with FND is, there is a psychiatric component.

There is no obvious disease affecting the body, yet you get symptoms affecting your functioning. The research suggests a background of stress/ACES etc are significantly more common in people who have FND.

CBT is a suggested treatment.

I work in mental health services. You would be surprised just what physical symptoms mental health can produce. Psychosomatic symptoms are a thing. That does not mean what you are experiencing is not real, but there is still a psychological component. The same goes for things like fibromyalgia. Things like non-epileptic seizures are a thing within mental health!

It is naiive to think these illnesses are solely physical because the are not.

Also, from a psychological perspective, people absolutely do get stuck in learned helplessness and the sick role.

I cannot comment on random tik tok uses etc, but these are genuine things that happen. Believe it or not, there are people who unconsciously do not want their health to improve because it serves a function psychologically.

That being said, these people are still absolutely deserving of care and support.

I cant post what I'd like to or my comment would be deleted, but my god what a disgusting bigoted attitude. Hang your head in shame

I don't know her at all and I can't really comment. If she doesn't qualify for UC though, she'd be vastly better off in work than claiming benefits, even on minimum wage. People have their own priorities though I suppose.

Monetising content in a way that replicates an actual salary is nigh on impossible.

No I don’t believe my friend qualifies for any benefits or if she does they are minimal (partners earnings) She has complained about this in the past but I don’t think it’s about the money for her , it’s about the constant need for recognition that she’s got a serious disability. I just think she’s in a place where social media is enabling her to continue the narrative that she’s very ill.

Unfortunately as an AHP there is a very small proportion of patients whose conditions are a huge part of their identity. I had a patient who had a lot of potential but wouldn’t work with us at all. She wrote a lot of poetry about disability, did content creation around it and was lauded as being an expert but in someways it was like she was trapped in a specific role.

It doesn't sound great what she's doing. Does her income depend on it? Some disability benefits do trap people in that small improvements in your functionality can lose you big chunks of income all while you're totally unable to work to earn it back.

Suzanne O’Sullivan is quite controversial.

a lot of the medical work on FND is quite clear that medics absolutely must exclude any organic or physical cause of neurological symptoms before proceeding with any kind of psychological or psychiatric treatment - for example a book I am currently reading on treatment protocols for FND in children established in Australia has various case studies at the start of cases where psychological treatment was started and then an mri found a brain tumor.

many people diagnosed with fnd have not been through a full physical exploration of other possibilities.

(or the scans etc don’t pick things up- example my friend who was initially diagnosed with FND and then it turned out to be MND)

If they MUST remain symptomatic to live their lives, but their illness changes they may still become unsymptomatic. You can decide when to try to hurt people with vile lies and when not to. They can't switch their symptoms on and off. .

For those interested in the psychosomatic aspect of FND and other conditions talked about here I can recommend books by Dr Suzanne O'Sullivan. I think there are a couple but I read Sleeping Beauties. It was really interesting and thought provoking.

Don't think so. Would be 'provoking fate', no?

I completely agree that going out and drinking and socialising of course doesn’t mean you’re not disabled.

I can see why someone posting on social media about disability might curate what they show to a certain extent for fear of being judged but in my friends case it’s not that - she diarises her life in huge amounts of detail, it’s all focused on her condition, how difficult it is for her and how no one understands But when - and this is not an exaggeration and happened very recently- I wake up to a post from her on Sunday morning with pictures of her in bed looking ill and explaining to her followers that unlike most people she can’t go out for a simple dinner with friends on a Saturday night without suffering for days/weeks afterwards and I can see all the other people who don’t know her in real life comment with sympathy and support and I think you’ve completely misrepresented and manipulated that. It wasn’t just dinner and a couple of glasses of wine, it was a big celebration, very very late night you had cocktails and loads of wine (no judgement I did as well) we all feel shit this morning. It’s just dishonest and she does stuff like that all the time. She’s lucky that her real life friends are mostly too nice to call her out publicly.

I see those obviously planted by someone news stories about disability influencers met their goal. I don’t know what entity wants to disparage people with disabilities with this technique, but it is so blatantly obvious that I can’t believe people are falling for it.

i have been incredibly lucky to earn a good living through employment despite being disabled. Not everyone gets that opportunity. If people, especially women are managing to support themselves with content, isn’t that a good thing? Aren’t we supposed to want people to avoid using benefits?

I mean, I don't know the ways or extents to which you feel she misrepresents her life more generally but I can totally understand why a disabled person wouldn't want to share that their social life involves drinking and staying out late as there's just so much ableism around this issue (not calling you ableist - I don't know the person you're talking about or her circumstances at all). Stephen Hawking stayed out late and drunk alcohol, sometimes including shots at parties. It doesn't mean he wasn't disabled and most people wouldn't use it as evidence of a lack of disability in his case because his condition was so visible (and he was allowed to be disabled in some people's eyes because he was a high earner and achiever). Socialising, particularly in the evenings with alcohol is very commonly used to try to discredit people with invisible disabilities though or they're told that if they can drink, they can work, which just isn't true. Some can do both (like Hawking), but many can't.

Oooh... sticky subject indeed.

Mash up disability, ableism, content creation, young folk, women... stir it all up... mm!

I make content, I am also disabled - I do not make disability related content, one reason for that is it would not be good for my mental health to do that, another is having been housebound for over two years (the end IS in sight, days away!) my content would be boring as fuck...

I can absolutely see, and have seen, prior to the rise of 'content creation' how making a health condition or disability your whole identity can be harmful to you, and potentially to others.

On the other hand more awareness of the accessibility issues is no bad thing, smashing the idea that disabled people, particularly young disabled people should just hide away and not mention it is broadly a good thing...

But content creation particularly for platforms like Tiktok is... a problem. To get anywhere, to get monetized you need to produce and publish a LOT of videos a week. Whilst short format videos can be made and uploaded in an hour, or less, producing one or two A DAY takes its toll... and also becomes addictive!

The algorithms across most platforms lean towards rewarding the clickbait, ragebait and controversial content that is 'calling someone out' or starts lots of arguments in the comments as that keeps engagement high. Boring mundane videos about 'this is what I do day to day and occasionally something happens and I get on with it' do not make anyone a living (I know, because thats the kinda content I make, broadly speaking).

SO someone living with a chronic health issue can be pressurised and lured into producing lots of content on how awful everything else...and lean into that as their identity, very very easily.

And there are unfortunately people willing to fake things. There always have been such people, we'd call them mentally ill, pre social media, I still would. I can think of a few cases of people faking stuff in a way that actually was physically harmful..

The young lady who went as far as paying a body modification artist to slash up her neck, face and shoulder, then got a mate to cable tie her hands and write on her body in a nature reserve, late at night, in order to fake on social media that she'd been attacked by 'antifa'...

There was a person within the self trained service dog community in the US who was found to be faking Tourettes, they ended up (after several attempts) committing 'suicide by cop' after going to ever more extreme lengths to get engagement on their videos. They were very very evidently unwell, just not with Tourettes! (This wasn't any sort of 'trial by internet jury', evidence came out of them admitting they did not have Tourettes, had never had it, no DX etc etc).

So I am very much on the fence really - I was a person who had a 'get on with it, only wimps use sticks/wheelchairs, you're just being lazy' attitude until it nearly killed me and I got over myself and started getting help. Perhaps if I'd seen more content showing me that asking for help was OK earlier on, I wouldn't have damaged myself so badly.

But I can absolutely see how some people are... not genuine. If I get a whiff of that, I just stop following/block their content. That's the safest thing to do for all concerned!

Clearly there are a lot of positives from posting on social media about disability. A lot of people who do it are very brave in putting themselves out there and do amazing work in building networks, raising awareness, providing advice and support and fundraising.

However, OP I vote you are not being unreasonable based on personal experience. I have a friend who constantly posts personal content about her condition very regularly (often several times a day) and has done for years. I feel she now is invested in her illness to such an extent that she would be unable to ever see herself as someone who could be well (even though it is a condition which it is possible to recover from). She also completely misrepresents her reality to a huge extent and gives a very misleading picture of what her life looks like. She is actually able to do a lot of things that are unusual for someone with her disability - drink heavily and often and stay out late at parties for example but these things are not shown. Attempts by family and friends to gently point this out are met with fury and cutting people off.

I realise I sound like a complete cow but my honest view is that she has been well now for quite some time but her life suits her as it is - no need to work, no need to do anything for anyone else, behave badly - blame it on being ill and the social media content helps with maintaining that view of herself as someone who has a serious ongoing disability. People who know her in real life don't engage with it.

I don't know with FND - it is classed as a mental health problem. But so was Fibromyalgia at one time.

A friend has FND and medics tell him psychiatric input will help more than anything else. They say his mental state brings on the FND.

Things like MS, MND are purely physical, and diagnosed by physical tests.

They are neurological conditions, but ultimately psychosomatic causes can be the root cause of such afflictions. I take the view of Dr Sarno here. Stress and anxiety are also not the same thing as psychosomatic manifestations. Psychosomatic doesn’t mean, you’re just a bit stressed or anxious.

Non epileptic fits for example can be treated with psychotherapy. This is a treatment the NHS does offer for this particular type of fit when the EEG shows no abnormality, but the individual still loses consciousness.

It’s a huge area of medicine now and it doesn’t do anybody any favours to dismiss it with absolute certainty.

Yes migraine and FND are neurological. I agree. But that doesn’t mean the root cause of such a manifestation isn’t psychosomatic. Not everything can be looked upon entirely through the medical lens.

Migraine, like FND, is a neurological condition. Stress and anxiety can be contributing factors but fundamentally it is a neurological condition and, like FND, is classed as such. Migraine and FND might have psychological influence, but it doesn't cause them. The strongest risk factor for FND is having another neurological condition.

@outdoorkitchen Having a spinal cord injury is fundamentally different to having FND, because your son has a structural (physically manifested) problem, while patients with FND have miscommunication between their brain and their bodies. There are people who can slide, run and walk backwards but struggle to walk forwards (check out from 12:23).

If anyone is interested in learning more about how psychosomatic processes can manifest themselves as physical symptoms in your body such as FND then I highly recommend Dr John Sarnos book, the Divided Mind. It is a beast of a book and was recommended to a family member via a psychiatrist. Really was life changing for me. I manage to “cure” myself from many afflictions.

Yes, the diseases and symptoms are real. I have migraine which for me personally has a psychosomatic component. I don’t imagine it, I sure do get the visual disturbances and headache but the migraine itself is still a psychosomatic manifestation. That’s just one example. Just thought I would state that before someone comes along to bite my head off. You have to tread carefully on this subject but I really do recommend that book if anyone is interested.