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

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.

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.

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.

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.

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.

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

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

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

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.

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

You may know one person who you think does not really have it.

that does not mean that FND itself doesn’t exist.

there are people who fake cancer. That doesn’t mean cancer doesn’t exist.

FND has been a diagnosis since 1913.

Both groups exist in online spaces.

I am specitucal of FND.

Someone I know has it, claims she needs a wheelchair and rehabilitation yet when she goes out on the weekend most weekends is perfectly fine walking and talking normal.
Its like a miracle but come Monday back in the wheelchair with a fake accent.

I do believe it's real but I think its very over diagnosed and some people play on it as it's impossible to be tested for it.

Are you really grouping Nordic walkers into walking stick users? It's a good thing you aren't working in research.

There is a trend of mainly young women larping as disabled and using various aids to signal that.

It's not great. It's unhealthy for them, and bad for people who are in fact disabled.

This is interesting. I wonder if anyone is doing any research in this area as early detection and treatment would be so important.

Accusing - really suspecting - people on tictok otoh....

It's absolutely part of what the OP is about.

That kind of thing is very popular tictok content at the moment.

There is a ton of incentive to play into that, consciously or subconsciously.

Do you remember all those girls who "caught" Tourette's? They thought they really had it. They didn't.

We don't usually know if these tictok people are genuine at all.

Thank you for your lovely response for the disabled. I have M.S and my daughter has FND as well as a colloid cyst (brain tumour). I can no longer work and she struggles to work, she just about manages two days a week.

I’m fortunate that my diagnosis came after we’d paid our mortgage and my husband has a decent paid job. My daughter is renting with her boyfriend, he has a minimum wage job. If she could work full time she would, unfortunately that’s impossible.

The hospital that diagnosed FND has a team of physios, Occupational Therapists and psychotherapists. But due to us not being in the correct postcode she can’t access this assistance. It’s pretty shit really.

The brain tumour is monitored, she’s due to have an MRI next month, if it’s grown it will have to be removed, it’s the same type that Davina McCall had removed. Strangely my daughters was picked up by coincidence, they were looking for M.S , but found this instead 🤦‍♀️

I think it's interesting that OP has raised a fairly good point about the waves of trends in content online and everyone has assumed it's in bad faith.

There've been waves of 'popular' diagnoses on the internet for years. For a while it was dissociative identity disorder, then Tourette's, then ADHD (/neurodivergence generally), etc. I'm strongly pro-trans in a way that often doesn't go down well on here, but I think at least partially there was a 'trend' for a diagnosis in gender dysphoria, too. ME/CFS and FND are very prevalent at the moment. Eating disorder content has absolutely skyrocketed as though we're back in the 2010 Tumblr era and many people I know who have had EDs say that being online and getting the feedback loop of people worrying about you fed into it and it became a kind of contagion.

That's not to say that the majority of people suffering from these things aren't suffering from them, and it's not to say that people with disabilities shouldn't be visible or talk about them. In many cases, increased visibility will be helpful and encouraging for others going through the same and help educate people too. But there are very clear waves of trending things, very often co-opted by young women, very often things which garner sympathy and support. It's not a leap to suggest that in a world where young people are increasingly being fed tradwife content, where an Orwellian level of scrutiny about purity culture is on the rise, and where the appeal and benefit of working becomes less and less obvious (because the normal rewards of doing so like homeownership or financial stability disappear into the ether), where teens are increasingly coddled and given less responsibility as they get older, so that cliff edge into adulthood is much steeper, that some young people are leaning into vague, difficult to disprove diagnoses as a way to get validation and avoid facing up to the miserable reality of adulthood. And that it's young women, who become helpless and in need of financially and physically being supported as a result of these diagnoses, is not a surprise either.

I agree, my daughter has FND, it’s absolutely bloody awful, not many people have heard of the condition either.

I have FND.

part of the issue with it as a diagnosis is that it’s a diagnosis of exclusion - that is the neurologist does the tests and if you have symptoms and don’t have anything else you get an FND diagnosis.

I’ve been diagnosed for a while and have been attending suppprt groups. In that time, one of my friends who was initially diagnosed with FND has had his diagnosis changed to MND (motor neurone disease) and is now under the hospice and in a wheelchair fulltime with breathing equipment as he lost motor control of his swallow reflex.

it seems quite common for certainly older people who are diagnosed with FND to later have the diagnosis changed to MS/MND/Parkinsons or similar.

it seems likely that they actually had MS/MND/whatever all along but the symptoms were not strong enough /it couldn’t be detected.

People who are ND are genetically more likely to have eds/pots/dysautonomia and hypermobility due to genetics. Research is ongoing in this area.

It's more a case of mental distress affecting the software functioning of the brain, which in turn, causes physical symptoms.

The mind and the body are in constant feedback communication with one another and one will affect the other.

The sick role can be a seductive one in that it absolves the sufferer from all societal obligations (namely work) and offers an alternative to the responsibility of holding down a job.

Deep down, people who are ND know they'll struggle with employment. I think some can seek a way out instinctively by making a lateral move into chronic illness and the adoption of the sick role. They can try to legitimise this by seeking out others online now and sharing their stories. Some of the disabilities are genuinely physical, like eds and pots and some are psychosomatic, which feel real, but the mind has created the symptom. To them, it all feels the same.

Or we could think that someone with such profound disabilities has a real struggle to earn good money?

It isnt though.