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

I'm not sure that it has a disease progression in the way you are suggesting.

It's certainly very difficult to identify who's doing it for clicks and who's genuinely disabled. On the whole, I don't believe it's healthy to over focus on difficulties you have - unless it's severe - because it can reinforce the symptoms. Every illness has a psychological component which influences things like pain and functionality.

I come across young people on Instagram who make reel after reel of complaining about their autism and adhd symptoms. I'm like "yeah, that's what it's like, now find ways of dealing with it instead of playing up your difficulties". They could just be doing it for clicks, but people watching will take it all in and start over focusing on their difficulties and then it takes over their life. I understand, I'm audhd and I share stuff on here if it's relevant, but it's absolutely not a get out of jail free card. The same goes for parenting kids with ND. If cognitive functioning is adequate, crack down and teach them how to deal with it, don't use it to excuse bad behaviour or abuse. Life is hard and unpleasant at times, find a way through. Both my YAC are ND. I take it into consideration, but I brought them up to deal with stuff and incorporate employment into that mindset. I'd be appalled if they were on tictok coaching others on how to be disabled.

Yeah, I understand. There may be detectable neurological indicators though. Or perhaps differences in structure or development.

Did you not read what I said? I said I believe its real...

Yeah…this is why I don’t tell people IRL about my disability.

To people saying there is no clinical test for conditions mentioned on the thread eg POTS, yes, there absolutely is. Claiming otherwise just drags down people with disabilities. Please don’t. People are already saying this is why they can’t be open about their disabilities with others (because they won’t be believed). Diagnoses aren’t just given out like prizes and doctors are well aware of the issues in this space.

But also in terms of worrying about how people might be affected by this content, let’s give people with disabilities some agency in this discussion. Normally how people engage with content about their illness or disability over time will ebb and flow. Often participation in online patient communities is short-lived over a difficult period only, or it fluctuates over time depending on how challenging things are for people.

People may join a group primarily to express how they feel at that time or to obtain an answer, rather than staying engaged to build relationships with other users. So audience or membership turnover tends to be high. (Can be the same on MN) You can get a small number of highly engaged superusers, with the majority being only occasional posters or just totally passive non posting members.

People may also exclude themselves from the content addressed to their condition after a while. especially with long-term conditions or permanent disability, if they consider the content unhelpful or if hearing about how others are struggling is getting them down.

The same will happen here to this content if it’s not helping people. And if it is helping people, then why not have it up there? It’s not like there’s loads of free support out there for people who are struggling, which is why some are DIYing and making it or are seeking it online.

For some people it'll be useful. I'm in a fb group for chronic pancreatitis, but I only go there occasionally as I've incorporated my problem into my everyday life and manage it within that context. I haven't made it my sole focus, used it to get out of doing things or made it part of my personality. I'm still me, just with this as an aside. I don't talk about it to friends or relatives. It dominates my life on occasions, but I'm determined that it won't take centre stage.

Some (notice I said some) people with disabilities that can be managed, do let it dominate their lives. Some of the pots people claim they're very ill with it and they can't stand up or move around. This just isn't true. Same for dysautonomia. Yes, you can feel strange, weak, off balance, struggle with temperature, unwell, but it's all manageable. Eds is rarely bad enough to need a wheelchair. Most people learn to manage it. Many of these things are uncomfortable and inconvenient. I've nursed seriously disabled people and there's no comparison. I used to be an adult disability nurse. I'm sorry, but there is a cohort out there who are using these alleged diagnoses to opt out of life. They may even try to claim benefits. They make life harder for the fully disabled to be taken seriously as well.

I am subscribed to the FB page of a lady who has BPD, ADHD and Autism, and she posts about her difficulties but always in the context of how she dealt with them (she has done DBT, so a lot of it is based on that). It is a very useful page, but she has had messages and comments from people accusing her of attention seeking or playing some sort of sick role.

FND is not a mental health disorder. It is a neurological condition with genuine neurological symptoms. Therefore, it is classified as a neurological disorder.

FND can be understood through two overlapping theories: as a stress/threat response and as altered predictions in the brain.

1. Stress/threat-response theory
Stress, pain, injury or trauma can alter the nervous system's state, increasing arousal and attention to the body. This may disrupt normally automatic processes such as movement or sensation. Importantly, this does not mean symptoms are consciously produced or that a person must feel stressed when symptoms occur.

2. Predictive-processing theory
The brain constantly predicts what the body should feel and how it should move, then compares these predictions with incoming sensory information. In FND, researchers propose that incorrect or overly strong predictions may sometimes dominate incoming signals, leading to genuine symptoms such as weakness, tremor or altered sensation.

At a cellular/network level, this may involve changes in how groups of neurons learn and weight predictions versus sensory information, involving systems such as GABA, glutamate, dopamine and noradrenaline. However, there is no single identified cellular abnormality that causes FND.
(ChatGPT)

The problem with disorders like FND (and others such as chronic migraine and endometriosis) is that those affected get such bad care, that they are left with no alternative than to spend their days desperately looking for information on how to improve their terrible symptoms.

Just been looking at tik toks with my teenager who has a spinal cord injury and he was very sceptical about many of the videos, wheelchairs that really wouldn't be useful for what they are saying they are using them for and the way they were falling over.

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.

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).

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.

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.

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.

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!

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.

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 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.

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

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.

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. .

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)

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.

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.