Girls Using Walking Sticks

This thread has depressed me.

I live with an energy limiting condition (yes, diagnosed, no i haven't invented it) and have recently discovered the difference mobility aids can make to my life.

I'm struggling with shame, what people will think of they see me get out my wheelchair and walk a bit, etc.

Apparently most people will be wondering if I'm a big fake. So that's nice.

I don't enjoy being dependent on my husband. Its really difficult being in a wheelchair because even for something as simple a wanting to read a poster, you need to all your carer to turn you round or move you a little. People not in a wheel chair just take a step to the side. Sometimes I feel like I'm asking too much.

I've been on holiday and my husband drove me to the beach and helped me down the steps so I could have a careful 10 minutes time playing in the sea. I then had to rest for 15 minutes before struggling back up to the car park. I've been knackered for 2 days. If we need to go out today, I'll need the wheelchair to avoid making myself worse.

I'm feeling low today. I'm putting on weight and there's FA I can do about it as moving about too much leaves me bed bound for days. This isn't me, is not the person I used to be - chubby and dependent. I used to be fit and strong 💪

So threads like this, speculating on other people's disability really get me down.

I get that if there's a trend it's useful to look into that and find out why, not not everyone here is doing that, some are clearly just here to judge. And that's shitty.

Oh yes that’s definitely true. I just want to point out I don’t assume anyone in a wheelchair or using walking aids is faking their disability. I may have come across badly in this thread but that is of my own doing, I’m not the best at articulating. I did example one person because that one persons presentation doesn’t add up, for me anyway. I don’t judge everyone with a stick or chair based on one person but I did judge that one person based on what they have shown of themselves.

I remember many years ago I had some heart scans done and when I met with the cardiologist for my results he told me I don’t have a heart problem. He was so surprised at my relief and said you would be amazed how many people are not happy to be told their heart is fine. I guess some people just want to have something wrong with them, for whatever reason and those people will always make the ‘worst’ of their situation.

Perhaps. But when you know something isn't right with your body you are desperate for an answer that will help you make sense of it and help you learn how best to manage the symptoms you are struggling with. Getting a diagnosis after 20 years of being ill was a very happy moment for me. Not because I wanted to be ill. And certainly not because I wanted to have a serious and life threatening neuro-muscular junction disorder. But because I could finally make sense of all my struggles and even more importantly I could learn how to manage my symptoms both through medication and pacing.
Later came the sadness that I haven't responded well to the treatments that put some people in remission, but yes the primary initial emotion was relief. Anyone who doesn't understand that clearly hasn't spent decades battling disabling symptoms without a diagnosis

Surely large numbers of girls pretending that they are in some way disabled will do the disabled no good in the long run ?

and the idea that suddenly we have a lot of seriously ill young women - but not older women , not males, and not with an increase in an diagnoses , does suggest fashion or social contagion

But I wasn’t talking about people being relived to find their answer, it was about people being disappointed to be told they were ok. It’s not the same.

But I wasn’t talking about people being relived to find their answer, it was about people being disappointed to be told they were ok. It’s not the same.

There's no test.

That's the problem, isn't it? The alternative to treating all young women as if their symptoms are psychosomatic (which I think is what you're suggesting I am doing, or that Stock is doing) is to treat them all as if they have a genuine illness. Which is also problematic, particularly if it means that as a society we have to fork out large amounts in benefit payments.

If this is all the case then you should have no problem with this being looked into properly. The outcome would be that these are all genuine cases. The same way as scientists are looking into the truly disturbing increase in cancer in young people. Or if there is a group of kids who are not physically sick but use sticks for whatever other reason this would actually point to other problems that need addressing.

It kind of is though. On that long journey I had various tests for various conditions and I did find it hard when they came back negative as I wanted answers.

Where did you pick up that cancer in young people was increasing alarmingly? Not heard that before.

I had to start using a walking stick in the last 2 years due to an injury leading to a diagnosed disability (not POTS). I do need to lean on it heavily after just a few minutes of standing and walking. Being ‘too young’ to need a mobility aid, I’ve had a few encounters with disbelieving people when in public. Other young people I know who have need of a stick are afraid to use one because of this recent stereotype.

I don't know if this is how you intended it, but it sounds like you're saying FND is 'all in the mind'.

I don't believe that is the case. Its a neurological condition where the nerve signals are not being transmitted properly - so you could have limbs which are, in themselves, fine, but they don't work because of a network issue between the limb and the brain.

The 'functional' means a change in the function of a body part, rather than in its structure, ie looks fine but doesn't work.

Maybe that's what you meant? Its not clear from your post. You seem to be saying that the 'functional' part means there's no actual, real problem, and I don't believe that's the case.

I work in a university and have still never seen this 'phenomenon' personally.

Why would you assume FND for all these people @NotBadConsidering ? Many people with MEcfs have been misdiagnosed with fND I believe. So that's complicated to untangle too.

@RoyalCorgi MEcfs is a real disorder that is massively underfunded in research. People with it have suffered medical negligence and scandalous 'treatment' that caused and continues to cause people harm. It is really hard to get a diagnosis beyond a GP and many GPs are badly informed on MEcfs. Some NHS trusts have no MEcfs service at all or no consultants. This being the case, how can anyone point out that symptoms aren't rooted in real bodily disorders? If some are faking as you suggest as part of some social contagion, how on earth is this not going to damage people who have genuine illnesses and disabilities?

So you're saying that some people saying they have MEcfs or fibromyalgia or long covid or POTS or Heds (all of which often comes together/overlap) have real symptoms but it is psychosomatic? But people who actually have these conditions have also been told it is psychosomatic by the medical profession (disproved and good indicators now via the decodeME research). So are we to treat everyone who has such an illness as a youngster as someone in a trend feigning the illness or do we believe people? There's no test.

As someone up thread said, by all means carry out legitimate research on social contagion but naming individuals and having yet more anti disability narrative in the press is really damaging for very vulnerable people.

I found Stock's article really disappointing and concerning. A breezy dismissal and mean spirited. I might not like the way identity politics has inveigled it's way into this area too. I'm mid fifties and do not enjoy naval gazing and endless tiktok style attention seeking, but I am very concerned about this narrative around young women .. I think it is not the take I would want to see from older feminists.

I agree - I’m finding all these judgemental comments on here quite upsetting.
I have a lupus, plus hip replacements, fibromyalgia diagnosed by a rheumatologist and I’m deaf. I’ve been in a wheelchair, on crutches and had to use lifts sometimes. I’ve got a sunflower lanyard, a badge to ask people to offer me a seat on the tube and a blue badge - I avoid using them if I don’t need them.
But to most people I look fine and some days I am fine, but my life is very restricted since I became ill.
If these youngsters need sticks or other aids, they’re not hurting anyone else, so maybe we should just ‘be kind’ and stop being so horribly prejudiced about disabilities.

Yes, your description is exactly what FND is. And it is also all in the mind. It’s not an actual issue with nerve signalling. There are no defective nerves. It’s a level of consciousness that it impacting the processing of those signals. This can be objectively demonstrated in people with FND. Nerve conduction tests can show the nerves are working perfectly fine. In someone who says they are blind, they can undergo a test called ERG which demonstrates perfectly good signals reaching their brain from their eyes. An EEG can be done during supposed seizure activity and demonstrate clearly that they are pseudo-seizures.

The “signalling” description you use is just how to help people with FND understand and accept their condition. It makes sense. It helps people make sense. The anxious brain gives us gut symptoms. In extreme situations there is fight/flight, a physiological response to trauma, and so on. When it is explained that the higher brain can impact the body through various mechanisms it helps people accept and understand their condition. But there is no actual problem with the nerves; not only can no problem with nerves be demonstrated, it can be demonstrated that nerves are functioning normally, from an objective sense.

What they experience is real, but there is still no physical problem. “Functional” means their body functions are affected, but it’s also a euphemism for “no actual neurological disease”.

So its a brain issue rather than a nerve one?

The NHS literature i had (re a friends child, not myself) referred to "We know that the symptoms of FND happen because there’s a problem with how the brain is sending and receiving messages to itself and other parts of the body" - which i guess must be quite dumbed down!

My point though was that there is something real that is wrong - just like depression is a real thing.. I felt that the post I was responding to did not make that clear in fact was suggesting the opposite.

Yes, people have been misdiagnosed with FND.
@NotBadConsidering .

https://meassociation.org.uk/medical-matters/items/functional-neurological-disorder/

You're coming at this from a very different experience to me and I don't recognise it. We will have to agree to disagree. I don't see the evidence for what you claim.

Treatment for FND if you actually have MECFS is dangerous. Graded exercise therapy is not recommended for people with MEcfs and was removed from the nice guidelines.

There has been some recent research into how muscle fibres react differently to exercise in ME. I'll see if I can find a Iink to the paper (phone about to die).

It very much concluded that graded exercise IS dangerous for ME. What are your qualifications for insisting you know that its not, @NotBadConsidering ?

Yes it’s a higher brain issue, a psychiatric issue. There is no physical issue with the brain as far as our understanding of mental health disorders go. We don’t fully understand things like dissociation, how the higher brain/consciousness responds/is impacted by such things.

What you describe about “sending/receiving messages” is to help people get their heads around it, to give them something tangible to describe their condition. Because giving people with FND something tangible and reinforce of the realness of the condition from treating healthcare professionals is how progress towards treatment is made. Saying “it’s all in your mind” has been shown to be the worst way of helping people with FND, it just leads to resistance. It’s important patients believe that their treating doctor/team don’t just think “it’s all in their head” because then they can’t move forward with steps to get better.

For example with pseudo-seizures, there’s no need to say during one “stop lying on the floor shaking! You’re just making it up!” Instead it’s a case of letting it happen but not have everyone clamouring round calling an ambulance/giving drugs/calling the resus team in hospital etc and reducing the stress around such events. With physical leg issues, you can’t just say “you can walk perfectly fine!” Instead they do need physio, rehabilitation etc, like the young woman in the article above whose legs are now deformed as a result.

In many ways CFS/MAS/POTS/EDS diagnoses do actually allow this to happen; once people get their “label” as such, they can then “move on” and focus on treatments, many of which involve the same things. I suspect it’s common in medicine to not fight such diagnoses because is it worth it if the patient is getting physio, rehab, feeling happier and improving?

But as mentioned there are some who don’t ever seem happy at being told things are getting better. Hard to help people in those situations.