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

i find it really depressing how much some people enjoy punching down on seriously ill and/or disabled people. The othering is off the scale.

Do they not understand that at any point any one of us could become disabled. And that if we are given a long enough lifespan, probably all of us will do?

This isn't just about disability though. It's regarding the adoption of and promotion of disability as a life role. People aren't knocking genuinely disabled people, it's more concerned with the influencer types who play up their problems for whatever reason. I'm sorry, but it is a thing. I was just talking to ds about this last week because I see them online as well. The ND community have their fair share too.

ND people have been sucked into the trans and the physical disability arena. Many of them fall victim to these things. There are healthier ways of dealing with difficulties than nurturing yourself into the inability to face up to life's challenges.

A minority of EDS is genetic & identified with a genetic test.

The wider range of people getting diagnosed with it now have hypermobile EDS. Theres no clinical test proving it.

There are a lot of these conditions now, with no clinical test or a very unreliable one... hypermpbile eds, fnd, fibro, pots.

If only there wasn't a small group of people blatantly faking/performing symptoms.
FND is a nebulous diagnosis that can encapsulate serious mental illness

I think it's good that we're becoming more open as a society and accepting that people need not 'put on a brave face' or hide the pain of their illnesses/conditions. It's one positive to come out of social media that people need not feel alone in their experiences. If these videos help even one person, that can only be a good thing.

I’m genuinely really sorry that you were in constant pain when you were younger.

i think it says much for your strength of character that you built a life and have persisted despite that.

I also have spent much of my life in pain. My life is genuinely so much better if I have drugs that help with the pain I have - not painkillers any more although I did have a couple of years on tramadol immediately after my accident.

people who are experiencing pain in general do much better and are more able to build their own lives if that pain can be treated. That doesn’t mean just handing them strong painkillers but it does mean accepting that they are in pain and working with them on ways to help them reduce it, whether that’s drugs to calm the nervous system down (I’m on these) or things like meditation or physio.

I’ve found both physio and meditation and also bluntly distraction (so many tv series binge watched) helpful.

disability isn’t always comfortable to look at, and I’m grateful that some young disabled women are able to be visible and out there so that it’s not like when I was young and I had never heard of or seen anyone disabled at all.

.

I dont think they are deliberately faking it. I think they really believe themselves to be severely disabled, which is very worrying, and have become overly focussed on it.

It is.

It isnt though.

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

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.

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

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.

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

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.

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 🤦‍♀️

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.

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

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

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.

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.

Both groups exist in online spaces.

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.