Girls Using Walking Sticks

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.

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.

Because it puts extra strain on already massively under-funded disability services in a country with a stalling economy that has traditionally failed people with disability year after year.

Take disabled toilets: there aren’t enough of them as it is. People who need them can’t get into them. So now add a big increase in young women and girls who don’t actually need them but do to fit their unnecessary walking sticks in?

And it reduces funding overall. This happens everywhere and results in the opposite of what people think will happen.

Take a hyperbolic example:

If more and more and more people say they have POTS, say 20% of the population, those people will say there needs to be funding and support for people with POTS. What will actually happen is the government will say too many people have it, it’s just not possible to fund something that is so ubiquitous in society.

A lot of countries have to deal with this. In Australia there is the National Disability Insurance Scheme. The problem there is it attracted so many people with diagnoses of all sorts, many questionable, that it now can’t fund everything because costs to the taxpayer have blown out to billions so it is cutting access for particular diagnoses.

So accuracy of disability diagnoses affects everyone.

It's only an 'absolute eye opener' as to that particular person's behaviour. Tbf it puzzles me too, but it isn't proof of any broader points about disabled people in general. And she's quite right that some people need a wheelchair only some of the time, not all, although obviously it's wrong of her to put people out trying to help her on the days she doesn't need it.

Why do you 'fear' it might be a trend. I mean if some people are feigning disabilities they don't have (as I dare say a few will be), that's pathetic and in poor taste, but how does it affect you personally, any more than any other trend would?

While I get that making your disability is your identity isn't healthy, it also isn't something we should have to hide or mask because of shame or fear of judgement. My quality of life is so much better since I have had a diagnosis and been able to talk to others who understand what I live with, and since I accepted that i can get back out and go to art galleries and museums and travel if I use a wheelchair

I am lucky too that my condition allows me to still work full time and volunteer on top. But for some people the symptoms - and treatments -really do take over their life.

It is an uncomfortable fact that illfluencers exist; & while in the US girls & young women share the details of unscrupulous doctors who will issue “coveted” diagnoses (the [h]EDS-MCAS-POTS “trifecta”; increasingly frequently combined with gastroparesis & CCI/AAI) & treatments that cause iatrogenic harm (central lines + IV saline; steroids; wheelchairs; feeding tubes; spinal surgery…) in the UK it’s about where to try to get referred to (NB, not where the top specialists are) - and what you should say to get the diagnosis you want. Not things like “make a list of your symptoms & how often they happen” or “take someone with you to the appointment to help explain” stuff - it’s like sharing a cheat sheet, for want of a better description.

Lots of [would-be] illfluencers in the UK are quite open about the fact they’ve self-diagnosed with various physical issues, citing NHS waiting times. When they are then told they do not have said issues they refuse to accept it & insist this is gaslighting & medical misogyny. Some of them research the things they’re claiming very carefully & put accurate information out; others simply spout arrant nonsense, sometimes making claims with the potential to cause real harm.

I’m concerned about anyone of any age using an unsuitable mobility aid. I’m also concerned someone claiming to be a physio on page 6 of this thread is ignorant of the reasons physios will advise people to use a single crutch 🤨🙄

That someone is feigning/exaggerating/inducing (incidentally, Munchausen’s By Proxy is now known as FDIA or FII & Munchausen’s is Factitious Disorder (Imposed On Self))/otherwise being dishonest about the illnesses they claim isn’t an assumption to be casually made. It should also be held in mind that any of those behaviours are a serious issue in & of themselves - just not the ones the individual “wants”. Moreover, part of the reason the social media illfluencers are so dangerous is because they drag in vulnerable young people who are actually disabled. One of the “trendy” brands of sticks/crutches is actually far superior to standard NHS provision - no use if you need a tripod base or should be using a frame (& I’m sure I made myself popular with them by encouraging a potential customer to get assessed to check what she needs & THEN come back if the company can provide it); but brilliant for crutches/sticks.

People making their disability their entire identity isn’t healthy. It can be incredibly difficult, though, to understand yourself through any other lens when other people make your disability central to your identity. For young disabled women whose peers are forging ahead into careers or further study it can be very difficult to build a sense of self that isn’t wholly focused on their disability - & sadly we are still stuck in an era where it is expected people will build identities as if from LEGO, rootling round for random blocks to construct their identity.

The online peer networks of people who [claim to] have the same disabilit[y/ies] as you can be MASSIVELY toxic; so there are lots of valid reasons to be concerned about certain behaviours. It is possible to identify liars with whom you have to interact a lot IRL; & it can be possible to spot those engaging in a range of problematic behaviours online (though people should no more assume on the basis of a random post than they should a random IRL encounter).

Functional neurological disorders are real, underdiagnosed, and many people go through life without them ever being properly managed. It’s hugely misunderstood how real the manifestations can be, which means people can’t accept that their condition is functional and doctors can’t let themselves believe that the symptoms described and the signs seen can be the result of a FND. Seizures, lung issues, neurological symptoms, limb problems, deformities, deafness, blindness, you name it, it can happen from a FND. Patients with FND have had operations they didn’t need, feeding tubes they didn’t need, medications started they didn’t need, and on, and on, and on.

They come about from a cascade of multiple people doing bits and pieces of actual healthcare, cumulatively adding things without rationale in a poorly functioning system. And they absolutely travel in clusters of social contagion. There are whole lists of different types that do this.

There are many people where it becomes patently evident their condition is functional, at which point most medical people don’t have the courage to say it. Because they are accused of being “ableist”, or dismissive, or cruel, or whatever.

Which is a shame, because most people who accept their FND diagnosis are grateful that they can finally sort it out.

Do they need crutches and wheelchairs? They probably do, because to go from accepting a FND diagnosis to full function takes a hell of a lot of work and a long time. It’s not like they just start dancing around like Grandpa Joe with a Golden Ticket. Their disability is very real to them, and even if they accept they have FND, the symptoms are still very real to them.

The big question is why there are so many people demonstrating FNDs publicly? Of course that’s a reasonable question to ask.

Why do we not see the same number of walking aids in the same age group outwith university? And we really don't, I live in a smallish town and see the kids my children went to school with and didn't go to university still around daily, there isn't a single walking stick anywhere. Or international students, you don't see them with sticks either. You would expect all these other groups of people being in need of walking aids at similar rates and this is just not happening.

And didn't walking canes used to just be a fashion for victorian men? I am sure that made life immeasurably easier for the men who actually needed them.

I don't disagree. I am happy for people to do lots of robust academic research and tease out the probably varied causes. And also some research and work on why boys and men are so reluctant to use mobility aids /chairs /priority seats even when it could keep them out of hospital.

But shitty articles implying that someone who can get out of their wheelchair and do things is faking their disability are hugely damaging and ignorant

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.

I can think of quite a number of girls (myself with Myasthenia, my friend with ME for starters) who would have been able to embrace university far more fully if we had felt wheelchairs/sticks were an option.

As for the boys, I know of several mums of teen boys/young men with Myasthenia who feel helpless as their boys don't feel socially able to use wheelchairs or sticks even though it could improve their lives immeasurably. And only recently there was a Facebook post in one of my groups from a man with Myasthenia in his 40s who ended up incredibly unwell after having to stand on a train journey (standing for any length of time makes us ill very rapidly) but still doesn't feel confident to use the priority seats on trains because, to the untrained eye, he looks fit and healthy

Exactly.
People need to read Tilly Rose's blog or her book. She was dismissed so many times and in such nasty ways.

Hypermobole EDS is tested via the Beignton (?) scale and is easily observable.

I can understand the concern over tik tok videos trying to make conditions seem desirable but I think singling out individuals is dangerous. Whether or not this young woman in the video is genuinely ill, she's going to be in for such a lot of flack now. I suppose one could argue she's invited that sort of attention if she's a sort of influencer but I think it's very concerning for her and for people with disabilities in general.

I have spent my entire adult life in and around universities (in several countries and three continents), I also have children currently at university, and up until 3-4 years I could have counted the number of students in wheelchairs or with walking sticks on the fingers of my hands. Whereas during the last few years you can see groups of girls with sticks on campus, never boys. Even if women are overrepresented in some of the conditions requiring walking aids, you'd expect at least some male students as well. Where have they all been until now? Whatever caused this sudden increase, be it physical or psychological or social, it's worth trying to find out what is going on.

I don't think it's safe to accuse a particular individual of being a victim of social contagion, but I think there are legitimate questions to be raised by the apparent exponential growth in certain conditions.

In the same way, gender dysphoria used to be an incredibly rare condition but is now widespread in schools and particularly amongst young adults, or the way Tourette's rocketed amongst teenagers during COVID which appears to have been fueled by TIkTok videos. It is also noteworthy that a number of these young women are affected by multiple issues where a social contagion is suspected which might suggest that they are particularly susceptible to these kind of trends/psychosomatic issues.

If you're on TikTok it can be quite hard to escape this stuff. I like nail polish and on almost any video about preventing chipping the comments seem to fill up with young women and teenage girls saying that nail polish chipping is a sign that you really have hEDS despite there being no studies to back this up and it not being a symptom recognised by doctors generally. There are often numerous replies saying "Oh my gosh! I must have hEDS". HEDS is also the type of EDS which cannot be tested for - other varieties of EDS can be diagnosed by blood tests on my understanding.

A teenage girl I know recently hurt her knee playing sport. When she said it wasn’t better after the usual rest and careful management, her parents took her to have it looked at. There didn’t seem to be anything seriously wrong and she was advised to continue with treating it carefully until it did get better.
Soon afterwards she appeared with crutches - nobody knew where she got them from - and insisted on using them all the time “for her knee”. They didn’t seem to be properly adjusted for her height, but she personalised them and added extra padding for comfort. They provided lots of distraction, fuss and bother for everyone. I was amused because after a recent knee replacement I was less dependent on crutches than she was (and I was using mine properly - she had obviously never been taught, e.g. how to go up and down stairs).
A few weeks later they went on holiday and magically she didn’t need to take the crutches with her. It’s still a mystery where she got them from.

ETA I did mention to her parents that it was a bit of a fad among teenage girls at present.

But how can people label others as having imaginary disabilities? MEcfs is real. Eds is real. Fibromyalgia is real. POTS is real. These conditions often overlap.

They affect more women than men too and we've just been through a pandemic which has triggered a surge in cases.

If some young people are pretending to have these chronic illnesses then this is an issue for their parents to unravel perhaps. But nobody should assume people are lying. Any suggestion people are lying is really worrying. The consequences of such judgement are that disabled people will fear using mobility aids or asking for help that they need to leave the house.

I would have thought that KS might have more empathy having been the subject of her own witch hunt.

I don’t know about the trend, but I had to have a big knee brace and crutches for a while and honestly it was rather lovely to go out and be treated so kindly! People (especially men in fact) stopping to hold doors for me, and cars slowing so I could cross the road…

…maybe these young ladies are just hankering after some old-fashioned gallantry and the stick helps with that?

I agree that inconveniencing the staff wasn't ok, I would never do that, even if it took a huge toll on me.

But the mere fact someone can get out of their wheelchair and (say) skate doesn't mean they don't need it

That particular wheelchair user does gymnastics in her spare time and doesn't seem to be hindered by any disability then. Im sorry but its just ridiculous. If she could walk up the stairs then she should have done that rather than inconvenience several staff members for over half an hour. How entitled. Also the number of other ailments she also has such as the tourettes ( a verified social contagion in recent years) etc is extremely unlikely. Im guessing she also happens to have the "current thing", which is POTS or maybe long covid. I mean, what are the odds?

Also, I have on several occasions got out of my wheelchair and gone ice skating and then got back in my wheelchair afterwards

Not because I want to identify as ill. Not because I think it's fashionable. Not because I want pity. Quite the opposite. Because I just want a few minutes doing an activity that made me feel like old me... The person I was before I get ill. I love ice skating. DH and the children know I love it. So a couple of times a year we go. I rest beforehand. Then use the wheelchair to get to the rink. Then skate, feeling the joy of an old hobby, until symptoms begin to appear (and sometimes pushing through them because its just so lovely to skate again). Then get back in my chair to get back to the car and once we are home I know I will have to go to bed but it will all have been worth it for just that little bit of time on the ice

So Ms Stock can come and spend a week in my life if she likes. Spend a week knowing that it you talk too much or walk too much you can end up on a ventilator in ICU. Then think again about whether to get sniffy and judgy about someone getting up out of their chair to walk or even skate.

Indeed.

And people dont seem to understand or care than many fluctuating conditions hit women far more than men

Also I know a few young men with my condition and they all refuse to use wheelchairs even though that means either being housebound or risking constant serious /dangerous flares. There's a far bigger issue of people not feeling able to embrace supports . The people who stay home because of fear of judgement at being an ambulatory wheelchair user are invisible. I spent so many years housebound for big chunks of time before investing in a wheelchair. No one was wringing their hands about that

I had a a similar ISH experience as an ambulatory wheelchair user and I don't doubt I faced judgement from the people who witnessed it

I was on a weekend away with my son and a lift wasn't working so I got out of the chair and he had to carry it up the steps (thankfully it's very light weight - carbon fibre) and I walked up the steps. I could see people staring and judging.

I have no pain and no visible issues with my gait

What they don't see though is that this effort meant my double vision became so bad I then got an ocular migraine and was projectile vomiting in the hotel room..and they dont see that we had to spend the rest of the day with me just lying in bed because I could lift my head up.

Wheelchairs are bloody expensive and a pain in the arse. But the alternative for me is to live a desperately limited life.